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ALISA (ISLET CELL )


I was dx with a non - functioning islet cell carcinoma on February 1,2002. I was 38 years old. The day I was dx was the day of my whipple surgery. Prior to this I had been feeling tired for several years - not a sleepy kind of tired - more of a totally drained body weary fatigue. My PCP attributed it to stress after ruling out diabetes and thyroid dysfunction. Being a person who has a high tolerance for stress I was not sold on that idea...BUT I was too tired to put up much of an arguement. Luckily for me I eventually got a nagging ache on my left side and shortly thereafter developed interesting gastro issues. I ended up at the GI doc and he changed my dx from stress to IBS...still short of a goal but at least in the stadium! The tx for IBS fortunately aggrevated my pancreas and off I went for a series of tests. The CT showed 'something' on my pancreas. An ERCP was done and biopsies taken which all were negative. At this point my GI doc referred me to JHH at which time I saw another GI doc who ran his own series of tests. He refered me to my surgeon , Dr. Lilliemoe , because cancerous or not the tumor had to go. He scheduled me for February 1 and prepared me (as best he could - no one can adequately prepare you for such an assault upon your guts!) for the surgery and recovery. The surgery was almost aborted because there was unforeseen blood vessel involvement. The tumor had adhered to my messentary vein and was wrapped around my artery. Luckily for me Dr. L. called in another surgeon highly skilled in dealing with those vessels and together they took care of business. When i woke up in ICU Dr. L gave me the good and bad news. I would recommend , if you haven't already figured it out , that with cancer , good news and bad news both apply to just about every tx decision that you will make. Dr. L's good news was that he felt that they had gotten all of the tumor. Bad news was that there was vein involvement and lymph node mets and the margins were really close. The other bad news was that it was cancerous - the good news was that it was a 'good' kind of pancreatic cancer to have . After surgery I had a chemo and radiation consult prior to discharge. The oncologist did not recommend chemo due to my tumor being a very slow growing tumor. As it was explained to me , chemo does not work with slow growing cancer cells and only makes the pt. sicker by killing healthy cells. Radiation was recommended due to the lymph node mets. 15 nodes were removed and 4 tested positive. I received my radiation tx from Dr. Edwards in my hometown. He had the equipment and knowledge to tx me and JHH is 2 hours from home. I didn't want my family to have to burn up and down the road to come and see me. The radiation made me very ill beginning on day one and for about a month after it was finished. I had alot of ambivalence about getting radiation because I felt it was a gamble. The doc explained that there were 3 scenarios: 1) I had no cancer in my body and the tx was for naught 2) I had cancer cells in my body and the radiation would not kill them 3) I had cancer cells in my body and the tx would kill them. I had to consider assaulting my body with radiation after hearing about all of the possible side effects and long term consequences with no guarantee that I had any cancer cells or that the tx would benefit me if I did. I reluctantly agreed to tx. I was able to return to work four months after my whipple. That was probably about 4-6 weeks too soon but I had used up my sick time and I was ready to get going. Laying on the couch watching M*A*S*H* reruns had gotten old though they lightened up some of the dreariest days of my life. In addition , my family and friends had been consumed by this disease and I wanted to show them that I was going to be okay. When softball season started on Mother's Day of that year I was determined to be on the field , guarding firstbase and watching my daughter (she was 21 and my only child) hit longballs and play leftfield. I was there and played 2 1/2 innings. I hit a single my first at bat and it felt like a homerun to me. I was finally able to see some flickers of my pre-cancer lifestyle and spirit. Unfortunatly this all came crashing down just prior to Christmas when a PET scan was done. A spot lit up at my original site and off to JHH I went. Dr. L. confirmed that some cancer was still there but could not operate anymore. He referred me to an oncologist at JHH , Dr. Laheru. He agreed with the prior decision of no chemo. He did schedule me for an octreascan to determine if my tumor had receptors for sandostatin. The test determined that I would be a candidate for that type of tx. In addition, he referred me to Dr. Lowell Anthony at LSU in New Orleans. He is considered an