I’m not on my deathbed just yet! Friends are surprised when they see me out and about at a café or art gallery, looking unexpectedly well (despite also looking grotesquely pregnant), so it seems another update is in order.
The short version
I have been quite stable with palliative chemo since the winter and very happy to be feeling better as a result. I have no idea how long this will last, so I am enjoying each day as it comes!
The long version
I’ve been feeling much better since starting a second round of palliative chemo with the new year, so I knew the chemo was working. Finally in April I had a CT scan, and we were all happily surprised to learn that, though one small tumour on my bladder had grown a little, most had pretty much disappeared. My oncologist said he’d never seen this sort of shrinkage before, so he took my case to the tumour board to discuss what steps to take next. They want to look into the possibility of radiation on the one growing tumour, though it’s probably too large for that. They also want me to continue chemo, believing that if I stop, the tumours will quickly grow back, and since I have been tolerating the chemo quite well with only mild side effects, they think I can handle more.
My city garden nook for tea with friends.
But I would like to take the summer off, both to enjoy this time I have been blessed with (the whole point of the chemo) and to let my body recover. My father has made me another appointment with a specialist in this very rare disease at Sloan Kettering in New York, so we’ll see what she suggests. My guess is she’ll also recommend a break from chemo. The last two times I was in New York City to see her I was too ill to do much, so I’m hoping to still be feeling this well so I can enjoy a few days walking about the city. There is so much art to see!
The tumour news is good, and no large tumours also means less pain to manage. I can sit much more comfortably now, so I can enjoy outings to cafes and linger at the table. But I also still have malignant ascites (accumulation of fluid in the peritoneal cavity) that cause abdominal distension, pain, and discomfort, restricting my activities somewhat (no yoga or exercise, and only a little gardening). They also indicate a very poor prognosis, as this is normally an end-stage symptom. I have other swelling too from chemo and steroids, so I’m still about twenty pounds overweight (a lot on a small person). I’ll see if I can get another drainage of the ascites, at least — a super-quick weight loss program!
Ultimately, however, I suppose the bad news negates the good news in this situation; I don’t know exactly how this disease will progress, but medical opinion is that it will.
But I am not suffering (thanks to effective pain medication!) and remain weirdly healthy, energetic, and happy.
I am especially delighted with the gift of another spring and am taking every possible moment to enjoy the flowering and greening of the world around me. I’ve been having lots of fun photographing some of the wonders of nature with that new (is a few months still considered new in the realm of technological devices?) phone that still causes me grief. It has a pretty good camera, though! You can see more of my photos on Instagram if you’re interested.