Wednesday, August 31, 2011

Day +5

I started Neupogen this morning. They're going to double the dose since I was right at the weight threshold for different doses, and they decided to go with the higher one from now on. I got a bit of a rash on my legs that went away after about half an hour. They'll give Benadryl if it's ever more of an issue. I'm still feeling really well. No more tired than I would expect to be so I'm getting some exercise each day.

Day +4

Nothing terribly exciting today. My right eye got a little blurry for about an hour, but it went back to normal. Dr. Burt decided to stop Flagyl, at least for now, just in case that had anything to do with it. Still no reaction from Meropenem. I'll start Neupogen in the morning.

Tuesday, August 30, 2011

Day +3

They allergy tested me for Meropenem, the antibiotic they wanted to use. It was just a skin test, injecting a bit under the skin to see if a reaction occurs. That went fine, so they gave me a small dose of it and waited, then gave me the rest after seeing no reaction. I'm still feeling well, no more tired than usual.

Sunday, August 28, 2011

Day +2

Nothing exciting today. My counts bottomed out, 0.1WBC and immeasurable neutrophils, so the only way to go is up. Still feeling pretty well.

Saturday, August 27, 2011

Day +1

I'm neutropenic as of today (0.6 WBC). I actually feel even better. They gave me Carafate before meals to help calm my stomach and it works pretty well. They'll do allergy testing for Meropenem on Monday to see if they can use that instead of multiple other antibiotics to make things easier on my kidneys, but it'll be fine even if they can't. Nothing too exciting, which is good.

Friday, August 26, 2011

Day 0

I'm still not quite neutropenic. I should be by tomorrow or Sunday. I felt pretty good this morning. The same upset stomach but that's all. The nurse brought in the pump for the stem cell infusion, and gave me Tylenol, Benadryl, and Hydrocortisone for premeds. The cryogenicist came in with the two sets of frozen cord blood and thawed them when everything was ready. They asked if I wanted the chaplain to bless the stem cells before the infusion so I figured why turn down any possible good fortune.

The infusion itself went really well. The preservatives put a funny taste in your mouth but mints took care of that. The preservatives also make you excrete a cream corn smell from your lungs. That's not something I can notice, though. They monitor vitals throughout and for a little while after. I haven't started to get any hives today so they discontinued Benadryl. Now I just stay healthy and wait, probably about 2 weeks, for the stem cells to engraft and grow my new immune system. They'll do blood transfusions as needed, and I'll start Neupogen injections to stimulate stem cell production in a few days.

Thursday, August 25, 2011

Day -1

I noticed a few hives again a little after I woke up so they gave me more Benadryl. My stomach didn't feel great but I still ate a bit for breakfast and pills down. Nothing special for today, just letting the chemo do its thing and keeping up with the rest of the medication. Dr. Burt said I'll probably be neutropenic tomorrow or the next day. It varies for everyone, so we'll have to see how it goes. They're keeping me on Benadryl regularly since the hives seem to crop up pretty regularly from the Campath left in my system. Its half-life is really long, so it can be expected to continue for a while.

A bit later, I started to feel flush and it felt like my heart rate picked up a bit. I still felt pretty okay, but Amy came by again to check in and they did an EKG, taking every precaution possible. It all went fine and I just relaxed and it all passed. That was the only real excitement for the day. They stopped Mesna and slowed IV fluids, and I actually got detached from the pump for a few hours. Tomorrow I'll get the stem cell infusion in the morning, then I just stay clean, healthy, and wait for it to engraft and my new immune system to grow.

Wednesday, August 24, 2011

Day -2

The nurse last night felt more comfortable with me skipping Ambian for the night because of everything that happened that day, but I still slept pretty well. The hives went away by the middle of the night and I was just left with some small rashes in the morning, which weren't bothersome. My stomach was a bit upset for breakfast so I didn't eat a lot, but I took all the pills I needed to and they stayed down. One of the allergy doctors came by early just to follow up and answer any questions. A different allergy doctor came by and explained the skin test they were going to do. It turned out that Dr. Burt had decided against worrying about it for now so they cancelled the test.

Dr. Burt decided to just give the Cytoxan as scheduled, not worrying about replacing the last Campath dose, and have that be the last of the chemo. He said it will still be enough, and they are content with using different antibiotics to cover the one they haven't tested for yet. He's the boss, so no argument here.

