Day 0

Greetings and salutations loved ones! (Karen here again)

Well, it is Day 0! The Transplant went off without a hitch. (I am not a fluids and ooze kind of person, but for those of you that are, boy was it a cool day. The Stem Cells looked an awful lot like dark colored Campbell's Tomato Soup). (Ugh!!) The transfusion took about an hour. We had a chaplain come in a few minutes before and say a few prayers and a few blessings. She was no Father Carl, but it was nice and simple.

I wrote yesterday that Tony has been having some fevers. They come and go as the Tylenol works its magic and then fades away. Its hard because he has tremors and they really hit him hard. They take a lot of energy! But the nurses are great and have the ability to give him many different meds to try to alleviate all the discomfort.

Everything else is looking good. We are hoping the fevers will fade completely in the next 24 hours. Tony and I will keep you posted! When he is feeling more energetic, then he'll help me post the pics of the transplant.  

Day -2 & -1

Day -2 & -1:

This is Karen checking in today. Tony has not had the greatest of experiences these last couple of days. His 2^nd kind of chemo was hard on his sinuses. Sunday evening he started to have bad pressure in his head and it escalated to a 7 out of 10 on the pain scale. Monday saw him with less pain but unable to rest and some nausea. Monday night was restful but Tony started his anti-rejection drugs Tuesday and it has not been pretty. He is getting a drug called Prograf, and in the interest of making everyone feel like they are here – There is a sign as you enter his room telling the nurses “PROGRAF CAN ONLY BE ADMINISTERED THROUGH THE WHITE PORT – IF ADMINISTERED THROUGH ANY OTHER COLOR, THE PORT IS CONTAMINATED FOREVER!” I especially like the emphasis on forever! Basically, this is a drug that needs care. Tony is also getting another drug called ATG and apparently this is the cause of his terrible day!

He is suffering from chills, fever, muscle spasms, pain, nausea... (Right now he has a fever of 102.8 and he has 5 ice packs positioned in various places on his body.) These are all expected side effects, but the fever is worrying.

Tomorrow is DAY 0! As things stand now, nothing going on today will stop the transplant. As I said above, while stinky for Tony, these are all expected side-effects, so GAME ON! We'll post again tomorrow!

Day -5 - 4 and Day -3

Just a update for today. I have competed all 16 doses of the Busulfan and have begun the second regimen of chemo- Cyclophosphamide. This one is a bit more of a doozy and should knock off the remainder of my immune system. Yeah! That is not even the fun part, the fun has to do with over 1040 ml of chemo and fluids that are going through me every hour. I should just set up shop in the bathroom for the next 2 nights. I can't go more that a ½ hour without a pee break. Other than that, I am handling things OK, I get a bit more tired everyday and it takes longer to recover but as I have been saying, if that is the worst of the pre-transplant stuff then I am lucky. Next step-- the transplant!!! (but that's still 3 days away).  

Shower prep for a transplant patient

As you can see everything takes a bit more time. As you might tell showering is a hole lot of fun.

Day -7 and Day -6

This has been a busy 2 days- even though it will not sound like much to you all as you read on here. Anyway, we started the first of the 2 chemo regiments gearing up for the transplant. This first chemo is called Busulfan and according to the literature I was given it “is very strong”. In fact, it goes on to explain how the drug works “Busulfan harms cancer cells causing their death” (I am not making this up) so one would expect that I should feel like crap. Well, I am happy to say that has not been the case. I have had bouts of extreme fatigue, it just kind of comes on me. One minute I am sitting up reading something and the next I need to close my eyes and lay down (funny isn't it?). Even with the fatigue and, trying to keep in mind it is still early in this regiment, I can say things are going better than expected. I will continue to get the Busulfan for the next 2 days- for a total of 4 doses. Just to clarify a single does is a 2 hour IV drip repeated every 6 hours and we get to repeat that for a total of 4 doses over 4 days. As I write this I have just finished bag number 7 (almost half way). So things are going well and I am pretty much settled in (Karen brought in Diet Pepsi, and that helps). I had hoped to have a routine by now but there are just so many variables that I just can't be sure what is happening when, I am sure we will figure it all out in time.

After this I move on to chemo number 2 but I will leave that for another post.  

Self Portrait (2/7/12)

Some people been asking so here's a new self portrait on my first day at the mayo clinic hospital.

Here we go!

It is finally admit day. I am officially checked into the Mayo hospital. My day started with more insurance dram as we learned yesterday afternoon that they had deemed this treatment experimental (sound familiar?). I was scheduled to check in for my port placement surgery at 5:30AM, but with the insurance news, we had to postpone and wait for the insurance people to get in the office, so that Dr. S can talk with them and try and set things straight. The insurance issues ended up not being too much of a hassle (for now) but it really did add to our stress level at a time when we could do with less. I ended up with the surgery happening at 9am and was in my room by 11:30 so it was not that much of a delay. The port went in without any issues so there is not much to say about that, I am a bit achy but that is to be expected with any surgery. All the activity gets into full motion tomorrow with my first round of chemo, so for now I am just getting comfy in my new home and with my new port. I can add in that the room is pretty good; lots of space and a distant view of the McDowell mountains. I will save the details regarding the chemo for tomorrow's post as I will then be into it and hopefully have a better understanding of what's happening before I write about it.

I also wanted to take a second to add another THANK YOU to everyone- your well wishes, meals, and emails have been great.