expert in txing carcinoid and islet cell tumors. He determined that I had very little disease ( the good news ) but that it was in the worst possible place for tx ( the bad news ) because a cure for this type of cancer is best accomplished by surgical removal. He sent me back home with a prognosis of 10 years. He did say that at some point sandostatin injections would benefit me and he would also consider me for a tx called Indium 111. By the way , New Orleans is a great town - I had never been there and we had a blast and some Hurricanes! Since then some remarkable things occurred , one being that I found a way to live in the moment and accept that I had this disease and would always have this disease and it would , most likely , cause my death. I had a CT scan in March,2003 just prior to seeing Dr.Anthony. Dr. Laheru then scanned me again in June, 2003. He determined that my tumor had shrunk. I was astounded , as was my family. Sooo back home to the Eastern Shore with my next scan scheduled for January 7,2004 which also happened to be my dear sister's birthday. This scan showed NOTHING...Happy Birthday , my sister ! I am humbled and full of gratitude everyday. I never expected this news and I am still in shock. My next scan is in January, 2005. I am not without health problems but I manage them with little complaint , happy to be able to enjoy more of my life with those who I love . I could not write this bio without acknowledging those who helped me through this nightmare. My sister , Shari , was by my side for every test and appointment and stayed in my room at JHH following my surgey. She was my eyes, ears and voice when i was too sick or overwhelmed to comprehend what was happening to me. My boyfriend , Bud , who became my husband on August 2,2003 :) , was so wonderful. After my whipple he returned home to work . He got up every morning at 5:30 am , worked all day and then drove two hours to Baltimore to see me. He would visit for an hour or so and drive back home to do it all over again the next day. My sweet daughter tried her best to be in denial. She returned to college and graduated last semester. She put on her tough act and dared anyone to even whisper that her mama would be anything except fine. My brother, Steve was my roommate during this ordeal. He helped me cry. His love and concern was always written on his face and one look at him and I would start with the tears. My sweet neice , Taylor was only 3 when this all started and she brightened my days. To her I was the same Aunt Lisa - only I threw up alot and wore my bathrobe most of the time ! I have to stop because this will read like an Oscar acceptance speech because my family is huge and I have alot of friends , co-workers , church family, and boardmates who have helped me through my battle with this disease. I could not have , would not have physically or mentally survived this ordeal without them. In addition, my peers at our local Wellness Community taught me alot about living with cancer. Not just the act of being alive , but really living and continuing to enjoy my life. I am trying to come to an understanding as to why I am in remission. When I was dx I tried to figure out why I got this disease.That quickly turned into questions of why anyone gets this disease and that quickly turned into why does anyone get ANY disease and then....well you can kind of see how my thought process works so I just gave up on trying to figure it all out. I have had to do the same with trying to sort out why I am in remission when I had no tx following the dx of persistant disease. I am neither a pessimist nor an optimist...I don't worry about whether the glass is half full or half empty...I am a realist and i want to know WHAT is in the glass. I have mentioned my wonderful army of support. In addition, there was alot of prayer that I beleive really helped me to accept and deal with this disease. This acceptance was independent of any outcome. I think the love and support that I received mirrored to me the love God must have for us and as a result I began to let go of my worries and fears about the uncertainties of death. Now I must figure out what God wants me to do with the rest of my life. It is funny that I have procrastinated about posting my bio for almost two years...since learning of my remission I have felt compelled to share my story here. I know how much this site has meant to me and I wanted to give something back. My pc story has not been without darkness and pain and fear and loss...but mostly it is a story of love and hope and I hope that is what you are able to take from my experience. Good luck and peace to anyone who is battling this disease...alisa

Posted 02/12/2004 01:58 pm by alisa
E-mail Address: thedogwoman@comcast.net

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