My family and I have had a wonderful weekend visiting with family who are giving us much love and support. Larry’s brother, Jerry, flew up from Atlanta to be with us a few days, and we are so grateful.
The previous three weeks consisted of very rigorous testing and giving enough blood between Kellie and I to float a cruise ship. Yesterday we
met with the head research oncologist at Johns Hopkins to get the results of all those tests and to sign consent forms for the transplant. The great news is that I apparently aced all the tests, and the doctor told us that even though my chronological age is 64, that I have the physiology of someone who is forty years old. Well, I laughed out loud at that statement, thinking that he was just being flattering or trying to make me feel good. But he assured me that he was very serious. Apparently I am in great physical condition in spite of the leukemia, and that is a big plus for me.
And so after all of this, everything will now proceed forward. He told us that all the data shows that the time is right and it couldn’t be a more perfect time to do this. I will be in a clinical trial of 300 people across the U.S. receiving half match transplants. Hopkins has been doing this with great success for several years, but other hospitals around the country are just really starting. I gave permission for them to monitor me closely for the next few years and to share my data with other research hospitals, including the National Institutes of Health, so that others might benefit from anything they may learn from my
disease and my transplant. My leukemia is SO rare that I feel it’s necessary for them to find out as much as they can from me.
Tomorrow I will get the catheter implanted into my chest, and on Thursday I will be admitted to Hopkins. I packed two suitcases this morning; One for clothes and a smaller one with all the
electronics, IPad, Nook, MP3 player, etc. I’m also taking a sketchbook and watercolor pencils. I won’t be able to have any toxic materials
like oil paints. Hopefully I will have good days when I feel like doing things. I know there will be times when I’ll sleep a lot and won’t feel so well, but others have told me that keeping busy is
therapeutic. I’ve also been told that exercise is very important when I’m in the transplant ward, and doing laps around the halls with my mask on
and pulling my IV pole will definitely be helpful.
An art friend of mine sent me some very interesting information on “guided imagery” and
I plan to use that to get through some of the hard stuff. It’s similar to meditation, but can be modified for cancer patients to help speed up
healing and help reduce pain and nausea. It’s been proven that it works. I have been practicing while listening to some of my favorite soothing music. And thank you Anna Pat (in New Mexico) for the art websites info. I will definitely be checking them out.
Kellie seems to be holding up okay, and she will be gearing up for her part in all this soon. The approximate date for her bone marrow to be
taken is May 5. She is a trooper and I am so blessed to have her.
We have set up SKYPE on our computers so that maybe we can get that going when I’m in the hospital so our little Michael can see his Grammy
from time to time. We have tried to prepare him for this, but it’s hard for the little guy to realize how long this will take. I will certainly lose my hair and have bought a wig and three hats. Michael calls my wig “Grammy’s other hair”. I even let him try it on and he proceeded to run around my house laughing hysterically. It was a sight to see.
I am as ready as anyone can be for this and I am focused like a laser beam on making it through. With all the prayers and support I have
received from family and friends, I feel so strong physically and mentally. As they used to say at NASA, all systems are go. The next update you’ll get will be from my hospital room.