‘cancer’ Category
The "C" word
No, not Cancer… the other “C” word — Constipation (and one other “C” word you’ll find out about it you are brave enough to make it to the end of this post). The past week has been one of the worst ever, for a condition I’ve never really thought much about. If you don’t want to read about my bowel activities, I won’t blame you for stopping here! I promise the next blog entry will be a bit more mundane.
Going into all this, I’ve known that severe constipation is one of the chief complaints of chemo patients. However, since chronic diarrhea is the main symptom of Crohn’s, constipation has never been something I’ve needed to think about, so I didn’t take the warnings too seriously. The constipation did catch up with me though, and with a vengeance.
By Monday I started feeling slightly nauseous throughout the afternoon, but assumed it was nausea due to the chemo. I had a lot of trouble sleeping that night.
Tuesday was much worse, with me spending most of the day on the couch doing nothing. The nausea got worse, especially after eating (which I did very little of), I had a constant pounding headache, and I felt weak and tired. Anti-nausea drugs didn’t seem to help at all. The headache and nausea prevented me from being able to do anything… even watching TV was a chore. I got almost no sleep Tuesday night, and wasn’t quite sure what was wrong.
Wednesday brought more of the same, until I vomited in my oncologist’s office during my mid-cycle check-up. I realized by now that I was constipated, but was not sure yet what that meant in relation to my other symptoms. I took laxatives Wednesday morning and evening, but despite the promises of “generally produces a bowel movement in 8 hours”, my bowels had apparently completely stopped, which was why I had started vomiting any time I ate. My doctor gave me a new anti-nausea drug, which I vomited in the car on the way home. Dinner didn’t stay down either (nor would anything from now on). I took an over-the-counter sleep aid but still didn’t sleep Wednesday night.
Thursday was just as bad, and I was feeling slightly like I was going crazy, having not slept in days, and spending all day with the pounding headache and nausea, doing nothing (no computer, no video games, no TV), and vomiting any time I ate. Not surprisingly, abdominal discomfort had also been increasing for the last couple days. I called the nurse at the oncologist’s office to get some advice. She said the “last resort” recommendation is a Fleets enema, so Kathie came home from work at noon and stopped at the supermarket on the way. Long story short, my excitement at reading “generally produces a bowel movement in 2-5 minutes” rapidly evaporated when nothing happened after 5, 10, 30 minutes. The day ended with no success, so the nurse made an appointment for me at 10am the next day. My doctor gave me a prescription sleeping aid (Restoril) but I only was able to sleep 3-4 hours Thursday night.
I had taken the recommended Sennecot-S laxatives Thursday morning and evening too, but Friday morning was much the same, with just a bit more sanity slipping away. After being examined by the nurse, I got sent for a quick x-ray to make sure I didn’t have a bowel obstruction, which I didn’t. The nurse said the biggest danger was dehydration, since I hadn’t been able to keep much of anything down for several days. She said one of two things were going to happen – either she was going to help me manage to keep liquids down, or she was going to put me in the hospital on IV fluids overnight. So, she gave me a mix of two anti-nausea drugs (Ativan and Decadron), had me wait 15 minutes for them to kick in a bit, and then had me start sipping a big cup of hot tea.
Well… the tea sipping went well, until all of a sudden, a half hour later, I realized my headache felt much better. After an hour, I’d had at least 20 ounces of tea, my headache was completely gone, my nausea was mostly gone, and overall I felt much, much better. That was when it dawned on me — this was the first caffeine I’d had in a week (and there’s that other “C” word). I rarely go a day without a couple cans of Coke. I’ve stopped for a week at a time several times in the past without any issues, but obviously that was without the added complication of chemo, so I mentioned it to the nurse. She agreed that stopping the caffeine suddenly, at the same time as starting chemo (and taking anti-nausea drugs, which can cause constipation), could have contributed to making my constipation so severe, plus causing my headaches and other symptoms. I was able to keep the tea down, so she sent me home with instructions to keep hydrated, caffeinated, and gave me a prescription for Ambien to help me sleep. Even though I was still constipated Friday evening, I mentally felt much better since the headache was gone. The Ambien helped me sleep a little longer than usual, but still only about 5 hours total. Then again, I did have at least 32 ounces of tea that day.
Maybe it was the kick-start of caffeine, or enough time, or enough laxatives, but Saturday morning things started to return to normal! I suspect the caffeine was the biggest contributor to solving the issue. I continued to feel better and better throughout the day, with no nausea, no headache, and no constipation… just still tired and a bit weak from not eating for a few days. I was able to eat breakfast, lunch, and dinner, and slept 7 hours straight Saturday night, so today I’m finally feeling up to doing things again (like updating this blog).
