A quick update for today. Not a ton of energy. I've just gotta say that the IV portion of the high dose is NO JOKE! It put a beating on me. Pukie all night Monday, Tuesday and then a little on Wed. Today, no pukie and I've eaten a little bit. Couple of good friends have popped in on us with fun news or fun games for my boredom. Much appreciated y'all. Sorry for the show I put on for you last night Charles. Ugh.
Today is a better day- just very sluggish and poison like. Typical chemo crap I've bitched about a hundred times- I won't waste your time here. Just popping in to say all is well, and that I have just been touched in so many ways with the support our friends and family have been providing. Love y'all.
The Disco Biscuits have arrived. Pictured are my 15 doses of Busulfan. I'll take this every 6 hours starting tonight at 6 all the way through Monday AM at 6. After the 6:00 am dose on Mondayl, I'll head up to the clinic for I believe 3 days of liquid yuck.
Each dose has its own seperate bottle. Each bottle contains 6 capsules with 7 small tablets inside of them.
The doc says this is the strong stuff that will wipe my bone marrow out. However, incidence of nausea is very low with this, so hopefully it won't be too rough other than the fatigue and lack of hunger. Oh, and the metal taste in my mouth.
I'm pretty much scared shitless by this stuff, but I'll do whatever it takes. Hopefully, this will do what it is supposed to do, and I won't have to mess with it again.
I've almost broken down like 3 times today with all the support we have been getting. Whether it is donating platelets on my behalf, sending group get well cards or whatever. Its so touching. I really can't believe it sometimes.
I'll sign off for now and give an update how the nasty is going in a couple of days.
Well, house arrest, as I call it, officially started today. It is 9:24 AM, and I'm already getting fidgety. Guess I'll just have to get used to it. I took the test dose of the Busulfan yesterday. A long day but no big deal. The Busulfan is simply a pill. It is a clear capsule, with like 10 little tablets stacked up. The nurse came and got a blood draw from me about every 1/2 hour. There are tests run on the blood to see how quickly I metabolize the drug. Once they determine that, they will adjust my dosage accordingly. I'll get a pic and post it up when I get the official doseages to bring home and start taking tomorrow.
I guess the good news with the house arrest is that for the first 21 days or so after the transplant, I'll have to go to the clinic every day at 7AM and hang around for fluids, plateslets, etc until 4PM. So, I'm at least getting to get out of the house. Kind of like a full time job I guess.
I feel kind of funny linking this- and most of you probably already know about it, but I will be in need of platelets over the next couple of months. Melissa has organized a sort of a drive with the blood clinic across the hall from my clinic. Here is the link to the BTB site with all the details. http://blog.btbfitness.com/2008/07/got-platelets-w.html If you live in the area, Clint is providing a taco and free margarita over at FROGS Cantina. There is no guarantee I will receive your platelets, but nevertheless, you would be helping out a fellow patient at the clinic who is not so lucky as me and doesn't have as good a support network to get donations from. Even if you don't live in the area, you should consider platelet donations from time to time. One fact about platelets that I didn't know is that the shelf life for platelets is only 5 days. They cannot be frozen like other blood and blood products. So, there is a need for a constant fresh supply.
So, a feeling I am having that I'm sure many of you are familiar with. I feel like a kid at six flags trying to get all the rides in before the park closes. I'll officially be on "house arrest" starting next Tuesday- except without the ankle bracelet. So, as a result of that, I'm hitting up all my favorite restaurants, having a cocktail or two, taking care of some business, etc. Kind of like life of riley. I like it.
Tuesday will mark the first day of the high dose chemo- at least in my mind. Tuesday is the test dose day for one of the nasties I'll be eating up. I have to go in at 7AM, take a dose and then sit and wait. They will be taking blood from me every 1/2 hour to hour to test and see how my body is metabolizing the drug. A "dose" will then be adjusted specifically to my body chemistry. Pretty cool, actually. Oh, forgot to mention no food after 6AM for the rest of that day.
