Purple Prose Blog

Since my brother was told he had pancreatic cancer. I have been wearing purple ribbons, and t-shirts about pancreatic cancer. It is amazing how many people stop me and tell me they lost someone to this cancer or their love one is still fighting this cancer. There is just not enough advertising for pancreatic cancer.I want everyone on this blog to know my heart and prayers are with them! Remember we are not alone in our struggles.

Linda

I lost my wonderful husband to this awful cancer he was 56 years ols and leaves behind a 14 year old daughter. I can not imagine life with out him. His only symtpoms was back pain well back pain goes hand in hand in the construction industry so we blew it off and he went to a chirorprator who finally told us that this is not just back pain and he sent my husband to our family physician and a CT scan was ordered that was on 10/26/09 they found the tumor the size of a tangering on his pancrease and it had already mastisized to the liver and lymph nodes he was given 3-6 months he passed on 2/4/2010 just 3.5 months later. I feel cheated we had so many plans for our future.

Kris

My father survived this disease for almost 5 years.  He believed that treatment was the right thing and he was able to have the Whipple surgery.  He belived in fighting and not giving up.  We got to have him almost 5 years after diagnosis.  We all know how amazing that is in itself.  While that time was cherished, we had to watch him slowly pass away.  Sometimes I can talk about him and laugh and smile, but other times I cant bear the thought of him crossing my mind.  There are still times at night that I cant fall asleep.  Although I am grateful that I was there with him when he passed, sometimes I wish I didnt make it.  The memory of that day plays in my head over and over.  I had to say goodbye to him as I watched tears rolling down his face.  My family and I had to let him know that it was okay to go, but we knew he didnt want to leave us.  I believe that time does makes things easier to bear, but you never forget what cancer can do to someone both physically and mentally.  I am thankful for having such a close strong family because I couldnt of made it through without any of them.  The real reason for me writing this is because I want people to know that there is hope with treatment.  There may soon be a cure and it could be for you.

My brother has pancreatic cancer. His has the rare form from the islet cell. The Oncologist say they don't do treatments for his type of pancreatic cancer. The doctor who preformed the whipple procedure on him, said it would be back. I am just so Confused about this cancer and why they would just let him live without trying to do research or cure this cancer. It seems like they just want to wait and see where it comes back. My prayers are with whom ever has this cancer and their families. May they find a cure for this.

Linda

My brother has pancreatic cancer. His is the rare form from the islet cell. The Oncologist say they don't do treatments for his type of pancreatic cancer. The doctor who preformed the whipple procedure on him, said it would be back. I am just so Confused about this cancer and why they would just let him live without trying to do research or cure this cancer. It seems like they just want to wait and see where it comes back. My prayers are with whom ever has this cancer and their families. May they find a cure for this.

Linda

At this moment, I am here with my mom in the hopsice care center, holding her hand as she is dying from pancreatic cancer. She has been here a week and a half now. She hasnt eaten or drank in weeks, she's been in a coma 4 days now. She has suffered so much, so much pain. She was diagnosed in November, and it was already so far progressed there was nothing we could do to stop it. It is February now, she only got 3 months. I can't imagine life without my mom. We had so many plans. She's so young still. I'm so angry and I can't fix any of this.

Laura

heartbroken daughter of Sherry

It has been 10 years today that my wonderful mom was taken by this horrible disease.  The worst part about PC is that you never have time to fight like other cancers.  I was the last of 4 to get married and my mother was so happy!  One month later, she was diagnosed after many tests and given 6 months to live.  She refused treatment as they said her quality of life would not be great.  I also discovered that I was pregnant with my first child.

She is the stongest most beautiful soul and I had the privilege of calling her my mom if only for 26 years of my life.  She never complained about the pain once even though we knew she was suffering.  She put us first her entire life.  We did many things with her when she felt well and will always treasure those moments.  She was born in Ireland so we all took one last trip with her.  If you are given any time with your loved one use every minute as you will always remember those times.

My mom did not have the opportunity to meet my children as she passed while I was still carrying my daughter.  My children feel like they know my mom as we always keep her memory alive.  I am not going to lie.  The pain is so hard but it will get a little easier and you will be able to laugh and cherish moments from the past.  When my daughter was born it was so difficult to not share that moment with my mom and my heart was broken.  I now realize that my daughter was a precious gift from my mom and her smiles and love helped me and my sister cope with losing her. 

I miss her everday but love that I still feel her presence around us.  I feel comfort telling myself that she is being rewarded in heaven and I will see her again one day.  I too wanted to turn my back on faith.  I realize now that the faith my mom taught me is what helps me to get through missing her.  I still cry after 10 years but as she used to say "it is ok, sometimes you just need a good cry!"  I love and miss you Mom!! 

a loving daughter...

How to even begin. About a month and a half my nina was told to pretty much go home n let this disease take its tole, that there was nothing they can do for her. It was the biggest shock to myself and my family. So as any other family we took her for another opinion, n she was told there was hope. From there we went to her third opinion and according to them there was no nothing that said she had indeed had cancer.So right now my family and I are waiting for results to find out whats the next step is. We are still hopping and praying for the best. So pretty much what im trying to say is never give up, there is always hope. HOPE FOR THE BEST.

Please keep my NINA in your prayers.

Love your godson Michael,  L.A   CA

My brother was diagnosed with neuroendocrine neoplasma pancreatic cancer at the age of 46. He has had the whipple procedure. He has drop weight  very rapidly.  I have read the stories here and know that I will be facing life without my brother, but I'm hoping and praying it will be a long time from now. This diease needs to be made more public than it is. I have been wearing shirts with purple ribbons on them and it is amazing no one knows what the purple is for, the only one most people know are the pink for breast cancer. Please keep my brother in your PRAYERS and HOPE he is cured.

Thanks,

Linda

Dear Devestated and Needs a Good Story,

      In December, it will be 2 years since I lost my mother to Pancreatic Cancer. I am 27 years old. Every day that passes, I miss her. Every milestone I meet, I cannot fully appreciate because she is not here to see it and celebrate with me. I try, but there is always a void. My brother recently got engaged and all I could think about was how my Mom won't be here to see my brother and Nicole finally get married. And then it reminds me of how my Mom won't be here for my wedding either or the birth of my children. She won't even get to meet the love of my life because I haven't even met him yet. When I got my first apartment, I cried curtain shopping because I didn't have my Mom there to help me pick them out or even see me on my own. When I bought my first new car, I couldn't show my Mom. And I didn't have her there reminding me how hard it is to keep a white car clean and to get it in a different color. (Which I now know) lol.

      All I have of my Mom are 25 (mostly adolescent) years where I was unappreciative of her advice and took her presence for granted and 8 months of a quick growing up while I had to take care of her while she lived with and died of Pancreatic Cancer. There is nothing I wouldn't do to have her back so I can get to know her as an adult. As a friend.

      I do take solace in the memories that I do have with her and they bring me lots of happiness believe it or not. You have to do the same! Build the memories you want to have when they are all you have left. Take advantage of the time you have together and make sure your son knows his grandmother. Take pictures, ask questions that you want to know. Listen to stories. Become your Mom's best friend (if you aren't already). Be happy that your son knows his grandmother and she got to see him. Enjoy the help she gave you with your first child and apply that knowledge to next.

      I'm sorry that you and your family have to go through this, it isn't easy and there are rarely good stories. Every night I pray for the day that a Pancreatic Cancer  diagnosis isn't the end all. Every day I am grateful for the fact that my OCD came from my mother and my road rage came from my mother and loud cackling laugh came from my mother. It's all that I have. But it's everything becuase it's what she left me. You have to look at it that way or it's too easy to get lost in the grief.

      I wish your Mom the best! I will pray for her and for you. I believe in the power of positive thinking.

Theres is no difference to the story that statement time heals all wounds isnt shit.. sorry for my expression I seem to be getting worse reality setting in..She's not here and I am so alone I have children who love me dearly and a new husband who adores me.. but I feel like a very lonley woman ... I Love You MOM and miss you more than words can say!!!!!

Linda

Its true what they say; the pain gets easier with time. I think of you everyday, I don't cry as often and things are becoming a little clearer.

You know I have been wondering for these past 7 months that you have been gone, why did you pass in my arms? and just tonight I finally understood. That was your last gift.

After been surounded all day by family and friends you waited until we were alone to say good bye before you left. I will never forget the look in your eyes so deep and profound or the tears that started streaming down your face just before your last breath.

I know understand you where just waiting for the right moment; just you, me and God together as always. May God keep you in his book of life mom and may I be blessed to see you again. I love you!

Mari

I lost my mom to pancreatic cancer 3 years ago.  She had been diagnosed in june and died in August.  We had so little time to react or adjust.  My mother was 88 years old and I 56.  Well you would say they were not kids.  No we were not.  But the pain, heartache and leaving one another wes heart breaking.  It is 3 years later and I am still sorting through her things.  I touch them all with love and recall her using them.  It hurts terribly. The heart is not comlpete.

For the younger girls that have gone through this I feel so badly for you and your mothers.  We were older and new something had to happen.  Why this???? The pain gets better and less intense, but you will never forget.  It is with us, where it should remain.

Rhonda

The only words of support I a can offer is spend as much time as you can with your mom and try to think of positive things.  Don't focus on the cancer just try and talk a lot and laugh a lot.  My sister had pancreatic cancer and it was devastating but I had 18 beautiful months with her. I flew back and forth to Florida every month and stayed for a week or two. They were not always easy but I treasure every one of them now because I was with her.  In the hospital we had a lot of laughs about the food and the help. Once I was in the bed next to my sister and the nursing assistant came in and wanted to take my blood pressure.  My sister laughed so hard and we joked about how she was in a hospital who didn't even know who was the patient and who wasn't.When  she went to chemo we also had a good time because I always went and got the best tomato basil soup from the cafe downstairs that my sister and I loved and always looked forward to.  Then I ran across the street to get us our favorite Starbucks.  These may seem like trivial things but as I think back now, they were great memories.  I can see her face as we ate the soup and just kept saying "this is amazing soup".  So don't think of the outcome, you may have many more wonderful months, maybe years.  So don't give up on mom, just stay by her side and listen to her and laugh with her because those are the things that will help you through this.  My sister has been gone for almost 11 months and most of my memoires of her are of that 18 months we spent together.  I hope this gives you some comfort.

   Greetings Everyone,  My name is Dr. Reid and I lost my Grandmother to pancreatic cancer back in 1999.  I was the one who told her that she had pancreatic cancer.  All she wanted to know was if her children knew.  I told her yes and baring some miracle from GOD, she will be back because medicine does NOT know who to cure this disease. I told her that I wanted to GO with her because this World held NOTHING for ME and she said that I could NOT!  I, further, told her that she won't see ME become a doctor.  She told ME that I am already her doctor.  I then asked her that when she dies and if she could come back to see ME that she does.  She said, "o.k".  I watched as my grandmother, "MA" as I called her walked out of that hospital to the amazement of the doctors.  I was also so HAPPY that I was there when she left this Earth.

     My MA has been back to visit ME just like she promised ME that she would do.  I want all of YOU who have experienced this pain to know that if you only believe you will find that your love one has NOT left you, only transformed as my MA did so many years ago.  I miss her to this day but I know that she is with GOD and she is HAPPY and so am I.

God Bless YOU ALL.

I've created a web page in hopes to raise money for a cure for PC. My uncle passed away from this deadly disease April 10, 2009 and it's very hard to get over a tragedy of loosing a loved one to such a disease and the nightmare he went through is truly unforgettable.  Every dollar helps. www.lustgarten.org/asonbrotherfatheranduncleslostbattle 

Thank you all sincerely, Brittany L.

I read your letter to your Mother today and truly feel your pain. I lost my Mom to PC in 1997. The diagnosis, disease and her death were devestating as you well know. I wanted to let you know that you WILL begin to heal.  I remember being so fragile and emotional that first year after her passing. I was 26 yrs. old and my friends were getting married in the months after her death.  I was crying constantly knowing she would not be there for these events in my life.  I had anger and bouts of immense sadness. Slowly, I began to heal.  I can still remember the first time I caught myself laughing! More laughter and less tears eventually followed.  Healing takes it time. Your loss is still so new.  Staying busy helped me as did writing my feelings down. I am not over the loss of my Mother but my life is good.  This awful disease is merciless and cruel. It took my uncle and grandfather too.  Stay strong for your children and for yourself.  I felt the same desperation youfeel and I just wasnted you to know that it gets easier over time.

Peace, Amy

I feel your pain and wish I could just hug you and take it all away.

I'm sure that your mom is with you all the time. She is in your heart and always will be. She will not let you fail.

Your husband and your children need you. Your mom will guide you, just let her in.

You have to give yourself more time to grieve. Look for a support group in your area and make it a point to go. Don't just listen, speak, out loud. Take the time for yourself to do this. It will help.

May God bless you and guide you during this difficult time. Don't let your faith be broken. 

It will be four months since your passing on July 7th.

I am still waiting for the pain to subside.

 Grief Counseling is over and once again I am all alone to deal with the pain. Mom, I am trying so hard.

Nothing gives me happiness anymore. The girls are thrilled I am home this summer taking care of them, I make sure they have fun, I hide when I cry but I am so empty inside.

My marriage is falling apart, I am so sensitive to everything and everyone. I don't know what else to do; medication - done, counseling - done, prayer - done, ...what else can I possibly do.

I am constantly exausted, can't sleep. Keeping super busy won't help....what now.

 I NEED YOU!!! Mom I miss you sooo much, I am not ready to let you go. Who am I without you near me??? I want to make you proud but I feel like such a failure.....

I MISS YOU!!!!

MY LOVE FOR YOU WILL NEVER END!!!!

For always with you,

Mari

Your touching story hit so close to home for me in many ways, my husband past from pancreatic cancer.

The last thing my husband was able to say to me was also "home". After he pasted away I was telling his mom and she told me that he was letting me know that he was ready to go home and be with God. Although your grandmother was not able to take him to the place he lived (home), he is at home with God, pain free and guiding all his loved ones.

I recently lost my uncle to pancreatic cancer on April 10, 2009 Good Friday. In early July 2008 he woke one morning feeling sick and his skin was yellow, his son brought him to the emergency room to later find out, after tests were taken, that he had pancreatic cancer.  They decided to try surgery to remove the tumor, which was not a success and that's when doctors found out that the cancer had spred to the lining of his abdomen. For six months after surgery, he was in all kinds of pain on his left side, which doctors insisted it was feces. After tests and scans, they did not see anything in this area he was having pain. Then when they decided to do a scan to see if the tumor had shrunk after chemo treatments, they discovered something odd in the picture. The doctors who had done the surgery had left a ten inch long stainless steel flexable tool inside of him!! So they surgically removed it, took another look at the tumor and it was still too risky to remove it. He continued treatments of chemo, until march 13, 2009 when my grandmother took him for treatment and asked the doctors if there was anything they could give him to increase his energy because he hasn't been eating for a few days. That is when they addmited him and hooked him up to a nutrient pack and pain medication for the stomach pain. While in the hospital, things progressively got worse, his belly bloated and he was vomitting every day, that's when they put a tube down into his stomach(which remained there until the end) to remove the excess fluid that was building up. From being on Morphine he was in and out of it here and there. He went from weighing about 180 to about 90lbs. since this all began in July of 2008. My grandmother was by his side from the start, always taking him to doctors appointments and making sure he ate when he could. She spent all day every day in the hospital with him by his side as any loving mother would do.  Every weekend I would be there with them, and every chance during the week as well. He had plenty of visitors, old friends, family, and girlfriend. He had three sons, ages 21 and 20. (two are twins) They took it pretty hard, but in the end they are strong and have the support of all their family and friends. One of the last times I can remember him alert enough to talk, he said to me, "when you come back, you're going to be a dove"  he then looked at my boyfriend and said, "their taking my baby from me" what exactly he ment, I don't know, maybe it was the pain medication talking, or he had actual meaning behind it, I don't know. The one thing that hurts to think about is that one time he was trying to say something to my grandmother but couldn't get the words out, and she said "what is it, what would you like"? so instead he said "home" she said "you want to go home". and he shook his head yes, all she could do is hold his hand and say, "I know".  Some people become accepting of the fact that their dying, but sadly, he was not, and was very angry all the time. He did say one time to a friend that if you don't have family, it's much harder to deal with it all. He knew we all loved him and cared very much about him. On March 10, My grandmother went to the chaple in the hospital and she said she asked God to just take him already so he's no longer suffering, because at that point it had been days since he was awake and alert. About an hour after that, she and his girlfriend were in the room with him as he slowly stopped breathing. She felt relieved as well as everyone else that the pain and suffering was over. He will be greatly missed by us all. We will never forget "Wild Bill" 1956-2009

Love you always your neice Brittany

Dear "Loving Husband",

It was so good to read your post on here. I too am a survivor of pancreatic cancer. I know your post if a few months old, but I didn't even know of this website until I saw a commercial this weekend. If your wife or even you ever wants to talk I would welcome it as in the 3 yrs I am a survivor, I have yet not found any support groups for those of us that survived. The support groups I have found are geared more towards pancreatitis and such, and therefore don't really help too much. There is a great cancer survivor group in my town, however, every other member is a breast cancer survivor. Upon reading your post, it seems like with the exception of the Whipple (of which I was not a cancidate as mine was on the tail section), it seems Deborah and I had almost the same exact surgery with the same organs removed, etc. It would be awesome to actually talk to someone who has gone through the same thing and find out if she has the same problems with diet, etc. and what her docs say as far as follow ups for the future.

If you do pop back on here and read this, please respond to me here and let me know if you'd like to chat. Again, I would love to be able to talk to another survivor!

-Jen

My Dad was diagnosed with pancreatic cancer on November 21, 2008. The whole family was devestated. You see because dad always suffered with high blood pressure we taught that he would die from either a stroke or a heart attack.  When I received the news it hit me like a ton of bricks I asked God why it had to be pancreatic cancer. I took 2 months leave from my job to take care of my dad. I watched my dad go through such a dramatic change my dad loved to eat and everyday it was painfull for me to see him eat such small portions and still at the end he would bring it all up again. I got vey angry at God y I am a christian and I believe that God might heal my dad that did not happened my dad past away on April 11, 2009. I spend my time now thinking on him it's very hard for me because I had a very close relationship with my dad he named me after him and this Sunday is Fathers's Day and a very important person is not here for me to call and say hi old man I wish you the best day ever. It's hard because I can't stop crying I miss my dad so much I hope that one day there will be a cure for this evil cancer my dad used to weigh 175 when he passed he was weighing 90lbs.

Dad I will always love you because you are and will always be my hero.Happy Father's Day

Your daughter Toni

It was three years ago today that PC took my husband.

As many of you have said about your loved ones, he was a loving man who would do anything for anyone.

Although I miss him with all my heart, I feel him around me all the time. I will see or hear something that will remind me of him. Then I laugh at the memory or cry depending on the day and the mood I may be in.

As hard as it maybe for me, I know his suffering is over and that is a blessing for him.

My heart goes out to everyone touched by this horrible disease.

May God bless and comfort you all!

Dear Mari,

I know how hard this big step was for you, but good for you. It is the first big step in coping. I am sure your mom was right beside you, feeling proud as ever. Before you know it, you will be an inspiration to others. Everyone has their own way of dealing with the pain of losing a loved one and I hope this will not only help you but guide you.

On 1-3-08 the man who has my heart was diagnosed with pancreatic

cancer stage 4. Total shock.

He passed to heaven on 2-10-08 after a short but terrible

bout with this killer disease. He was only 56.

Our daughter,Jennifer is left with me to remember the wonderful

times and all the love Andy gave us.

We shall walk again this year for Andy and all those other

people who share our grief.

A cure must be found.

Dear Mom;

Yesterday I went to my First support group meeting, It was Hard!!

Just having to walk into the funeral home was devastating, it only made your loss so much more real.

While there I felt the need to speak up and tell our story, you won't believe what happened next, mom everyone was crying.

They actually felt my pain, it was so comforting to see.

Mom I cried hard on my way out I couldn't stop; I guess It was probably to soon.

But don't worry, you know I don't give up easily, I will go back!

I Love You,

Mari

I don't want to sound rude, but the only statement in your post that made any sense was to try and keep busy after a loved one dies. We all know that once our loved one passes away they are not coming  back, and being told that wouldn't  and didn't make me feel better. 

I lost my mom and sister also. I gotta tell you, I loved my mom more than anyone, my mom was the best. And just because I went thru losing her, didn't make it any easier to lose my sister. I actually took my sister's death worse than my mothers. My sister was only 47 and she lived right around the corner from me. My niece & nephew have no mom now. Mother's day is horrible for them.

So yes, time helps, but it's not the only thing that will work.  Until time passes, counseling, talking, writing, listening to (most) other people will help

What can I say that has already been written.. This has been the hardest year for me takining over th e role as (MOM) for my 2 hanicap sisters and still grieving on my own.. there is not a day I shed a tear cause you are my best friend.. I told this to my husband but it is true for you also MOM  I carry you heart in my heart  because you are my heart.. right now it feels so broken.. I hurt so bad it seems to be worse than when she left me.. I guess it is realitly.. well on april 23rd 2008 she was told she had pancreatic cancer and would not live pass six weeks and to the day on may 27th 2008 she lost her fight..Tuesday to Tuesday.. I hate Tuesdays.. Well My MOM rest in peace I will see you again I miss you with everyting I have.. My body aches for you.. LOVE YOU VERY MUCH!!!!!

Your daughter always....LINDA

Mari:

All the words of advice are true.  Although you wonder when the pain will ease, trust us all...it does.  For many years I was so afraid of losing my Mom.  I told myself I would not know what to do without her.  I was truly freightened.  I learned to go on.  We have no choice.  I attended a support group through hospice for adult children.  We were approx. 6 women.  To my surprise I was not alone.  They all felt as miserable and heart broken as i did.  We were all there for the loss if our mothers.

