Where Have We Been?

This time it really has been an awfully long time since I posted. Much has happened. I'm going to skip over most of it to bring you up to date on the important stuff.

I alluded last time to the pain, discomfort, and functional difficulties I was having in my nether regions. It got worse. Way worse. I did not have any bowel movements for several days. I was not able to urinate even when my bladder was extremely full. On top of the severe discomfort this created, I had constant pain in the region of my coccyx. I began taking long, hot baths, both for the heat and the buoyancy. Over the course of two weeks, I progressed from extra-strength Tylenol to Tylenol + Codeine to Percocet. Then I became a clock-watcher: the minute my four hours had elapsed, I popped more Percocet. Then I became an abuser: I needed (and took) more Percocet sooner than I was supposed to.

My emails to my doctors elicited new stool softeners and other medications that might -- but didn't -- help. On Saturday (Jan. 28) things finally got intolerable and my docs admitted me to the hospital. Never in my life was I so grateful to have a urinary catheter inserted! I was started on heavier-duty pain medications, including a patient-controlled pump with IV drugs. A regimen of enemas replaced the laxatives. The immediate goal was to make me comfortable and manage pain.

I should say that one reason I didn't write during this period or the following days is that it took a great deal of energy and concentration just to get through each day.

The palliative measures helped a great deal. By Sunday I was relatively comfortable, although still severely constipated. (Folks, I really am trying to give you an accurate picture of my situation and distress without grossing you out totally with the details.) Progress was gradual.

Also on Sunday, I had a CT scan to see what was going on. You may recall that I had one not long ago (mid-December) that disclosed a small tumor growing on the outside of the colon. Throughout the month, as I reported each new symptom and my growing distress, my doctor consistently conveyed her assurance that this tumor, while a cause for concern, was not big enough or placed in such a location as to cause the kind of symptoms I was having. It turned out that the tumor had grown some more, although it wasn't entirely clear if the growth was more tumor or was due to inflammation from an infectious process. The reigning theory was that the infected growth, or abscess, was putting pressure on nerves that influenced bladder and bowel function, as well as pain.

This was all explained to us Monday morning, after the radiologist had a chance to give the scan a thorough reading. The decision was made to drain the abscess on Tuesday, using a CT-guided needle. Monday was a day of waiting around, but also the day that my bowels began to function again. This was exceedingly encouraging; few things are more depressing than going through an enema with minimal result.

Tuesday morning dawned with promise. Which quickly wilted, when we learned that even though my Coumadin had been reduced and then discontinued over the preceding days, my blood was still clotting at therapeutic levels, more than twice as long as normal: good if you want to avoid blood clots and strokes in normal circumstances, bad if you are planning a procedure that could induce bleeding. This, coupled with a bowel that still contained substantial amounts of feces, prompted the recommendation that we postpone the procedure until Wednesday. Although disappointed and frustrated, we carried on with the enemas and added a dose of magnesium citrate laxative, and were cheered by the appearance of substantial results.

Quality of life, as you might imagine, rather sucked. I had substantial pain near the coccyx, which was exacerbated by sitting or lying on that area. At home I had coped with this by sitting in warm baths, but with the urinary catheter inserted and my chemo port accessed to administer IV drugs and fluids, this solution was no longer possible. I resorted to lying on my side most of the time, and taking walks. While the walks were energizing and provided some comfort, having to roll along with a mobile IV stand and catheter bag was cumbersome.

Tuesday we had a bit of excitement when the catheter induced very painful spasms. (Later traced to one too many turns in the tube, a consequence of moving the bag from bed to IV stand and back again so many times; the tube was trying to unkink itself and in the process was poking me.) They decided to remove the catheter -- instant relief! -- and promised that if I urinated on my own in the next six hours, it could stay out. No such luck; the catheter went back in later that evening, again providing much needed relief. (Talk about Catch-22!)

By this morning my blood clotting time was appropriately short and my bowels sufficiently emptied that the decision was made to go ahead with the drainage procedure. In typical hospital fashion, no one could tell us when it was going to happen until the transport guy arrived. And then we went down to the CT suite, only to wait another hour and a half to get started. (I had a lovely nap during that time, and David got some work done, so the time was not wasted.) And that's pretty much where our story ends. Also in typical hospital fashion, there's a hierarchy to who can say what, and the docs who are sufficiently high in the hierarchy to discuss the outcome have been busy with other stuff this afternoon. Hopefully we will still get a visit, but as we are closing in on 7:30 pm, the chances are getting slimmer with each passing minute.

Oh: the most "amusing" moment today? When the nurse tried to give me my enema in the vagina. We were immensely heartened to see how seriously the hospital took our complaint. A nursing supervisor stopped by, asked for a full and detailed account, was appropriately horrified by that and other details, apologized profusely on behalf of the hospital, and promised complete follow up.