So, with my second round of chemo this coming Wednesday, I plan to keep my caffeine intake consistent (though not excessive), and start taking Senekot-S consistently. Hopefully round two will be much less eventful than round one! Tomorrow is my rescheduled outpatient surgery to get my chemo infusion port installed now that my blood counts are back up, so the actual chemo should go more smoothly as well. I also am hoping I can prevent the sore mouth from recurring by starting earlier on the salt water rinses. Several lessons learned, and hopefully I can put the results to good use! Time will tell…
Getting better, but low platelets
Monday was definitely an improvement over Sunday… maybe there is something magic about the Magic Mouthwash. Mouth still hurt, but not as bad. I still felt like I had a heck of a cold too, so there was no way I was going in to work.
In the early afternoon a nurse at the hospital called, saying “I see you’re scheduled for medi-port surgery here at 1:15pm tomorrow”. That was the first I’d heard! I was expecting the surgery to be next week, after my blood counts had a chance to recover from the first chemo. I asked the nurse about the timing and she said to check with the surgeon. Surgeon’s nurse said it’s up to the oncologist to decide. Oncologist’s nurse said it’s up to the surgeon. So, I asked them to do a blood test rather than point fingers. I was tested at 4pm, last appointment of the day, and my platelet count and white counts were really low. Platelets (the cells that form clots and prevent bleeding) were at 55,000. The normal range is 142,000 – 424,000. I’ve read online that a platelet count of 50,000 or higher is needed for surgery, so I’m cutting it really close. I left a message for the surgeon’s nurse, but they had already closed for the day.
Just in case, I planned for the surgery going forward, meaning no food or drink after midnight. The surgeon called around 10am today though to tell me he’s a little uncomfortable with the platelet count, and would like to try next Monday or Tuesday when my counts should be much higher. His office had told me there were no available times on those days, but he said he’d try to work me in. Sounds like a much better plan, as I should be feeling close to 100% by then (I hope).
Since I’ll be getting blood tests every week, I’ve started tracking them online. Here’s my platelet counts:
The First Weekend
Well, it looks like my hopes that chemo – and especially the first few – would be fairly uneventful, was a bit overly optimistic. I continued to go downhill this weekend with more and more side-effects piling on. By far the worst was the mouth sores (now aren’t you glad you read my blog?) which started on Friday. This happens to about 40% of chemo patients. By Saturday evening it was extremely painful, and wasn’t getting any better with frequent salt-water rinsing. I called the doctor’s answering service and their on-call called in a prescription for “Magic Mouthwash #3”. This is something that each pharmacy makes itself, and has its own recipe for, so I don’t really know what’s in the one I got, but they all tend to include some kind of topical analgesic like Lidocaine, some Maalox, and some Benadryl. The Lidocaine numbs my mouth completely, which is nice, but only lasts 20 minutes or so. I’ve also had a monster headache all weekend, sore throat, and runny nose, so I suspect I’ve got a cold, plus I’ve been exhausted and napped many times on Saturday, and most of the day Sunday. Also the peripheral neuropathy has arrived – numbness and tingling in the fingertips.
Still no nausea, so I keep looking at that silver lining! I’m hoping today will be a turning point and I’ll start feeling gradually better… until my next treatment on the 13th!
Chemo Day 3
Friday started out fairly well, but took a decided turn for the worse. The bone pain from the white blood cell growth which woke me really early was annoying, but fairly controllable with Tylenol throughout the day (although my left arm hurt all day long). I decided to return to work for the day. I had no problems with breakfast, but my lunch tasted really disgusting. I assumed it was because the AOL cafeteria was, as usual, far from the peak of culinary achievement. After lunch though my mouth and tongue started hurting all over, as if I had lots of sores (one of the expected side effects of chemo). I started rinsing with warm salt water as instructed. For dinner we went out to a favorite restaurant, where the food looked delicious to me, but I immediately discovered had no flavor at all, and I could only eat a little of it. It seems I’m in the “all food tastes funny” phase of chemo that I’d heard about. Yuck. Hopefully this will only last a few days after each treatment, but I’m not sure yet.
Silver lining: almost no nausea so far. The only time I have any nausea is when in the car, and then it’s very low-grade nausea unless I close my eyes, in which case it comes on much stronger. Having never been car-sick or sea-sick or any other kind of motion-sick in my life, I finally have an appreciation for Kathie’s tendency to get car-sick easily.
Chemo Day 2
After yesterday’s short novel, I’ll keep today’s update short. Woke up at 5am and was wide awake (probably because I went to bed at 8pm!). Took my second Emend pill for nausea. Went for Neulasta shot at 10am. Overall, had a pretty easy day of it… no nausea, slightly tired throughout the day but nothing too unusual. Worked from home part of the day. Around 2pm I started getting really sleepy all of a sudden, but ended up working through it and felt fine again by 4. Started feeling the Neulasta “bone pain” in the evening, in my left leg, arm, and shoulder (not sure why just the left side). Took two Tylenol for it which helped, and went to bed. Unfortunately, I woke up at 4am with the Neulasta bone pain everywhere. Two more Tylenol has dulled it considerably, but it’s still quite noticeable. It should only last a day or two.