Of course, i miss my mother to this day.  It will be 3 years.  I think of her daily, kiss her photo and write little things in a jornal, as if speaking to her. 
It is strange and I do not know why or how, but it does get easier.  It takes along time, 1 may be 2 or 3 years.  Do not panic, the memories will always be with you, but somehow we learn to go on.  I would tell myself my Mom went on when her mother passed away.  And so it goes.  It is hard for all of us.  Everyone should learn to appreciate our loved ones while we have them close.
Rhonda

To all have lost a love one:   I'm sitting here reading all the stories of the loss of everyone's loved one and how everyone is trying to find out how to stop the pain.  I lost my dad and then my mom.  For many months I was looking for something to take away the pain and make me feel better.  I sought out bereavement classes, clergy etc.  It wasn't until a hospice chaplain finally told me that nothing is going to make me feel better.  My loved one is gone and the only thing that will help is if they were here and that is not going to happen.  Ironically this helped.  I stopped searching for something that would take away the pain and started realizing the only thing that eventually helps, is time.  This is the first mothers day I actually didn't thing about my mom because now Mothers Day is for my kids to do something nice for me and its about me and not "my" mom.  I think of my mom all the time but I didn't on that day.  I just recently lost my sister and I think it was easier than when my parents passed away because I knew what to expect.  I knew the excruciating pain I was going to feel and I also knew it would get easier. My sister use to say "It is what it is" and she was right. All you can do is keep busy and have lots and lots of your favorite pictures around (it helps).  So my advise is don't look for a quick fix for the pain, nothing will take it away.  Just try and get through everyday and spend more time with friends and family and keep busy.

We don't have a choice because life goes on without your loved one, whether we want it to or not .  Remember, you'll feel a little better each month but the void will always be there but you will be able to tolerate it.

It's so hard to tell you what to expect next. You will go thru a wave of emotions for a while. I promise you it will get better. Be proud of yourself for handling it as well as you are now. It's devastating to lose your mom, your best friend. I know trust me, I've lost my mom & then  my sister.  I truly thought  I would lose it and after my sister's death and I almost did.

You may not want to hear this, I didn't at the time either but have you thought of going to a support group. Only people who have lost loved ones can really understand what we are going thru. I ended up going to counseling. Because when my  my sister died, my husband left me, so to tell you the truth I had so many issues going on I wouldn't know which support group to go to, depression, divorce, the lost of a love one? haha

See, I can chuckle about it now, but My God I was so going thru so much. One day at a time. That's all we can do.  It sucks but time is what we need.  Some days I cry for my sister like I just lost her yesterday, and other days I can think of her and smile. It took me years before I could watch my mom on video, to this day and it's almost 3 years my sister will be gone, I haven't watched a video with her on it. I'm just not ready yet. Keep talking, keep writing, it will make you feel better.  Feel free to email me at erogow@optonline.net everyday if you want.

Eileen

Dear Rhonda and Eileen;

Thank you for sharing your story with me. I am so overwheled with emotions since  mom's death; grieving is more difficult that anything I have ever gone through. I truly hope I can better deal with this soon since it is taking a big toll on my home life. My daughters (12 and 6) and husband are really trying to understand and support me, but I can see it gets harder for them as the days go by.

My heart hurts so bad, I can't find joy around me. It will be three months on June 7 and it seems to get harder instead of easier as the days go by. Is this normal?? Dear God; I miss mom SO much!!

What happens now, What is next??

Dear Mom:

It has been 2 1/2 months since I lost you and the pain seems to get worse with time. I had a really hard day today; I really wanted to talk to you about your upcoming trip home. I can't seem to be able to grasp the fact that you are no longer here with me. The pain is unbereable, my heart feels so empty. I know you didn't want to leave and trust me I would have done anything to still have you with me; I am soooo sorry you had to go but please know you will always have me. I don't know what to do to ease this pain and this feeling of uselessness; I know I did my best but somehow its still not good enough for me. Mom; what am I going to do with out you? My girls miss you, Anthony misses you and I am engulfed in complete sorrow. Please help me deal with this pain, it wasn't supposed to end like this for us, for you. YOU DESERVED SO MUCH BETTER!!!! I love you and miss you terribly.

Mari

I know honey, It hurts sooo bad. I lost my mom when she was only 62 (not to this disease.) But I lost my sister to this horrible cancer in 06. She was only 47 years old. Hurt, Anger, what could I have done, are all normal questions and feelings. I still miss my sister terribly. It's so unfair my niece and nephew have to grow up without their wonderful mom. It sucks!!!

Like I told Chad on this site, anything thing I can do for you, please feel free to let me know. I'm here for you.

Eileen

It didn't sound selfish at all to want to be with your dad at the time of his passing. It only sounded like a son who loved his dad very much and wanted to be with him. You are going to go thru alot of different emotions. Our loved ones are at peace and unfortunately we are the ones still suffering. But remember the people who have gone thru this are here for you. If you ever need words of support or just need to vent please do so. I'm here for you.

Eileen

Thanks for the kind words and support.  I know that it must sound selfish of me not to have been with my father before he died and maybe its a normal feeling that will pass in time.  I realize that he would not have wanted me to see him that way.  They told him I was on my way home before he passed and he gave the thumbs up.  I also am happy that he didn't have to suffer through any more pain and that he went peacefully. 

Chad

Mari:

I lost my Mom Aug. 2006.  She was diagnosed in June '06 and also only survived a few short months.  When she returned home I saw her every day.  Two - three times a day I would go to her house.  I could not face it, the truth that she was dying.  My best friend, my Mom.  It has gotten easier.  Time goes by and I can hardly believe she is gone 2.5 years.  Most of the time I am okay. I think about her often, but I have gone on.  When she passed away, i did not know what to do with my life and time.  Eventually it comes together.  There are days, like this weekend that are very difficult.  At times I shake my head and cannot believe she is not here with me.  I wonder, how did this happen? How could I not know enough to help her?  So many questions, and so few answers.  It is a terrible disease .  I miss my Mom too.  I can still hear her words and  advice.  Now I miss them so much.

Rhonda

I can't believe it will be two months since we were together last. It has been extremely hard for me to understand how someone so active and healthy like you could have been consumed so fast. Everytime I blink all I see is your pained face and everything I hear sounds like you gasping for air. I don't know how to survive this pain. Not only are you my mom but also my best friend. I hope that in those 2 1/2 months I cared for you, I was able to show you just how much you mean to me. Every morning I start my day with you in my mind and every evening ends the same way. You are such a big part of me; I don't know how I will ever deal with not been able to listen to your caring voice or not been able to kiss or hug you again. My heart is so full of anger and frustation. I trully believed that all my efforts of caring for you and loving you would save you. My heart is broken, I am so lonely without you. I LOVE YOU SO MUCH!!! Please stay with me forever.....

Your loving daughter,

Mari

Mom: Diagnosed 01/02/09- Passed Away 03/07/09

I just posted the story MY SISTER, I just wanted to tell you, I am a mom of 3 sons. One who is in Iraq right now. So PLEASE LISTEN TO ME. I know you feel horrible you were not there for your dad, I know you feel horrible you were not there when he passed away. But being a parent, and being a sibling of someone who passed away from the same terrible disease as your Dad, I'm telling you as wonderful as a man as you described him, he would not have wanted you there. He wants you to remember him the way he was before he was sick, the way you described him in your post. Don't you dare let your last memory be that you couldn't be next to him when he passed away. A quick story, My mom was only 62 when she passed, (11 years ago)she was in the hospital for 6 weeks in a vegitave state. There was one of us from the family with her 24/7. I left and my sister was on her way. Chad, there was only a 20 minute lap. My mom passed away. Parents know. My mom didn't want any of her kids or my dad with her. She must have known  it would have been too much for us. I didn't know your dad but what an amazing man he must have been for look at the son he has left behind. A son who protects his country, A son who loves his father, A son his father was proud of.

God Bless,

Eileen

I wish I would have found this site 3 years ago. My sister, my best friend was taken by this monster pc on Aug 28, 2006. On May 8th she would have been only 50 years old. There are now two more children in the world left to grow up without a wonderful mother. Like so many stories on this site it was a nightmare. When we finally forced the doctors into more tests telling them there is something wrong, they saw something on my sister Marie's pancrease. They said it was old scar tissue. They even took a biobsy. Everything came out fine, until Marie kept getting sicker. Can you believe they ended up telling us they didn't go deep enough for the tissue for the biobsy and of course it ended up not just being scar tissue. I'll never know if my sister would still be here like one of stories on this site states, I still thought you couldn't live without a pancrease. But like everyone on this site knows, watching your love one die from this horrible disease is, well there are just no words for it. But to answer a question from one of the posts, does time make it easier when you lose someone or why does it seem that time makes it worse. It was about 1 year after I lost my sister and so much else was going wrong in my life and it felt like I had only lost her yesterday. So it's normal to feel that way. These sites, counseling, anything that makes you feel better do it. Sometimes not thinking at all, just for a little while helps too. We'll make it through, all of us will. Remember, our loved ones would want us to. There's a beautiful song that's  called Sissys Song sung by Alan Jackson.

My father and best friend died March 26, 2009 just two days before I made it home from Iraq.  He was diagnosed in October of 2008.  My father never needed very much or wanted it.  He always cared for others and always put his family and friends needs ahead of his own.  He was the most unselfish person you would ever meet and would gladly give you the shirt of his back.  He volunteered his time officiating youth basketball and football.  He loved sports and I will never forget talking to him for hours about anything sports related.  He was so proud of both my brother and I.  Both in the military.  His eyes would light up when he would tell stories about us.  He has two beautiful granddaughters that he loved to keep and watch whenever he had the chance. One of the last conversations I had with him while overseas was him telling me that  "You are on your second tour in Iraq and your old man is scared to go the doctor."   He had started having back pains and stomach pains for about 6-8 months before he even went to the doctor, but it was already to late.  He went through 4 months of chemo.  Then his next pep scan revealed that the chemo had not only not helped but that the cancer had spread.  I wasn't even home but I can't imagine what my brother or anyone else that was around my dad was going through.  See he never told me on the phone because he didn't want me to worry.  He never would let on how much pain he was in to me cause he was once again putting my feelings in front of his.  He just kept saying "I'm gonna beat this."  I love you daddy and I miss you so much

Love, Chad

 I urge anyone that has Pancreatic cancer to recent the recent developments in treating it with LDN (Low Dose Naltrexone at 4.5 mg/day). Lots of info at www.ldninfo.org and www.lowdosenaltrexone.com ,or just Google  LDN. I have read many patient histories of cancer patients recovering/stablizing after taking LDN, for all types of cancer including PC.(also autoimmune diseases like R.A.,Lupus,and neurological ones like MS etc

This is cheap "patient driven" drug, that is getting more and more exposure, as anual LDN Conferences are held every year in the USA, and now in Europe, as doctors and patients ,and pharmacists are coming forward. The latest LDN Conderence was held in Glascow Scotland last SAT.April 25/09. The latest conference in the USA was held in USC in OCT2008, which you can listen to on Youtube (Google... LDN08 Conference).

  MY AUNT BRENDA JUST PASSED AWAY THREE DAYS AGO DUE TO PANCREATIC CANCER, THIS MONSTER KILLED ONE OF THE MOST DEAREST PEOPLE IN MY LIFE. I AM A NURSE, AND I TOO DEAL WITH CANCER ON A DAILY BASIS (COLON CANCER TO BE EXACT) MY AUNT'S ELDEST DAUGHTER IS TO BE MARRIED IN NO LESS THEN 5 MONTHS, SHE WONT SEE THAT, SHE WONT SEE HER GRANDCHILDREN EITHER, AND SHE WON'T GROW OLD WITH HER ONE TRUE LOVE. IT SICKENS ME, AND ANGERS ME AS WELL. I WISH THERE WAS A WAY I CAN FIND A CURE AND KILL THIS MURDER.

ANTHONY R.N

I have never posted here.  My father died March 27, 2008 he was 57.  I think about it constently, all his pain and suffering.  I think about how scared he must have been,  even though he put on a brave front and wouldn't show it.  He never dicussed it and I know he held a lot inside and hurts me to think of him in pain and scared and never expressing that.  I miss him so much. He died almost exactelly a year after his diagnosis and it was a year of pure hell.  In the end nothing relieved his pain and eventually he was on so much morphine and methadone he was in a sedated state pretty much on and off.  I am so angry, it's not fair,  no one should have to suffer like that.  I have been trying to put it out of my mind for the past year, almost like I am in denial, trying to distract myself from thinking of it and not crying in front of my 6 year old.  Lately it getting harder now, I keep seeing his jaundice eyes starring back at me.  I keep thinking if I could have or should have done somthing differently, maybe a different cancer center,  maybe when the docs changed his regimen that was working I should have said no.  I don't know.  I just needed to vent.

Lauren

I am so sorry for your pain. It will get better. You never forget, but you will cope.

Try to remember the good times as I am sure there must have been many. It is ok to laugh and or cry.

Although it is difficult, remember that as a mother, she would not want to see you in so much pain and that she would want you to be able to move on.

I am so sorry for your loss. It appears that she was a very loving and caring person.

You know, I found this awesome picture of my dad and me, It was when he was sick and thinned out, but we look so much alike.  It has been 3 and a half years since I lost my Daddy to pancreatic cancer and I can only now put so many pieces together.  The back pain, the stomach pain, the recent diabetes diagnosis.  It all makes so much sense now.  For my dad, it was long, slow and very painful.  We watched him suffer with back pain for about 3 months...the doctor sent him for physical therapy for his back...but never did any tests.  Then, the pain was so bad, he went to the er...whcih was where he was diagnosed.  He survived for almost 3 years before he lost his battle.  It was a tough battle, but he won for a long time.  I am grateful for the time we had together since I know so many are not afforded this, but his pain over those years was physically unbearable for all who were with him.  Last week, I heard an old college friend died from pc.  She had roughly 6 to 8 weeks.  Her children will never know their mother and it breaks me to pieces!!  It seems to be quite prevalent these days.  Why can't doctors do a regular check for this?  Why don't they pay attention to the signs?  I miss my daddy, so I look at our picture and in the mirror a lot...god...we look so much alike.

s

Well, it's been 1 year and 23 days since I lost my Mom to PC.  I haven't posted in awhile but I do manage to read the blogs every now and then. Unfortunately, still too many stories of loss. 

It has been a long year but one in which I finally realized that my Mom was no longer suffering and that she was "just fine".  The continuous tears have stopped, replaced by happy thoughts of the time we spent together, how much she loved her grandchildren and life.  I still miss her birthday cards, early Saturday morning calls and her smile & hugs.  But I am comforted in knowing that one day there will be stories of survival posted on the blog and more stories of hope.

Stay encouraged everyone and keep the fight against PC going.  Let your government representatives know that more funding is needed in the search for a cure. 

My mom was a 73 year old healthy woman until August of 2008 when she was diagnosed with pancreatitis.  She had so many tests down during and after her episode and nothing revealed that she had more than a pancreatitis that was being treated.  Three weeks later, she had a stomach bleeding and she had to go into surgery.  The doctor, with many years of experience, told me after 2 1/2 hours of surgery that my mom had made it, took her splint out and that his experience tells him there is pancreatic cancer and had requested biopsies.  Sure enough, she had pancreatic cancer with metastasis to her liver, stomach and intestines.  The doctor gave her 40 days and after 40 days she passed away.  There is not one day that I don't think about her and miss her and wish that I could speak to her only one more time.  It has been the hardest time of my life and seeing a loved one die in such condition made feel helpless. She was in so much pain, even though she had a pain specialist, and her weight was 50 pounds.  My condolences go to all who have, like I, lost a loved one to this horrible disease. 

I am so sorry for the pain that you feel after losing your mom.

One thing that I do when I feel sad after losing my husband is light a candle near his picture and talk to him.

With your mom so close to you in your heart, when you hear a song that your mom loved, think of it as a message that she is with you.

You will always feel the loss, but it changes as time goes on and you will be able to move on. We never forget, but it will get easier.

On the 14th of January i posted a story titled Our poppy.  A father in law to me, poppy to our 2 children, father of 2 sons and the husband of a 38 year lovely marriage.  I wanted to update this posting for those who read this site.  After the 14th of January Poppy fell very ill and after being diagnosed that day with Pancreatic cancer which has spread to the liver his eating went very small and then on the 1st Febrary he suffered a major stroke.  On day 2 of the stroke he could understand what the family was saying but could not respond.  I guess in the end he did not suffer the illness and pain ahead that he was to go through.  He fought till the very end and sadly passed away with all the family by his side.  What a wonderful man he was.  Everyone who crossed his path felt honoured to have known him.  We all miss him everyday and will continue to have his memories in our everyday life.  RIP you great man....

For those who are going through this illness with your loved ones all our love to you XX Tasmania, Australia 

I feel so much as you do.  My Mom's birthday was March 12.  She passed away Aug. 18, 2006.  Her, birthday, my birthday, an imprortant hoildays are difficult days for me.  I also think what did we do 3 years ago, where did we go.  Most certainly it was together.  I also miss my best friend and Mom.  Some days, for no apparent reason the day is more difficult, more memories and more tears.  I visit the cemetary on your birthday and I will also on mine.  not to mention other days throughout the year.  We always spent time together on those days, so I feel we still should be as close as possible even now.  I love you Mom with all my heart.  You and I are always together, one way or another.

Rhonda

well Mom your birthday has passed on March 7th and that was a hard day you were here last year and we went to yur favorite restuarant.. this year we celebrated alone.. Then on March 17th my birthday I waited for your 12;01 phone call that you did so many years you wanted to be the first to wish me a happy birthday.. What else can I say I MISS YOU MOM and I really don't think time will change that..You seem to be more in thought than usuasl.. Maybe because we still haven't got to the 1yr. anniversary.. So now I'm still going on where we were last year you were still here.. Sometimes I'm angry ehy the good people die and the bad ones still keep going on... But what to be will be I LOVE YOU MOM more than words or actions can say...Till we meet again..............

Your best friend daughter

LINDA

My husband, Steve, was diagnosed with PC on October 7, 2005. His doctor attempted a Whipple, but the cancer had already spread to his peritoneal wall, so the operation was aborted. After he recovered from his surgery, he started chemotherapy on December 29, 2005. He continued chemo through December, 2006, when he had to go into Hospice care. He passed away on January 3, 2007. That last year we spent together was, strangely, the best of our marriage. We traveled to the Grand Canyon, Fenway Park and around Boston, Virginia Beach, and just generally around Cape Cod, where we lived together. We spent time talking, and just being together, as he fought through the chemo. He was losing weight the whole time, but in October, he started losing weight much more rapidly, and wasn't able to eat enough to keep ahead of the weight loss. He died at home, with me and his daughter by his side. I am grateful to have had the 15 months we had after his diagnosis, which I know is quite unusual. I am also grateful that he chose the Lustgarten Foundation for his charity, and that so many of our family and friends gave quite generously. I continue to ask friends and family for donations at Christmas, and I try to give as generously as I can, whenever I can. My knitting friends are also dedicating our annual "Knit In Public" day this coming June to the Lustgarten Foundation -- we will all be knitting purple squares for afghans to donate to PC patients.

Let's keep spreading the word as far as we can. It's not easy for us, as surviving family members, but it's so necessary.

At 5pm, this afternoon, 14th January, 2009 we received news that our friend, dad, poppy, husband has Pancreatic cancer which has spread to the liver.  My heart is aching so badly and tears fall down my face as i write this.  To think that this wonderful man's life and all around him is about to change from what we were doing yesterday.  This site has helped me understand this illness and can see that the road ahead will not be easy. 

Our friend is 73 years old and has been complaining over the past few weeks of back ache.  He had reduced his meals (only because he wanted to lose weight) and had managed to lost 30 kilos.  I said to him only this last Christmas how great you look and am so proud of you for losing the weight.  He said i know it's great but i don't feel well and i just can't eat.  After going for tests an ultra sound showed a shady area in the pancreas and 6 days laters was sent for a scan.  The next day (today) were the results we just did not want to hear.   I now understand all the times he said he was unwell. 

When i see him with his grandchildren he has a real twinkle is his eye for them, with life in general he has a real smile, always a story to tell and such a true heart to all who share his space in this world.  I just wish there was a cure for this illness so that these things are not taken away.  I am scared for him and loved ones around and hope that he does not feel too much pain.  We have to be strong through and pray for a miracle for our friend, poppy, dad, husband.  We just love you so much X

My wife Deborah was diagnosised with Pancreatic Cancer in April of 2006. The diagnosis was finalized after Doctors attempted without success a Whipple procedure to re-sect the impacted area of the pancreas. The surgeons for over 10 hours tried to separate the pancreas from the main blood vessels, however, due to her bout of Pancreatitis, the inflammation of the pancreas made the re-section to dangerous to continue. She was, from that point forward, categorized with a Stage III tumor.

This started an amazing journey, a journey that has since seen no end. With the support of an amazing team of Doctors and one wonderful oncologist, Deb was put on an aggressive course of Chemotherapy. Deborah, after six months of Chemotherapy, was doing great and during a break between treatments we were able to approach another team of surgeons that agreed to a second attempt at surgery. 

In February of 2007, Deborah was again underwent surgery.  I sat in the waiting room for 11 hours as surgeons, who I would recommend to anyone who ask, successfully removed her pancreas, gall bladder, spleen part of her stomach and small intestine as well as nine associated lymph nodes. Our prayers were answered when the pathology did not identify cancer in any associated organs nor within the lymph nodes.

Subsequently, upon recovering from the procedure, Deborah started rounds of radiation and chemotherapy to address any cells that might not have been removed during the surgery.

Deborah has been off intravenous chemotherapy since September of 2007, Oral Chemotherapy since September of 2008 and just this past week, had her port removed. 

As I stated a remarkable journey and a journey we are still writing. We realize that we were lucky in being able to address her cancer early and were blessed with great doctors. We also believe in hope and guardian angels.   Especially her brother David, who in 2002 succumbed to the very disease we battle every day. 

We wanted to share this story because with the Support of the Lustgarten Foundation there is HOPE. 

A loving husband

I don't know where to start, with my personal experience or my professional experience.