As weird as this sounds, I'm kind of excited about the high dose chemo, as most of it will be a type I have not done before. Busulfan is an oral chemotherapy drug. I'll be taking this every six hours for like 3 days, then I'll go in for a couple of days of an IV type of chemo which I have had before, and then some more of the oral stuff. I'm cool with taking it orally- I don't like being hooked up to a pump all the time. I may be begging for the IV stuff that I am used to before it is all over with, but I'm just happy about something different on the horizon.
Sooooo, the countdown is on, for the 8/1 transplant. I'll keep everyone updated on how the high dose is going, and all that good stuff. Probably post up on Tuesday night after test dose day.
Also, I just wanted to thank everyone for all the support and love being shown to Melissa and I in person as well as on this blog. It means so much to us. It would be really, really hard without such a great network of friends and family. Sometimes, on the rough days, I'll pull up this site and go back through comments from folks. It always seems to make me feel better knowing you guys are out there pulling for us and thinking about us.
This will all be over soon, and we'll owe you all a big debt of gratitude. Karma will help me pay it off- for each and every one of you.
Hello all. A few updates- we received the results from my PET scan- and got the news we needed to hear. The disesase has "stabilized"- the medical term on the report. Meaning continued shrinkage or no growth. YAY! This means no more ICE chemo for sure, and we are moving forward as scheduled with the rest of the transplant process.
I was in yesterday for a battery of tests, including my favorite- the bone marrow biopsy. The process was much smoother and much less painful than the one last year. I was given some good drugs and lots of numbing agent. No big whoop. Only unexpected thing was that they did one on each hip- so I got a double dose.
From here, I have a meeting with the doc next week and such getting ready for the hammer to drop.
So, some time ago I promised to put up a pic of my bald ass head and my Cyborg Port. I guess I forgot about that. Being a man of my word, here you go. Note, the eyebrows are almost gone. Not too happy about that. Everything else is fine by me. No hair to mess with, no nose hair to keep trimmed and shaving is about a once every 8-10 day affair. I'm enjoying the bald thing so much, I may keep that style for a bit after all this is said and done. Melissa says it makes me look "tough".
Sorry it has been so long since the last post. I am not trying to keep anyone out of the loop. There has just not been much to report since my last bit of news. Mostly, I have been both bored and frustrated. Bored from not being able to get out much, and frustrated from not being able to last long when I do have the motivation to do anything. For example, one of the most important things to me is my job. By the time I get up, get ready and drive to the office, I've got about 1.5-2 hours of good cognitive time. After that, the tiredness sets in. I'm better off just working from home- which is what I am mostly doing. I'm so excited to get this transplant done and get back to it!!!!
I still have time off until my date with Ms Bisulfan (high dose chemo), but not time off from the grind. Monday, I will be getting a PET scan. This time, it is only of my head and neck. Previously, it had been full body. I am assuming this is because the doc is confident everything in my chest has cleared and there was just one last spot in my neck from last time. Hopefully, this scan will show good response. I am expecting it will. I also have a bone marrow biopsy on Thursday of next week I believe. This is just standard protocol for pre-transplant tests. I have had no prior bone marrow infestation, so I expect this will be fine as well. I also have a BMT education day in the clinic as well. This is to tell us what to expect, what I can and can't be exposed to, etc. I'll keep this site updated as things progress. In the meantime, I am going to enjoy my holiday. M & I have driven up to TN to go to a friend's family BBQ. I believe they put a pig in the ground. Should be awesome. Cheers!
PS: Another pic below of the Cyborg Port. It should be clear, but the white tube goes under my skin like a splinter. It is threaded up to my collar bone, where it goes over the bone, and then dips behind it and into my jugular vein. This is why most of what I do for working out is a no-no. Not because of the way I feel, but because this thing can be dislodged- and I guess I could bleed out or something. Not sure what happens. I'm not gonna find out.
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