Day 24
Not much new here. White counts are coming down as the effect of the Neupogen wears off, but they're still high enough for now. Reds are up a little today.
I'm sitting here in the hospital bed in the ATC getting my bags of magnesium sulfate and phoscarnet. I have about 2 more hours to go. Room service just came by and took my order for lunch.
Towards the end of the week they will give me a day "off." That just means that they send me out with a pump and a loose bag of magnesium to hook up myself rather than having to come in here and lay around for 4 hours. It will still be a break, though.
Dr. Khouri came by this morning. He was out Friday when he normally makes his rounds. He asked me all the usual questions about how I feel. I told him everything was fine.
Next Monday morning I get a full CT scan and bone marrow aspiration (affectionately known around here as a BMA) . From these they will get the first really good look at how the new cells are affecting the CLL.
To do the CT scan, they fill you full of barium, which tastes like chalk. You have to drink 3 BIG styrofoam cups of this stuff on an empty stomach. Umm, umm, umm, barium for breakfast. They flavor it to make it taste even worse. They save a fourth cupful for insertion in other ways. They then run you through a big machine shaped like a giant doughnut to take pictures of your internal regions. The scan will show enlarged, or not, lymph nodes in the chest and abdomen.
The bone marrow aspiration (BMA) is where they insert a long needle into your hip bone and draw out some bone marrow. Fortunately, they do deaden the area with a little Zylocain. Bone marrow looks just about like blood, by the way. The BMA will show the concentration of lymphocytes in the marrow. A normal level is about 8 to 20%. They will also see how many of those lymphocytes in the marrow are still affected by the CLL. There is likely to be some disease still showing since it will have been only 30 days since the transplant. I'll repeat the CT scan and BMA along with a PET scan before I leave in a couple of months.
I've visited the fitness center at the hotel each of the last several days. They have a fair amount of equipment and a few weights. You have to work at keeping your energy level up. You lay around here so much getting infustions that it's real easy to lose energy if you don't work at it.
Well, that's about it from sunny southeast Texas. 76 more days to go.
posted by Max @ 1:26 PM
4 comments
4 Comments:
Max & Lynda, We pray you will get a good report from you scan. Looks as if things are going as had been expected and that is great. Keep looking up as you count down the days. Herbert & Ann
Max - I had no idea that this process took this long and was this involved! I just thought that you showed up, got the transplant, took some anti-rejection pills and some blood tests and *presto* you were done! So much for my medical knowledge. Your courage and attitude are both impressive. Keep blogging! Get well and get back to Atlanta! Cheers, Rhys
Hey Max,
Kathy here, aka Ros-Scotts wife. I have been catching up on your progress. It is truly amazing what the body can endure. Sounds like things are going well and you'll be back home before you know it. You have been in our thoughts and prayers. My mom had myleodysplasia, a bone marrow disorder. I thought I was up on blood counts but you make an amatuer out of me! I wanted to let you know we were thinking of you all and praying for you as well. Keep up the positive attitude, it really is the key to a successful recovery.
Take care,
Ros/Kathy
Ok Max, you are making all of us feel just a little lazy since we all need to "work out" more than we do and have no excuses. You are truly an inspiration to us all...and I am praying for your scans and tests to go well.
Prayerfully yours,
Cathy
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