Pain in the Ascites

Chemotherapy Round #10: Wednesday, 18th January - Tuesday, 7th February 2012

When updating people about my health, whether here or on FaceBook, I always strive for "honest-but-upbeat". I hate that cancer has made me a constant source of stress & anxiety for everyone who cares about me. I know worrying is the price for caring about someone, and that my loved ones pay it gladly, but still, it sucks. Stupid fucking cancer really, really sucks.

Which is why this update has been one of the hardest to share. It's been a very rough couple weeks.

When last I updated the blog, I'd had the PET scan showing that the cancer was still active rather than just scar tissue like the CAT scan suggested. This wasn't a huge surprise, because I'd been having more & more aches & pains, which although I diligently reported them to my doctors, I tried for the most part to write off as other things. I hoped that round #10 of chemo, full chemo, would knock the pain out again. That hasn't happened.

The chemo itself was one of the easiest rounds I've had - after 9 weeks since my last full chemo, my body had recovered more of my strength & energy than I thought. Just the pain was a problem, trying to find a new pain pill regimen that worked for me. At first I was hoping to manage with just over-the-counter stuff, like Tylenol, but that wasn't controlling it. So when we went in on Tuesday, 24th January to get the baby bottle off, we met with the pharmacist and she put me back on the Dilaudid.

We went home, expecting to be entering the recovery phase. Normally with chemo every day is a little better at this point. Instead, I struggled, and vomited a couple times, and by Thursday night in the wee hours I was tossing & turning, in pain, unable to get comfortable enough to sleep. I got up to go the bathroom and caught a glimpse of myself in the mirror, and was shocked by how distended my belly was, especially my upper abdomen. Starting right under my boobs I had a giant curve, like I was pregnant. I realized then that my ascites had gotten much worse and were what was causing a lot of my discomfort.

What are ascites? It's fluid in your abdomen. It's similar to a blister - your body tries to protect itself by building a layer of fluid over the injury. In this case, the growing cancer. I had ascites at the time of diagnosis; they were drained off during the exploratory surgery that found the cancer, and hadn't come back because chemo had worked so well. Dr. Katakkar had mentioned months & months ago that the fact that they hadn't come back was one of the surest signs that chemo was working. When I'd had my exam this round on the Wednesday right before chemo, he'd commented that there was a little fluid back, but nothing like this.

What did this mean? That the ascites had gotten so much worse, right after chemo? Ascites are a common complication from stomach cancer, and I had read online about a woman who had to have hers drained regularly. At this point, in the wee hours of Thursday night, having a giant needle stuck in my abdomen sounded like sweet relief. I decided to call the cancer clinic about this new complication first thing in the morning, and had a fitful sleep where I dreamed about jabbing myself in the belly with a giant bbq fork and draining the fluid off that way.

Friday morning I called the Cancer Centre & asked about the possibility of draining the ascites. Dr. Katakkar was out of town, but the new oncologist, Dr. Fibich was in, and agreed to get me an ultrasound & see me. So Sterling & I headed down to the hospital. We went to the Cancer Centre for some bloodwork, then upstairs for the ultrasound, where both the technician & doctor called it a "moderate" amount of ascites - I hope I never have "severe"! The problem was (is) that it's not one giant pocket; like my cancer, it's spread throughout my abdomen in isolated pockets. They can't drain either of the two really painful ones, in my upper abdomen, because of all the organs up there (stomach, liver, etc.). They end up marking an "X" in sharpie on my lower left, down above my hip, and "2.5 cm", which the technician explains is where the pocket starts; the needle has to go in at least that far, probably more like 3-3.5 cms. Gulp!

Back down to the Cancer Centre to see Dr. Fibich. He was very nice. He had read a lot of my file, we talked about my case for a bit, he showed me the ultrasound. Unfortunately, he wasn't very optimistic about what drainage would do for me, since they couldn't touch the pockets that were really bugging me, and just in general he said he's found it usually only gives minimal relief. But after studying the pocket they'd marked, he was willing to try. He froze the area, and tried twice - managed to get a small sample which he sent for tests. It looked like thin blood. After the second attempt he gave up, saying that the relief wasn't worth the discomfort the procedure was causing. He told me to take as much pain killer as needed, and to come back in, even over the weekend to the emergency room, if things got worse, or if the ascites started causing breathing problems. Dr. Katakkar would be back Monday & he would discuss with him.