On July4, 2005 at 3:01pm, I watched my mom take here last breath after suffering from a 7 month battle with PC.  As the oldest sibling of 4, it was time for me to make a 9hr drive to NC to be with her. I had taking a family leave of abscene so that I would have some time to be with my mom.

I knew in January 2005 the urgency to get home when she sent me the Cat Scan results, but I didn't respond to the urgency as a normal person would.  By profession, I am a Diagnostic Imaging Specialist with special focus in Cat Scan Helical Scanning.  I see various disease processes all day long. Patients  from all walks of life, with different socio-economic, educational and financial disparities. 

I was only able to see her 2 days before she passed, but I will never forget the peace she displayed as I watched her cross over to a life far from what we have on earth know.

Lustgarten should consider selling the Sigg Purple water with a logo to help support there funding for PC research.

Purple for a cure!

I would like to wish Peace and Good Health to all in 2009!

Lets hope this will be a year of progress and possibly finding a cure for this horrible disease!

It is approaching 2.5 years that my Mom passed away from pancreatic cancer.  I dreaded all the holidays, her birthday and mine as well.  Somehow we manage to get through them.  I found the anticipatation was worse then the day.  However, you are correct and I agree these days that we are supposed to celebrate are just days.  The importance and joy is no longer there.  I think of her as we approch these days and certainly on that particular day.  I miss her deeply.  She was my best friend , my companion and my mom.  I love her and as i promised her the last few days we will always be together and always in my heart.

Rhonda

My husband died of pancreatic cancer Dec. 15, almost 3 months to the day of his diagnosis.  He was a healthy, vibrant, 75 year old who walked the golf course and rode a bicycle constantly.  Now I am concerned for my 3 children and my grandchildren.  We must, must make our representatives in congress aware of the terrible discrepancy in cancer funding, which leaves this deadly form of cancer woefully underfunded.  Please contact your senator and representative and make them aware of this situation.  www.Pancan.org has links where you can do this over the internet.

Barbara

This is the second time I have posted a blog on this website. I lost my dearest sister Pat to pancreatic cancer in July of this year.

My life just is not the same and I really don't expect it to be. Part of my heart died, when my sister died. It's not something you ever get used to or accept, you just learn to deal.

I was dreading Christmas this year. I did not have literal thoughts of dread and sadness, I just had "the bad feeling!" I went through all the motions of celebrating the holidays: The tree trimming, decorationing the house, sending cards, gift exchanges and all the other aspects of a traditional, commercial Christmas. With every aspect, I could not explain verbally what I was feeling emotionally and mentally.

Once Christmas Eve and Christmas Day arrived - I was shocked that I actually had a really nice holiday. I was so blessed to have my family (immediate, extended and distant) with me on these 2 days. I was happy and thankful for what I have and concentrated on not dwelling on what/who I don't.

I miss Pat with all of my heart and a day does not go by that I don't get angry because she's gone, sad because I miss her so much and lonely for my best friend.

"It's a Wonderful Life" is my absolutely favorite movie - one of the final lines of the movie is "Every time a bell rings an angel gets his wings!"

On Christmas I heard many bells ring and knew my sister has her wings! She was an angel in life and in death.

xoxoxo To Pat

I managed as well this was the frist christmans with out my mother. It will never be the same, a hoilday will just be another day for me.

I originally posted the story of my 82 y- o mother struggling to get a diagnosis for her GI  symptoms that sound supiciously like PC to me.  The doctors have decided to do a "wait and see" approach with another CT scan in 6 months, to see if the two "cysts" in her pancreas change at all during that time.  In the meantime, she's been put on an antidepressant, which seems to be helping her mood, appetite and sleep.  But I'm still concerned that this will simply mask the true underlying disease, if indeed it IS cancer.  I fear a horrible diagnosis several months from now, when it is too late to take the interventional steps that might work at an earlier junction.

I'd still like to hear from others about what tests/paths to follow up with now, based on their or their loved one's experiences.  Sorry, I prefer not to post a location; am looking for general answers/directions to pursue.

Update on myself; my HCC has returned, less than 9 months after first diagnosis and major, major surgery, from which I'd just barely survived and (almost) recovered.  Am facing life-threatening treatment again and dismall prognosis (<9% chance of survival to 5 years).  PC might be "the worst", but HCC is a close second, and trying to figure out what caused mine is "killing" me.  I wish there was a "Lustgarten Foundation" for Liver Cancer.  I'm beginning to suspect our Toxic Corporate Engineered/Controlled Diet in this country from HFCS (high fructose corn syrup) to engineered plants, to China-imported contaminated foods (aflatoxin, chemicals) to artificial, chemical sweeteners, preservatives and additives.  I think its time for a major "revolution" and "revolt" in this country to reclaim our pure earth, water and air, and stop letting souless unethical robber barrons poison our very existence.

BEC

My 72 yr old perfectly healthy and active mom went to the hospital due to stomach pains on the evening of friday Nov 7, 2008.  6 hours later, mom and dad were being shown a CT depicting a large mass on her pancreas, spots on her lungs and liver; blood clots in her lungs.

A 7day hospital stay to get the blood thinned using Heparin and then conversion to Coumadin, she was released to go home on Nov 14 under the care of dad with hospice checking in for blood levels.

Upon her release, we knew the "statistics" for mortality, but she was eating 3 meals a day and only taking pain meds every 6 hrs and they were fairly low doses; took morning and noon naps.

• Nov 24 - she began dropping things (fork, glass etc)
• Nov 25 - was the last time she sat at the kitchen table and ate a meal. 
• Nov 26 - brought extreme weakness to the point where swallowing meds was a struggle.
• Nov 27 (Thanksgiving) watched the Purina dog show with 16 yr old grandaughter lying on bed next to her, 9 yr old grandson played 4 songs on his violin, 6 yr old grandaughter showed watercolor drawing she made.  We converted to liquid meds and added lorazepam to help with restlessness.
• Nov 28 - 1:18pm in the afternoon with dad, myself and my brother supporting her, mom found peace...........

21 day journey from an extremely healthy lifestyle where she maintained her cholesterol thru diet alone and was only on some blood pressure medicine

Can't believe how this beast eats away a person in such silence

This is a note to say an early MERRY CHRISTMAS to my Mom who passed away 6 months ago soon to be 7. She passed on May 27, 2008 after being diagnosed 6 weeks previous to that day.. I know the thought is that she didn't suffer long but that dosen't ease the family.. I think we are still in shock to some extent.. I am remarried and have four children her grandchildren who range in ages of 2 girls at 26 and 24 and 2 sons ages 19 and 14.. The girls express there sadness but the boys keep i t inside they worry about me..We try to move on but she played such an important part in our lives. I was left with two handicap sisters to look after. It's very hard theres not a day I don't shed a tear. There are days I don't know where to turn.. But one thing my MOM always said GOD does not give us more than we can handle.. Sometime I just want to say HELP!! I Miss you MOM and love you very much.. I wish I could just call and ask for advice.. Look over me sometimes I need it..

LINDA your daughter

In February of 2008 my Father was diagnosed with PC. He was lucky. They found it in it's early stages. However it has taken a tole on our whole family. My sister and I were scared for our dad. But we stayed strong for him. This year my school is doing a fundraiser and we are hoping that we can do it for PC. Everyday was a struggle for my dad. Taking his chemotherapy treatments after his surgery. He still probably will never be back to normal ever. 

I am so sorry to hear about your battle for a diagnosis.  Could you let us know what city your Mom lives in so hopefully someone knows a doctor to refer you to in the area.

Remember Life isn't about waiting for the storm to pass: it's about learning to dance in the rain."

I have written several times about my sister who has had pancreatic cancer for l9 months.  Yesterday she lost that long battle, however the positive side is she was able to have 17 pretty good months and we are thankful for that.  When she first got diagnosed in March 2007, she called and told me she had pancreatic cancer but a rare tumor called Acinar.  At the time, I told her rare means they have not see it much and not necessaryily bad.  As it turned out it was a good thing because with this rare cancer she was able to spend 19 extra months with us.  Most pancreatic cancer patients die within a few months.  I hope with the more awareness of this disease because of the celebritys that have it, they will be able to find a cure so no one has to go through what our family has, as the last month was very difficult.  I suspect, like breast cancer was, in 10 years we will have more answers for pancreatic cancer.  Unfortunately, it won't help our loved ones but maybe it will help our family members because they say it could be in family DNA.  We definite need a cure!

My story is little different - and maybe I'm premature to be posting here - but in light of all I have read I am asking for people's help and advice.  Ironically, my story is also a lot the "same" as so many posting here, that's why I think its appropriate that I post here.

My 82 year old very spunky, active, energenic, intelligent "driven" mom started with a number of vague, confusing and diffuse symptom in July 2008.   This is a woman who learned computer  programing in her late 60's, and has single-handedly run three volunteer free tax prep sites for AARP for the last 10 years or so.  She has spent the last 3 summers PAINTING the outside of my brother's homes (!) has built stone walls with her own hands (and back) in her 70's has numerous vegetable and flower gardens at her own house AND my brothers' and still prepares 7 course meals for the 15 of us family members at holidays!  And she done all this while having severe insomnia for years.  At first she just thought she had "allergies" or a "summer cold", and she hid her symptoms from all of us.  But I became alarmed this August, when during one of our weekly Sunday phone call she told me she couldn't talk because she was "too tired to hold up the phone".   Her symptoms started in early July 2008 with weakness, lethargy, dizziness and then a high pitched "squeal" when breathing, almost like an asthma wheeze, which she's never been diagnosed with. She also had a fever that came and went, off and on,. often in the 100.6-101 range.  With that came extreme/severe chills/hot flashes. She would often feel cold, "unable to get warm" for hours.  She would fall asleep with a heating pad trying to get warm (remember, this was in JULY and AUGUST!); then awake drenched in sweat, feeling very heated.  This cycle repeated itself day after night, for weeks.  She also had/has severe lethargy; unable to get motivated to get up in AM, get moving during the day.  This is extreme change  from her usual very active lifestyle; (see above).  She also has extreme feelings of weakness; inability/no desire to hold up phone to talk; feeling too weak to talk about condition.   She went to her GP in mid July, but saw an unfamiliar male nurse practitioner, who diagnosed her with "allergen induced bronchitis" from her chronic hayfever and the dust from sanding my brother's house (pre-painting) and was given antibiotics. 

She finished the a-b's, but continued to feel bad, worse, in fact. She returned to the doctor, but was told (also by this very unsympathetic NP) that "she hadn't given the a-b's enough time to work" - 10 days AFTER she'd finished ALL of them.  (That sounded suspicious to me.)   Now (late July 08) her symptoms included: little to no appetite with sensitive stomach; little desire for solid food. She also had upper right abdominal pain and severe constipation that nothing alleviated.  Also, her sense of taste was extremely affected. At first, she complained everything tasted "too salty", a few weeks later everything tasted "too strong" or just "bad".  She also complained of a sore throat and terrible "heartburn and gas pains", and her stomach felt "bloated" most of the time . Her ab swelled to make her slacks too tight, even though she'd recently lost weight (about 25 lbs) without having dieted.  (Incidently, she'd been diagnosed with diabetes some years before, but then it inexplicitably "disappeared"; she hasn't been treated for it in 5 or more years).  She'd also previously lost 40-50 lbs without dieting some 2-3 years ago.

I went to visit and stay with her in mid August, to check on her and to, ironically ,attend the funeral for a close friend who'd succumbed to kidney cancer.   After my insistance, badgering, and "threats" to drag her to the doctor myself, she went back to her GP.   Finally, her regular doctor diagnosed her with GERD and put her on a prescription for that, including Previcid.  Over Labor Day Weekend, she was very sick, at an out-of-town family reunion.  So, her doctor decided her sore throat - and other symptoms were "thrush" (yeast infection) and precribed a single pill medication for that.

But the symptoms have continued to the present (mid November 2008) and are not improving.  She's also experienced more dizziness and confusion/forgetfulness.  She's now had an head-only MRI (to look for brain cancer- negative), a CT scan to look for ulcers and abdominal tumors, and recently, an endoscopy with a gastroenterologist.  The CT found a "spot" on the tail of her pancreas, but it was "just a shadow on the Ct scan OR an "old infection - nothing to worry about".  Multiple blood tests have shown no tumor markers or abnormalities.  The endoscopy showed lesions in her small intestine, but no ulcers.  But it also found another "spot" on the head of her pancreas, which they said the CTscan had missed due to her severe constipation at the time.  Each time she's had to wait 2-4 weeks for an appointment; the waiting and wondering is killing us.  She is a former teacher and has been researching this herself on the web and is very depressed; she is expecting a cancer diagnosis, but they don't seem to be able to "find" it.  Instead, they keep prescribing meds for completely unrelated and seemingly conflicting diagnoses: Bronchitis, GERD, Yeast, Depression.  She is now on an anti-depressant and a sleeping pill, which has helped her feel somewhat better, but she's still not her "old" self.  She has to force herself to eat.  Her GP told her last week that they think the pancreatic "spots" are cysts, but don't plan to biopsy them due to the fact that "if they are cancer, the risk is that the biopsy will spread the cancer".  And finally, this past Friday (11/14, she came down with a DVT, a blood clot in her calf.

Also, the communication between her and the doctors and the doctors themselves has been pitiful.  As she was coming out of the anesthesia from the endoscopy they attempted to give her instructions about future followup appointments; she misunderstood and went back to her GP instead!  Why don't the medical personnel know better that to talk to a drugged up 82 patient who is sick???!!!  My father was in the waiting room; they could have - but didn't - talk to him!  And by the way, all this is happening in a major city, in a well-respected teaching hospital/major medical school facility!  I live 200 miles away, and have my own family to care for; I go "home" as much as I can, and as much as she'll "let" me, but she is a very proud, stubborn, independent woman and she has not been the easiest person to live with through all this!  (I COMPLETELY understand the blog about "A different kind of mother-daughter relationship!)  My father is in the early stages of dementia (almost 83) and my brothers are "useless" in this area.   Her sister is also nearby, but is nearly 84, and doesn't understand the seriousness of the situation.  Nor is my mom sharing the depth and gravity of the situation with anyone but me; she's sworn me to "secrecy" from the other family members, so I have noone to share or consult with.

I, myself, am recovering from primary liver cancer (grapefruit sized heptocellular carcinoma) found in my right lobe this year, 2008.  Diagnosed March 5, had a liver resection April 1(they completely removed the lobe and my gallbladder),  released from hospital April 7, complications that landed me back in hospital April 16-18; and have just barely gotten my energy and stamina back as of the sixth month mark (October 08). Originally staged at IIIC, now told, due to "personality" of my tumor I was "only" a Stage I, but extremely unusual for that size.  I go for quarterly CT scans and have blood work every 6 weeks.   I spent 2 days this weekend on the Randy Pausch website; my journey mimics his in a lot of ways.  So far so good, but my cancer has a 89-92% chance of recurrance within 5 years, with the highest risk in the first year, so I have a lot of stress and fears and issues, myself.  (5 yr survival stats range from .2% - 45%, depending on factors.) In fact, the doctor thinks the stress of worrying about me may have contributed to my mother's symptoms.  I orginally wasn't supposed to have lived past 3-6 months, either.  (Now the added stress of worring about my mom isn't helping my health, either!)  By the way, initially, I had to fight for my diagnosis; thought I had gallstones (severe upper right quad. ab pain, severe nausea, vomiting, gas, lethargy/weakness), but my GP insisted I had a "pulled muscle" from shoveling snow, since my initial labs showed only very slight liver function abnormalties.  However, my inital AFP (tumor marker for liver cancer) was 181,000, with normal being 0-4.9!  US and then MRI, then CT confirmed my cancer.

Incidently, BOTH my mom and I are lifelong NON-smokers, very light drinkers, no hepititis, lifelong great healthy, balanced diets, very active/exercise, educated.  I was only 52 when diagnosed; there is no known cause for my cancer - I had NONE of the risk factors, including genetic, so I was told.  Other unusual facts: neither of us has had jaundice as a symptom.

SO, HERE are my questions, that I haven't been able to find anywhere in months of digging online and in books:

1.Doesn't it sound like my mom is "headed" towards PC?  Sure does to me, based on reading all the symptoms in the blogs here to date.  I know there still is  a chance it could be something else, but given her age, and my history (my cancer was 'completely out-of-the-blue and unexpected) I'm pessimistic.  Should I be "pushing" the doctors to be looking more aggressively for this?  HOW?
2. What should we be doing next?  What tests should we be demanding for her? Another MRI (full body?)  A PET?  Anything else?  I DO understand that there is "no blood test" or "early detection", but what test/proceedures do other people have that gets them to the diagnosis of PC?
3. What genetic tests are there and how can you get them?  Must they only be done at research centers? Are the genetic markers the same, similar, or near each other for pancreatic cancer and liver cancer?  What are my risks for getting PC after having had liver cancer?  Should my kids be tested?  My brothers and their kids?

4.  How should we be pursuing the "cyst" issue?  I've read that some are NOT cancerous, other types are occassionally or often.  Did anyone else progress from a "cyst" diagnosis (I know I read of at least one on this blog) and what was the path from there?  What tests?  What timeline?  "To Biopsy or Not Biopsy, that is the question!"  They seem to be taking a non-aggressive stance; they've already told her they will re-scan her (CT) in 3 months.  Meanwhile she's suffering, and this is unacceptable to both of us.

5. What else should I be doing, fighting for (for my mom)?  What else should I be reading?  My mom is trying to "keep me out of this", although I can tell that secretly she's glad I'm "in the fight" with her.  No one else in my family has a clue and I feel very alone.  I know she does, too; she's just too proud and stubborn to ask for help from "the men".   I'm just so afraid my/her story is going to end as sadly/badly as most of what I've read on this website and Professor Pausch's.

I apologize for the length of this and am grateful in advance to anyone who takes the time to read this and offer any pro-active suggestions.  Prayers and well-wishes are nice, but I'm hoping to get something more expeditious.

Thank you and Best wishes to all of you out there.  Your stories are very heartwrenching, but information is power and I very much appreciate your sharing, bravery and strength.

BEC

Hello Everyone,

My name is Ida R. Gutierrez and I recently lost my beloved Mother to P.C. on Sept 26 08. My heart and home fills very empty and lonely. As I walk doing my grocery shopping I think of my Mom and all I can do is cry for her. I miss her very, very much!!! I wanted to inform  you all that they will be holding  the Pancreatic Cancer Research Walk on Sunday March 8 2009 @ Santa Monica Ca Beach Park.  it would be nice if those of you that could attend and support your loved one. My brother Erik , my daughter Valerie & I walked last year with Mom present. Now she is gone but I will continue to support her and the disease. This walk is for you mom and everyone else that has passed. I love you Mom!!!

Well let me start off by saying thanks for the words of encouragement... I know there is a lght out of the darkness I feel.. It's new  it's only 5 months and the holidays are here.. as I told my new husband of 2 months I could have a ton of people around me and I'm still lonely.. Thanks for everyone's support and I know how you all feel.. I also lost my Dad when I was 14 to colon cancer.. And I have 2 handicap sisters.. But I will gone on because of the love she has given me..and she lives in me.. God Bless Everyone dealing with terrible disease..

Linda

YOU ARE ABSOLUTELY RIGHT.  OUR MOTHER'S WOULD WANT US TO BE HAPPY AND MOVE ON.  MY MOTHER KEPT TELLING ME TO BE BRAVE AND GO ON WITH LIFE.  YOU ARE ALSO CORRECT THAT THE EMPTINESS IS ALWAYS WITH US BUT THE INTENSE PAIN LESSENS.  OUR HEARTS ACHE A LITTLE LESS.  HOWEVER THE VOID IS THERE.

RHONDA

I know how all of you feel.In February 1995 I lost my best friend my Grandmother to pancriatic Cancer.She was diagnosed in 1993.She suffered for two years.The radiation,the kemo.Watching my grandmother who never liked to sit still for to long,not being able to walk or do any of the things she loved, like go walking with me or hold her new grandaughter at the time alexis,because she was to weak to do so.I got married in 2003,i had to get married without her being there,missing one of the most importantant days in my life she might of not ben there phyically but she was there in spirit.Watching my grandmother die was one of the hardest things i had to do when i was in my early twenty's.Watching a loved one turn yellow,and not be able to eat anymore,The pain she was in and didn't deserve was heart renctching knowing there was nothing i could do to take away her pain.The only thing i could do was hold her hand and tell her how much i love her.

Dawn Duvo

To my sister Donetta , you would have to be the bravest person I've known . Finding out you had pancreatic cancer and fighting it for 3 yrs . July 16th you went home to be with the lord . Tomorrow is your day , HAPPY BIRTHDAY , you will always be with us .  Love , your brother Aaron

Linda:

YOU ARE RIGHT IT WILL NEVER REALLY BE RIGHT OR GREAT.  HOWEVER THE WORDS YOU HEAR FROM PEOPLE ARE SOMEWHAT TRUE...IT DOES GET BETTER.  YOU CAN READ SOME OF MY POSTINGS THAT GO BACK TO 2007.   IT IS MUCH EASIER NOW, BUT NEVER RIGHT OR THE WAY IT WAS AND MY MOM WAS DIAGNOSED JUNE "06 AND PASSED AWAY AUG. 18, 2006.  THE FEW WEEKS DO NOT PREPARE US.

GOOD LUCK AND I AM SORRY FOR YOUR LOSS.

RHONDA

HI everyone, I don't know if they are the rite words.. I am having a hard time with the loss of my MOM.. She found out she had pancreatic cancer on 4/23/08 and passed away on 5/27/08// 6 weeks.. I don't know weather to be ok with the fact that she didn't suffer long..... or I don't know.. All I know I cry at least 4 times a day I have a family and they don't like seeing me like that but I'm at point I don't know what to do.. I MISS HER SO MUCH... I was left with two handicap sisters so that makes it even harder on me.. I have spoken to people and all they they say is it wil be alright... They don't understand it will never be alright...again.. I LOVE YOU MOM AND MISS U GREATLY>>>LINDA

I just found out that my best friend from high school died on Oct. 29, 2008 from pc at the age of 44.  I lost my mom on March 28th 2005 to pc after a six month fight. After my mom died our family got involved in the Boston walk and our team of 25 have walked every year since.  Lets hope that every step we take brings us that much closer to a cure so that no one elses  loved one has to suffer this terrible, terrible disease.  I love and miss you mom and Sue so so young.  May you both rest in peace no longer suffering, no longer in pain.

