How radiation and recovery went (is going?) and what’s next

Second (and last) week of ‘full body’ radiation went ok, throat got worse and sucked but not super terrible, just had to watch what I ate and remember to overly chew my food and it was ok.  I mean it blew but I could tolerate it.  Third week went ok but throat was still bad.  Needed hydration a few days ’cause I wasn’t able to drink enough liquid.  That was just targeted radiation on where I currently had disease.  Third week was three days of radiation and all the radiation was around my waist and lower.  Problem start Thursday, my throat started to in addition to the pain, started to burn a shitload too.  Thursday it was still tolerable but Friday I couldn’t stand it, was trying to eat and each bite was excruciating.  So in the middle of the meal I was like fuck this and called the doctor (since it was already 5pm figured I might be able to catch her but if I waited any I definitely wouldn’t be able too).  Got her on the phone and explained what was going on and that the Norco (which is tylenol and Hydrocodone which is vicodin) wasn’t doing anything and I needed something stronger.  She said she could prescribe something and would be happy to but she wasn’t going to be able to call in something stronger than Norco, I had to go pick up a prescription or pick it up from the hospital pharmacy, which closed at 6.  The hospital she’s at is 45mins with no traffic and this is 5pm in Chicagoland, so ya, fucked.  She said she’d be there to give me the prescription if I didn’t get there before the pharmacy closed.  She then called back and said to go to the inpatient pharmacy if we didn’t get there fast enough to get to the outpatient pharmacy and that they’d have the meds for me.  So I got some morphine to take.  It helped slightly, enough that I could drink water (which before killed as well) but couldn’t eat anything else, even Ensure (liquid with vitamins and calories) burned like a bitch.  I tried to eat something on Saturday and it fucking killed, so didn’t get more than a bite down.  Sunday same thing.  So I stopped eating and focused on drinking enough water.  Had an appointment that Monday (the 5th) and they tripled the amount of morphine I was taking each dose and went from twice a day to three times a day.  I was able to eat some macaroni and cheese on Thursday night and have been slowly been able to eat more normal stuff, but still have to over chew it.  I’m still taking the higher dose of morphine three times a day, haven’t started to lower it yet.  Now the problem is less my throat and more my stomach that sometimes gets a little angry about what I’m eating.  Subway turkey and bacon sub with mustard, easy mayo, lettuce and lots of black olive was worse on my stomach than Chipotle chicken burrito bowl with a little bit of the hot sauce (that’s actually very hot), sour cream and cheese (and rice with lime juice and cilantro).  I have no idea what the deal is with that but whatever I guess.  Also, if I drink to much liquid at a time, especially water, it makes me want to throw up.  If I burp it helps to relieve it some and the combo of burping and taking a Zofran (anti-nausea drug) works great, but what the fuck?!  Guess it’s possible that’s the morphine, don’t know.

When I was trying to eat and my throat was creating excruciating pain I was getting the closest I’ve come to breaking mentally over anything that’s happened to me previously involving cancer or treatment.  When I stopped trying to eat it was much better than trying fruitlessly to eat.  I don’t know if it was purely the pain or because it was food which should be delicious and not painful but was neither.  Or if it was because of both, it being not that delicious (food has been kinda bland the last few weeks) and holy fucking shit painful.  Don’t know.  They said the same thing will happen again from the high dose chemo, at least I’ll be inpatient so they can manage it quickly and better, at least hopefully.

The reason I put “how recovery went (is going?)” in the title is I’m still not recovered.  My immune system is still pretty fucked, my white blood cells are 0.9 (should be 4.0 – 10.0), hemoglobin are 8.1 (should be 13.0 – 17.0) and platelets are 7 (should be 150-400).  So I got an transfusion of platelets, but didn’t get any red blood cells because my hemoglobin was just barely good enough to not warrant the risk of potential problems with the transfusion because my white blood cells are so low.  On Monday before (or was it the Friday before?) my hemoglobin was like 6.8, so they gave me two bags of red blood cells but the threshold is 8, and I was 8.1 last Thursday.

They scheduled me to go in for the high dose chemo on this coming Tuesday.  They don’t want to wait too long and let the disease get control again.  I ask how healed my throat and me overall should be before going in for the high dose chemo and she said, because my immune system and white blood cells are so low, that this may basically be as healed as I’m going to get until the stem cell infusion.  I clarified how many days of chemo it is and it’s 6 days of chemo, slow drip for basically the whole day each day I think she said. A day off then they do the stem cell infusion.  All days are inpatient for this.  Then it’s at least two weeks of recovering in the hospital as inpatient.  Maybe three weeks.  They seem to count the chemo days as ‘negative days’ and the day they do the stem cell infusion as day one, so I think it’s three weeks of recovery but might be two if they count the 6 days of chemo as part.  Either way it’s a long ass time.

I’m doing ok with it but am freaking out a little bit.  This is going to blow and blow hard.  Just have to focus on the goal and focus on taking it day by day (hour by hour? minute by minute?) and try not to predict how much it’s going to suck and let that weigh on me.  That applies to both right now and once I’m actually there.  It’s going to be hard once I’m there and it starts to not let how much it sucks get me real down but have to try not to anticipate it being doom ass terrible (reverse placebo happens and you can make shit worse than it actually is).  What saved me the first chemo treatment (ABVD) was sleeping a bunch, but this time since I started the ICE chemo treatments I haven’t been sleeping that well, can’t sleep for more than 4 or 5 hours and usually sleep for 2-3.5 hours at a time, get up and take some advil and go back to bed (if I don’t take the advil every 3.5 or 4 hours I can’t stay asleep even worse and when I do sleep it’s not quality at all).  So that’s one of the things that has me a little apprehensive is I probably can’t fall back on sleeping.  As I’ve been saying all along though, I’ll just have to wait and see what happens and deal with what comes at the time.

Guess that’s it for now.  Not sure how much I’m going to update this while doing the high dose chemo or recovery time.  I may check in but don’t know how much I’ll feel like typing.

6 Responses to “How radiation and recovery went (is going?) and what’s next”

  1. maikins says:

    Man sounds rough, hang in there dude! Which hospital are you going to stay in for the high dose? Hopefully in the hospital environment they can make you comfortable… do you know if they are going to be giving you nutrients and stuff through an IV there? Just thinking then you won’t need to deal with your throat as much.

    And how is talking? Assuming it sucks but you never know, could be a different part of the throat.

  2. bLOB says:

    I’ll be in Evanston.

    Don’t think they’re going to be giving me nutrients through IV. Think the plan for them is to make me as comfortable as possible so I can eat… Which kinda sucks but we’ll just have to see.

    When I wasn’t eating because of my throat pain, talking made it worse, but not that it’s under control talking doesn’t do that much, but don’t want to talk a bunch for extended periods of time.

  3. bLOB says:

    oh, and to make matters potentially worse, my brother has a bad cold… holy fuck I hope he doesn’t give it to me…

  4. Intuit says:

    This is for your Brother….

    With such a low, all-around blood count, I’m sure you’ve lost some weight. The one bright side to this may be that with so little intake, problems with garbage building up in your systems may not be as high. (no kidney, liver, jaundice, dialysis, etc issues I hope…) Stay strong…

  5. bLOB says:

    oddly enough I haven’t really lost much weight, like 5 or 10 lbs, even though I didn’t eat for a week and haven’t been eating normal for at least a couple before and one, one and a half after.

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