Treatment 5, Round 2

All went fine on Tuesday. It was another warm, sunny beautiful day in Cambridge. I asked for a room near the pool or on the veranda, but had to settle for T4 – which at least has its own A/C control and a view of the Charles River, if you look over Memorial Drive. Everyone seemed to be in good mood and it was relatively quiet, which is always nice in Oncology.

I had a long chat with Susan, one of the nurses, regarding my Sandostatin prescription. She has spent much time over the previous week trying to get me this medication. Finally got the approval from the insurance company and now the pharmacy that it needed to be ordered from was giving her a hard time. Fortunately I have a great case manager at Cigna, she worked with Susan and after I called in my credit card number for the co-pay, the company said I should have the medication today. Whew! After all this work, I think the general consensus is that this better take care of my diarrhea.

I think I stumbled on a way to keep it slightly under control myself. And no, it doesn’t involve starving myself. During my weekend up in Maine, which was fabulous by the way, I did not have a lot of problems. So it’s either the salt air, or more likely the fact that I was eating lots of seafood. Lots of simply prepared sea food – shrimp cocktails, lobster rolls, crab rolls, salad topped with lobster, etc. I still had some episodes, but no where neat the typical 10-15 trips a day I have on a normal day. We haven’t put this to the test yet, but I really didn’t have much trouble convincing Pat we need to switch to a diet of shrimp, crab, and lobster only. I didn’t relay this information to Dr. Lange – I figured I’ll see if it works before I say anything.

Pat had a semi-enjoyable weekend with out me, I think. He worked a vast majority of the time, but then took some time for himself and did some aimless wandering. He brought home some beautiful flowers and the fixing for a yummy berry sorbet. Heather and I enjoyed ourselves thoroughly in Kittery, Ogunquit, Kennebunkport, and finally a pass through York Beach to see Nubble Light House. Pictures to follow shortly – if I like any of them. The weather was gorgeous – we were able to spend all day every day outside, walking Marginal Way, wandering around Perkins Cove, finding some really pretty sea glass jewelry, and just sitting on the beach listening to the crashing waves. At night, Heather let me win almost every round of Pass the Pigs, the dice game we discovered. For anyone who knows Heather, she did not exactly “let” me win – and she wasn’t exactly happy that I kept kicking her butt.

Back to work this week. I am really starting to miss the travel side of my job. I have plenty to keep me busy in the office, but I always considered one of my perks to be the trips I had to take. They could be stressful and frantic, with every waking moment filled, but I really enjoyed them. Doing the research from this end and having all my contact be via email, just is not the same. I don’t feel I am developing the same relationships I did when I was traveling. Somehow I think that nasty word networking falls into play here, though I will deny it if anyone were to ask me direct. If the Sandostatin works, then I can see myself volunteering for some trips later this summer. If it doesn’t then I’ll just have to find some other ways to stimulate my brain.

Now I’m going to go off on a tangent. Feel free to stop reading here as the next few paragraphs are going to be a bit of a ramble.

I belong to a bulletin board group for Pseudomyxoma Peritonei patients and caregivers. We all share advice and talk about treatments, doctors, etc. For the most part I chime in whenever I feel I have something productive to add. Someone recently posted about the Lance Armstrong book, “It’s Not About the Bike” and saying how inspirational they found it blah…blah...blah. Not wanting to make myself known as a troublemaker or sour puss on the board, I opted not to post the following there, but rather decided to put it here because I need to say it and this is my opportunity to speak my mind. Take it however you may.

I have heard and participated in many, many discussions with other cancer patients and survivors about inspirational books and Lance's "It's Not About the Bike" is always a popular topic.

I haven't read either of Lance's books, and don't intend to. I have 3 or 4 copies that were given to me by well-meaning people over the years, but that still hasn't gotten me to crack the cover. I do, however, wear yellow in the form of a LiveStrong bracelet that supports Lance Armstrong's Cancer Research Foundation - so I'm not totally anti-Lance. I just have never reached a point in my battle where I think it would be good for me to read a story about a man who kicked his cancer in the a** and went on to win 6 Tour de France's. There are days I struggle just to get out of bed. Before all this happened, I had no interest in competitive bike racing, or competitive sports of any sort. And cancer has not changed my attitude about that. I just want to go about living a "normal" life. I don't see the need for extremes. Not have to worry about what I eat and how many trips to the bathroom it will cause. To go out to a restaurant and pick something off the menu that I really want and not the item that is least likely to cause me problems later that night. To go on that cruise down the Danube despite the fact that the bathrooms are shared and in the hall instead of in the individual bedrooms.

I think Lance's story is compelling and that there are thousands of people who have been inspired by it. But I also think that it strengthens the belief that cancer is a "curable" disease. Maybe "curable" is not the right word, perhaps "treatable". There are a lot of people who battle cancer, they go through their treatment and 5 years later it is behind them. There are still a lot more out there who are diagnosed too late and quickly lose the battle. Then there is the small, but growing percentage of us for whom cancer is a chronic condition. Doctors have a hard time with this one. It’s not supposed to be chronic, but Dr. Loggie and I talked about this in great length and he is trying to change their minds, one oncologist at a time. It is possible for cancer to be chronic and not necessarily debilitate the patient for the rest of their hopefully long life. I'm on board and so is my oncologist. 6 years ago when I was diagnosed, all the stats pointed towards maximum of 5 years survival. Like I said, I'm at year 6 now with the end nowhere in site. It hasn't been an easy journey and I have good times and bad times, but I wouldn't trade these 6 years for anything. Before I didn't expect to see my 35th birthday, well that's in 6 weeks and I have no doubt that I will be around to celebrate that one and my 40th as well.

The best thing someone once said to me was at a conference on which I spoke on a "Survivor's Panel" (Yes, there was must discussion as to what constituted a survivor, and we were all in agreement that I am a survivor). Anyway...I spoke after a woman who had battled stage III breast cancer. She had 9 chemo treatments and to each one she wore a marathon shirt (she had run 9 marathons before her diagnosis). A year and a half after she completed treatment and was though not technically in remission she was cancer-free, she climbed Mt. Kilimanjaro. She made it to the top. The audience was blown away. I began my talk right after her, and I started with the sentence, "Whoa, tough act to follow. I haven't climbed any mountains" - she stopped me immediately and said "Yes you have". This simple phrase put it all into perspective for me. And I think my story blew away a few more audience members.

End of rant.

Posted by jean at June 8, 2005 04:05 PM