101* is not a good weight for me
The hellscape that is colitis
*101 lbs = 45.8 kg
As I near the end of my cancer treatments, I continue to struggle with gastrointestinal (GI) side effects. When I reread my past chronicles, I’m struck by my concluding many articles with sunny optimism. If only writing would make it so. My R.I.P Coffee article from May 13 was wildly optimistic and incorrect. After a few days of relief in May, my condition took a turn for the worse, and I find myself still unable to digest food properly. My weight loss continues.
For those who crave a summary:
Diagnosis: Ulcerative colitis, a side effect of the immunotherapy (cancer treatment). Immunotherapy revs up my immune system, allowing my own immune system to kill cancer cells. A dangerous side effect is that my immune system can also attack healthy cells.
Initial intervention: Prednisone to slow down the immune response. Since this intervention operates at cross purposes with the immunotherapy, my final scheduled immunotherapy infusion on June 9, will be canceled or postponed.
Outlook: Awaiting biopsy results from endoscopies performed on May 26.
Read on for nuance and humor …
I am suffering. I don’t use that term lightly. Yet, every way I examine the past few months I cannot escape the awfulness of this phase. Yes, these last months have been punctuated by many rays of goodness, most notably the deep, meaningful interactions I have enjoyed with family and friends. I need and treasure these moments.
The theme of this phase continues to be a roller coaster of diagnostics and interventions, this time in service of the side effect. I am not afraid of doing the work, so with each proposed intervention, I commit, however, painful the intervention might be physically and emotionally. Some of the interventions, like the drug from last month, offer up flaccid signs of success. This amps up my optimism and likely contributes to a placebo effect. Unfortunately, all of the interventions up until now have been operating without data and were bound to fail.
After securing a gastroenterology appointment on May 26 for upper and lower endoscopies, I got my data, with pictures. The good news is that my esophagus and stomach are normal. Not so good is my colon. I have ulcerative colitis, which is nothing to trifle with. It causes inflammation and ulcers in the lining of the colon. Treatment involves managing the symptoms and preventing flare ups. There is no surefire cure, short of surgical removal of the colon in extreme cases. The cause of the disease is typically unknown. Because my case is caused by the cancer treatment, my prognosis might be different. I hope so.
Navigating pain and disordered eating since the beginning of March, I have surprised myself at how often I experience bouts of despair. Food is such an important part of connecting with people and enjoying life. I do believe that my despair is situational. When I’m not in pain, when I am munching on potato chips, I bounce back quickly. Unfortunately, every night is bad, interrupted. I recall the bone crushing fatigue when my sons were newborns. This time, I’m on my own, spending nights with my iPad.
Also distressing has been the lack of clarity. When will I experience relief? What actions should I take? When will I have answers? What is the long-term prognosis for this side effect? Three or four months over the course of my life might not seem like a long time. In my current physical and emotional state, every day is an uncomfortable adventure I’d rather not be on.
For me personally, this interlude has felt urgent and different starting with the very first sharp pains in early March. From the beginning, I have conveyed that sense of urgency as I shared my symptoms with my doctors. My vital signs and blood work were normal, so we stepped through all of the usual interventions for GI issues: over-the-counter (OTC) digestion aids, diet, OTC GI medicine, prescription GI medicine, tests for infection, targeted steroids.
My uncontrolled weight loss took off in May and got the attention of the doctors.
We’re at the systemic steroid phase now, which offers some daytime relief. This is not a cure, however, and I will need to wait for the results of the numerous biopsies the doctor grabbed on May 26 for next steps. As I’m tired of my old optimistic self declaring victory prematurely, I’m just going to leave it like that here, in limbo.
A word on colonoscopies. Even though I disagree with this chirpy statement from the gastroenterologist’s assistant:
The prep has really improved!!
I endorse colonoscopies as an important screen. Maybe as important as flossing.
And a couple notes on interactions I’ve had with humans.
Most inartful comment. I was on a call with an insurance nurse who needed medical information. I described my days and nights in detail. Her unhelpful summary:
So your worst side effect is sleep deprivation?
Delightful and supportive comment. In contrast, my friends and family offer up gold.
Is this the time to shake my fist in God’s direction as Tevye did in Fiddler on the Roof?!!!?
Friend of Lagomorpha Bill was over Saturday for a visit. He brought delicious carrots and tops for Bun.
The Bun video is much better with the sound turned up!
I do not like what I'm reading here. I'm glad you are writing about it. You're powering through a very challenging time right now. Thinking of you and here for you when you need!