Friday, August 29, 2014

Hundred Day Holiday

Yesterday was the fiftieth day since my transplant. When I look back on what has transpired since January, I can't quite process it. I'll admit I am not in a place emotionally where I can talk about the cancer at all. It is very hard for me when anyone brings up anything to do with my recent health history, except for the recovery period from the transplant. There will be time to face that past, and I will need to take that time, but right now I need to put all my energy into my strengths.

Sometimes I worry that I will miss the opportunity to become a better person. When I'm full of fears and anxieties, counting the days and the limitations, I feel like I am turning my back on this incredible gift of the reminder that now is what we have, life is what it is, and my outlook is my choice. In this recovery I have even less control than I have ever had before, because I can't pursue my goals using nutrition and not pharmaceuticals. I have to accept these pharmaceutical drugs, and all the rules of the recovery process.

So I will embrace them. If I need to eat every five minutes right now, I'll just keep doing it, and I'll eat the things I am allowed to eat and feel so very grateful that I am not having trouble eating. If I need to ask everyone who comes into the house to wear a face mask, I will do that. If I need to drive to Boston weekly, then bi-weekly, then monthly, so be it.

There are a lot of small milestones in all of this. But one of the big ones is when I hit the hundred day mark. That is when they start tapering off the graft drugs, and this new immune system really becomes mine. Until that time, I have to be extra careful. For fifty more days. So I can revel in the fact that I have fifty days to focus on letting go, on reveling in the love around me, on feeling pretty good considering what I've been through. The doctors say everything looks terrific. Even problems they might expect me to have, I am not having. Even the small spot of graft vs. host disease that I did have is something they consider a good sign, because it means the new immune system is dominating and working.

The time to revel in this gorgeous late summer, letting my body become the dragon, fearing nothing and embracing everything, is now. So this is when I'll do it. On my hundred day vacation.

Thursday, August 21, 2014


The butterfly has flown from the hospital walls. But that's not the whole of the story, I'm learning. Here I am on day 43 post transplant, realizing how much is left to this process.

It's hard to be filling my body with drugs, to have to shun the sun, to not be able to prepare and eat foods the way I am used to; in general, to not be able to care for myself in the way that seems best to me. I am sleeping poorly, which is uncommon for me, and waking up dopey from the drugs I take to try to fall asleep.

But my boys are home, and there are lots of little milestones to shoot for. The weekly trips to Boston should only last a few more weeks before they become monthly. In October I will hit the 100 day mark. And someday this will be a full year behind me, and things will be back to normal.

This period of convalescence is confusing for me. For the most part, I feel really good. And yet, the restrictions get into my head. I feel more limited than I am because I know. I know I have to wait on the cessation of these medications to get my body back. I know I have to wait on the full transition to get my normal back. But in the meantime, my life is mostly mine. I have my books, my boys, my home. I have all my support people. I have everything I need.

I have to embrace this and find myself right here, intentionally. And as the days pass, I am finding it easier to do. This is real life.

Friday, August 8, 2014


When I found out the day of my original discharge that I would have to stay two more weeks, I thought my heart would explode. I was crawling out of my skin. Even as I could see that there was a serious medical situation, I was furious and felt trapped and angry.

The following Monday, I almost discharged myself against medical advice. It was the assurance of the doctors that the cure was working, and that early discharge could, and had, led to mortality, that kept me in.

But I still didn't know how to be here. I didn't know how to make it through these weeks within these four walls. I lashed out. I cried. I begged.

Then I shifted. I found a way to take my own advice. I asked for anti-depressants and mild sedatives. I asked for coloring books. I started to be able to read again. And I decided to choose to be here.

I am grateful that I have been here for the early post-transplant period. I will be going home soon, without needing regular transfusions, without dozens of visits to Boston. I have been safe and well-cared for by incredibly compassionate people who are doing everything in their power to make me comfortable. This is the best place for me to be right now.

A friend told me the other day that she imagined her heart as a bright sunny room with the windows open, and she was sweeping it out. For me, that metaphor is of a room where a butterfly was trapped, batting at the windows, frantic. Then I opened the windows and the butterfly flew out. I can be free here, by choosing to be here.

Friday, August 1, 2014

The Hardest Things

Usually, when things are really dark, I can comb the bottom for that shining gem to wrap in black cloth and then reveal at the end of the post. But right now, in midst of this battle with venal occlusive disorder (this one wasn't in the plans and it takes good three weeks to sort out - got this diagnosis the morning of  my dismissal so I now I am back in this bed in this nightmare of diarrhea and vomiting and pain,) all I've got is the Serenity Prayer. From AA. God grant me the wisdom to accept the things I cannot change, the strength to change the things I can, and the wisdom to know the difference.

If you know where I stand with God, this has to tell you I have reached the bottom. The adsolute nadir of things I cannot change. But there's power in that bottom place, too; I have to stay here as long as I need to and once I am not here anymore, it will be the hardest thing I have yet accomplished.