Linda

Team Novicky Cardinals

Boston Walk - 2008

LESLIE:

FIRST MY CONDOLENCES  ON THE LOSS OF YOUR AUNT.  I MISS MY MOM EACH AND EVERY DAY AND I TELL HER SHE IS WITH ME, ALWAYS.  I WANT YOU TO KNOW, IT DOES GET EASIER AND THE PAIN IN OUR HEARTS BECOMES LESS INTENSE WITH TIME.  IT IS OVER 2 YEARS THAT MY SWEET & WONDERFUL MOTHER PASSED AWAY.  THERE ARE MOMENTS I DO NOT BELIEVE IT HAPPENED, BUT IT DID.  UNFORTUNATELY IT DID.

GIVE IT TIME.  YOU WILL ALWAYS HAVE PAIN & HEARTACHE, BUT IT ALL BECOMES MORE BEARABLE.  AGAIN IT IS OVER 2 YRS. FOR ME.  I THINK EVERY DAY AND KISS MY MOTHERS PHOTO, BUT I CAN COPE A LITTLE BETTER.  THE EXPRESSION TIME IS THE GREATEST HEALER IS TRUE.

RHONDA

Dear Rhonda, Ida and all the readers,

     Just wanted to update everyone. As you know from my previous letter, my Mom passed away from pancreatic cancer on June 20, 2008. Prior to her diagnosis, my Mom's oldest sister was diagnosed with liver cancer. My Mom  seemed to be more worried about her than herself. She would have me call her to see how she was doing back here in New Jersey and get updates on her condition. My aunt couldn't talk to my Mom too much because my aunt couldn't understand my Mom when she spoke, she was so weak she garbled her words. I think because my  Mom knew what her own condition was like, she worried about her sister having pain and suffering. Well, this morning around 5:30 am, my Aunt joined my Mom. She was admitted into the hospital on Friday and passed away this morning. I am sure the two are together now and watching over their families. I am sure my Mom is more at peace now because her final days she was very worried about her sister and called out her name several times. I Love You and Miss You Mom more and more each day, but I feel your presence with me always.  Your loving daughter, Leslie

  Thank you everyone for listening and caring and know that I am reading your entries and I too care about all of you.

My Grammy was diagnosed with Pancreatic cancer on Mother's Day of 2003 and passed away on Father's Day of that same year.  I just wanted to let her know that we miss her and love her more than anything in the whole wide world.

Love,

Eugene- her husband

Meryl & Murray- her 2 children

Erica, Bri, & Lindsay - her 3 Grandchildren

Sandy & Alan- Her son and daughter in law

 Bernice- her Sister

John- her future grandson in law (whom she unfortunately never got the chance to meet) 

Krystal- her "adopted" granddaughter

All of the her nieces and nephews.

WE ALL LOVE YOU AND MISS YOU MORE THAN YOU'LL EVER KNOW.

REST IN PEACE WITH ALL OUR LOVE AND MEMORIES.

Love always, all-ways,

Us <3

I lost my second husband of 4 ½ months to pancreatic cancer shortly after I turn 46. I lost my first husband of 17 years just before I turned 37 to vascular disease.

Something that helps me to know that they are both with me is being able to recognize the signs.

When I visit the cemetery, believe it or not, no matter how calm it is, when I start speaking, the wind blows. This makes me feel like they are listening. It may sound silly, but it puts me at ease.

I will light a candle along side their pictures when I feel I need support. This also makes me feel at ease.

Sometimes I will make a connection with a song or television show and I will laugh or cry just knowing that they are both with me.

Try to find something that makes you feel close to your mom. It could be as simple as a song on the radio and when you hear that song, you will always feel her close to you.

Remember, although your mom is no longer in your presence, she will always be in your heart!

In 6 weeks, it will be 1 year since my mom died from PC... I honestly have no idea where the last year went. So much has changed since then.... My father passed away 6 weeks after mom, I've had 2 new apartments (my first time living on my own), my moms cat (her third child) died a few months ago, I'm in a new relationship with the man I know I'm going to marry, I went back to school, quit my job... and all I ever think about is how much I can't believe that my mom hasn't been here for any of this. She wouldn't believe all the differences in mine and my brothers lives. And I can't believe that I had to do it without her. We had 18 people at the Lustagrten Walk this summer, she would have been so impressed!

 I wish she could meet the love of my life, I wish he could have met her. I wish I cold tell her how amazing he is and how much I love his family. I wish she could come over to my place and help me put up my curtains (because I'm spastic). I wish I could go back home for dinner once a week. I wish she could have seen that I FINALLY flew to the west coast and I could show her my pictures from my road trip from San Diego to Phoenix.

I've gotten used to the MISSING her part. It's a constant pang in my life that I know won't ever be alleviated but now that I'm living my own life and I'm coming to all of these milestones and experiencing all these new things I can't help but feel that it's so unfair that she doesn't get to be there for any of them. Everyday is still  an out of body experience for me because nothing about my life is remotely close to what it was before my mom died. I'm just waiting for it to feel like my life.

I miss you mom!

Hello Rhonda, & leslie

As I read your strories it touched my heart. I could only

think now that I was not alone as a daughter... Rhonda I thank you for your feedback it makes a world of a difference when you know someone else is reading your stories. We now have to hang onto our strength... I miss my mom so much, she is a great woman looking and taking care of me from above

I love you Mom & Best Friend!!!!

Love you daughter Ida R. Gutierrez!!!!

Wow..I just found this site and it's been over a year since Tim was diagnosed.  He had been having uncontrollable pain for well over a year when finally on Sept 16, 2007 he was finally given a diagnosis of PC....inoperable PC.  His story starts earlier that summer when he was hospitalized in critical condition for over 45 days..no one could explain his illness or why he was in so much pain.  It was then after a needle biopsy that our worst fears were confirmed.  Cancer...but the words Pancreatic Cancer were not expected.  So here we are 13 months later and due to having no health insurance and not being able to obtain state assistance he has made the decision to not seek care of any kind to determine the staging of his cancer.  He believes that with the words inoperable he is going to enjoy the time he has left.

So we love and care for him, sit by his side when the pain becomes so intense that he needs to be hospitalized to control it.  My prayers are with all of those who have lost or have someone dealing with this disease and my hope is that there will be a cure for this silent killer.

tminkk

This story is about my MOM.. the most bravest woman I know... She had a rough life.. My Dad died when I was 14 and that left her with me and my 2 sisters.. I  am a normal  child 9  month pregancy I weighed 8 lbs at birth.. then my Mom lost  my brother 11 months after me he was stillborn the cord was wrapped around his neck... she almost died she lost so much blood.. seven years passed no children no birth control and my sister was born at 7  months she is mentally challenged. Then came another sister who lived for 8 hours she was to small.... Then the last was my other sister she was born at 7 months and she has ceberal palsy..  Well that what she had to deal with her whole life then she gets told she has pancreatic cancer on April 23 and passes away on May 27th... I am left yo deal with my sisiters who I love dearly but I miss her  more than words can say... SHE WAS MY BEST FRIEND... I have my own family so it makes it very hard to be sister and the (mother).I LOVE YOU with all my heart your daughter Linda!

I have written several times in this blog about my sister who has had pancreatic cancer for now 19 months.  I like to read all the stories everyone writes however it is all the same in the end.  Over the past several months, all I think about is why couldn't my sister get any other type of cancer?  It seems it is possible now a days to beat other cancers, however you never beat pancreatic cancer.  This is always a death sentence.  How close to a cure are we?  They are making great progress with breast cancers, colon cancers etc.  Is that because more people get those cancers and only a small amount of people get pancreatic cancer?  I am just venting because my sisters fight is coming to an end and it doesn't seem fair.  There is nothing any of us can do and it is so fustrating to watch someone you love dearly, pass away.  I just hope enought time and money is now being spent so that in years to come, no one has to go through what our family is going through.  When I read about mothers and daughters, my niece is 23 years old and going to lose her mom.  How fair is that? I lost my mom when I was in my 40's and that was devastating and I had 20 extra years more than my neice will have. Her mother always says, "things happen for a reason."  How do you answer when your 23yr. old niece ask you, "what possible reason could there be to take my mom?"   I pray for strength for my neice and family and I try and remember we had 19 long months and after reading all these letters, a lot of people only had weeks.  I will try to hold on to this thought.  Please find a cure so no one else has to go throught this.

Dear Leslie , Ida And ALL the Loving Daughters Out There:

I have been posting my continuous story on here over a year now.  I probably wrote back in 2007

for the first time.  I should have stayed with my mom continuously, but I think I panicked and tried to run from reality.  Yes, I saw my mom every day and stayed with her 3 or 4 hours aday, but I should have been there more.

From the time of diagnosis my mother lived  approx. 9 weeks.  She, too was in stage IV, pancreatic cancer that spread to the liver.  It is over 2 years now that mom passed away.  It happened on Aug. 18, 2006, also on a Friday.  I miss her dearly, she is in my heart always.  We were very close, speaking 3-4 times daily and seeing her 4-5 times a week before her illness.  I still cannot believe this happened to us.  How did it happen?  Doctor visits, blood tests and nothing appeared wrong.

For the past 2 years we have walked in the Lustgarten Pancreatic Walk.  I cry as I walk, wondering how did this happen?  Why?  I do not understand.  It helps a little when I participate.  It is an overwhelming feeling when you see all the people that have been affected by this terrible disease.

The grief gets easier, but it is hard and I cry as I write this to think this happened to my mother,

and yes to yours as well.

Good Luck.

Rhonda

I was diagnosed back in late may 2008. The doctor told me 6-12 months. It had already advanced to my lungs. As I was leaving his office, I  looked at the doctor and said " you say no, I say yes". I have been having chemo treatment since then. I consider myself very lucky. I am not sick; from the disease or the treatment. The treatment fatigues me for a day or two and then I feel good. I am amazed, grateful, and count my blessings everyday. I wish everyone with this disease could feel as well as I do. I do know that this will more than likely not last forever. However I am only 57 and not ready to give into this disease. I am enjoying my life to the fullest at this point. We just did the Lustgarten walk in Boston. It was a beautiful day, weather wise and the fact that I could be there and walk. I pray for all of us with this nasty little devil that grows with in us. I pray for a cure, I pray for comfort, and I pray that we all can survive this. God bless all of you that have been touched by this disease.

Pat, New Hampshire

My Mom was not feeling well since November 2007 but she had such vague symptoms her primary doctor did blood tests and gave her allergy meds for her nausea she had after waking up each morning. Lab tests came back and he told her she was diabetic. ( Her Mom died from diabetes at the age of 54) Three months later she went back to her doctor and she had lost 25 lbs but her glucose stayed the same. Red flag! She went to the er as per her doctors suggestion, had tests done and told her it was stress. Her ct scan of her abdomen, completely normal. Went to hospital again for back pain. Spent two days there and was told she had spinal stenosis. Took 1 month to get a referral from her primary to go to a pain management doctor. Then another two weeks to another referral for another visit to the pain management doctor so she could get an injection in her back which eleviated her pain. She felt good for a short time. Then her upper abdominal pain started. She went to her pcp again and said she wanted to go to her GI doctor. She got her referral quickly this time. The GI doc took one look at Mom, ordered an US of abd. and an MRI. Found a 3X3 cm. tumor on the tail of pancreas and spots on the liver. She was then sent to an oncologist and sent for a biopsy. I flew to be with mom for the biopsy and to get the results. Mom didn't want me there sooner because my son was having a surgery also and she wanted me to get him through his before I flew to be with her. My Dad passed away in 1974 and my brother passed away in 1989 so it was just my Mom and I. I live in NJ and she lived in Florida. She had lived there since 1973 and didn't want to move back up here. I was in shock when we got the results. Pancreatic cancer stage IV. The biopsy of the spots on the liver showed it had spread. I flew back home to wrap things up here with my family and my job. I booked a one way flight for two weeks later so I would be  there when Mom started the gemcitabine the doctor had suggested to hopefully help Mom feel better. It came in before my flight so Mom got her first shot without me. Her friend took her because she was so weak by then she couldn't walk by herself. She felt great that one day but by day two she was weak again. Two days later she fell in her kitchen and broke her shoulder. Her friend found her and called 911 and then me. I changed my flight and got down there the next day and stayed with my Mom till the end. My Mom passed on June 20, 2008,at the age of 75, exactly 7 weeks after being diagnosed. My Mom always said things happened to her on fridays. She was so right. She always felt her worse on friday nights when it was hard to reach doctors and she never liked to call on weekends and bother the doctors, we recieved the biopsy report on a friday and Mom passed away on a Friday. Thursday night, after sitting up with the hospice nurse talking, I went over to Mom and kissed her goodnight and I said " I Love You Mom", she said " I Love You too" back. Friday Mom never woke up. She passed that night at 10:44 pm. We miss you so much Mom and I am so thankful we had that time together, as short as it was. You taught me so much more than you could've  imagined and I was so impressed  by your strength.   

    A loving daughter, Leslie   

P.S. Mom's older sister, age 81, is fighting liver cancer. She was diagnosed a little time before Mom was diagnosed with pc.      

They usually post more info about it come Nov. I went last year and it seemed that the prices were listed almost at the last minute. But it's a really nice night and I am definitely going again this year.

....Lost mother to PC....

 

**This will touch your heart**

 

My beloved Mother Angelina Martel Ruvalcaba @ the age of 68  years old  began with her 1st symptoms  of abdominal pain last year in June 07' .In Dec 07  noticed daily naps, one thing mom did not do. She then  followed up with  her primary care physician, labs were drawn results and were in,  she  was treated for gastritis. In December of 07' she had  a sudden  drop in  weight loss   and did not look well, she again followed up with her  primary care physician , Phy requested a CT scan  along with several labs. She received the results of her labs  and  the Ct-Scan  and it  was  presented with  Pancreatic & Liver Cancer.. Her labs came back with abnormal liver functions readings. .  She was told that it was caught to late and  she was already on stage 4 with no surgery hope. I was determined and followed with a surgeon consultation and did. We meet with The Surgeon  and he  stated it had spread and it was to late. My heart dropped... I could only know and feel the emotional stress & depression  that my  beloved mom & dad were experiencing. The next step was chemo (Gemzar)   3 times a month once a week which started in Feb 08  along with hospice.  Dad & I took my beloved mom  to her sessions and  waited in the lobby, while she received her treatment. although I did make sure that  she was being administered with   the correct medication, the nurses did not like me a  first  but I was only caring for my beloved  mother.   I would sneak in sometimes  @  her bedside  to make sure she did not need anything and that she  was doing well. the nurses would look at me and did not say a word they grew into liking me,  I loved  those sneaky sudden walk-ins to my moms bedside. I grew a bond with the staff.  I guess they had no choice. They  saw that I was determined to be with her and I did.  Along with that  my beloved  mom  did not experience any  vomiting,  although  she felt  fatigue along with some nausea and lots of sleeping. As months went by I saw the faith and determination she had as a  beloved mother, wife, grandmother & great-grandmother  (Angelina)....  (Aka- Lina)  from her great-grandson (Jonathan). I  always saw in my moms eyes  that she was just not going to give up fighting  her illness.  She never lost her hair through this whole treatment &  illness. I remember herself  buying  a black hat, that she never had to wear nor use.. . I still have that hat has a memory. In  July  08 her cancer returned and now had spread to her lungs, I turned around and looked at my parents and saw tears coming down from both of them, once again!!! I again  felt my heart was broken into pieces...  There was silence in the room .... My mom stated I know I' am dying!!! The oncologist then  offered another source of chemo (Tarceva) along with (Gemzar)  which she was already being treated for... I turned and looked at the physician and stated to her what kind of quality life will my beloved mother have. At that point  I turned to my beloved mother and said you are the boss mom. What do you want to do,   she then paused with tears in her eyes and  stated I just want quality life with my family . we thank the oncologist and I asked my parents to wait outside.  I asked the physician  how much time does my mom have left,  she stated to me (3 Months) I never shared this information with my parents. Those 3 months went by so fast.   We got into the car and there was silence once again. . We got home and my beloved mom said I" am still going to fight this illness, I said you sure are mom!!! I then  took a  leave of absence  from work in August to care for her at home. with that in mind my friend friend Becky & Daughter Valerie were also helping me out..  In Sept my brother Erik arrived from New York,  & my brother David from El Paso Texas, my brother Rudy & Rick and the rest of our family new what was hitting us but yet we all stuck together and bonded  as a family  with our beloved mom,  it  was so beautiful. . My mother was so loved by our friends they would even call her (Mom)  I would like to thank all my friends for being so supportive at a time like this, they keep me strong and going on. I t was not easy but we all did it and thats my joyment. A message to  all  daughters out there. ,   It  was the most beautiful time any daughter could spend &  give to any mother. I enjoyed every moment with her, without leaving home and going anywhere. In reality life is to short we are here on borrowed time only!!!!.  My Father Rodolfo cared for my beloved mother his wife there was nothing that my dad would not do for her, from making her home made quaker oats to feeding her ice cream. .... My mother passed way on Sept 26th @ 1:50pm.. I can say  From the bottom of my heart  I was so sad that I had lost a loving, caring &   great mom without expecting anything in return , but only her faith..... . I still cry for her....  but her  memories will always  remain in my heart &  in my mind. My mother was and will always be remember has the woman that had so much faith and determination. She fought it till the end. She love Danielle Steel and lifetime channel, you know 1 thing I spend so much time watching this channel and remembering my beloved mom....  I miss my mother but she is now resting in peace.  We  all love & miss you dearly mom!!! (Aka)  (lLina) My brother Erik, Valerie & Myself were proud to participate on the 1st walk-a-thon @ Santa Monica Beach Ca this year for P.C.  I cried  as a walked and all I could think of is this is for my beloved mom and others, it was a joy to be part of this event.

P.S. My beloved moms favorite color was Purple...  how things work out in life the symbol of Pancreatic  cancer (A Purple Prose)

I love you Mom your daughter Ida R Gutierrez...

----- Original Message -----   and

Hi,

Is there anymore info about the Holiday Bash?

Thanks......Lost Mother To PC

It is great to read a story such as yours. I hope your sister continues to fight and make the very best of day.

May God bless each and everyone of you!

Cablevision Systems Corporation, a leading media and entertainment company, has committed to underwriting all of The Lustgarten Foundation's administrative costs to ensure that 100% of every donation will go directly to pancreatic cancer research.

I heard the radio ad this morning.

Thought it was great and a wonderful way to enlighten listeners to this horrific disease!

It is important to know that 100% of each donation goes directly to this cause.

Thank you Cablevision!

The Lustgarten Foundation is planning a Pancreatic Cancer Research Walk in Washington DC for the spring of 2009.  For details please contact Suzanne Beck, Event Coordinator at sbeck@cablevision.com or you can call toll free 1.866.789.1000.  If you are interested in starting another event, you should also contact Suzanne to learn how we can work together.

I am touched by each and every story.  My thoughts are with all of you who have suffered/are suffering from loss of a loved one. 

This might not be the right forum for my story but perhaps I can get your help in finding the right place.  My mother in law passed away from Islet Cell cancer about 9 years ago.  We would like to host a memorial to raise funds.  What is the best way to go about it? How does one find rental halls that would charge reduce fee for a good cause?  Should we do a dinner and dance gathering and charge people XX amount /person?

We live in Philadelphia but can also host the event in Delaware or DC area.  Any help you could possibly give me would be much appreciated. 

It saddens me to still see stories of how fast PC spreads and robs families of the little time left with loved ones.  I am particular sad when I read about moms.  I thought I was dealing well with Mom's death but as the holiday season approaches, I find that the days are getting harder and harder. 

But, I am filled with hope after reading the posting "HOPE".  How wonderful that someone is beating this disease...my prayers are with you that you celebrate even more years of survival!!

On Saturday, I received a postcard regarding a new walk in Washington, D.C.  The foundation is searching for committee members to make it a reality.  I encourage all of you who are in the D.C., Maryland, Virginia area to lend your support to this cause.  I am determined to not have anymore stories of loss, but more stories of survival. 

Patricia

Hi, my name is kat and this is my story : April 1st '05 this was the day i will never forget it was 3:31 a.m. my mom she was 47 she had PC.  She had PC for 18 they said she had 3 to 6 months to live.  I was 10 and my little brother was 5.  Everyone in my family came down to support us in this time of need to this day my dad still wears his wedding ring.  In my opinion she was taken at a young age.  She was a fighter, a mother, a sister, a daughter, a wife, and a friend. 

P.S. mommy we still love you ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! !

My husband was just diagnosed with locally advanced PC in July at the age of 42. He'd lost a lot of weight (he's now 167, down from 220). He'd also been having some severe lower back pain and he was being treated for herniated discs but  July 4th weekend he turned yellow. The 3 x 3.2 cm tumor in the neck of his pancreas was pressing on his bile duct and encasing the celiac artery which makes it inoperable right now.

He's getting Gemcitabine and Oxilaplatin once every 2 weeks thru October in hopes of shrinking the tumor enough to make it operable. The chemo makes him vomit and he's been hospitalized once for dehydration.

No doctors have given us a time frame and frankly we don't want to live by the calender. We have a 9 month old baby girl and every day with her is the best medicine we could ever hope for. That and LOTS AND LOTS OF PRAYER.

To all of you that have lost loved ones, I am so sorry. I know the statistics for PC aren't good but we pray we've caught it early enough.

