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.\u00a0 I mean it blew but I could tolerate it.\u00a0 Third week went ok but throat was still bad.\u00a0 Needed hydration a few days ’cause I wasn’t able to drink enough liquid.\u00a0 That was just targeted radiation on where I currently had disease.\u00a0 Third week was three days of radiation and all the radiation was around my waist and lower.\u00a0 Problem start Thursday, my throat started to in addition to the pain, started to burn a shitload too.\u00a0 Thursday it was still tolerable but Friday I couldn’t stand it, was trying to eat and each bite was excruciating.\u00a0 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).\u00a0 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.\u00a0 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.\u00a0 The hospital she’s at is 45mins with no traffic and this is 5pm in Chicagoland, so ya, fucked.\u00a0 She said she’d be there to give me the prescription if I didn’t get there before the pharmacy closed.\u00a0 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.\u00a0 So I got some morphine to take.\u00a0 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.\u00a0 I tried to eat something on Saturday and it fucking killed, so didn’t get more than a bite down.\u00a0 Sunday same thing.\u00a0 So I stopped eating and focused on drinking enough water.\u00a0 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.\u00a0 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.\u00a0 I’m still taking the higher dose of morphine three times a day, haven’t started to lower it yet.\u00a0 Now the problem is less my throat and more my stomach that sometimes gets a little angry about what I’m eating.\u00a0 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).\u00a0 I have no idea what the deal is with that but whatever I guess.\u00a0 Also, if I drink to much liquid at a time, especially water, it makes me want to throw up.\u00a0 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?!\u00a0 Guess it’s possible that’s the morphine, don’t know.<\/p>\n
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.\u00a0 When I stopped trying to eat it was much better than trying fruitlessly to eat.\u00a0 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.\u00a0 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.\u00a0 Don’t know.\u00a0 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.<\/p>\n
The reason I put “how recovery went (is going?)” in the title is I’m still not recovered.\u00a0 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).\u00a0 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.\u00a0 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.<\/p>\n
They scheduled me to go in for the high dose chemo on this coming Tuesday.\u00a0 They don’t want to wait too long and let the disease get control again.\u00a0 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.\u00a0 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.\u00a0 All days are inpatient for this.\u00a0 Then it’s at least two weeks of recovering in the hospital as inpatient.\u00a0 Maybe three weeks.\u00a0 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.\u00a0 Either way it’s a long ass time.<\/p>\n
I’m doing ok with it but am freaking out a little bit.\u00a0 This is going to blow and blow hard.\u00a0 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.\u00a0 That applies to both right now and once I’m actually there.\u00a0 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).\u00a0 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).\u00a0 So that’s one of the things that has me a little apprehensive is I probably can’t fall back on sleeping.\u00a0 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.<\/p>\n
Guess that’s it for now.\u00a0 Not sure how much I’m going to update this while doing the high dose chemo or recovery time.\u00a0 I may check in but don’t know how much I’ll feel like typing.<\/p>\n","protected":false},"excerpt":{"rendered":"
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.\u00a0 I mean it blew but I could tolerate it.\u00a0 Third week went ok but throat was still bad.\u00a0 […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_s2mail":"","spay_email":"","footnotes":""},"categories":[3],"tags":[],"class_list":["post-278","post","type-post","status-publish","format-standard","hentry","category-hodgkins-lymphoma"],"jetpack_featured_media_url":"","jetpack_shortlink":"https:\/\/wp.me\/pqH02-4u","_links":{"self":[{"href":"http:\/\/blog.mrblob9000.com\/index.php?rest_route=\/wp\/v2\/posts\/278","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/blog.mrblob9000.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/blog.mrblob9000.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/blog.mrblob9000.com\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"http:\/\/blog.mrblob9000.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=278"}],"version-history":[{"count":3,"href":"http:\/\/blog.mrblob9000.com\/index.php?rest_route=\/wp\/v2\/posts\/278\/revisions"}],"predecessor-version":[{"id":281,"href":"http:\/\/blog.mrblob9000.com\/index.php?rest_route=\/wp\/v2\/posts\/278\/revisions\/281"}],"wp:attachment":[{"href":"http:\/\/blog.mrblob9000.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=278"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/blog.mrblob9000.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=278"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/blog.mrblob9000.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=278"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}