Chemo round #2

Well yesterday was the scheduled start of round #2. But after seeing my labs, the oncologist said my blood work was not good. My hemoglobin dropped to 11, borderline. My WBC dropped to 3, borderline. My platelets are at 200 (ok for chemo). But my neutrophils were at 1 (too low for chemo, they don't like you to be under 1.5). My lymphocytes are 1.3 which is ok. My monocites are ok at .4, which is up from .2 last week, which was too low. My RBC was at 3.9, borderline.

At least I know why I'm so darn tired.

The oncologist gave me 3 options.
#1 Go ahead with chemo if I agree to Neupogen shots (to help bone marrow grow neutrophils to maturation faster and release them into the blood stream) next Monday, Tuesday and Wednesday.
#2 Postpone till Monday - probably still need the shots, but maybe I'd have a little more energy built back up first.
#3 Postpone a full week. Probably wouldn't need the shots.

The oncologist leaned towards #1 or #2 due to my CEA rising as it has been. And that has been scaring me too. Since I’m only on cycle #2, I hate to back off at all. If I waited till Monday, then the next session would have to be a Monday, or possibly push out till Wednesday. But I couldn't get back on the schedule I want for several cycles. It would have ruined our family Thanksgiving plans. And this is likely the last Thanksgiving we will have everyone together.

So I decided to suck it up and go for it. I am not allowed in public places – no schools, theaters, grocery stores, hospitals or doctor’s offices (unless it is my own appointment). It is a good thing I work from home! I am not allowed around sick people.

I told the doctor how awful last time was, and that if I could choose between colon resection surgery and another round of chemo, I’d choose the surgery. And that I knew I couldn’t do more than one more round of chemo if it was that awful again. But he still didn’t want to back off on anything. He said one more round at full blast, and we’d re-evaluate next time. Darn!

So I did get my chemo. But this time we added Emend. ($100 per pill, but right now my insurance covers it all. Cheaper for them to pay that, than the emergency trips in for fluids and IV anti-nausea drugs like last time.)

The neuropathy issues set in right away again. I got a slight sensitivity to cold in my hands. And again, trouble swallowing anything cold. Then my right hand locked up on me – I couldn’t move it or my fingers. After a bit some fingers could move but my pinkie could not. I had to physically move it with my other hand – weird. After that it worked again. Then the jaw pains set in again. (My oncologist told me he didn’t think the jaw pains were part of the neuropathy. I know better because I found a few other people that have had to deal with this too. Not common, but does happen. I’m going to research and send it to him.) He wanted me to take pain killers for it – ibuprofen – but I can’t take that. So he said Naproxen or Acetaminophen. And if that isn’t strong enough, go to the narcotics and take Vicodin or Percocet. No way. Pain killers make me feel so sick. He is worried that I won’t eat due to the jaw pain. But I will. It is very severe at the first few bites, but then lets up. I can tough out the pain. I just don’t want to get to the point of permanent neuropathy in my jaw/face/throat.

Then the good news came! The nurse said the Dr backed off on my 5-FU! He took out the bolus shot of 5-FU to get it going before they hook up the pump. HOORAY! My colon cancer nurse navigator pulled out the numbers and we figured this is a 15% reduction in the total 5-FU I will get. I think he realized when I said how tough it was last time, and he could see what happened to my blood counts with just one cycle, he decided backing off a bit is probably a good idea.

When I was done, I stopped by the bathroom, and I checked my tongue in the mirror – don’t want any thrush surprises this time. But after I stuck out my tongue, it caused weird face spasms. My cheek muscles were pulled upward. I could only pull them down with my hands. I asked Vicki if I looked ok, and she said other than the really funny expression on my face. But I wasn’t making any expressions! And my throat started to hurt more and more. Instead of just having swallowing cold items hurt, I couldn’t swallow my own spit. It was like swallowing glass shards – worse than the worst case of strep throat you can imagine. As we were walking out I was complaining about the face contortions and the throat hurting. An employee overheard us and grabbed a nurse. That nurse brought me back to my chemo nurse. She said I was having an allergic reaction and needed Benadryl. No driving. I have a driver, so OK.

So my 5-FU pump was disconnecte, and I was hooked up to Benadryl. Within minutes I had trouble staying awake. And I didn’t make much sense. I said really stupid things to Vicki. It was weird. It was like getting a hypo. So I nodded of for ½ hour and got the Benadryl, and the throat and face issues got much better. I could swallow my own spit again (but still nothing cold), and my face wasn’t going wild any more. So, I was hooked back up to the 5-FU, we were allowed to go home.

All along the plan was to stop at Good Earth for lunch. But now it was 3:30, the start of rush hour traffic. And I wasn’t certain I could stay awake for lunch. I slept most of the way home. I crawled into bed at 4:30, and was out by 5PM, until 7AM! Crazy!

Round #2 has been much easier on me. I’m beyond tired, totally exhausted. The stabbing jaw pain is the same as last time. So is the problem if I try to eat or drink anything cold – has to e room temp or warmer. And I have a new issue – lots of eye twitching. I have a bit of nausea, and really no appetite. But I’m still eating and drinking, and don’t wish I could just die like last time. Granted I haven’t hit the worse days of Saturday and Sunday yet. But this Friday compared to the last one is much better. So far I have confidence I can do this 10 more times.

Now I have Monday to look forward to. I’ve been told to expect quite a bit of bone pain, probably the most in the chest and back from the Neupogen shots. But it will get my blood counts back up. I can deal with a little pain to keep from getting infections and other problems. I can do pain – no problem – just a little complaining from me. I can’t do nausea that is never-ending, with extreme fatigue, but no ability to sleep. That pushes me over the edge. And if I need extra fluids I can get them when I go in Monday or Tuesday rather than waiting for Wednesday for labs like I did last time. Of course now I know better and would go in for fluids without waiting that long again anyway, if I have bad trouble like round #1.

I did get quite a bit of work in today. But I’m fading. Tomorrow maybe I can work a bit again. Home health comes out to disconnect me at 1:30 tomorrow, and I think that will always be something I look forward to.