About 4 weeks ago, we found out my mom had pancreatic cancer.  The word cancer just through me for a loop.  This does not happen to my family, other families but not mine.  She was a healthy 65 year old woman, best friend, mother, wife and grandmother and she had pancreatic cancer.  At that point, I did not know much about it.  I did not know how deadly this disease was.  I did my research and all the statistics showed how terminal this cancer was.  My mom went into surgery this past Wednesday to see if they could remove the tumor, that went from a small size golfball to a soccer ball in four weeks.  The surgery was unsuccessful and she passed two days later.  My family is deeply saddened by this and in such shock that this disease took our mother.  We feel like we did not have enough time to prepare for this.  It's not fair and we keep asking why but I know that my mother is with me and always will be.  She was my best friend and nothing will ever change that.  The one good thing is that my mom was alert enough to see and hear us and we all were able to tell her we loved her and she mouthed to us that she loved us as well.  She also did not suffer in any pain and I beleive that for that, the surgery was a blessing.  I only hope that one day, we can find a cure for this deadly disease so that others do not lose loved ones like we have.  Thank you.

Michele

I was having mild symptoms such as digestive problems and a little pain in my right side, which are not really common symptoms for PC.  I went to the doctor because I thought it might be my gallbladder.  After several test and a magilent biopsy,  I was referred to a cancer surgeon who decided to be aggressive and do the Whipple.  He felt this was the best course of action.  Which, in my case turned out to be right.  I do know another person, who went through basically the same thing at the same stage, but he was treated with radiation and chemo instead of the Whipple and his cancer is in remission.  I guess it depends on the surgeon and each individual person.  I was told that my age, my health and having had no previous surgeries in that area all contributed to a successful surrgery.  I just say God was not ready for me yet!

Has your sister been told she cannot have a Whipple?  If so, why not?    You and your sister and all the others on site are in my prayers.

My husband Glen lost his battle to pancreatic cancer on September 4 2008 at the age of 51.  He was diagnosed in August of 2007. 

He was a father of 2, a father-in-law, a friend to many, a brother, son and a wonderful husband who I  am missing terribily. 

He put up a good fight and tried everything the doctors wanted him to. He was my rock so when he got sick I feel apart and now that he is gone I do not know what to do.

He would want me to keep on going and get back to life but I am finding it so hard.

I want someone to find a cure for this killer of many.  It isn't fair that so many loved ones die. 

I hope to keep my husbands memory alive and get back to living but right now all I want to do is cry.........

This chapter of our life has come to an end and now I start a new chapter without you.

Wishing you continued good health!

I just found this website.  I was watching TV when it came on the screen. It caught my attention immediately because, as we all know, you don't hear much about pancreatic cancer.  I grabbed a pen and jotted down the website.  I am absolutely amazed by the information on this site.  I am also sadden to read all the stories about loved ones lost to pancreatic cancer.  As I read the last post, I felt like I should respond.  I almost didn't because my story has such a different outcome than the others written here.  But I wanted to offer some hope. I want everyone to know, from personal experience, that there are some good outcomes.  You see, I am a 6 year survivor of Pancreatic Cancer!  I was diagnosed 2 weeks after my 40th birthday.  A week later I had surgery (a whipple).  I had a long recovery, my stomach would not work and I was on a feeding tube for 2 months. I was in and out of the hospital several times for dehydration and other complications but praise God I am now healthy and living a very active life. I give all credit to God, for placing wonderful doctors in my path and for the miracle of modern medicine (and I know there will be more advances to come).  There was a lot of prayers going up and I know I am an answered prayer.  I still do not know for sure why I was spared from this dreaded disease but I have faith that a cure will be found so that other families like yours will not have to suffer the pain and heartache of losing a loved one.  My heart and prayers go out to each of you.   It is such an encouragement to read your stories about how much dedication and support you are giving in the search of a cure in memory of your loved ones and before other loved ones are affected.

I know the statistics of pc is not good and the odds of surviving are small but lets not give up!  I am so excited to have found this site.  I want to get involved and do what I can to raise awareness and funds to help with this research.  So while I hesitated to write this, I feel if I can offer hope to one person, it will be worth everything I have gone through.  

God bless!

My wonderful husband passed away on Nov 21, 2007 from PC at the young age of 47.  He was diagnosed on July 6, 2007.  He didn't smoke, ate well and was a runner so it was a shock to all of us.  He left behind two wonderful boys ages 13 & 10 who miss him very much.  I really hope a cure will be found soon for this awful disease!

It has been just over 5 months, and I still can't believe my Dad is gone. We lost him April 1st, 2008. He was my best friend. We found out he had PC Thanksgiving weekend of 2007. He was 71 years young. There isn't a day that I don't cry for him.  My 4 year old daughter and 10 month old son will never really get to know the big teddy bear. My daughter asks about him everyday. All of our lives have been torn apart by such a horrible horrible illness. My Mom lost her husband of 46 years, 6 days before their anniversary. My husband, misses him so much, he was his Dad. 

Daddy, I love you! I miss you so much!

Now in its second year, American Express Members Project offers individuals the chance to vote on which charitable projects will receive $2.5 million in American Express funding. Lustgarten Foundation friend and supporter, Carolyn M., has thrown The Lustgarten Foundation's hat in the ring to compete in the Members Project. You need not be a card carrying AMEX member to vote for us!

Only the top 25 nominees will be eligible for prizes, and the nominating poll closes on 9/1/08, so cast your vote today! Visit http://www.membersproject.com/project/view/HCAZZM 

Get Out The Vote: Ask family and friends to nominate our project using various promotional tools, including Facebook, You Tube, MySpace, E-Mail and more at: http://www.membersproject.com/project/promote/HCAZZM

We lost my father-in-law, John, to pancreatic cancer just a few weeks ago; he was 59 years young.

My father-in-law was a wonderful family man and a great friend; a loving father to his two children and the most dedicated husband a wife of 37 years could have. He was a hard worker and never complained about the numerous bouts with other cancers he faced in the last twenty years of his life. 

Unlike a close family friend who died just 2 weeks after diagnosis this past Christmas season, Dad passed away a full year after his PC diagnosis. While the Whipple and numerous therapies he endured afforded him some extra time, I have to think his positive attitude, unwavering determination and devotion to his family and friends kept him going as well.

Dad passed at home on June 20^th with his entire family by his side. 

Despite the gift of the last year we had with him, his death came far too quickly. That is all too often the face of this disease. 

While we planned on walking prior to Dad’s death, our family and friends gathered together to pay tribute to John on July 27^th at the NY Lustgarten Walk.  Still very fresh in our minds and certainly our hearts, we all walked to honor the man we loved so much and to put an end to this horrible disease for generations to come.

The Lustgarten Foundation does not manage a "store" and therefore does not have  items for "sale." However, you may wish to check out the doggie bandanas and/or unique hats for sale in support of our research by friends of the Foundation. Details can be found at: http://www.lustgarten.org/LUS/Navigation/CDA/ShowNavigation.jsp?NavId=184&OwnerId=0

Thanks for your interest in supporting our work!

Are there any other items besides the wrist bands from Lusgarten?

My mother was diagnosed with Pancreatic Cancer on February 20th, 2008.  She was only 63! What an absolute shock that my mother, our "rock" in our family was stricken with a terrible disease.  Never sick a day in her life, ate carefully and always took care of herself.  She held her head high, fought the disease with treatment for a few weeks, ultimately it took her life and took her from her Husband of 44 years, 2 children and 5 grandchildren who loved her dearly.  We lost her on July 31st.  It was the most painful experience I have ever endured as I made every attempt to care for her, while she held her head high and to the end worried about each and every one of us that she was leaving. That is who she was, she took care of every one of us. We will miss her terribly.  I enourage everyone to consider donating for reserarch to detect signs of this "silent" disease.  It will and can save our children and grandchildren. 

We would be happy to send you a brochure about the "Muzzi Mirza Pancreatic Cancer Prevention & Genetics Program," a service of The Pancreas Center at Columbia in NYC. 

Please call me at 1-866-789-1000 to provide your address (For your privacy and protection, please do not provide this information through the Blog).

Regards, Kim

I was saddened to hear of Dr. Pausch's death.  He was an inspiration and helped to shed much needed attention on this horrible disease.  My thoughts and prayers go out to his beautiful family.  

I still miss Mom but each day I get stronger. Unfortunately, her brother passed 4 months after she did, so the family is still trying to deal with this most recent loss.

I read with interest a previous post that referenced a Pancreatic Cancer Screening Center at Columbia Hospital.  Can someone provide additional information regarding this center.

My prayers and deepest sympathies are with the Pausch family.

Deb Fitzgerald

   I was very interested to see the post below, but I didn't know who posted it, in reference to losing both parents to Pancreatic Cancer.

Oddly enough, my parents died almost 3 years apart as well.  I lost my mother March 15, 2005 to PC, and I just lost my Father to PC in May of this year!  I saw that you said that it was 5 years and 2 years for your parents (the previous poster).  I've been active with Pancan.org since my mother passed from Pancreatic Cancer, never DREAMING in a million YEARS that my father would also contract the disease!  I have 3 older brothers as well, and both of the oncologists seeing my father and the family doctor told us that we should consider getting screened every year since we lost both parents.  And I said, "Um, Screening Process?  Do you know something I don't?" 

As well, my father had had a complete physical, a LONG series of Blood Panels, etc. on Feb. 29th of this year.  He received a Clean bill of Health the following week (1st week of March) During the 2nd Week of March, he started complaining of a pain in his back!  Well, of course, Back Pain!  Everyone would think it's Muscular.  After the doc sent him to a Physical Therapist for 3 weeks & no relief, Dad got a pain in his chest.  I just had a horrible sinking feeling.  Well, I'm sure you all know the process of Cat Scan (where they found a small lump in his lung), then several days later, biopsy, then several days later PET Scan, then several days later Results!  After all of the research I've done on PC, I was terrified that this small tumor had metastasized from the Pancreas, but I was told by every healthcare professional that I asked that "that is very very rare."  SO, we lost another 2 weeks there.  On April 15th (Tax Day of all things.  That's a lovely day anyway, right?)  Dad was told that he had Pancreatic Cancer which had already metastasized to his liver, his spine, his stomach, his Rib and some in his intestines.  I was absolutely beside myself.  Trying to be a comfort to my Dad, but I knew (and he knew after seeing my mother suffer with it) the ultimate implications of this horrific disease.  Especially with the Cancer having spread throughout his system already.

The two oncologists disagreed on when the Cancer had started.  One oncologist thought that it had just gone undetected for sometime; however, the other oncologist and our father's family doc felt that the cancer had just started in the past month.  So, I suppose that it could be either way.  The oncologist and the doctor told us that  I know that nothing irregular showed up in my Father's Blood Work or my Mother's Blood work.  However, if my father had JUST had his physical, and NOTHING showed up AT ALL, how much good would it do for my brothers and I to get checked once a year.  Well, I suppose any type of prevention is worthwhile.  It's just frustrating in general.  I miss my Mom & Dad so much!  My mother's family had absolutely NO history of cancer in her family, she lived a healthy lifestyle, etc., so her Cancer was a major surprise. 

I have to wonder if there were any environmental factors that would have contributed to their illness (something in the house, etc;) however, just as the poster below mentioned, I can't find any studies for families who lost both parents to Pancreatic Cancer.  Only siblings, parents and children, etc.  Anyway, I'm Christa, and if you'd all keep us in your prayers, I'd appreciate it.  As I'm sure many of you know, it's just a very difficult time right now, but God is getting us through.  And my determination to work to forward PC Research has doubled!

Thanks for listening!

Christa

“In my June 30th post, I said that my plan for July was to buy no more etail [online] bath and body until I ran out of things...the money saved this way would go into savings and into my fund to donate to The Lustgarten Foundation for Pancreatic Cancer Research the next time this year that I send them a check…”

I wanted to take an opportunity to congratulate and thank Karley for her commitment to supporting pancreatic cancer research. Karley is one of many special friends who choose to create unique fundraising activities in support of our work.

Believe us when we say that every dollar counts!

Community fundraising activities like these have already generated literally hundreds of thousands of dollars for our research programs—enough to support several research studies!

That’s why we are excited to announce that soon, friends will be able to create their own fundraising Web “theme” pages to collect donations in support of nearly any occasion or activity. Keep your eyes peeled for additional details in our upcoming summer newsletter…

In the meantime, we send special thanks to Karley, and to everyone, for your important partnership in the search for a cure.

Read Karley’s blog at http://kzmface.blogspot.com/2008/07/update-on-my-end-of-month-goal-from.html

Kim Johnke
Public & Patient Information Manager

The Lustgarten Foundation website has a whole section on familial pancreatic cancer studies.  Please see the Patient Services section of the website or click directly on this link:  http://www.lustgarten.org/LUS/Content/CDA/ArticlesDetail.jsp?NavId=117&OwnerId=0&ContentId=386&GId1=0&GId2=C

Generally, familial studies are done when a family has 2 people with pancreatic cancer that are directly related, but you can inquire about general surveillance studies.

It was two years ago yesterday that I lost my father to PC and it will be 5 years this August that I lost my mom. This is the first time that I have written anything, I guess I was just not ready. I have two older brothers and we have been talking about having some sort of testing or screenings done. We did call Johns Hopkins ( I live in MD) and they said that we did not meet the qualifications for any of their studies. Does anyone know of any programs or testings that we should do?

My name is Sandi.  I have posted before.  My husband died of pancreatic cancer at the age of 44 in October.  We have two children, ages 2 and 4.  The irony of my husband's diagnosis is that the disease runs in MY family.  My father lost 2 brothers and 2 sisters to this disease.  Because of my family history and the death of my husband I decided to have myself screened at The Pancreas Center at Columbia University Medical Center. 

An MRI revealed a small, benign cyst in the tail of my pancreas.  Because of my family history, it was decided it needed to come out.  Last week I had a laparascopic distal pancreatectomy.  They removed the cyst and 35% of my pancreas.  The cyst was pre-cancerous.  My doctors told me I would have had pancreatic cancer in a year or two if I hadn't had the surgery.  My children would have lost both parents to this insiduous disease. While I had the opportunity to be screened before I had any symptoms because of my family history most do not.  There is a need for less expensive and less invasive early detection methods for everyone.

I am writing as I lost my father three weeks ago and I am in awe of the stories I read.  On May 23rd my father passed away - a shock to my family.  He was a very stoic man who other than a heart attack ten years ago had rarely been sick in his life.  In April he and my mother were vacationing in Florida and he began to experience pain in one leg.  He saw a Doctor who diagnosed and treated him for Shingles.  I arrived on vacation with my husband and two children only to find him still in excrutiating pain, having also lost weight.  He had no appetite, was not sleeping and seemed to be getting weaker very quickly.  I took him to Morton Plant Hospital in Clearwater, where he was admitted, as they discovered he had a blood clot in his leg, and indeed in his right lung.  The medical staff proceeded to deal with this issue, but were expressing concern to us as Dad had been on a blood thinner since the heart attack and should not have been experiencing difficulties with clotting.  They suggested there was likely a mass somewhere that may have caused these blood clots.  A series of tests were completed, a filter inserted so that no more clots could travel and we were given the go ahead to fly home.  The medical team gave us every report of every test that was completed as well as a CD rom of all CT scans etc. and we flew him home to Canada via Air ambulance where he would see our own family Doctor.  On May 16th armed with all of our reports we saw a specialist who within hours admitted my Dad and told us that he had Pancreatic Cancer which had already spread to his liver.  He suggested that Dad had a few months to live.  They wanted to keep him in the hospital to "regulate" the pain medication and then send him home.  He did not live for one week past diagnosis.  It is a struggle to understand that someone can be so sick and be dying, and we did not even know it.  We were trying to cope with the diagnosis let alone deal with his death in such a short time. We continue to question and to wonder about this horrible disease which brought me to this site.  It was Dad's birthday yesterday....he would have been 77.  What I would give for one more hug......

Lesley

Thanks for sharing your story. We are sorry to learn of your loss and the all-too-common devastation of a late diagnosis of pancreatic cancer.

We know that the best chance for a cure is finding and removing the disease in its earliest stages - before it has had a chance to grow and spread. This is the reason that The Lustgarten Foundation has launched a $1.25 million Early Detection Biomarker Development Project. It is our hope that this project will ultimately lead to the development of a simple blood test to detect pancreatic cancer in its earliest stages - before even the most sensitive scans can find the disease.

While we appreciate the fact that this cannot help your dad, we hope that someday families like yours can benefit from better early detection methods that can be as simple as receiving a blood test in your doctor's office. Thanks again for reaching otu to us. Please feel free to call me at 1-866-789-1000 if you would like to receive any information or referrals for support services.

Be well, Kim

I just lost my father two days ago.  He was diagnosed on May 23 and eleven short days later he was gone.  Needless to say I'm still in shock and trying to absorb what just happened to my family. 

My dad had not been feeling well for a few weeks but we never imagined this diagnoses.  I talked him into going to the hospital on the 23rd to get hydrated and some food in him with the promise he could refuse any treatment he did not want. My dad had very strict beliefs and was very much against invasive procedures.

Once the diagnoses was confirmed the doctors agreed with my dad's decision to do nothing as the cancer was so advanced.  So it was with heavy hearts that we took our dad home on hospice on the 25th. They thought he might have four weeks but that was not to be but we are glad that he did not suffer for long.  Of course we would have liked to have had him around longer, we had just enough time to say goodbye and get his affairs in order.

I found this site a few days ago and just discovered this part of it this morning and knew it was the lifeline I needed to share with others that understand the pain I am feeling. 

Debbie

On Janaury 24, 2008 my sister passed away from this horrible dissease. In September, she came down with the flu, well that is what she thought she had . Nothing would stay in, if not coming out one way it came out the other. A few weeks later the horrible news, 8 days in hospital, getting stens placed to open blockage, draining her stomach.

By October moved in with my family, I was her care giver, and the last months of her life was in and out of the hospital, her stomach just would not work. 

The last time she needed to go to the ER room, she said I will go and get fluids but than I am coming home, I will no longer stay in a hospital.  Well little to my surprise, I was told there was nothing more they could do and she only had 7-10 days to live.

 We came home and 2 days later she passed.

She told me the last time in the hospital that she was tired. And I had to tell her that I understood and she could REST.

I know like many of you, that life will never be the same.

My sister, big sister, was my life.

Thanks for your recent post about the genetic, or familial, form of pancreatic cancer.  As you may know, approximately 15% of all cases of pancreatic cancer are genetic/hereditary in cause. (This is known as Familial Pancreatic Cancer, commonly referred to as FPC.)

In your post, you mentioned an interest in learning how you and your family can help researchers to learn more about the genes that cause FPC, and we thought you may wish to learn more about Familial Registries and/or Surveillance Programs.  Registries/Surveillance Programs are research projects with individual goals and eligibility guidelines. These programs are available to individuals with a family history, or a high-risk of developing pancreatic cancer. Although The Lustgarten Foundation does not manage nor conduct any familial Registries, you can contact each to learn their specific eligibility guidelines.

Information on FPC and Registry/Surveillance Programs is available on our Web site at http://www.lustgarten.org/LUS/Content/CDA/ArticlesDetail.jsp?NavId=117&OwnerId=0&ContentId=386&GId1=0&GId2=C

You may also have read a while back in USA Today about a study on FPC from the lab of Dr. Teri Brentnall at the University of Washington. Dr. Brentnall and her national team of collaborators found that a certain gene, Palladin, was linked to the development of pancreatic cancer in a certain high-risk family (known as 'Family X'). This news holds promise for someday being able to test individuals at-large for the Palladin gene. Dr. Brentnall is working to develop a blood test to check for the Palladin gene, however, one is not yet available. Further research is needed to examine the role of Palladin in other high-risk families as well as in sporadic cases. (Here is information on the Palladin discovery from our Web site: http://www.lustgarten.org/LUS/Content/CDA/ArticlesDetail.jsp?ContentId=389)

We hope this information is helpful, and we thank you again for your interest in helping to advance our collective understanding of pancreatic cancer. 

As I have read a lot of information on pancreatic cancer, I am starting to understand that it may be hereditary through genes.  I have been trying to see if there are any websites as to any research for family members to help with the cure.  My sister has pancreatic cancer and I would be more than willing to be a guinea pig to see if there is a family connection.  I have gone to Lustgarten.org, however I don't really see any direct infor as to specifics about the gene.  I have heard it is in your DNA and would like to know more as if it is hereditary, then there is a chance my kids may have it.  If anyone knows of any more websites I can visit or research programs, please let me know.  I want to do all I can to find a cure, as right now all we have is a temporary solution.  Thanks,

It came and went...There's was no mothers day this year or the next and there after. It now has become the others's day.

Lustgarten....find the cure!

My mom passed away in 2000.  It was very difficult for me.  I know what your going through.  The fist is the hardest and to tell you the truth, every year it hurts.  I remember when my mom passed and I was looking for something that would take away the pain and make me feel better. I went to bereavement classes and kept looking for something to help. It wasn't until I talked to a hospice chaplain who told me that I was looking for something to fix the pain and emptiness I was feeling and she then said "There isn't anything that will take the pain away.  You will always have the void in your life where your loved one was."  Ironically, this helped.  I realized, there is nothing that will take the place of that special person, how could there be.  We just have to go on and hold on to all the memories.  I have pictures everywhere of my mom.  It helps.  The first year my husband made a garden in memory of my mom for me, that helped.  Its those little things that get you through.  So if anyone is missing there mom this year, look at all the pictures and all the fun times you had and treasure them because that's how your going to get through this mother's day and all the future ones. The saying "time heals" is true, well maybe doesn't heal, but it makes the hurt not so painful.  Happy Mother's Day to all!

I have writen here several times earlier.  I lost my mom to PC Aug. 2006.  She was diagnosed in June and passed away in August.  Sometime I am in disbelief and amazement that this actually

happened to us.  I dreaded my first Mother's Day, which was last year.  I do not look forward to any family event any longer.  Her birthday, my birthday, holidays and of course Mother's Day.  However, I will say the anticipation of the day is harder than the day.  It appeared as if  I planned for it and knew how I would spend the day, it made it a bit easier.  Last year i planned what I would do Mother's Day, so that when I got up that A.M. it wasn't like oh my god, what do I do today without my mother.  My sweet and wonderful mother.  I went to the cemetary to visit with her and stopped at a few stores to do some errands.  It was a painful day, but the emptiness was bearable.