They gave the premeds and Cytoxan and that went pretty well. I noticed a couple of hives about halfway through the infusion so the nurse stopped it and paged Amy just to be on the safe side. They didn't spread much and I didn't feel any other symptoms. The allergists said it was possible they would come and go, so it was decided to just be that and they restarted the Cytoxan after making sure the hives didn't spread.

I got a dose of Marinol shortly after Cytoxan finished. I started to feel really out of it, basically like I was high, a bit later, and this was well after the effects of the Cytoxan premeds wore off. Amy came by and said it was probably from the Marinol. It may not have been working as much on nausea so those could have been its other effects. It didn't take too long to wear off, and I ate really well afterwards. Definitely the best reaction I've had to anything they've given me so far.

My stomach hasn't been feeling as well since the Marinol, but I got some more food and pills down. It's finally been hard keeping track of everything they've changed through the haze of the last few days. They have me on Vancomycin and Aztreonam still, and had given me a dose of Zolsyn and Tobramycin but discontinued those. I'll ask for clarification in the morning. Regardless, I'm still on plenty of prophylactic medication as my counts and immune system really start to go down. No chemo tomorrow, just the prophylactics and anti-rejection meds. That doesn't mean I won't end up stirring up some excitement, though, the way things have gone so far.

Tuesday, August 23, 2011

Day -3

I forgot to mention they gave me methylprednisolone after I woke up from the Demerol yesterday. After everything calmed down, I felt really good. Got a great night of sleep, and had a pretty good breakfast. The Marinol seems to help a good bit. Dr. Burt decided to start Cyclosporine and Cellcept, two anti-rejection drugs, today rather than tomorrow. The Cytoxan and premeds went fine again, and I still felt pretty good.

They gave Benadryl, Tylenol, and an extra steroid, I think methylprednisolone again, for premeds half an hour before. I stuck with saltine crackers as a snack to be on the safe side. They had Demerol ready in case, and some other drugs. I was mistaken yesterday about the Campath due to the side effects and the haze from all the drugs. It ran for 2 hours, not 1. I got through that perfectly fine, no symptoms. About 10 or 15 minutes after the Campath finished, I slowly started to get hives. It slowly got worse, and I started getting a sore throat, swollen tongue, tightened throat, tremors, and shortened breaths. They paged Dr. Burt and his nurse, Amy, and called in the attending allergist, and ended up giving me Hydrocortisone, more Benadryl, and Pepcid, to block histamine 2 receptors to make for certain the reaction would stop. Dr. Burt and Amy stayed until things started improving, and it took about 10 minutes. They gave another antibiotic, Tobramycin, as well.They made sure to get an Epipen and anything else bedside just in case. Dr. Burt has his nurse's pages about me forwarded to him, and said to call at any time overnight if anything changes.

They're holding Campath tomorrow. No word about what they'll do in place of it yet. They want to test me for another antibiotic they could ideally add, unrelated to the allergy piece, for another prophylactic measure. I'm allergic to Cefzil and the antibiotic is similar to Cephalosporin so they want to do a skin test and ramp it up to see how it would go. All of the stuff they've given me today, though, could interfere with a possible reaction to it and make the negative (conclusively indicating I'm not allergic) part of the test less certain. But, if I still reacted with a rash after all of this, it would definitely mean I'm allergic. If I can't have that one, there are others that can be used in its place.

A few hours after the major drugs for the major reaction wore off a bit, I slowly started to get more hives. The allergist said they can come and go and didn't want to give more Benadryl hoping for the sake of the antibiotic test, but Dr. Burt said to give more Benadryl, this time orally. It's helping a bit and nothing has gotten worse. They told the nurse to give me the Epipen if anything aside from hives occur. No issues with nausea today. The plan is to do everything else as normal tonight, and keep an eye out for any further of a reaction. I feel a little itchy now but it's definitely tolerable.

The reaction I had yesterday could have been part allergic, and it would only have gotten like this after my body had been exposed to Campath before. All of the extra drugs they gave me yesterday may have masked more of the reaction, too. I think I prefer today's reaction compared to yesterday's. We'll see how things go the rest of the night. My door is staying open and I'm right across from the nurses' station, and they'll be in throughout the night as usual. I'll see Dr. Burt in the morning and find out the new plan. This shouldn't mess up the transplant process, so they should be able to get it done one way or another.

Monday, August 22, 2011

Day -4

I took another Ambian and got an okay night's sleep. I woke up and vomited a few hours after I fell asleep, likely from the Cytoxin, so they gave me more Zofran and that took care of things. My electrolytes were a bit low, which is pretty normal for the transplant process, so they hung Magnesium and Potassium. No real changes in my blood counts at that point.

