Friday, March 21, 2014

Way Down in The Mines

Like the pain of childbirth, forgotten until the next baby, there is a lot in the process of cancer treatment that I had put behind me, only to be rediscovered once I found myself back in thick of it. The biopsies, the PICC lines, the needle sticks.

The bills and lost wages.

After the distress of the diagnosis, I lifted my head up to embrace the gifts in what is to come, and then put my head down to focus on the work of illness and recovery. John dropped everything else to support me, to deal with the emotional and physical needs of two young children and a seriously ill, hospitalized, wife. Then, at some point, the stacks of envelopes started arriving: insurance claim denials and thousands of dollars in medical bills at a time, credit card bills for gas and groceries, rent, and utilities, with nothing on the revenue line because there's been no time to work. 

The marrow transplant will take place in Boston, where I will be in the hospital for at least a month. Following that is a recovery period of about a year during which time I will be severely immune-compromised and not able to leave the house without a mask and gloves. Already this year, John has missed two months of work, and there's plenty more disruption to come.

I remember the hollow, fearful feeling of these envelopes three years ago, and I remember all the help we received in getting through them. I spent the first night talking down the anxiety, reminding myself that we've been here before, that no one is going to let us starve or destroy our credit over this. I trust that we will surf this, and I'm sleeping well again, but I know we are going to need a lot of help to get through this year.

Some friends have set up a fundraising drive for us, for which we am very grateful. I struggled with the idea, but I have to admit that it will make a big difference and I know it is an easy way for others to contribute. We are so thankful for all that we have received, emotionally and physically; all the lovely meals and help with the kids and everything, but if you would like another avenue for helping us, check out

We'll never be able to sufficiently express our gratitude for all the love and support we have received; our only chance is to pay it forward at every opportunity.  Whether or not you can contribute to this campaign, know that we thank YOU.

Tuesday, March 11, 2014

Big Fat Now

There is a counselor here at the hospital, and she is pretty good. She is not always right, though.

Last time I was here, I got pretty sick. The sickest I've ever been, probably; genuinely, scarily sick. High fever, pneumonia, nothing responding to drugs, everyone drumming their fingers and waiting for my immune system to turn back on - this is the sort of thing that can go downhill fast in hospitals and everyone knows it. Even I got a little scared at one point, although once I discovered that Tylenol was going to make me feel better and not kill me, and safe in the knowledge that my white count would recover before I succumbed to the pneumonia, I put my energy into managing the actual moment-to-moment misery.

It was a dark time, though, and the counselor came to see me. She told me that when she was in her early twenties she was diagnosed with cancer and given a five percent chance to live. She did, clearly, but she spent long hours contemplating and coming to terms with the likely prospect of death, and I think she was encouraging me to do the same. Something in me felt that this was not the right approach for me at the time, but I had to stew on it for a while.

I went through a period during that stay, just a month ago, when I thought I was supposed to wrestle with all the suffering in the world. That I had to go among it in my mind, like a mental Jesus or Ghandi or Mother Theresa, and embrace it fully and fold it into doves and let it fly away. All the terrible things that could happen to me, or to anyone, I had to be fully prepared to accept completely and peacefully if they happened in five minutes. I had to be ready to lose everything.

Those thoughts weren't getting me anywhere. It felt impossible, and it brought me no peace. As terrifying as it would be to have the doctors tell you at 23 that you were likely to die, slowly and painfully, it isn't the same kind of scary as imagining what happens to the worlds of your young children and your husband if you are wrenched from their arms. No less alarming, but different. It didn't seem like it could possibly be healing for me to go deep into that thought.

It isn't. It came to me that I don't need to go deep into the prospect of suffering. This is not living in the present and it isn't living peacefully. Imagining all of the miseries of the world pouring through my front door isn't going to get me well. I am not Ghandi or Jesus or Mother Theresa, and I don't have to be. What I have to do is be okay with the reality that the suffering that I am experiencing is unpleasant; that's what makes it suffering. I can love that I am growing and learning from it without having to love having cancer. I can enjoy feeling good when I do, and not enjoy feeling bad when I don't. Death comes for us all; there is no reason to invite it to linger in one's mind, and certainly not to invite it over and over again. At least when you actually die it is a one-time thing. Only in your mind can you die over and over again, in every possible way, and experience everyone else's suffering once you do. Going there is not freedom.

So here I am in the Big Fat Now. Not the infinite possibilities, good or bad, that don't actually exist yet. Just me, sitting on a hospital bed, feeling pretty good at the moment and grateful that the doctors have decided I don't need 24 hour fluids and thus can be disconnected from my IV pump most of the time. Feeling grateful for an excellent multi-hour conversation with a friend who generously brought me lunch (although I have learned that if I order regular trays from the kitchen of the few semi-edible items on the menu that everyone feels much more relaxed, so I have a tuna sandwich and an apple here in the event of some future crisis). Feeling grateful that John is on his way with a tray of mini-quiches and more company. Feeling grateful that I have had so much time to read lately, time enough to read a whole novel yesterday. Feeling grateful for the friends that are around to chat by text during the day. Procrastinating doing scales on the banjo, just like home.

When I got home from the hospital after my last stay I was still pretty sick. I think they would have preferred to keep me, but I reached down inside myself and found the resources to put on the necessary show of eating, showering, dressing, and general dinking around that would convince them that I was sufficiently functional to leave. I knew that I had to get home to get any better, had to eat my food and sleep in my bed and see my children. Just three weeks later the staff here can't stop raving about how wonderful I look, and I know that is because I knew what I needed (and because John is feeding me constantly and not letting me forget that the doctors want me eating 2000 calories a day until I gain at least eight more pounds).

But I was sick those first couple nights (partly because I was in withdrawal from the ativan I had been getting at the hospital, easily remedied by getting more ativan but I was a little slow on the uptake), unable to sleep, heart-racing, eating constantly but not tasting anything, just generally miserable. I got to the point where I was saying out loud that I couldn't take it, that it wasn't possible to go on. But even as I said it, I said that it would pass, that some day soon these moments would be memories, that I was going to survive them because I wasn't going to die and that was the only other option.

And it turned out to be true. The Big Fat Moment. There are good ones and bad ones, but I'm always in one so I might as well deal with the one at hand and not worry about the rest of them. They'll make their appearances in time.