I think it was since I anticiapated it being bad I expected it to a difficult day.  I will probably do the same this year.  Sometime the enormity of what happened to her surrounds and overwelhms me.  It is difficult to explain.  It will be 2 years in August, actually in May 2006 she was diagnosed.  We were told she may have 6 months, but that was not to be.  My life is very different now.  I think about her each and every day and I miss her.  She knew it would be difficult for me.  She told me to be stong and go on.  We have no choice.  Mother's Day like all special family days are hard.  The pain is different this year, but it is certainly is there  for my brother & I.

Rhonda

It is with untold appreciation and sorrow that I share in your sentiments about wanting this first "Mother’s Day without mom" to pass as soon and as quietly as possible. I hope that you can do something special and that you can take good care of yourself on Mother’s Day. 

My mom enjoyed a love of gardening and was admired for her ‘green thumb.’ For me, taking some time to quietly reflect on Sunday while sitting in my own backyard – and perhaps planning a summer garden in mom’s honor’ – will allow me to take solace in memories of mom from days passed, while helping me to feel closer to her in the present by sharing a moment in the space she loved best – sitting under the warm sun.  

With warm wishes to you and your family during this difficult time,

Kim

As I approach the first one without my Mom, I can't explain the emptiness that I feel.   A day that I used to enjoy and look forward to making Mom feel "extra special", is now a day that I wish would come and go in a flash.

On March 20, 2008 my mom, had some swelling in her stomach, with pain, my sister noticed and brought her right to the ER, she had been constipated for a few weeks I thought she just needed to use the bathroom, little did I know she would be diagnosed with Pancreatic Cancer.  The told her it was cancer and admitted her to the cancer wing at the hospital.  They drained some fluid from her stomach and informed her it was Stage 4 Pancreatic Cancer, and she would only have 6 months to live she had all this energy, she said I am going to beat this thing, and I am going home.  She was home for 4 days when she dehydrated and had to go back to the hospital to have her stomach drained and received fluids.  She decided to have Chemo treatments so before she left two days later they gave her the first treatment, she was getting her stomach drained two times a week and chemo once after the second treatment of chemo, she could no longer walk and had lost almost thirty pounds in three weeks.  She ended up back in the hospital, and decided to sign a DNR and go on hospice she did not want to die at home.  After getting everything in her life organized, dividing up her belonging signing all the papers she needed to and arranging her own funeral she went into a comatized state.  That was on Wednesday April 16, at 5:10 pm she didn't wake up for 15 hours, then she woke up and started talking to everyone, the dr said to have everyone visit because it was just a matter of a day or so.  Thursday she went back into a coma state about 5:00p.m. and we thought that was it, but for some reason I knew she was still going to be there on Friday, and when I got to the hospital on Friday morning she was awake watching TV, she asked to see everyone she told them she loved them and sent everyone home except for me, my sister was the last to come up and when she said Mom I'm here my mother said I am going home, go away so I could go to sleep.  She passed away exactly 29 days after being diagnosed. 

I feel like some of the other people, I was really amazed that other people could feel the way I do, I can't believe that this happened and it went so fast.  She didn't even have time to enjoy the last days of her life.  She was raising her 9 year old grandson.  She was loved so much, and she is missed dearly.  I know that everyone says that it won't hurt so much after a while but I don't think that is true, I think I will never stop hurting so much, I lost my best friend, my mom, my childrens grandmother, My life. 

I really hope that there is a cure or at least some type of research soon so other people don't have to go through this.

Pancreatic acinar cell carcinoma is a rare neoplasm, accounting for only about 1% of all pancreatic tumors. The Lustgarten Foundation's patient information materials focus on the most common form of the disease (adenocarcinoma). However, here is what we were able to learn about acinar cell pancreas cancer:

The acinar cells are the cells at the ends of the ducts that produce the pancreatic juices. Acinar cell carcinomas are associated with postresection survival longer than ductal adenocarcinoma, but shorter than endocrine carcinoma. Survival for inoperable patients is also longer than for those with common pancreatic cancer. The tumours may also contain endocrine cells, and when more than 30% of the cells are endocrine they are called mixed acinar-endocrine carcinoma.

(Source: http://www.pancreaticcancer.org.uk/PCTypes.htm)

You may also wish to reach out to other acinar cell pancreatic cancer patients through the Johns Hopkins Discussion Forum at http://162.129.103.56/N/N.WEB?EP=N&URL=/MCGI/SEND1%5EWEBUTLTY(199,%228%22) and/or The Virtual Wellness Community at http://www.twcgreaterboston.org/id67.html.

Finally, you may wish to review The Lustgarten Foundation's listing of Patient Support Services at http://www.lustgarten.org/LUS/Content/CDA/ArticlesDetail.jsp?NavId=111&OwnerId=0&ContentId=380&GId1=0&GId2=C

We hope this helps give you a starting point in your search for information and support.  Please also feel free to contact me directly at 516-803-2306.

Kim Johnke, L.M.S.W.
Manager, Public & Patient Information

I was recently introduced to Randy Pausch via a radio program we listen to.  My curiosity led me to his web site, where I have been sitting for several days now, reading everything I can about Randy, and listening to this extraordinary hero.  During breaks, I have extended my own personal passion, unashamedly and without a shred of guilt  to family, friends, and neighbors.  There is much of what Randy said in his last lecture that just jumped out at me.  "Never lose your childlike wonder" is just one of them.  I am retired now from a career as a medical technologist at a major teaching hospital at the University Ca Irvine.  I loved how Randy enabled his students to achieve their childhood dreams, and making his classes fun...it remined me of my own lab and how I too made it "fun" in ways that had other techs scratching their heads.  Med tech students found my exams  be actually fun to take...one of my fav. programs is Jeopardy and in several sections of their final exam I would provide the answer for which they had to provide the question.  I even had "double jeopardy" with point wagering.  All passed with most excellent scores, but many Drs. who spent time with me in their rotations thru pathology depts. would say, "man, that's a hard exam"...which was exceedingly fun for me to hear and share w. the med tech students with great amusement.  I could relate deeply with many other of Randy's quotes, nevertheless, his message of achieving your childhood dreams, with the perspective of the reality of it being his last lecture has had a profound effect on me.  I do not know anyone w. pancreatic cancer at this time, however, having heard Randy's lecture and learning as much as I can following that, I have reached a major decision in my life.  At age 66 I have recently been giving much thought as to what my own destiny might be...what kind of legacy will I leave behind.  Randy, the Lustgarten Foundation, as well as the Pancreatic Cancer Action Network has helped me make such an important decision.  Over the last couple days I have spoken to the executive director of the Lustgarten Foundation...if you read this Kerri you will know who I am.  Also to the Pamela Marquardt of PanCAN.  Thank you both for listening to me and helping me find my own legacy.  Our advisor is aware of our decision, and will be assembling our Trust.  I now have new found solace and peace knowing that when we depart this here place, I will have played a small part in honoring and supporting this major endevour...early detection, and cure for this disease. 

My mom has almost been gone for 3 years & it still hurts.  I still think about her everyday!  I miss her terribly she was my best friend.  We had a big party for her she had just turned 55 April '05 and passed away end of May '05.  People try to cheer me up but they have no idea what I'm going through  I understand they don't know how to cheer one up but it just hurts.  I watched the special on Randy Paush.  It made me sad of course but I think that I want to get the book to understand it more.   I can't imagine what my mom went through the last few weeks :(.   I just wish we could find a cure so noone else suffers. 

Thanks,

Missing Mom

Samantha

On 12/7/2007 I wrote about my mother and how PC is following it's charted course. Once again it consume another life, towards the end of January. It has scarred a daughter and put images in the mind of family members that loved the mother, wife, grandmother, sister, aunt, strangers, and friends. No prayers, no God, no chemo, no doctor, could help save or grant us more time. I am angry, I am broken that I now wake up knowing my mother is six feet under ground. And now I have to say I will visit my mother at the cemetery. My mother was to young to die and I guess to old to be healthy. It was adenocarcinoma of the pancreas it stalked her for many years and like most found to late.

The Daughter

The Lustgarten Foundation is grateful to Randy Pausch for sharing his story and raising awareness about this deadly disease. Randy’s signature outlook on life has inspired and informed millions.  Watch tonight's ABC special program "The Last Lecture: A Love Story for Your Life" at 10pm ET.  Also, check out Randy's new public service announcement  in support of pancreatic cancer research on our home page.

Kerri Kaplan, Executive Director 

As I sit here reading all these stories I feel compelled to share my own.  My grandmother was diagnosed in November of 1996.  She knew something was wrong and I think she knew it was cancer.  She had a palpable bump in her midsection but whenever she went to the doctors they could never feel it (but my whole family could, even me).  She had studies and no diagnosis.  Finally my father, who works at a diagnostic center, told her to come in and have an ultrasound at his clinic and there they found the tumor.  I found out on Thanksgiving day 1996.  She was like a mother to me and I was (admitted by the whole family) her favorite grandchild- we had a bond that was too special and too strong to describe.  She was given no more than a couple of months-she could not tolerate the chemo and decided to wait for the end at home (she had lived with my family for 18 years).  However, to everyone's surprise, a couple of months came and went and she was still here despite the fact she could no longer eat.  A moist cotton ball so she could drink water and maybe a teaspoon of applesauce for a meal.  My parents kept telling me that she was waiting for my birthday and maybe even my highschool graduation.  Well, strong willed that she was, she made it at least part of the way.  On April 2nd, my 18th Birthday, she wished me a happy birthday and said her goodbyes; she was being put on a morphine pump that night and she did not know if she would be conscious for much longer.  On April 5th  it was like a miracle, she sat up in bed, she was in good spirits, even singing!  But in the early morning of April 6th, 1997 we were called to her side and were with her when she passed.  She did not see my graduation but I am convinced she defied the odds and lasted that long to make it to my birthday and it is something I carry with me to this day.  

I had never heard of any organization raising money for pancreatic cancer and when I found this I was overjoyed- this Sunday, April 6th (the 11th anniversary of my gma's death) I am walking in South Florida in her honor.  My thoughts and prayers go out to all those that are currently going through this fight, either personally or with  loved one.

My mom's golf tourney is just around the corner, and every year, I get so nervous on the turn out.  This year will be my first official tourney on my own.  I used to piggy back a golf tourney of a local restaurant, but found I could make more for the foundation doing it myself.  sometimes, like tonight, I pop out of bed, no matter how tired and worry about it.  I want to make her proud.  I want this to do some good, I need to fight this somehow, since I feel we lost so much when we lost her.  I don't want other daughters, sons, husbands, wives, grandchildren to go through this.  Every little bit helps, right?

www.pancreaticcancersucks.com

Carol VanAuken-DeAngelo

It will be 2 years in May since I lost my granny to Pancreatic Cancer. As I read the other stories posted so many sound like my own. My granny who sufferd many health issues was diligent with hert medications and diet. She kept records of everything, informed her Doctors of every change. She endured 7 months of tests and scans and miss diagnosis with no answers to her failing health. One evening the vomitting became so bad my grandfather rushed her to the ER. The following morning  more tests were run and she was moved to ICU and the next morning transfered to Hospice Care...still with no diagnosis. Another day later the news came...Pancreatic cancer... Terminal....Maybe a month...I dropped everything to fly to her side. I arrived Friday morning, it was her 74th Birthday. Before entering her room one of her caretakers said she was napping. I quitly went in, my heart sinking to the floor at the sight of her deteriated state and sat waiting for her to wake. I left her room for 1 hour to get lunch with my mom. When we returned the priest had been in to administer her last rights...we relized she would never wake from her nap. I got on the phone to my brother and husband. I had to get them to her if they would have any chance of saying good-by. My brother got off work and started the 12 hour drive, stopping to pick up my husband on his way. We sat in her room talking to her, holding her hand, stroking her forehead...praying she knew we were there...praying she could hear our voices. As the hours drew on people went home, my mom and stayed longer. When my mom was ready to go home and get some sleep I didn't want to go...I didn't want to leave my granny's side...My heart knew there wouldn't be another day, but I wanted to comfort my mom as well..so we left for the night. My brother and husband arrived just after 6am Saturday..they took a quick nap after driving all night to get there. We arrived back at my granny's room a little before 8am. The nurse outside her room said she had justed checked in on her 1 hour ago and her breathing had slowed, it wouldn't be long. We entered the room and greeted her as we would on any occasion, with hugs and kisses. My brother could hardly make his way into the room he was so stricken by the sight of her. She had lost all her color and she was in a cold sweat. Only moments later the rest of the family arrived...as we all gathered around her my mom aunt and I relized she hadn't taken a breath in quite some time. My husband asked the nurse to come into the room, and with genuine surprise at how quickly it had happened...she told us she had slipped away. Just after 8am on Saturday, May 6, 2006, one day after her 74th Birthday and 4 days after being diagnosed, my grandmother died of Pancreatic Cancer.

It's been nearly 2 years and the grief of her loss and the anger of not being diagnosed sooner haven't lessened.

Recently it seems there's been more awareness of this horrible disease..and I pray that the awareness brings with it research and treatment and a Cure!!!

I pray for those afflicted, I pray for the Doctors working to fight it and I pray for the families left behind in it's wake.

Thank You for leting me share my story with all of you

Kimberly

in California

I thought this was a good time to explain the Mitchell Berke Memorial and how it came about.

I'm sure you  have all see the link to the Celebrity Apprentice and the $50,000 donation that was given to the Lustgarten Foundation - well.. here is the "story".

My name is Nancy Berke.  I was once married to Vincent Pastore (of the Soprano's and other TV shows, movies and theater).  Vinny and I had a daughter together, Renee.  After our divorce I met and married Mitchell Berke - he was the sweetest, most loving, adorable husband and fabulous step-father to Renee.  After a time Vinny and Mitchell became friends, anyway to make a long story short.

Mitchell wasn't feeling well and as you all know how it goes, he went to different doctors for different things, but was never diagnosed with Pancreatic Cancer.  Finally after some time he went into the hospital to "see what was going on".  That was on Friday of Memorial Day weekend 2005.  When the doctor said he wanted to do a biopsy we were in "uh oh" mode.  Well that was it -  he was diagnosed with stage 4 pancreatic cancer.  We waited until after the weekend to tell the family - we needed the time to digest the situation by ourselves. 

The doctor suggested that he act immediately, but we felt that we needed to "check out the options".  Being from NYC we went to Sloan and Columbia, after a few weeks we ended up back in New Jersey (where our summer home is) and the doctor that we felt a connection with, the one who diagnosed Mitchell.

Mitchell chose to try a aggressive "off label" chemo.  He was convinced that he would be the one to "find the cure".  Obviously that didn't happen - he succumbed to sepsis (sp) the chemo was too much for him in his fragile state and he only survived for 6 weeks. 

Mitchell spent the week before he died with our beloved son (1st Lt. Jarett M Berke - Marines), feeling well enough to hit golf balls at Chelsea Piers and walk from there to our apartment in Battery Park.  On Friday, October 14th Jarett had to leave.  Mitchell didn't feel well enough to take him to the airport with me.  On Saturday he was felt worse and Sunday even worse, by Monday morning I knew he should be in the hospital, so we drove to New Jersey.

On Tuesday the whole family came to visit,  he was feeling great (after 24 hours of 7 IV's of various different meds) and told them to go home and not worry.  I left him on Tuesday night while he slept thinking that he'd be out in a day or two.  Wednesday morning I arrived to find him almost comatose.  I called the family - most made it - but not his son.  Jarett flight couldn't get him home in time.  Mitchell died at 4:40 p.m. on October 19th 2005.  He was surrounded by his Mom and Dad, his only sister and his two brothers as well as Renee, the step-daughter he cherished, my Mom and of course me.

I was lucky enough to have Renee and her now fiance take care of me and find the Lustgarten Foundation to have donations made to.  We continue to support the Lustgarten Foundation with walks in honor of Mitchell.  And, of course, I thank Vinny for supporting The Lustgarten Foundation in memory of Mitchell while on the Celebrity Apprentice. 

Nancy Berke

As I sit in church each week, my mind goes back to the day in calvary, Feb.9th, where she died.  I relive every moment leading up to her death.  I see and hear everything.  Easter was difficult to say the least.  I try to focus on the mass but all I see is her funeral.  I am so afraid I will forget the sound of her voice or how she looked before she got sick.  I am trying to keep my dad going.  Almost 50 years together has to make the loss even worse.  My kids miss her terribly.  Ironically, they comfort me more than it seems I comfort them.  Everyone tells me you never get over the loss of your mother, the pain just gets more tolerable. 

I will continue to pray for some progress in the war against this horrific disease.  I don't want this to be a worry for my children when they are grown.   

We buried Mom on 3/17/08, ten days before my birthday.  As I sit here on Easter Sunday, I am trying to be "okay" but am not.  A deep sadness is within me as I celebrate my first Easter without Mom.   Not forgetting the spiritual reason for the Easter season, Mom still made time for us to celebrate with candy and a special dinner. 

I am generally a very happy person but right now I feel like I will never have the same happiness in my heart. I will continue to pray for everyone who has lost a loved one to this awful disease.

I last posted almost 4 months ago saying that my dad had been living with pancreatic cancer for about 18 months, but was getting sicker. He passed away on March 5th. He was 66 and lived just shy of 21 months since his diagnosis, which I know is essentially a miracle.

He had been hospitalized for about two weeks prior to his death because he was retaining fluid and looking more yellow each day. He and my mom had talked about hospice care and it was important for both of them that he be on home hospice. Luckily, he was able to come home on the morning of Tuesday, March 4th, but he died on the afternoon of Wednesday the 5th. Because it was clear that my father's death was coming soon, so many friends and family members were visiting, and we were all able to be with my dad at the end.

We had my dad's funeral service on Monday the 10th and I like to think that it's exactly what my dad would have wanted. One of his close friends is a minister and he did the service. Several people gave eulogies, one more beautiful than the last. My dad was a long time supporter of the Chelsea Symphony in New York  City, and two of the symphony members came and played a song for the end of the service. So many people came to pay their respects...as I mentioned in my last post, my dad was an oncologist. Many other doctors with whom he worked, and former patients came. So many patients told us stories of how they loved my father, how they were cancer free because of my dad, etc. It was so wonderful to hear great stories and to see the literally hundreds of people whose lives he touched. However, it made me even sadder to think how his life was cut short and all of the good work that he could have continued to do for his patients.

I miss my dad all the time and I'm not really sure yet how to be without him. I just hope that he is still near me and that I will make him proud.

Rhonda,

Thanks for sharing your story with us over these past weeks and months. Learning first-hand about the challenges faced by pancreatic cancer patients and their families really strengthens our resolve to find better detection methods and treatments for this dread disease.

We will soon be telling our friends more about a new Biomarker Development Project that we are launching. We will invest more than a million dollars into research aimed at identifying promising biomarkers for the disease, which we hope can then be used to develop a simple blood test to detect pancreatic cancer in its earliest stages, before even the most sophisticated scans can find it. And, we know that early detection is critical to improving one's chances of survival.

We are very excited about this upcoming project, and we know that these kinds of important initiates are made possible through the kindness and generosity of friends like you, who help to support our work and raise awareness of the disease.

You are an essential ingredient in the search for a cure.  

I guess it helps and I feel a little better when I write.

I am much older and so was my mom, however I understand everything you are saying and experiencing.  My mother passed away from this disease 18 months ago.  I did not think I could go on.  She was my friend, my advisor, everything to me.  You do go on.  It is hard for me to believe sometime that I am, but we have no choice. At one time I found things she said annoying now I miss those words and can hear her voice advising and telling me things.

She also was not diagnosed properly.  We went to doctors and tests and nothing showed.  How can that be.  How can you be so sick and close to death and nothing shows????

I miss my mother very much.  I loved her deeply and I think and pray she knew that.  She told me to be strong and go on with life.  She was always thinking of her children.

Just remember we do go on. I do not know how we do it, but I think we are conditioned that way.

Rhonda

My mom was diagnosed with advanced pancreatic cancer late February 2007.  The news hit both of us very hard.  My family and I were stationed in Germany at the time and I was desperate to get home to console and encourage her.  Just two years prior she had been diagnosed with Type II Diabetes.  Her diet was changed and she diligently worked to lower those critical numbers. She had been on Prednisone for over five years for COPD.  I was finally happy with mom’s health…no more wondering when she would have to go to the hospital again because of her COPD and now she had Diabetes to contend with.  Turns out all the weight she lost in those two years was not due to eliminating Prednisone from her life or even the new diet for diabetics.  Instead, the Diabetes was a symptom of the Pancreatic Cancer no one knew she had…until it was too late.  Mom was a fighter from day one, refusing to acknowledge that this horrific disease could possible take her life.  She fought so very hard, and was granted a few extra months of life for her strength and courage.  Initially she was given 6 to 8 months and received a double bypass connecting her intestine to her liver and stomach.  Once she recovered from her major surgery, she began chemotherapy.  At her six month mark we learned the cancer in her liver had grown considerably and small tumors developed in the lower lobes of both lungs.  The fight was not over; she began a new regimen of chemotherapy and was given 3 to 6 months.  Three months later the cancer had all but taken over her liver.  She never gave up and underwent surgery for a port-a-cath to enable her to move forward with a third form of chemotherapy.  When I was home with her, we ventured out and enjoyed each other’s time.  When I was in Germany, we talked each and every day, adding laughter and hope to a nightmare we hoped and prayed to wake-up from.  My mom wanted me and my family home for the holidays and we were.  It was a whirlwind of activity, from doctor’s appointments, to surgery, to hospital visits, shopping trips and holiday traditions.  We had just over one month together when it happened.  The desire to go regardless of her weakness subsided.  She still refused to let the cancer take her precious life and fought until her last breath.  Mom always apologized to me for all that she endured thinking she was placing me under undue burden.  So like my mom, never wanted to worry anyone or put anyone out.  If only she understood that nothing could have been further from the truth.  She joined her husband in Heaven on January 11, 2008; just missing her momentous 65^th birthday celebration.  Mom is loved and missed so much more than she will ever know.  It breaks my heart to not have her here to talk to, laugh with, share our lives and have her be a vital part of my daughter’s lives.  I pray that more money is given to help prevent this terrible disease from sensuously taking anymore lives. 

