Patrick Swazye
I’ve been thinking a lot about Barbara Walters’ recent interview with Patrick Swayze, as I’m sure many people touched by pancreatic cancer have been. My initial reaction was that I was disheartened that they didn’t do more about the actual facts of his diagnosis and treatment. It’s one thing to give a general overview but a precise location and treatment review would have given more depth to the issues surrounding his fight. Still, I was encouraged by his emotional honesty. As much fluff as Walters seemed to want to cover him with, Swayze seemed to be bluntly and openly present for much of the interview. His apparent frustration, when talking about the low tolerance he now has for bullshit, his adamant rejection of the “alternatives” (that promise life but only hasten death) to real treatment , and his straightforward approach to intentional task of living were all areas where I found myself viscerally connected to what he was saying.
For much of my own journey I’ve thought in terms of finding a “tribe” and had to reflect on the realities I’ve faced as I’ve not found others who have faced or are facing the same challenges I have. As I listened to Swayze, I was struck by just how personal this fight is. Certainly, our apperance changes and that can draw sympathy and concern, but the daily physical reminders present in recovery are usually not visible and therefore easily dismissed by others. Over and over the press has hailed Swayze’s “couarge” to wage this “fight” in the face of death and I certainly would too. But they have no idea what it takes to live…
About not finding a tribe … there are PanCan support groups scattered sparsely across the country. I was fortunate enough to have my Whipple (11/07) in Dallas at Presbyterian Hospital, which is a known PC center, and we have a support group, one of two in our area. There are 8 survivors that attend on a regular basis and another 3 or 4 intermittent ones. Our longest-living survivor is 12 years removed from her surgery. We have several at 3 years and a couple of 1-2 year members. I can not tell you what this group means to us all. We share our stories, problems, treatments, clinical trial results and many of us have become social friends.
Don’t know where you live but Google PanCan Support Groups and it will give you a list.
BTW, I had no complications from the Whipple. I went in with a 2cm tumor at the head of the pancreas (discovered early after a bout with jaundice), had my gall bladder, duodenum, and 1/3rd of the pancreas removed with successful re-sectioning of the above. My post-surgical pain was manageable (with an occasional shot from the pump) and I was out of the hospital in 8 days. I elected to opt out of chemo because of the side effects.
I have been symptom free since, although my most recent CT found what they thought was a mass. When they went to biopsy it, it had disappeared. Why? I choose to believe that it is because of the acupuncture and visualization I do. Also, my surgeon was one of the top in his field, having performed over 1000 Whipples. My marker has been in the 8-60 scale since surgery and my quality of life has been a 10 on a 1-10 scale.
I know each case is different, and I wanted you to know that there is longevity in surviving this disease and support while you are fighting it. BTW, the 12 year survivor in our group also chose to bypass chemo after her surgery!
Marty Weissman
March 23, 2009
Marty, I also had tumor at the head of the pancreas and Whipple in August, 2009. Chose not to accept offers of chemo and radiation, but monitored with low marker numbers. Last weekend low blood pressure and bleeding led to ER and local hospital, so I am now on additional medication: pantoprazole. Had to omit or reduce some of my blood pressure drugs (that prevent stroke) and have had a Pacemaker/Defibrillator since Sept. 2007. I’ve been researching diets as there are many in conflict (example: bread/no bread, potatoes/no potatoes, greens/no greens. Dieticians seem mostly of the whole grains school. Whipple in August, 2009. No pain currently. My surgeon at UCLA does 100 or more Whipples a year and I cannot praise him enough. The hospital unit there has single rooms with a fold out for spouse or companion or relative, so one son could fly in for a weekend and stay in the room, shower, read to me, etc. and calm me when oxycontin made me batty. I have nothing but praise for the surgeon and the team (I was in the op 8 hours! but went home in 5 days). This group is a blessing as the local cancer center has few Whipplites they are so far willing to reveal for a group I’d like to form. You are fortunate with group participation. Press on!
Lachlanmac
February 24, 2010
I have a friend who was diagnosed with pancreatic cancer at the age of 24. She went through chemo and radiation (it seems that her chemo treatment was forever). She eventually got better, after 2 years, however, about 4 months ago she begain to feel ill after eating, she could not hold anything down. She also developed painfully sore feet. As a result of not being able to keep food down, she lost a tremendous amount of weight. It was found that she had a blockage in her upper intestines and her oncologist and surgeon decided to that she needed to have an operation. Of course, before the operation she had to go through some tests and during the testing stage the surgeon noted that her liver enzymes were quite off. About two days later her surgeon and her oncologist informed both my friend and her mother that there was nothing more they could do and that she needed to fill out paperwork for hospice. My friend is only 27 with two small children and we are all quite shocked and saddened. Have you ever heard of pancreatic cancer affecting someone so young? (By the way, she found out that she had pancreatic cancer after a long bout with stomach pain, she thought it was possibly caused by ovarian cysts, so she waited a while before seeing her doctor) I have a friend who was diagnosed with pancreatic cancer at the age of 24. She went through chemo and radiation (it seems that her chemo treatment was forever). She eventually got better, after 2 years, however, about 4 months ago she begain to feel ill after eating, she could not hold anything down. She also developed painfully sore feet. As a result of not being able to keep food down, she lost a tremendous amount of weight. It was found that she had a blockage in her upper intestines and her oncologist and surgeon decided to that she needed to have an operation. Of course, before the operation she had to go through some tests and during the testing stage the surgeon noted that her liver enzymes were quite off. About two days later her surgeon and her oncologist informed both my friend and her mother that there was nothing more they could do and that she needed to fill out paperwork for hospice. My friend is only 27 with two small children and we are all quite shocked and saddened. Have you ever heard of pancreatic cancer affecting someone so young? (By the way, she found out that she had pancreatic cancer after a long bout with stomach pain, she thought it was possibly caused by ovarian cysts, so she waited a while before seeing her doctor)
sandra
May 2, 2009