It’s kind of a Catch 22. Given the metastatic stage of my ovarian cancer, having had early recurrence deemed platinum-resistant and inoperable, the only treatment available to me is palliative care. However, due to the metastatic stage of my cancer and the effects it and the surgery are having on smooth intestinal function, there’s not much in the way of palliative care available that will effectively manage my symptoms.
In my last post, I recounted information provided by the gynecologic oncologist about what might be going on with my digestive system and why there was little that could be done: tumor burden, post-surgical tweaks, and tumors on lymph nodes impinging on blood flow to intestines. The options I was offered for managing what I experienced as lower GI cramping and partial obstruction provided no relief, which didn’t surprise me because they were mostly top-down remedies, and my body was telling me the problem was bottom-up. I had asked for a sigmoidoscopy, and was told by two doctors the risks of either that or a colonoscopy outweighed the benefits. The gastroenterologist I had seen once (who did not do a physical exam, just walked into the room and said with my stage of cancer, etc. there weren’t many options other than what I was already doing: stool softeners, laxatives, enemas, etc.) had mentioned in a reply to a note I sent him that radiation might be an option, my oncologist would be the one to determine that, but of course we needed radiologic evidence of tumor in rectum before that decision could be made. He said a CT scan would be the best way to get a good reading of what’s going on. The problem? My hip replacements white out the imaging when it reaches the pelvic area. So whatever was going on in the pelvic area could not be seen by radiologic imaging. I see that as a sort of variation of the Catch 22 paradox.
Since we had no imaging evidence, and since the symptoms I was having matched perfectly the list of symptoms at the Mayo Clinic website for proctitis, I convinced my PCP to convince the GI doc to prescribe a steroid enema to reduce inflammation and swelling. That seemed to be helping for about a week; then things took a turn for the worse.
Last Friday, having grown weary of some very uncomfortable, nonproductive (bowel-wise) days, I had a friend take me to the ER. By the time we got there, I was in a good deal of pain from sitting in the car on my beleaguered backside.
The ER doctor was a young guy straight out of GQ magazine with a shade of well-tended stubble and a carefully crafted, colorful tattoo that covered his left forearm. I wish I had taken more time to look at it, but was too focused on making sure I detailed my symptoms in a way that would say something other than “old-woman-dying-of-cancer-is-constipated” (OWDOCIC). I suppose I was also distracted by the question mark which kept appearing above the doctor’s well-coiffed head (as in “Gee, I’m not sure what I can do for you,” to which I leaned forward and replied, “X-Ray and proctoscope exam and yes, enema”). Then I was too busy getting doped up on morphine and Benadryl in preparation for the exam, so all I noticed of the tattoo were the many colors surrounding a rather representational rendering of a man with brown hair. Short hair, kind of like the doctor’s, so maybe himself in the middle of some very colorful and abstract life experience. That’s my best guess.
Ultimately, it became clear that this lovely artifact of a doctor had listened carefully to my report of symptoms and, in addition to following through on my requests, consulted with a gastroenterologist. He, in turn, took the situation seriously, and rather than just treating it as another OWDOCIC, noticed that the CT scans I’ve had don’t show what’s going on in the rectum, due to hip replacements that white everything out. Wow. I’ve been saying that to my doctors for over 2 ½ months. Someone’s finally paying attention.
The gastroenterologist ordered an MRI. Between my arrival at ER and getting the MRI, there was much back & forth between the ER doc and a so-called nurse (a little guy with undisguised sadistic tendencies) about getting the MRI ordered for my pelvis (no, not abdomen, we need pelvis), about giving me an enema (no, not soapsuds, mineral oil), getting me meds for pain (ignored by little guy nurse and filled by the next shift nurse), and more back & forth with the MRI people about how backed up they were and that no, we didn’t want abdomen, we wanted MRI of pelvis. This all took place between about 2:30 pm and 9 pm or so, at which time I was finally taken for the MRI.
Then the ER doc came in and reported that the MRI had shown a constriction of the rectum, kind of like tumors pushing into it, and that the gastroenterologist with whom he had consulted wanted me to have a colonoscopy.
So probably around 11 pm or midnight I was admitted to the hospital, spent the night gulping Colace, cleaning out my intestines, throwing up, shaking uncontrollably, and finally around 4 am, sleeping at the advice of one of the most attentive and responsive nurses I have ever had. Around 7:30 am, the GI people came in and turned my room into an OR, and an abbreviated version of colonoscopy was done. I was able to watch on a TV screen as the doctor sleuthed around until he found something that looked like tumor and bit off samples with a tiny backhoe jaw to send off to pathology.
The new gastroenterologist’s opinion is that the ovarian cancer has invaded the rectum, and therein lies the restricted passage problem. The remedy, ironically, is similar to that prescribed by my first GI specialist– Miralax every day – but hold the stimulant laxatives and Metamucil. Back to square one?
The good news, I suspect, is that having seen what’s happening in the rectum (where no other expert dared to tread), there is potential rationale for getting radiation treatment to relieve that particular problematic area, since it seems to be a discrete tumor cluster and is the only thing causing me discomfort and limiting my ability to function at this time. Not that I’m looking forward to radiation, but if it’ll help me get my life back….
Well, ludicrous as it seems, my first gastroenterologist, who neither examined me nor offered any options for more effective imaging (such as ultrasound or barium enema or MRI), the one who discouraged me from having a colonoscopy or sigmoidoscopy, did point me in the right direction after all by advising me that if I have significant discomfort, I should go to ER and explore the options there. Unfortunately, I guess that’s the only way to get to the bottom of things.