In follow-up to my first posting:

Mom passed away on 3/11/08, exactly 2 months after my posting.  Her deterioration was fast and painful to watch.  She spent several weeks in the hospital but was able to return home, as she requested. 

Although I know she is better off without the pain and suffering, I sometimes wonder how I will make it everyday without her love, strength and encouragement. 

I have not had the opportunity to decide how we should honor my Mom's memory, but I do know that we need to fight for early detection for this deadly disease.  My heart ached at the posting about the father who was told that his weight loss was due to gallbladder surgery.  My Mom was told that she was experiencing depression and other ailments when she complained of stomach pain and poor appetite.  Perhaps the stories would end differently if early detection was available.

Just in reading your posts and hearing about Patrick Swayze, anytime I hear a PC DX story, I feel as if I'd been punched in the stomach.  Although I lost my mom 6 years ago, it seems like yesterday.  And just knowing what you are all going through, makes it so real to me.  I'm working on what will be my third golf outing in memory of my beautiful mother, Carol VanAuken.  I hate that it is becoming more known, but hopefully that will draw the urgent support that we need to fight this beast.  When Pavorotti (sp?) died from PC, I got a few phone calls saying, oh. did you hear who died from it??  When Patrick Swayze was DX, my phone rang off the hook.  I'm praying that he recovers against the odds, but I'm also praying for a cure in the near future.  I promise to do what I can to raise the funds to help that research, no matter how hard it hits me everytime I type that word.   I have started a website for my mom's golf outing, it will be up and running in the next few days, please keep checking and if you can, please participate in anyway!!!  I have appropriately named it www.pancreaticcancersucks.com

Please contact me if you have any questions at

we5go@aol.com

Carol Ann VanAuken-DeAngelo

After several months of pain and discomfort, my father's doctors removed his gallbladder, sighting it as the problem. However, his pain continued.

His doctors told him it was just side effects of the gallbladder removal--that maybe his liver was having spasms--that he would adjust. To "suck it up". Still in great pain, be became unable to eat and lost well over 50 pounds--2 days before Thanksgiving last year he was unable to take the pain anymore and went into the emergency room for answers. 6 months had passed since his gallbladder surgery--he had now lost over 80 pounds and during some screenings doctors had noticed his live was 4x the size--but did no further testing to find out why.

When he broke the news to us while in the hospital, we were devastated and shocked. The doctors discovered it was pancreatic cancer. To make the news even more horrible, the cancer had spread to liver. For months we were given the run around and his claims of pain were dismissed--we are still in disbelief as to why his complaints weren't taken more seriously! I agree that screenings on the pancreas need to be done if anyone complains of pain that may be gallbladder related. His cancer could have been caught months in advance, maybe not saving his life but prolonging it more than the 12 months he has now been given.

I love my father and he has struggled his entire life to get ahead and to support his family...no only us but his own brothers and sisters...we need to find a way to detect this cancer faster--it's too late for my father but others can be saved.

Hi.  My father was officially diagnosed in December with pancreatic cancer.  He is only 65. Unfortunately, all of us who have been touched by this horrible disease have the commonality that we have been forced to watch someone we love decline and suffer.  My father, too has lost so much weight.  It is hard to watch someone who loved to eat have very little appetite now.  Perhaps, someone or something chooses the best ones and brings them to an even better place when they die. 

I am writing this because my father was misdiagnosed back in the summer which from all of my learnings is common. They removed his gallbladder and then he turned jaundiced.  Is it me.......or does it not take a brain surgeon to figure out that gastroenterologists need to do a prescreening for pancreatic cancer every time someone has their gallbladder removed?  The prescreening should include a petscan (not a regular catscan which is usually used at GI doctors) The catscans used are not clear enough.  The GI doctors should be trained to look for this.  We have been told that this is a rare form of cancer but 1 out of 71 equates to over 37,000 people....doesn't sound rare in my book.....  We spend a trillion dollars on war and we can't afford this?  We send men to space and we can't figure this out?  Thanks to Vincent Pastore for shedding some public recognition to this horrible cancer.  OUR VOICES NEED TO BE HEARD.  

                                               love, Audra

By now, you have probably heard the breaking news about actor Patrick Swayze's confirmed diagnosis of panreatic cancer. We are always saddened to learn of another diagnosis, and we hope that increased public awareness will prompt much-needed support for research into the cause and cure of the nation's fourth deadliest cancer.

Read a story on Patrick Swayze in New York Post.  

My families story with Pancreatic Cancer started in 1999, my grandfather  (Pepere).  He was diagnosed in Nov. 1998 and passed almost exactly one year to the day.  I could do nothing of course, just like the rest of my very close knit family all I could do was watch in horror as my beloved Pepere dwindled away to nothing.  I could not beleive this man who was so strong and big, and happy was shrinking away and suffering from horrible pain.  He of course always tried to stay positive for the rest of us.  And I watched as my tireless Memere took care of him in their home of 40 or so years.  I would see her hold his hand, brush his hair, make his food, when he could eat.  I miss all of those things, I miss his presence, voice,  funny " kid I need my salt shaker"  that's what he called my Memere.  After he passed I was so worried that my Memere would be next, but she is a strong wonderful 72 year old women who still travels to Florida by car every year.     Thanks goodness for her....

Little did I know that in August of 2006 my father age 52 would be diagnosised with the same exact cancer.  He was not able to have the Whipple surgery like Pepere as the cancer was to far advanced and was wrapped around the main artery to the pancreas.  My dad lived and Georgia and I live in Connecticut so this time I had to watch from a far as once again my family watch a boistrous man, dwindle down to 100 pounds and pass away 6 months after diagnosis.  In that 6 months I traveled to Georgia 3 times, once with my daughter who was 14 at the time to visit and spend as much time with my Dad as possible.  I wish beyond belief that there was a early detection test for this disease maybe at the very least one of these men could have survived.  I have now lost both of them and still feel the pain everyday when I wake up and remember that I can not pick up the phone and call my Dad or Pepere. 

Please donate, money, time, volunteer anything to help the fight against this horrible disease, as now myself and my family are all at a higher risk to delvelope pancreatic cancer.  I am trying to get information and as much testing as possible.  I have also joined the pancreatic cancer registry for heretiary PC.   I urge everyone who has a first or secondary relative with this cancer to get as much information as you can and have your self screened.

Thanks for allowing me to share my families story

S. Smith   Connecticut

Although he brought much charisma to the show and we are sad to see him go, it has truly been an honor and a delight to be selected as Mr. Pastore’s ‘charity of choice’ for “The Celebrity Apprentice.” We have enjoyed watching Vinny compete for dollars in support of pancreatic cancer research on behalf of his friend, Mitchell Berke, and we could not be more pleased or grateful for this amazing opportunity to be a part of NBC’s Celebrity Apprentice.

Congratulations and many warm thanks to Mr. Pastore, Nancy Berke and the Berke family, NBC and all of the celebs, individuals and corporations who helped make our participation possible! 

We want to take this opportunity to thank Sir Richard Branson for his generous gift of $10,000 on behalf of Piers Morgan, as well as EMI for donating $5,000 on behalf of Trace Adkins. We would be remiss not to recognize the heroic efforts of Piers, who not only endured a short-lived stint as King Arthur and a willingness to “play his native card” on the streets of NYC, but who also reached out to his personal contacts to secure what would prove the winning donation, with only minutes to go in this week’s competition.

And, very special thanks to our MVP Vinny, who helped lead our favorite (megaphones-blaring!) Team Hydra to another week of victory – which has fast translated into $50,000 in important support for pancreatic cancer research!

We are proud to accept this generous gift in Mitchell’s memory. Very special thanks to NBC, Mr. Donald Trump, Vincent Pastore, Team Hydra, and all of the celebrities and generous individuals and companies who helped make this amazing gift possible! We also wish to thank Nancy Berke and the Berke family for establishing The Mitchell Berke Memorial with us.  

For those of you interested in learning more about Familial Pancreatic Cancer (FPC) and/or ways to get involved in research into FPC and/or Screening/Early Detection, please visit our online section about Familial Pancreatic Cancer in "Patient Resources" at www.lustgarten.org.  

Ten years ago, I lost my funny, athletic, loving 52 year old father from pancreatic cancer.  Eleven months before my father's untimely death, my maternal grandmother died from the same deadly disease.  To say that I am grateful for the amount of awareness currently about pancreatic cancer would be the understatement of the year!  I am hearing about how this disease is possibly genetic, and about how now they may have made some serious progress on how to determine who might get the disease.  Having seen two people I love suffer so terribly from the effects of pancreatic cancer, I am encouraged by the news that progress is being made about how to fight this disease! 

Still, there is more work to be done...  For example, how can I help?  No, I do not have cancer (Thankyou- Jesus!), but I am willing to see if what or if my DNA could find any answers.  Is there a way more information could be put on your web page on how the surviving family members can help in a clinical setting?

Thankyou!

Jane

Indiana

 I really wanted to reply to the 2 daughters who have recently written something on this blog.  Back in Oct. or Nov. I wrote my story as well, it was entitled, "MY MOM, MY WONDERFUL MOM".  My mother and I were more fortunate, I am older than you and my mother was older then your mom's.  However the pain, disbelief and questions are still present.  Why? Why? Why? How could it have happened?  We went to doctors, she had blood tests and scans nothing showed.

She was diagnosed in June and also lived only 3 short difficult months.  It is a 1 1/2 years now that she is gone.  The age factor helps a little and gets me through part of it, however I still feel it did not have to happen if there were better testing for Pancreatic Cancer.  Also if  the public was more aware of this dreaded illness.

I do not watvh much television, but when I found out about the Lustgarten and the Apprentice Show I started to watch.  I was sad but happy that we succeeded Thursday night. Actually, bitter, sweet.   That money will certainly help.  Perhaps not help us any longer, but hopefully will benefit other moms and daughters in the future.

It is so difficult to understand why this comes along and takes the person we love so much and so deeply.  It gets easier, however it  still hurts and at times the pain is overwhelming .  Nothing is quite the same anymore.

Rhonda

My Mother, Carol, died 3 years ago today from pancreatic cancer.  She was 62.  In August 2004, She started looking "yellow" and doctors thought she had a reaction to medicine.  It never went away. On October 26, 2004 she was admitted to the hospital and they found a tumor on her pancreas.  She died 3 months to the day of being diagnosed.  Everyday I miss her so much and I now have to be checked for Pancreatic Cancer.  After watching the Apprentice, I am so glad that the Lustgarten Foundation is being recognized.  It is a terrible disease for someone to have and family to stand by and watch the deterioration of a loved one.

I love you Mom,  Colleen

My mother (77 years old) was just diagnosed with pancreatic cancer.  Imagine our shock at this diagnosis.  Because of Mom's age, you would expect the other illnesses that can ravage the body at her advanced age, but a cancer diagnosis was the furthest thing from our mind.

Since this time, I have been immersed online trying to find out all of the information that I can about this disease that appears to deliver an immediate "death sentence" to those who are diagnosed.  Why is it that my Mom complained of severe stomach pain off and on for years, yet her physician passed it off as "in her mind"?  Where are the earlier tests that screen for this disease?  The testing that my Mom finally received which confirmed the PC.  While I am sad, angry, fustrated and many other emotions at this time, I am chosing to direct these emotions into actively working within the system (foundation, family support groups, etc.) to push for early detection and testing, raising funds for the foundation and hopefully, finding ways to support the researchers who are working dilingently to find a cure for thsi disease.

Our family has come together around my Mom and continue to enjoy the time that we have left with her.  We are praying for her comfort and that no other family will have to endure the pain of this disease. 

I am 42 years old and although I am thankful for the many years that I have had with my Mom, I still am saddened by the thought of living with out her.  I don't know if she will have the opportunity to see my oldest son graduate from middle school this year or my youngest graduate from Pre-K.  Over three months ago, I was making plans for the "parties" and had her included.  Now, I am just praying that she is here for Valentine's Day, my birthday, Mother's Day and hopefully, the graduations in June.  If she is not, then I will take comfort in knowing that she is with us in spirit and always will be. 

I will keep everyone who has posted on this site and their family in my thoughts and prayers.  Thank you for sharing your stories of strength, encouragement and survival.

For those of you who did not catch the January 24th episode of The Celebrity Apprentice, our man Vinnie Pastore was the winning project manager and The Lustgarten Foundation is to receive $50,000 in honor of his win.  Mr. Pastore talked about his friend Mitchell Burke, who passed away from pancreatic cancer three months after diagnosis.  He mentions that he is participating in The Celebrity Apprentice for The Lustgarten Foundation.  Check it out on nbc.com -- it was a terrific plug for The Foundation.

Kerri Kaplan, Exectuvie Director

Great Job Vinny!

Thank you Mr. Trump for allowing these wonderful celebrities the opportunity to raise much needed funds for these very important causes.

Dr. Folkman’s theory of angiogenesis (first published in the early ‘70’s) proposed that tumors require their own blood supply, and that one possible way to counteract cancerous tumors would be to cut off their supply of blood through what is now commonly referred to as “anti-angiogenesis.”

Bevacizumab (Avastin), developed by Genentech, was the first specifically designed anti-angiogenesis drug to receive FDA approval for first-line treatment of metastatic colorectal cancer. The use of Avastin in combination with other drugs is also being tested in clinical trials treatment for pancreatic cancer.

Among his many renowned scientific achievements, Dr. Folkman is credited for his ability to translate complicated scientific information into interesting lectures for a lay audience. We were fortunate to have an opportunity to hear Dr. Folkman lecture when he served as Keynote Speaker for our Year 2003 Annual Scientific Conference, Biology and Management of Pancreatic Cancer, in cooperation with Dana-Farber Cancer Institute/Partners CancerCare - Harvard Medical School in Boston. Dr. Folkman also served as a member of The Lustgarten Foundation’s Scientific Advisory Board. 

Read More About Dr. Folkmanand Angiogenesis:

http://www.cancer.gov/ncicancerbulletin/NCI_Cancer_Bulletin_012208/page2

http://www.dana-farber.org/abo/news/publications/pop/spring-summer-2005/spring-summer.pdf

Hi Deb:

Point well-taken. Unfortunately, most of the season was taped before we had any knowledge of the charity theme, so we were unable to participate--we, too, would have loved the opportunity to enjoy an overpriced hot dog in support of pancreatic cancer research! ;-) Thanks for watching!

I did watch the show. It was to bad that we did not know when this episode was filmed, I'm sure many of us would have made the effort to generously purchase a hot dog.

Deb

Did you see our man Vinnie last night on The Celebrity Apprentice?  (For those that don't know, Vincent Pastore, of Sopranos fame, is competing in The Celebrity Apprentice and he is playing on behalf of The Lustgarten Foundation.)  He did not have a very big role in the episode, but I'm sure we will see more in the coming weeks.  I was excited to learn that the non-profits will be receiving donations throughout the season -- not just one charity at the end.  Keep watching to see when it will be The Lustgarten Foundation's turn! 

Kerri Kaplan, Executive Director

Tomorrow night (1/3), please tune in to “The Celebrity Apprentice” at 9pm EST on NBC to see Vincent Pastore (best known for his role on “The Sopranos”) as he competes on behalf of The Lustgarten Foundation. If he wins, The Foundation will receive $250,000!!! Mr. Pastore is quite business savvy, and we look forward to watching him in action! Please join us in rooting for Vincent! Learn more…

On another note, last month I had the pleasure of visiting with Randy Pausch and his family. A film crew and I spent “a day in the life of Randy Pausch” to gather material for a public service announcement, which will soon be released and available on our website. 

Also, on January 14, The Foundation’s Scientific Advisory Board will be meeting to review grant applications in response to our multi-million dollar RFA to develop antibodies for pancreatic cancer biomarkers. This is the first step toward a blood serum test for pancreatic cancer, and we are quite excited about the possibilities this project offers. In the meantime, check out our new listing of (one-year) grants.

Kerri Kaplan, Executive Director

It has been 10 months since my husband passed away at the age of 42 from this horrible disease.There was no time for chemo,or tying up loose ends,or time to tell and prepare our 8yr old daughter,because he died only 4 days after diagnosis.Over the coarse of a year, he did experience weight loss,but figured it was from working too hard and long hours at his construction business.He had severe back pain but thought it was an old injury acting up and back pain came with the nature of his very physical work. By the time he went to the hospital, the pain was so severe he couldn't walk.He was admitted on 2/9/07, on2/16/07 they gave us the news of a death sentence.His cancer was in the final stages in the pancreas, liver and lungs. He asked to come home and  die, and thinking he had more time, I set up Hospice. On the morning of 2/20/07,he was transported home, and got his wish.He passed away peacefully only ten minutes after being placed in our bed.Having planned on bringing him home to care for him,I hadn't told our daughter he would die.How do you tell an 8yr old her Daddy won't be there to see her grow up? As time goes by, it becomes more of a reallity that he is no longer here.The silence at home after she has gone to sleep,is a grim reminder that one  more day has passed that it is just me and her now. Some people may think it must be a relief that he didn't suffer.However, he suffered in silence, just without an official diagnosis. I urge everyone I know to support research and funding for PC. I'm anxiously awaiting the Fall so we can do a local walk and raise funds.I'm hoping with time that things get easier, as I've learned to take nothing for granted.Does anyone else out there ask themselves,why MY loved one?Or if only I had more time.I often wonder what went through my husband's mind as he lay there unable to speak.Was he afraid ?Or perhaps angry?I am grateful for having had him in my life.He'd built plenty of houses from foundation up,and like he always said,the best thing he "built" was our daughter.I only wish he could be here to see how she's growing on the foundation he built for her!

I consider myself lucky on one hand because I was blessed with wonderful parents.  Then I don't know what to say about the other hand.....24 years ago my Father died of pancreatic carcinoma...then 13 years later my Mother died of pancreatic carcinoma...My thoughts and prayers are with any family touched by this disease.  May God help us all find peace.

Many weeks ago I wrote my and my mom's story regarding pancreatic cancer. This blog has bcome a very important souce for me.  I read everyone's sad tale and I sympathize with all familiers.  I can relate best to the daughters who lost their moms.  Their mothers was much younger, but the pain and sadness is the same for all of us.  We ask the same questions, what could we have done, why did this happen?  We will never know the answers.

Thank you for providing the little comfort this site brings to us.  It is very important to hear and understand other stories, we are not alone.

Rhonda

Each day, we here at The Lustgarten Foundation check the blog to see what is on the hearts and minds of our friends. We had no idea what to expect when we started the blog this past October – but as we read the many stories you have shared in the days and months since, we are gaining a new appreciation for just deeply this disease affects people – and we feel renewed determination to find a cure.

Today we’d like to share some exciting news, which we hope will offer a smile to our friends: We recently received news that actor Vincent Pastore, best known for his work on the HBO hit series, “The Sopranos,” will be competing in “The Celebrity Apprentice” for the chance to present The Lustgarten Foundation with a $250,000 “Bonus Check” donation. We hope you will help us start the New Year off on a "hopeful foot" by tuning in to The Celebrity Apprentice each week to root for Vincent. The Show airs on Thursdays (beginning January 3) at 9ET/8CT pm on NBC.

Learn more about Vincent and his interest in pancreatic cancer research. 

From all of us here to all of you, please accept our best wishes for a happy and healthy New Year.

Kim Johnke, L.M.S.W.
Manager, Public & Patient Information

 Feeling so beaten down and running out of time. There's never good news for her, for us and by reading about PC and doing research the cancer in my mother is following the charted course it is instructed to do. Why can't, why won't the chemo stop it, in it's track, just to give us time. Why have we’ve been choosen to beg, to pray, for time, a cure, a miracle. When others sleep easy at night or walk freely without worry, only to say we all have to die sometimes, besides I might get hit by a bus in the mean time. I would take that saying faster then the speed of light and give that to my mother in exchange to give her cancer back. I wonder how do you get on the longevity list? I was glancing at the obituaries today and looking at people’s ages, out of 6 people who were listed in black and white one died young at 55 and the oldest was 97. That age 97, is something I won’t have to deal with in my years to come. What to do with an elderly mother? How many times have I read this saying after a long battle with cancer he/she went to eternal rest. It should read went to eternal rest because there was no other option, treatment, God, he/she didn’t really want to die, but had no choice. Death Sucks! When fall is coming, a spring haze, a new puppy is waiting, retirement finally, seeing your children hit a milestone birthday, walking down the aisle in white, or knowing the grand babies won’t remember grandma. They won’t know grandma’s love, voice and smell, or her kitchen and the biggest of all her great big kisses and hugs. It’s amazing because these things from grandma can pass through walls, telephones and computer screens and when sick feels so much better. The grand kids will have to explain to there friends and dates, and future husband or wife when asked. I didn’t get to know my grandmother she died when I was young. I’m sure this map has been read many times over, in many strangers lives. Losing a loved one happens, it’s painful to watch life run out of the body and saying good-bye instead of seeing you later. And your left alone in the same place, same routines but something is now missing. If only we lived knowing we will make it to 100, in good health and not taking out of our lifetime by a gun, terrorists, drugs, or a drunk drive. After all this makes me think of those Mylar balloons or cards with the saying of get well soon, hope you feel better. They should be sold with a warning not for a pancreatic cancer patient.

I can't sleep any more what I wrote is due to what the onc had said. That the recent non-pc drug (investigational new drug for PC) is not working, you failed a few other chemos and an option would be hospice care. Whoa! The floor fell from my feet and I passed out in my head as I was standing still. My mother looked at me like a deer in headlights and said what about the people you talk. I speak of the people who are fighting and living with PC and some once dx get two, three, five years. Her look, that look will scar me, it's embedded into memory now. And the hugs after the onc left the room she asked for, and said she does not want to leave me, she thought she would be with me forever. I think you all know what forever means just a nice old age. She said she was sorry to do this to us, I always say to her don't you be sorry this is not your fault. Now the planning for the end and tying up loose ends will begin. I just can't believe where here at this point in the battle. Where still going to seek another opinion but where in another phase of this disease that is following it's charted course. 