Same deal with the Ativan, Zofran, Decadron, and Cytoxan. That went by easily. A bit after Cytoxan finished, I ate half a sandwich before the Campath started, which ran for an hour. They gave me Benadryl and Tylenol half an hour before starting it. The Benadryl didn't knock me out, surprisingly, and it was double the dose I'm used to. They gave me more Lasix around that time. While the Campath was finishing up, I started becoming nauseous and vomited the snack. While the nurse was getting Compazine, another antiemetic that makes you a bit drowsy, and I vomited again. Compazine still wasn't enough and the nausea and vomiting persisted, so they gave me more Ativan. I was shaking and in pain all over, by that point, so they got me some heat packs and Demerol, a narcotic analgesic, which finally knocked me out. I think I was out for almost 2 hours and I felt so much better once I woke up.

I just took it easy after that, sipping on ice and water. After that stayed down, I nibbled on some saltine crackers and just stuck with that and am feeling alright. I just got more Lasix and the nurse hung another bag of Potassium. I've got the slew of antibiotics to take, and they gave me Marinol to try since marijuana relieved nausea for me. I'll take an Ambian in a bit and get ready for round 2 of fun tomorrow. Just two more days of Cytoxan and Campath. Hopefully, since we know how today went, they can be prepared for everything tomorrow if it goes similarly. I'll ask Dr. Burt in the morning.

Sunday, August 21, 2011

Day -5

I asked for an Ambian, which is essentially routine for the patients here, so I could get decent sleep with the fluids they started, blood draw, vitals, and EKG they did overnight. They started Mesna at 8:00 to prevent hemorrhagic cystitis for the first premed, and it will run continually until the Cytoxan is out of my system. They started Ativan, Zofran, and Decadron, at 9:30. Ativan for anti-anxiety, Zofran for nausea, and Decadron for another antiemetic which augments the effect of Zofran to essentially make it stronger.

I started to feel a bit loopy from the Ativan a few minutes after, so they had me stay in the bed until we saw how I'd handle it. It didn't get any worse so they let me get up on my own. Dr. Burt signed off on the EKG and they hung Cytoxan a little after 10:00, which ran for 2 hours. It went fine and the 2 hours flew by. Still not feeling any side effects from it. A little bit later, they gave me Lasix to help flush everything out. I had to pee a lot for the next 3 hours or so, then it started to wear off a bit. My heart rate has been elevated so they lowered the next dose a bit.

They gave me Hibiclens to use daily while showering. It's very good at preventing infection even after you wash it off. The isolation floor is kept very dry, and a chemo side effect can be dry skin, so they gave me some different lotions to use. More Cytoxin tomorrow with the same premeds. I'll get Campath, another chemo, tomorrow, as well, with Benadryl and Tylenol for premeds for that.

Saturday, August 20, 2011

Day -6

Again, nothing too exciting today. One of the physical therapists made it to me today. She went over some exercises to do, and said to walk for a bit a couple times a day, and use the exercise bike, and just get out of bed and do anything I can on bad days. They'll come by later in the week to check in.

The Fludarabine went fine again. They moved me down a floor to the isolation rooms after dinner, which is where the rest of Dr. Burt's patients are. They did another VRE swab since I changed rooms. The nurse went over the precautions I'll start taking as my immune system weakens. Basically wash your hands before and after you do anything.

They'll draw blood, do an EKG, and start IV fluids overnight in preparation for Cytoxan. The EKG is to get a baseline because Cytoxan can affect the heart. They'll give me Cytoxan at 10AM and premeds half an hour before. Cytoxan can cause kidney problems so they'll give Lasix, a diuretic, along with the fluids to keep everything flushing out. I'll go into more details tomorrow.

Friday, August 19, 2011

Day -7

Nothing exciting today. I slept alright once the nurse unplugged the bed for me. It automatically inflates/deflates based on pressure to prevent pressure ulcers (bedsores), and you can't turn that feature off (first world problems), but that's not something I have to worry about. I guess you're even less prone to pressure ulcers if the bed keeps you awake, too. Talk about engineering.

I took iron and one of the antibiotics this morning on an empty stomach, since they brought it pretty early, and ended up throwing up. No nausea since, though. Dr. Craig and Dr. Burt came by to check in. Dr. Burt said to just stop the iron to simplify things since it's pretty insignificant at this point. They put me down for physical therapy for some extra exercise but they're already overbooked. I don't think anyone turns down the offer, so it may be a few days before they get to me. I'll just do what I can on my own for now.