Dr. Fibich confirmed the ascites were a bad sign. The most likely explanation is that the chemo regimen is no longer working. However, given the timing, it's also quite possible that this was just where the cancer was heading, and my switch back to full chemo was too little, too late to stop it from happening. In that case I will hopefully get better with the next round of chemo. There's also a tiny possibility that the chemo itself, killing the cancer, caused the flair-up in irritation & the ascites. It will be Dr. Katakkar's call whether to switch my chemo, or to try at least one more round with this protocol. But bottom line, there's little to nothing anyone can do until the next round of chemo. I called back Monday, and Dr. Katakkar concurred with all of this. Nothing to do but wait it out.

That weekend, 28-29th January, was awful. I was restless, squirmy, no position was comfortable for more than a few moments. The best that could be found was lying on my left side in bed in a semi-fetal position. I couldn't even lie comfortably on the couch. So it was pretty much a total bed rest weekend, so boring, so uncomfortable. The way I describe it is, that feeling of being completely bloated after you've eaten way, way too much at a holiday meal. But you're actually hungry, because you haven't been able to eat anything. And what little I eat, I can't seem to keep down. I've puked more in the last two weeks than in my entire 33 year life before that. There's just no room for food, and/or the fluid is pressing on my stomach, causing me to heave.

I did get some relief late Sunday night. In the wee hours, lying there, trying to get comfortable, it was like something suddenly shifted, and some of the pressure fell away, maybe 10-20%. It's not a lot, but it's something, and I've been grateful. It's meant that in the last week I've been able to sit or lie on the couch some & watch TV, more than I was able to do last weekend. I can also lie on my other side as well, giving me in general more options of "comfortable" positions. I've barely been on the computer though. I can't find a comfortable way to sit in my computer chair. Twice already, writing this blog post, the pain's gotten so bad I've had to go lay down in bed for 10-15 minutes to let it pass before another short session in the chair.

I managed to make 48 hours without puking. But that ended abruptly yesterday. Friday 3rd February I was awakened out of a dead sleep at 5AM to run to the bathroom & worship the porcelain god. There is something oddly sweet about both cats coming in the bathroom & hanging out with me while I retched. Either that or they wanted to see Mommy hacking up a hairball, or most likely wanted to be fed.

Sterling woke up around 6AM, after the first 2 rounds of puking but before the 3rd. He's so sweet, he brings me gingerale & rubs my back while I hurl. I'm sure if I had any hair he'd hold it back for me. I am so lucky to have him.

Yesterday (Friday) was the most puking day yet - in addition to the 3 times in the morning, I puked up my dinner (a few bites of taco) right before bed. Then I was up every half hour, 4-5 times last night, pooping water as well. (I've also been struggling with constipation even before this, so have to try to get some laxative in between all the other meds as well). And then this morning, I took my morning meds, and immediately puked them up as well, in spite of there being absolutely nothing in my system at all. I was crying this morning, clutching the toilet, Sterling rubbing my back, and I just kept saying, "I'm so scared." I've been really lucky with my quality-of-life so far, but this... this is just not good.

I'm OK, really. I will get through this. This morning I decided to stop trying to be a hero & just take more meds already: more breakthrough pain medication when I need it, and the anti-nausea pills on a regular basis, since I'll be fine fine fine & then suddenly horribly nauseous & puking. Hopefully these measures will help.

Everyone I've told "offline" has been so sweet, and expressed such feelings of helpless. "If there's anything I can, just let me know." I wish there was, but at this point there's just nothing anyone can do. Just knowing I have all your good thoughts/vibes/prayers is a great comfort. Thank you. And I hope for better news to share with all of you after chemo next Thursday, like the ascites going down.