Deep breath

I awoke early this morning. No real reason. I was still tired but I just felt I needed to get moving. I would have liked to sleep in but my body decided otherwise. I snuck out of bed and collected some needed items for the day. As I left Gen and Avi’s house I grabbed an umbrella which I would guess I have only used twice in my life. In about two minutes from the house I was transported into a water park style downpour. It was almost unreal. I have been in some heavy rains but this was impressive even with the last minute umbrella I was dripping wet.

I only had to walk a few miles and after about twenty minutes the rain subsided to a nice Scottish lowland drizzle. I reached the cancer center and dropped off the pass Brooke and Liam used for the science center. Next I headed south for an eye appointment which took a bit longer than expected but was tolerable.

I met Brooke and the boys for a little lunch before heading back to the cancer center for my first round of immunizations. As many of you know or remember when you undergo a full stem cell transplant you loose your acquired immunities. This means I get to go through all my childhood shots for a second time (I wonder if Jenny McCarthy thinks I am at risk for autism).

Liam and Finn really wanted to see this inflicted pain. From the moment I told Liam about this he thought it was hilarious because he thinks it is a torture I put him through just for the heck of it. Unlike folks who can justify not getting immunized I was giddy with excitement to do it because I really want some protection from those who feel they don’t need them but have never actually seen the horror they bring. Because we were late at lunch I had to take car 2 go which couldn’t fit the kids while Brooke went to collect our stuff.

The shots went fine. A little sore but now with some growing resistance to some of the dangerous organisms of the world. The family showed up just in time for the conference with the team. Dr Lee ran the conference which was a recap of mostly what I knew already. My labs look okay except for the kidney but nothing indicates that we are permanently damaging them. I am hemolysing my blood likely from the dapsone which I stopped yesterday. The best news was that my bone marrow looks to be 100 percent my donor and 0 percent mine. There was no sign of the dreaded missing short arm on chromosome 7. This does not truly indicate a cure but it is extremely reassuring.

The expected but not thrilling news was that the overall feeling about the liver gvhd is that it isn’t just going to go away and that likely I will need years if not lifelong immunosuppression. The obvious big question that poses for me is could I return to work. The party line was held that I probably could but that it was risky. I was able to control my sarcastic “ddduuuggghhh” and just respond that clearly I don’t want to get sick. Yet it was reassuring that they didn’t just outright say no.

We finished by signing some paperwork to agree to find out who my donor is. This does not assure that we will ever find out or meet my savior but it opens the door for her to agree. It is very possible she will not wish to meet me. I would admit if she said no I would completely understand and may even be relieved that I don’t have to meet someone else’s ideal which I do feel like I owe her no matter what.

After some heartfelt thanks we walked out of Seattle Cancer Care center for the first time not planning to return for any particular reason. That was an unexpected surprise. I was not convinced that day would roll around. It has though, an amazing milestone. I am by no means out of the cancer canyon but the view is a bit nicer up where I sit now.

We are now enjoying a wonderful night with aunt Val and uncle Alex ( per Liam “the greatest bread maker in the world”). We have already eaten more than our fair share of his bread and enjoyed their food. The boys have crashed out and we are laughing about life events. Wow what a day. From the rain of the early hours to the news of my year to the enjoyment of my boys and family. Life cannot be controlled, but what ever it lacks in control it clearly makes up for in excitement.

Sleep well for tomorrow will be uncontrollable. I wish for all it will be uncontrollable laughter and fun.

Head Up, Heart Strong. I need a cure.




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