Thanks,

The Daughter

This is the face of pancreatic cancer.  This is my husband  John who died from pancreatic cancer on October 14, 2007, just one week shy of his 45th birthday.  Those are our two children whose future I now fear for.  You see, pancreatic cancer runs in my family.  Now my children have a predisposition for this disease on both sides.  This is why research and funding for this disease are so critical.

 Just want to offer my condolences on the loss of you mother.  I wrote something on this blog as well a few weeks back, "MY MOM/ MYWONDERFUL MOM".  You may have had a different type of relationship with your mother, but either way I understand how you feel and how difficult it is to believe this has happened to us.

 . 

My mother lost her 8 month battle with Pancreatic Cancer this morning. I posted my story in the blog titled "My Kind of Mother/Daughter Relationship". I don't really know why I came here to post that my mother passed away, I guess I'm just looking for an outlet with people who understand EXACTLY what's going on in my life right now. I dunno, I guess I just don't feel like this is my life right now and  needed to put it somewhere to make it real.

Thank you for this blog!!

Thank you for allowing me to share my story.

In 2005 I participated in the walk with a friend at WestburyGardens. Little did I know that the man I loved was suffering from this horrible disease. 

Chris was a loving father, son, brother, uncle, nephew, cousin and friend. He was a hard worker who never stopped. If not at work he would be helping either family or friend with whatever needed to be done. He loved the outdoors, fishing, hiking, camping. He not only enjoyed watching the NY Giants, he also enjoyed watching his nephews play football, baseball and basketball.

Chris was only 45 when diagnosed and passing from pancreatic cancer. When he first started to feel the back pain he blew it off as lifting something the wrong way. As the pain progressed, he barely ate claiming that the pain was to extreme to eat. He would sit in the chair to try and get comfortable to sleep, although that did not work. At first the weight loss was slow, but overnight he withered down to nothing.

Once diagnosed, he wanted to know what he could do to help prevent this from happening to anyone else, especially his daughter, sister or nephews. He also made us all promise to do whatever we could.

I myself have lost other family members after long and difficult illnesses. I have to say seeing what this disease does to a person is far the worse I have witnessed.

I look forward to the day that the tears I shed at the walk will be the result of the announcement that a cure has been found.

Thank you for the wonderful job this foundation does.

Deb Fitzgerald

Each day I go to The Foundation’s blog and often there are new postings from families sharing their personal stories.  I don’t know these people personally, but as Executive Director of The Lustgarten Foundation, I know many families with similar situations.  Each story has a profound effect on me.  On Monday, November 12, The Scientific Advisory Board of The Lustgarten Foundation met to set our scientific strategy for the next several years.  We acknowledge that the science has come a long way – less than 10 years ago you could count the number of researchers studying pancreatic cancer on one hand, now there are hundreds.  The Foundation has supported important animal models, studies for high-risk patients, vaccine therapy, and more.  Now we need to concentrate on more studies that will directly affect the outcome for our patients: studies like the Early Detection Initiative, which I have mentioned, and other studies to be announced in the coming year. 

Next Spring, The Foundation’s pancreatic cancer genome project will be completed.  This will be the most complete genetic analysis of any tumor type ever accomplished.  A tremendous amount of information about the genetic changes that cause pancreatic cancer and the genes that can be potentially targeted for therapy will be revealed.  Follow-up studies will be geared toward shortening the road for a cure.  Your voice is being heard.  We need a cure.  Happy Thanksgiving to all!      

Kerri Kaplan, Executive Director

    My Loving Husband of 42 years was diagnosed in august of 2006 . He had the whipple procedure in september the doctor was able to get all the tumor, But he had told us before the surgery even if he could get it all there was the chance of having free floating cancer cells and of course just my husband's luck there were.After the surgery He had 25 days of radiation 24/7 infusion chemo along with the radiation then a month to recoup from the radiation.and then weekly chemo of Gemzar, but the problem there was the chemo would drop his platelet count and he would have to skip a week of treatment for it to come back up.This happened almost every other week,so the cancer spread to his liver.He would tell me he could feel his self getting weaker everyday.He asked me if I thought he was getting better,I told him I didn't know,just to wait and see if the chemo was going to do it's job.I then asked him what he thought and he said he thought he was dying. He said you could see it in his eyes, and he was right but I just could'nt admit that to him.He died March 15th of this year 2007. Pancreatic cancer is a very cruel and sneaky disease.

 I MISS MY LOVING HUSBAND.

  THANK YOU for Allowing me to tell abit of my husband's story.

    Rachel  

Today I read a blog from a young woman named Sandi, who told the story of how pancreatic cancer ravaged her family – four of her father’s siblings died from the disease. And while she feared for her own life and for that of her brother, she was devastated with the news that her husband was diagnosed with stage 4 pancreatic cancer – she lost him, too. Stories like this reinforce the need for a simple test to diagnosis pancreatic cancer earlier, before it has spread (when there is little chance for survival). Sandi’s blog mentions The Lustgarten Foundation’s Early Detection Initiative.

This week, we received applications from investigators eager to start work on the Early Detection Initiative. A special scientific panel will soon meet to review these applications, and we expect to award grants for this exciting new Initiative in 2008. Although it will take a few years to see results from these projects, stories like Sandi’s are a poignant reminder of the urgent need to start this kind of research NOW.

We'll keep you posted as the project progresses.  

My mother and I never had the "mother/daughter relationship" that I have always heard so much about. She was always more of a cut and dry, get down to business kind of person and I have always been a free spirited, do my own thing kind of kid.

In March of this year (one month after her 52nd birthday), my mother was hospitalized with sever back pain and jaundice. After a few Endoscopies, she was diagnosed with an adrenal carcinoma on the head of her pancreas. Right off the bat I started doing research on Pancreatic Cancer. Altho I didn't need the internet to tell me the severity of the disease, I was (and still am) in disbelief of the neglect it receives. I had planned on moving out of my mothers house that April... those plans changed at the drop of a dime.

In May we went  down to Johns Hopkins in Baltimore for my mother to have her Whipple. Things looked on the brighter side of the disease and all of her doctors seemed hopeful. Halfway thru the day (not even half way thru her surgery), two of her surgeons came to the waiting area and took myself, my brother and my uncle to a private room to discuss the "reality" of her situation. It turned out that her alleged "operable" tumor had invaded her portal vein as well as the rest of her pancreas and liver. Her surgeon had decided to proceed with the surgery because of her young age and general good health. In the process, her portal vein was damaged and in total was infused with 6 blood volumes. They had basically come out to tell us to prepare for the worst. The rest of the day pretty much went by as a blur. Even now when I think back to it, it's kind of like it hasn't really happened.

After 12 hours of surgery, her AMAZING team of surgeons packed my mother and left her open to resume the surgery the next day, when a vascular specialist could come in to repair her portal vein and they could finish her complete pancreatectomy and duodectomy. On May 4th, surgery went on as planned and after another 12 hours, they had closed my mother up and gave us the okay to see her. This had to be the hardest day of my entire life. At 24 years old, I never could have imagined seeing my mother the way I did. I never thought I knew my mother that well, until I realized that the person I was looking at wasn't my mother.

After a grueling 2 weeks in Johns Hopkins ICU and another week in their surgical ward, my mother was released to come home. Since then she has been hospitalized on numerous occasions do to complications from her medi-port they put in for chemo and infections. During surgery her doctors told me that if they didn't complete her surgery they wouldn't even give her 4 weeks. She just went into her 7th month. In the last 7 months I have poured my heart and soul into working with the Lustgarten Foundation and the Pancreatic Cancer Action Network. Mom is doing as well as can be expected altho not currently undergoing any treatment because she is too weak to handle it. It's expected for her to begin a new course of Chemo in a few weeks after her blood counts are back to normal and she can actually build up the strength to get out of bed. My friends have been MY life support and indirectly my mothers because without them I wouldn't be able to do it. They always ask me where I get the strength and honestly, I haven't got the slightest idea. I guess it's survival mode kicking in?

I recently made the decision to move out of my mothers house again. I won't be going far and I'll be with my mom every day after work to do dinner and bed time with her. I've never asked why this happened to her. But I always wonder how we all have been so lucky, we have been given so many extra chances with this savage disease lurking over us. I know I'll never have that "mother/daughter relationship" that I always hear about but the bond that we've formed is something that I will always have to carry with me. Being able to be there for her physically shows her that altho emotionally we may not have always connected, I truly love my mom.

I get absolutely enraged when I think about the lack of information in the world about Pancreatic Cancer. But I know that our goals are reachable. They have to be. I have met some of the most amazing people through my family's struggle. Patients, survivors, families, doctors, who really care about the cause.

 I was  one of the fortunate people, I had my mother for many years.  However when she was diagnosed with Pancreatic Cancer Stage 4, I was in shock and I do believe  in denial.  Although my mother was in her 80's she was independent, basically in good health and her mind was just amazing.  Everyone would comment that speaking with her was like conversing with someone  many  many years younger.  No one would ever guess her age.  She had so much to offer and I loved her so much!!!!  Why did this have to happen?

 We were a very close family and would do almost anything for each other.  When she was diaganosed , I think I just went into a different mind set.  My brother helped make many of the decisions from that point on.  I  could not decide whether we subject her to chemo or not.  The

outlook was the same either way.  The doctors said 4 - 6 months and that was in June 2006.  She passed away August 18, 2006.  Just 3 months later. Prior to her illness  I would see my mom 3, 4, sometimes 5 times a week.  She was a major part of my life and I helped her whenever she needed anything.  We did errands together, shopped together , watched television when she was very sick.  My heart still aches when I think that she is gone.  It is difficult to believe my family went through this nightmare

When my mother first became ill, I could not bring myself to read about Pancreatic Cancer.  Now I read everything I can obtain.  It is only now that I realize she never had a chance. Pancreatic Cancer is  very seldom caught in time.  There are few symptoms and by the time a person is diagnosed it is usually too late .  Without  research and support this will continue.  The death rate will not decrease and lives will be lost.  Families will hurt and hearts will be broken.  How much does the public know and understand about Pancreatic Cancer?   Like so many, i knew very little until it hit us.  How many people know "November is Pancreatic Cancer Awareness Month"?  If we do not educate the public this situation will not change.  Breast cancer, colon, lung, ovarian

have all been brought to the surface.  Why hasn't Pancreatic Cancer been given the support it deserves?  I would like to do something to help this cause.  I cannot help my mom any longer,  I lost the most special person in the world , however we can work together to help other families avoid this ordeal.

A LOVING DAUGHTER

Dear Oprah,

Thank you for your show today on Randy Pausch. My father has stage four pancreatic cancer, so the topic hits home. Pancreatic cancer is a mystery. We don't know what causes it, or how to prevent it. The worst is that by the time it's found, it's usually too late. My family is lucky in that my father is doing well right now. He is strong, looks healthy, feels good. His last scan was virtually clean, but like Kris Carr he has stage four cancer and that doesn't change without a miracle. My family and I recently walked in Boston for The Lustgarten Foundation for Pancreatic Cancer Research. I couldn't help but note as I was lucky to walk WITH my father, just how many people were walking in honor of someone who could only be there in spirit.

While I think your show today on death has informed some people that pancreatic cancer is "not the type of cancer you want to get," I implore you to follow-up this show with a show devoted to pancreatic cancer. Researchers are only beginning to tap the surface of pancreatic cancer. It was so important that you gave a face to pancreatic cancer with Randy Pausch. ANYTHING that can be done to bring awareness, spur donations, or facilitate research will only benefit those who are living with and dying from pancreatic cancer.

November is Pancreatic Cancer month - a lot of people don't know that. This is unacceptable. Oprah, you have a forum that reaches so many, please give thought to a episode devoted to pancreatic cancer and what we can do to combat it; you have access to doctors and research that most Americans don't. Knowledge is power, and we need all the power there is to fight this terrible cancer. You give people hope, Oprah, and it's my hope that you will help patients and their families by continuing to get the word out. This episode was a step in the right direction! Thank you for your time.

Best,

Kate Coughlin

As I read "Missing My Dad", I realized this was written by the lovely young woman the Foundation worked with last year to do a Community Event.  At the time, she made handmade soaps and candles, and ran two special promotions where she gave a portion of her proceeds to The Foundation.  I made a purchase of some small gifts for Valentines Day and it felt good to support her and to also know some of that money was going back to pancreatic cancer research.  And to Marilyn - when you are ready to start your "Abi's Team", let us know, and we'll help you get started.  This year's Pancreatic Cancer Research Walk in New York hit one million dollars, the largest ever at one Walk location, and over $1.6 million was raised nationally from Walks.  A family in New Jersey put on an In My Community Walk that raised over $40,000 in its first year.  Thank you all for sharing your beautiful stories and to all those continuing the fight against pancreatic cancer!   

Kerri Kaplan, Executive Director

The face of pancreatic cancer is finally starting to change, and thanks to an unprecedented amount of research activity, we are learning about one exciting pancreatic cancer discovery after another – each one offering hope for those whose lives have been affected by this disease. 

As the media increasingly recognizes pancreatic cancer and the unique challenges associated with it (we’ve all seen the recent news about Pavarotti and Randy Pausch), we have decided to keep our friends informed of what we know about that’s happening in pancreatic cancer research. Hence the reason for starting a Blog.

Sometimes you may hear from me, while other times, our Public and Patient Information Manager (Kim Johnke) may chime-in with something to share. Either way, we hope this Blog will serve as both food-for-thought and a vehicle for communication with our fellow comrades in the fight against pancreatic cancer.  

Now I’d like to share a story about an email I recently received. Last month, the New York Times article, Deadly Inheritance, Desperate Trade-Off reported about Nancy Platt, who lost both her mother and 37-year old daughter to pancreatic cancer - and lived in fear every day that she, or one of her family members, would be diagnosed with this disease. Mrs. Platt joined Dr. Canto’s Screening Study at Johns Hopkins for individuals at high-risk of pancreatic cancer (check the patient resources section of our website for more details about this study). A specialized ultrasound test revealed that Nancy’s pancreas was riddled with cysts.   She chose to undergo surgery to remove her pancreas. 

Nancy recently sent me this email: “My family and I are so grateful to The Lustgarten Foundation for providing much of the funding for Dr. Canto's work. It is a direct result of her research that I have been saved from pancreatic cancer. It is our hope that our children and grandchildren can be tested throughout their lives, so this horrible disease does not take a single member from us. Thank you.”

I thought to myself, finally, research that not only pertains to mice or zebra fish – but people as well! 

We invite you to use this Blog for discussion of issues relating to the state-of-the-science in pancreatic cancer; ways to increase public awareness of the disease; and other important issues in the fight against pancreatic cancer.

Kerri Kaplan
Executive Director

 I just saw your public service announcement and I could not stop crying.  Finally, the disease that changed my life forever is making the news.  Part of my anger of losing my beloved father is the fact that so little money is spent to try to cure this disease.  I saw a figure that only $1100 is spent per patient for pancriatic cancer research.  What a crime.  Maybe if more was spent my children would have there Abi a little longer.  But I guess God works in mysterious ways.  But enough of my feelings.  I want the world to know about my dad.

   Our Abi, or Arnold as most knew him was a wonderful person.  He didn't have the best of lives.  His parents were divorced at the age of 5 and he lived in many of his families homes, but to here him tell it he had a wonderful life.  At the age of 18 he was forced to leave his home country and immigrate to the US.  To him, he loved America.  He tried to enlist, being a US trained pilot, but because there was a law not allowing non US citizens serve, he had to change plans.  Then he met the love of his life my Mom.  She was his world and his, hers.  She too had a bad childhood, but together they made magic.  They had my Brother and Me and life to them could not have been better.  I am not saying that they didn't have their struggles, there were times of no food, my brother's illnesses, and all the hardships one could face in live.  But to us our world was paradise.  I guess that was why when my father was dying he said that  "He truly had a good life." 

   As time passes, my brother and I got married and had our families.  I think one of his proudest moments was walking me down the isle, seeing my brother and I graduate with Doctorate and Masters Degrees, and hearing his two grandchildren call him Abi.  All seemed perfect but little did we know.  I know many of you who will read this story and think that there was no God to make this family and so many other families suffer from this disease.  But after a year of soul searching, I have come to realize that God truly blessed my father.  The year of 2006 was a different one for us in many ways.  My father was contemplating retiring when he reached 65.  He was getting tired.  It bothered him, but little did we know it was the CANCER.  But God, in his funny way told him to take time to smell the roses.  Out of character to miss work, he made time to be with his two grandchildren at Grandparent's day at there school.  Sure, he believed that he would be there next year when he retired, but God told him - Don't wait. And this is truly one of the best memories we have left of him.  In the front of my home, I have a smiling picture of him with my mom and my two children at school looking so happy.  At times when I want to hit the wall and just hate someone for what happened, (especially God)  I am thankful for that day.  I am also thankful for my son's First Communion picture.  My brother does not like taking pictures, but without any complaint he agreed to take the picture.  It is the last family portrait.  Only my sister-in-law was missing.  I have promised myself to fix the picture and add her as well.  She was such a support during those last days, she deserves to be in the picture too.  That last picture was April 23, 2006.  My father died on July 29th, 2006. So little time. 

   On Memorial Day 2006, my father was feeling ill.  We thought it was an ulcer.  We were wrong.  By the time it was diagnosed, it was in his liver and kidneys as well. That was July 2nd.  I was in Hawaii, on my vacation of a lifetime.  How I would have given it up now to spend one more day with him.

His doctors told us that it was the most aggressive cancer they had ever seen.  But he was positive, he said he was going to fight and I believed him.  My brother was at his side all the time.  This was the greatest gift my brother could have given him.  My brother lives far away and through the hustle and bustle of life forgot to call at times.  He made up for it by being at his and my mother's side during this time.  I was always there, I lived so very close to them, but now was my brothers time to let my dad know how truly grateful he was for all the sacrifices they made to give us a better life.  To tell him he loved him, and to let them know that they weren't alone.

In total, I had 8 days to say Goodbye to my Dad. No one, even his doctors, could believe how fast he would go.  Even after the funeral the Chemo doctors were calling to make appointments for his next treatments.  They could not believe how fast he went.  But like I said earlier God works in mysterious ways.  I guess that was Gods gift to him and us.  He never wanted to be a burden and to suffer a horrible death.  And he did not.  He just fell asleep.  On Friday he was talking to all of us and telling the nurses his life story.  People from his work would come by and pray with him or say hello.  I never saw so many grown men cry.  My father had helped so may people in his life, whether getting them a job, helping them during a crisis, giving them food or clothes and just being the wonderful man that he was. That at his funeral, the room was full of hundreds on people, I never knew loved him.  I had never seen so many flowers.  It smelled like a garden.  He even had a police escort - something that would have made him proud.  And his work, which he gave so much of his life to, at this time gave him the best gift of all.  Before he died and some months after, they continued to pay his salary.  That was one time during this illness that I was him cry.  When his bosses called him and told him not to worry that they would take care of him and my mom it made us proud and greatfull that there was truly goodness in this world. (Again another gift from God).  But I think that they best gift I gave him (thanks to God) was my strength at this time to not shed a tear - to look into his beautiful black eyes that I miss so much now and tell him "That I was so proud that he was my Dad".  I saw a tear fall from his eyes and he told me 'Why, I am just an ordinary man" and I said "NO YOUR NOT."  And he wasn't.

My father just fell asleep and slowly stopped breathing.  As I sit back now, it was a truly beautiful scene.  His room was full of all of his family from all over the US.  And we sat by him telling him we loved him and he just fell asleep.  It was a perfect way to pass (if that is possible) surrounded by those who love you.  I know that it was the way that he always wanted to go.  Again - God's gift to him.

He Died on July 29th, 2006 - 5 days after my mom's 60th birthday, his gift to here to hold on that long and tell her how much he loved here.  He died 2 months before his 65 birthday.  (Retirement never came for him.  But that wasn't my dad to sit idle and have nothing to do. I like to thing that God knew that it would bother him more to be a burden to all of us, then to leave early- so he gave him the choice.)  But at times I still wish God would give me one more day.

Thank you all for this opportunity to finally tell you my story.  I have so much more to say, but maybe for another time.  I just wanted the world to know how truly special my Dad was.  I am somewhat better.  It has taken a year, but we continue to miss him so much.  I have taken my energy to do something to begin a service organization in my children's school - to help others facing this and many other problems in life.  I am even organizing something for pancreatic cancer - so you may be seeing and reading more of me.  My family and I want to start an Abi's team for Pancreatic Cancer.  It is just a start.  If there is anything I can say to all who read this is to take the time to tell those around you that you love them and are proud they are part of your family.  My telling my dad is the one think that has given me peace of mind through all of this.  At my father's funeral, I told some of our dear friends to tell their dad, and I am glad I did.  Their dad died 3 months later.  My husband said that they were greatfull that I reminded them to honor their father.  Those last 3 months, they spent more time with him doing the things he loved.  And they too feel it was a Gift from God that I gave them that message.

Thank you for your time

Marilyn Rodriguez

If you missed Dr. Randy Pausch on the October 22 Oprah Show, you missed an incredible story. For those who do not know, Randy was diagnosed with pancreatic cancer just over a year ago. He is in his mid-forties and has three children 5 and younger. He had surgery and aggressive treatment but the cancer has now spread to his liver and his doctors have given him only a few more months to live.

Randy is a professor at Carnegie Mellon, and last month he delivered his “Last Lecture” to 400 people. The idea of the “Last Lecture” is for an esteemed professor to say what he or she would want to impart to students if this were his or her last lecture. But for Randy this truly was his last lecture, as he quit his job and has moved to be closer to family. Randy’s lecture was widely covered by the media, and he receives thousands of emails a day from his “fans.” I encourage you to visit his website.

This is truly a special man. He speaks with dignity and grace. He thinks it “stinks” that this is his fate, but he’s not angry and he’s not going to spend his last days complaining. He’s going to spend his last days living. Even though I work in the field of pancreatic cancer, sometimes I still forget not to sweat the small stuff. But the next time I’m stuck in traffic or someone gets to the good parking spot before me, I’ll think of Randy, turn up the radio, and just enjoy the music while I’m waiting.   

Kerri Kaplan