Sunday, July 06, 2014
In my last blog entry, I wrote about my husband getting sicker again. He had the PET scan, which (we found out a couple of weeks later) showed activity in the lymph nodes and in his colon around the site of the previous surgery. He also had the colonoscopy and endoscopy, which turned out to be a real disaster. First, the prep didn't do much (this is the one that's supposed to give you the runs); he finally started going the morning of the procedure. They decided to go ahead anyway; the endoscopy part went fine and everything looked ok, but they couldn't do the colonoscopy at all - he had another blockage (the whole thing started when a blockage was found 2 years ago). Between drinking all the prep, that then couldn't get out, and the air they put in to get a better view (they always do this), he was a mess when he came out - lots of pain and really sick, and not getting better. After a couple of hours they called 911 and transferred him to the hospital, where he spent a couple of days. Since then he's been on a liquid diet; he will have surgery this Tuesday to bypass the obstruction (this means he is getting an ostomy bag, which he dreads) and then go back on chemo a few weeks after that.
So I'm trying to keep myself together; I want to be healthy so I can take care of him! I am in better shape than I was the first time around, thanks to all the exercise I've been doing; I've put on a couple of pounds in the past two weeks but am not really worried about that at the moment.
He'll be in the hospital for several days after the surgery; I will stay with him the whole time (I go nuts if I'm not there). So I probably won't be eating terribly well (although you would think the hospital cafeteria would have healthy options), and exercise will be tough, but that's not my top priority at the moment.
So more stressed out - I am really scared about the surgery, and about the chemo, and about the cancer - I try to be strong. Wish us luck.
Saturday, June 14, 2014
I lost another two pounds since my last entry but that's not what I want to write about today. My husband has known he has celiac disease since he was in his early 50s (after decades of being sick and not knowing why - a story for another time). But a couple of years ago he started feeling worse - lots of digestive issues, pain, and so forth. He thought there were more and more things that were irritating him due to the celiac disease (I was suspicious, particularly when he said grapes were a problem, but didn't know what else it could be).
Well, he eventually got sick enough that I took him to the emergency room; another long story goes here but the upshot was that a month later we found out he had cancer. Extensive surgery removed tumors in his large and small intestines, as well as lymph nodes and some small, local metastases. After recovering from the surgery, he had 6 months of chemo, ending about a year ago. Scans right after the chemo and again last December were clear.
But he's been getting sicker again. Along with the cancer, they removed about 6" of his small intestine that had been damaged by Crohn's disease - something else we didn't know he had! We didn't really think about this, since the cancer was much more urgent, but as his immune system's been recovering from the chemo, the Crohn's has been getting worse. December's colonoscopy showed ulceration in the end of his small intestine; the gastroenterologist put him on medication but it didn't work for him (much worse pain).
So last week he had his regular CT scan (looking for cancer); this showed enlarged lymph nodes, which could be either cancer coming back, Crohn's disease acting up, or something else. The oncologist wants to do a PET scan right away, so that is scheduled for Monday. Meanwhile the gastroenterologist wants to do more exams to see if he can figure out more about what is going on with the Crohn's, so he will do another colonoscopy and endoscopy a week from Thursday.
All of this is very scary. Since his cancer was stage 4, recurrences are not out of the question; we were hoping that since it was a very early stage 4 he'd dodge that bullet but maybe he hasn't.
Or maybe he has and it's Crohn's disease; not cancer but also no picnic.
I have not been eating very well since we found out about the lymph nodes on Thursday; I tend to deal with stress by eating, and this is very stressful. I am working on getting back on track - he will need me to be healthy if I need to be his caregiver again!
This whole thing just really sucks. Sorry for the language (I'm censoring as much as I can!). I am scared and upset, and so is he.
Tuesday, April 29, 2014
I lost another 4 pounds last week; I am now down to 191. I am feeling better, and am back to exercising. Still eating well; keeping the salt below 1500 mg/day is proving to be quite a challenge but usually I am below 2000, anyway, and I want to start cooking from scratch more, which will help.
I'm starting to jog a little bit when walking the dog; I can't do it too much as it's not good for my knees (I've had them both replaced - I have osteonecrosis, a disease where the bone dies around the joints, not arthritis) but it feels good to be doing even a little. I used to be quite an avid runner.
Sunday, April 20, 2014
Now down to 195!!! Yay!! This is my lowest weigh-in since April of last year. I changed my diet to 1200 calories per day (plus or minus 100), and 1600 mg of sodium, on March 16 of this year. Since then I have lost 11 pounds. I think the salt may be the real key (much as I hate to say it).
Exercise helps too, of course, but for the past week I have not been well, so haven't exercised at all. So I'm pretty sure it's the diet.
Saturday, April 12, 2014
My husband has celiac disease (and also Crohn's, and he had small intestine and colon cancer last year - it was quite a year!!!) so he needs to eat gluten free. Usually I eat gluten free as well, so I don't accidentally gluten him, and so we can kiss each other without worrying :-).
So there was a big gluten-free expo this weekend in the Chicago suburbs, about an hour from where we live. Tons of free samples, lots of things to taste - a real extravaganza! Usually I would eat myself into discomfort at something like this. Well, I did have a lot of samples, and did get full, but I skipped a lot of samples as well, and was never uncomfortable. And it was a lot of walking and standing - didn't show up as a lot of steps, but I was on my feet for several hours.
We came home with lots of goodies! And after the expo we visited the nearby Japanese marketplace, which we also like; my husband got himself some sushi, some gluten-free mochi ice cream, and some bean cakes, and we sat and had a nice cup of green tea (sencha). All in all, a lovely afternoon.
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