Winning

Here is what prednisone does. JoJo couldn't sleep so she was up Tuesday night from 2-5AM going through 3 grocery bags of old printouts from clinic and hospital visits that need to go to shredding and recycling. That took her to the garage where she prepped two bins and a cart of recycling and moved those to the curb. I think she came to bed for awhile, but was then back up at 6:30 to help get Kelly and the kids off to work, school and daycare. She has been helping them out the door for a week or so and it gets the day off to a nice start for all. It would be nice if she could sleep more soundly, but the prednisone just isn't going to allow it. The dose is down to 100mg a day and will reduce to 80 on Friday. If all goes according to plan, she will be pred free by mid May.

JoJo is feeling better each day. This latest round of graft vs host disease has really sapped her strength along with the bout of low blood sugar. She was frustrated and discouraged, but we had a clinic appointment on Monday of this week and Dr. Ustun was able to answer her questions and offer encouragement. As he told her, now is not the time to give up. She has had some unexpected obstacles, such as the GVHD and the transformation of her CLL into an aggressive cancer, but the goal was to cure her, and every indicator says that has been accomplished.

We have always operated with the understanding that CLL could not be cured, just suppressed to very low levels. However, in the words of Dr. Ustun, he is very optimistic that we have seen the last of the CLL. He also is confident that the diffuse large B-cell lymphoma is gone, although he would like to do one more round of ofatumumab and then another bone marrow biopsy in June to confirm. There was no evidence of either cancer in the scans and bilateral biopsy that was done last week.

I am cautious of and not prone to hyperbole, but this has to fall under the category of miraculous. It's a little odd. We aren't jumping up and down excited, probably because of the struggles of dealing with the GVHD. Last week was one of the hardest weeks we have had in a long long time. Plus, I am not sure we really believe it. Until we get the June biopsy out of the way, we're going to reserve judgment.

Or, it could be that one can never really go back to the blissfully ignorant euphoria and excitement that they were capable of prior to being afflicted with this kind of misfortune. Mostly though, we are just tired. It has been a long struggle and often, we were just hanging on. But now, there are hints that a future may be a part of the plan. In May, our youngest will graduate from college, JoAnne will be returning to a more mainstream life and our daughter will have most of the uncertainty with her divorce resolved.

I am going to have to think about these developments for awhile before I put keyboard to blog. In the meantime, there are a few things we have learned along the way. When talking about JoJo and her cancer, I frequently refer to we. I don't have cancer. I really mean her. It's just that we have become so attached at the hip, I feel like we. It is hard for me to imagine being this close to someone so often and still getting along. But we do.

When JoJo first entered the hospital for the transplant, she spent several days selecting items to personalize the room she would be confined to for 21-28 days. She brought tchotchkes, bookshelves, pictures, tchotchkes crafts, books, tchotchkes, et al. There was moving in day and going home day. There was lots of stuff. What we have learned in this process is that JoJo can endure any hospitalization with an iPhone, an iPad and one clean pair of panties per day. That's it. No more, no less.

We have learned that JoJo has no phobias about medical tests or procedures. Today she had a head MRI. She lies on a sliding platform. They put headphones on her ears, position some padding and fasten a cage around her head that keeps her from moving. Then they slide her into the tube and she has to lie still for 30 minutes while the very noisy machine shakes and vibrates. She had some Norah Jones music piped in to cut the noise and took a short nap. When the test was complete, she came out and told the tech that it was a restful experience.  "Really?" she said. "That doesn't happen very often. Mostly the patients just scream that they want out!" I am looking forward to my first MRI someday knowing full well that I will need a boatload of tranquilizers to control my claustrophobia. But then when I am fully positioned in the tube, and they ask me how I am doing, I will tell them, "Hmm. OK. Now I know what it feels like to be a penis." I bet they have never heard that one before.

Over at despair.com they have a contest where they post a picture and encourage viewers to create a title and caption that keeps within the somewhat cynical atmosphere they play to. The most recent is:

My first entry: GRAVITY Nothing good comes to the student who skips science class on Isaac Newton Day. And the other was SERENITY Accept what you can't control until you make a stupid decision. Then accept calamity.

Things are looking up. JoAnne slept from 7:30 PM to 5 AM this morning then got up and sifted through a few crates of stuff. And she does it quietly so as not to wake me. What a sweetheart.

Keep the faith