Same story with the Zofran and Fludarabine as yesterday. Haven't felt a thing. Still on the general diet, and a room hasn't opened up on the isolation floor. They're hoping one will tomorrow. I've still been feeling pretty well Crohn's-wise, so it looks like one more easy day tomorrow with Fludarabine and then I'll start Cytoxin on Sunday.

Thursday, August 18, 2011

Conditioning, Day -8

I got my head shaved yesterday (for free. thank you, Scruples). I'm donating what I could to Locks of Love.





I went to Viand for dinner and got a delicious filet, and flourless chocolate cake with caramel ice cream for dessert. Yes, it was better than it sounds.

I checked in at 7:30 this morning, and just waited a bit until someone took me to my room. I'm not on the isolation floor yet. I'm one floor up where they still have most of the patients who are receiving chemo for whatever reason, and I would be able to stay here for the duration of the transplant if need be, so they'll move me before I'm really immunocompromised within a few days when a room opens up. The room I'm in is still really nice. Nice TV and a pretty good view. I couldn't get to the inputs to hook up my Xbox, so they brought in another TV and an extension cord/power strip I could use for it. Seriously? Everyone here really is too nice.

They drew blood for labs to get a baseline and check kidney and liver function before starting the chemo, Fludarabine, to make sure it would go through fine. One of the transplant nurses came by and went over most of the specifics of how things will go until the stem cells are infused. They're keeping me on a general diet for now and we'll deal with nausea preventing me from eating enough if the issue arises.

They gave me Zofran for nausea half an hour before starting the Fludarabine. It's usually one of the more well tolerated chemos, and it ran for just half an hour. I haven't noticed a single side effect yet, and my dinner went down perfectly fine afterwards. I'll get Fludarabine for 2 more days, so that shouldn't be too bad, and I just started on Cipro, Flagyl, and Acyclovir prophylactically. They'll draw blood sometime overnight so Dr. Burt has the results first thing in the morning when he comes by to check in. So far so good.

Monday, August 15, 2011

PICC Line Placement

I had to wait about an hour before they were ready for me. They cleaned my right arm very thoroughly and then the doctor came in to do an ultrasound to find the right vein. He gave a shot of local anesthesia and I barely felt anything after that. The wire went in on the inside of the bicep. It was a bit strange to feel the catheter going in, but there wasn't any pain. The doctor took images while inserting the line to make sure it followed the vein and it was where he wanted it, and he was done after about 20-30 minutes from when I got on the table. I don't need to use the lines until Thursday so they cleaned and closed off the three lumens and put a sleeve over it to keep it out of the way. My arm is still sore, but it's not very restrictive.

Just two more days! I'm getting my head shaved on Wednesday then deciding what I want to do for my last meal out.

Thursday, August 11, 2011

Small Delay

It turns out the cord blood is still being processed and won't ship until Wednesday, the 17th. Now I'll be admitted and start chemo on the 18th. I think the reason why they won't start before having the cord blood is because they don't want to do the chemo conditioning and risk the cord blood not getting there in time due to whatever reason. I'll be discharged between September 9th and 13th depending on how quickly I engraft with the cord blood and recover.

Monday, August 8, 2011

One More Week

I'm still doing really well. I finished the antibiotics and did the Cimzia injection on Thursday. It should help for about a week more, right up until the transplant starts. I went to the Shedd Aquarium (skip it if you've been to a good aquarium before), Lincoln Park Zoo (great scenery at the park plus it's free), Adler Planetarium (great, especially if you like astronomy/science), Too Much Light Makes the Baby Go Blind (amazing art/comedy show, 30 plays in 60 minutes, a must see), and the Museum of Science and Industry (awesome - tons of interesting exhibits) in the last week.

I'll get the PICC line placed on Monday, get my head shaved, then decide where I want to go for my last meal out. I'll be admitted the next morning, and the chemo will start the day after. I'll post the next update after the PICC line is placed.

Monday, August 1, 2011

Still Doing Well

Just a quick update. I'm still feeling really good, probably the best I have this year. I'll be done with the antibiotics on Wednesday or Thursday, and I'll do Cimzia on Thursday unless Dr. Craig or Dr. Burt say not to when I get in touch with them tomorrow. Just over 2 weeks left until the transplant so I'll be doing tourist things to see as much of Chicago as I can before then.