Tuesday, March 13, 2012

Harder Than You Think

This is probably going to be a big, rambling update.  My mind doesn't work like it used to, I have a hard time focusing my thoughts and speaking clearly.  I assume this is what is referred to as "chemo brain."  I'm not even going to pretend to review this for spelling and grammar so if something doesn't make sense or is contradictory, just skip it.

My previous post after just two days of chemo was probably the last time I felt somewhat like myself.   But to start I want to mention that I was wrong about the steroid I'm receiving.  The IV steroid isn't to make me urinate, instead it's to help keep my body from having severe reactions to the BEP chemo drugs being administered.  I get that steroid every Monday, Wed, and Friday of the week-long chemo treatments.  That same Mon-Wed-Fri I also get an IV of anti-nausea medicine which is much more powerful than the zofram tablets I take every 8 hours.

But everyday I receive BEP I also get a kidney flush drug via IV and this is the one that makes  me have to urinate all the time.

This is all really difficult for me, more so maybe than I thought it would be.  Wednesday morning of the first week of chemo was when I first really felt like maybe I didn't want to do this.  I mean, of course I'm going to do it, but that third day of treatment the nausea was so intense, I had barely slept, and I didn't want to eat or drink anything.  Wednesday morning was the first morning I didn't run, the first morning I didn't drink coffee.  I really didn't want to go to the office that day.

When I got in I told the nurses how nauseated I felt so that's when I found out that I get the anti-nausea IV every Mon-Wed-Fri, they had hoped it wouldn't have to be that often but upped the dose to match my reactions to the drugs.  Although it's an IV you don't get instant relief, it generally takes a few hours, maybe by lunchtime, before I feel better.  But once it kicks in I'm generally good for the rest of the day with just mild nausea to deal with.  Mild nausea sucks, but it's night and day compared to the severe nausea.

Most nights I fall asleep now around 9 or 10 pm and wake up about 2:30 in the morning.  I move out to the couch and watch tv or read or sometimes go right back to sleep.  Often I'm up though for the duration, I hear the alarm go off hours later and Julie wakes up.  She takes Bica out for a run while I lie on the couch in a mildy miserable state.

Friday of the first week of chemo was the worst.  Nausea was severe, I kept food down but just barely.  It was the only day so far where I really wanted to give up.  I did not want to go into the office.  Again I told the nurses how miserable I was feeling and they pumped me full of even more anti-nausea drugs and gave me an additional rx for a steroid to take over the weekend if things got worse.  Julie showed up with a ham and cheese sandwich for me just before noon and when I finished that I felt much, much better.  Color had come back into my face and I looked and sounded better.

Saturday was a lost day.  I never felt terrible but never felt great.  In fact I never even left the condo, I'm embarrassed to say.  But there was some excitement on Saturday, Julie had to give me a shot.  She'd received the instructions from one of the nurses (I volunteered Julie) and it needed to be giving 24 hours after the end of the Friday chemo session.  So at 3:30 on Saturday Julie pulled out the shot and stabbed me in the arm like she was driving a steak through a vampire's heart.

Sunday morning was the best I've felt so far.  I took Bica for a walk around 10 am and ran into a coworker and her family.  I was so glad they saw me at my best and not the depressing, pasty-faced, bleary-eyed, hunched over walking zombie I feel like I am so much of the time.

Monday (yesterday) was just a bleo day.  Julie came in with me and I got benedryl again and then the bleo dose and a flush, but that was it.  We also saw the doctor before treatment (which is good, because that benedryl knocks me out) and he was really concerned about my weight. The one thing that now might delay treatment is the amount of weight I'm losing.  I'm going to try to bulk up this week and next in preparation for the next big week of chemo coming up.  But it's so hard, the thought of food is sometimes really appealing, but often a bite or two and I am full and feel sick.

I slept through the hour or so of the treatment on Monday b/c of that benedryl, and we took the metro home (Julie wanted to cab, I'll listen to her next time).  I started getting chills as we walked home and they only got worse.  Fever and chills are (as we found out yesterday) and common side effect of bleo, but you have to be careful b/c I'm now prone to severe infections.  I took tylenol throughout the day but I was in bad shape for about 9 hours.  First chills for a few hours from maybe 11 am to 1 pm, then a mild fever for the next 7 to 8 hours.  Sometimes the fever wasn't so mild actually, but I did call the doctor and they were not concerned since I had just received the bleo.  Apparently up to 24 hours after the dose you can have these symptoms.  But my fever ranged from 100.4 to 102.5 off and on, around 9 pm it finally broke and I was starving.

I ate two ham and cheese sandwiches and drank so much water and ginger ale.  I took Bica on a several block-walk to get outside and let some of the sweat dry, just to get outside, and to walk off all of that food and beverage I had consumed.

I slept pretty hard last night, woke up again around 2 am but went back to sleep until almost 7.  A walk with Bica this morning and a breakfast of scrambled eggs.

It's hard for me to imagine ever feeling ok again.  I know it will happen, hell I feel guilty even complaining.  This BEP treatment is tough, some of what I've read on cancer forums call it one of the toughest chemo regimens to go through.  But this is almost certainly going to cure me, and in a year or so I should be back to my normal self.  But a lot of the people who receive treatment in the same office are not so lucky.  They're dying, trying to stay alive for a while longer through chemo and other treatments.  So I'm in there everyday feeling like shit, sometimes barely holding on emotionally and these other people (many are my age) have had failed bone marrow transplants, they're trying to shrink a tumor before surgery to remove a lung, and worse.  They're never looking at getting back to normal, this is their normal, this is as good as it might get for them.

So it makes me feel like crap, my pains and my complaints.  But I still have them.  I still feel like crap most of the time, and often I feel sorry for myself.  Hell some of these people who are dying are offering advice to me to help combat the nausea and other symptoms.  You can imagine what an ass I feel like knowing that I have to put up with this for just a few months, when this is their life.

Not sure if I've described the room but there are 10, maybe 12 chairs in the room so it's reasonably social.  There are no secrets that's for sure, you hear the blood counts of each person, you can see the drugs and treatments they're receiving.  Since my treatment has me there all day, everyday, for a week I see numerous people come and go.  Some people just get shots, others receive a 1 or 2 hour treatment.  Very few (1 or 2 others) are there for all day treatment.  You get very used to hearing about the ailments of others, the disappointments as someone's treatment is again delayed because their white blood count wasn't high enough, etc.

On Friday the doctor brought by a young guy who had gone through this same BEP treatment a few years earlier.  Probably a 5 years younger than I am, we exchanged pleasantries and email addresses, but it was at the point Friday morning when I was still really out of it.  But I did email this guy to say thanks for coming by and to see how it went for him.  Part of my not being to scared with the fever yesterday was he told me he would get fevers after bleo.  He also mentioned it took him about a year to feel like himself again after treatment ended, and that 6 months after treatment he lost all of his hair again.  It was worth emailing just for that bit of info which would have freaked me out big time, if that should happen to me.

I don't know how much I'll post again until the next big treatment starts.

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