Waxing philosophic
For those of you who have been reading for a while, a lot of this will be stuff you may (or may not) remember. But recently I have been waxing philosophic about my situation and I want to try to put into words what has been going through my head. Before I begin, though, for those of you who are wondering, I am doing well. My appetite is back, I’m not as fatigued as I had been, and I feel generally okay. This is week 2 of my 2 week holiday from chemo.
This really has been quite the crazy road I have traveled since April…actually, since last August (2007). To remind you all, I was admitted to Emory Eastside Hospital on August 5, 2007; I had been feverish and vomiting so violently that by the time my wife and I dropped our kids off at church, I was fairly delirious and (according to MaryBeth) mumbling incoherently. I recall getting to the hospital, getting sick in the waiting room, triage, and back in the exam room; I remember that the surgeon came in and told me she was going to operate the next day to remove my gall bladder; but the details of the day are pretty fuzzy (except that the contrast I had to drink for my CT scan was REALLY nasty). After the gall bladder surgery, I remember that the surgeon called in another doc (my gastroenterologist, Dr. Kulkarni) who told me he was going to do another procedure the next day to open up my bile duct (which was causing my jaundice and the systemic itching I was experiencing. And here is where my journey begins in earnest.
Apparently, while I was recovering from the 2nd procedure, Dr. Kulkarni had told MaryBeth that I might have primary sclerosing cholangitis – PSC – a degenerative disease that eventually would require a liver transplant. MaryBeth and I had to deal with this sudden, very sobering thought. Later on that week (I think), Dr. Kulkarni also said it might be cholangiocarcinoma (bile duct cancer). Again, we had to adjust. It was really hard, those first couple of weeks/months, coming to grips with the possibility that I may have these potentially fatal diseases.
As time wore on, however, Dr. Kulkarni ruled out PSC and I recall on several occasions that he would say that my body was not behaving like it had cancer. As a result, by early 2008, we thought I had a benign bile duct stricture. Beyond the multiple ERCP procedures, we were not really worried about my bile duct stricture. So we went from fearing the worst to thinking things were generally okay. Sure, if I had a stricture (that was not responding to treatment), I might have to have a pretty serious surgery to redo my “plumbing” but I really only had to worry about the risks inherent in the surgery. Things were generally okay.
Then I hit April 2008 and all of that changed. It wasn’t a benign stricture, it was (in fact) cancer. And not just any cancer, it was this really pernicious form of cancer that had a really sucky (medical term) prognosis. Again, we had to adjust to the fact that I had this problem. I mean, the diagnosis came completely out of the blue (because my body was not behaving like it had cancer)!!
I spent much of the spring and summer waiting for my surgery, as if the surgery would fix everything (and maybe it has), but right now, I’m stuck not knowing what the future holds. Sure, everyone to an extent is at that place, but I am there with the knowledge that (a) my cancer had gotten into my lymph system and (b) the surgery left some of the tumor. So, while I am currently “cancer-free” (my last CT scan did not show any signs of tumor growth), I sit here waiting wondering what tomorrow (figuratively speaking) will hold.
As I have said, I generally feel good. Even when I am on chemo and feeling crappy I can rationalize that my feeling yucky (another medical term) is attributable to the medicine and not my cancer. On my good days, I can handle the “let’s wait and see” reality of my life. I can look toward the future and think to myself there might BE a future beyond some arbitrary limited length of time (be it 6-, 12-, or 18-months, etc.). On my not so good days, it harder. On those days, I find myself looking at my children and wonder how they will turn out and feel sorry that I will not be there to see them graduate from high school; college; see them get married and start their own families.
But good day or not, right now my cancer is so integrated into my life that I have become complacent. Does my complacency mean that I am not fighting as fiercely as I should? Is my complacency a sign of my “giving into” my disease? Should I be doing more? These are just some of the things I have been thinking about recently.
I apologize for my stream of consciousness writing tonight. I’ll try to be more coherent tomorrow.
Merle
“Yucky” is also a term for eutrophic aquatic ecosystems my ichtyology prof. taught me. I’m thinking of you and love you very much (in a heterosexual way of course).
Personally, I think coherent streams of thought and writing are overrated…..I like your incoherent streams. Go with the flow. Love ya ! Think PR and drinks with tiny umbrellas!
I read this, and again, felt compelled to say: I think you are doing a lot. You are maintaining a level of normalcy for your family, you are working, you are educating all of your blog readers on this type of cancer, you are raising boatloads of money to fight it, and you are fighting this cancer every day and undergoing chemo like a trouper, among other things. You are, in classic Merle fashion, not giving yourself enough credit. This concludes my incoherent stream of thought.