Wednesday, May 21, 2014

Miss the Ground

John is pacing.

There isn't anything wrong, really, right now. But a cancer diagnosis is like an earthquake; long after the shaking has stopped, you don't feel as if you can trust the ground. If there have been aftershocks, it takes even longer for your confidence to return.

Creative energy is a mysterious thing. While I know that positive developments occur when I feel positive, I also recognize that it cannot be forced. It is not so much that I find my center, again and again, when the earth has shifted from under me. It is more that I sit in the rubble and know that I am not happy about it, and wait in the knowledge that I will fall back to peace.

All we can do is cultivate our core and hope that good things grow, that when the foundations shift we will be dragged back to a good place by the gravitational force of the center.

Douglas Adams wrote that the key to flying is to fall and miss the ground.

But you have to practice, and that means falling and hitting the ground, hard, again and again. And you can't teach anyone else to do it. The only thing you can really do is meet people where they are, with unconditional love and acceptance of their unique processes of growth. You can be a soft place to land when the tremors hit.

And then they miss the ground.

Wednesday, May 14, 2014

Bottom Land

I sat down in the shower and cried. I guess that constitutes a low point. The first donor is injured and unable to donate for at least two months and the second donor is unable to donate at all. We must restart the search process. I feel like I was within sight of the summit, and then a storm blew in and I have to bivouac for an unknown amount of time. To wait, to hunker down. And also, I have to go through another cycle of chemotherapy, enduring a rainbow of discomforts.

It's pretty amazing to feel so completely good, over and over again, after feeling so completely bad. If ever you feel the need to marvel at the incredible resilience of the human body, take note of the people you know who have recovered from chemotherapy. The depth of the abuse perpetrated by these drugs is unfathomable. They are so caustic they will burn your skin; they are so caustic they will burn through the veins. They have to be administered in such a way as to completely bypass all of the body's defenses, so that they can enter the bloodstream and reconfigure the DNA of any cells that get in their way. It's best not to think too hard about what they do now, and what they do later. 

That's one thing when you feel sick; when the doctors have told you that you will die without treatment and that this is the only option. The pricetag is high, but it's worth it. You look at your family, at the stories you've told your whole life, and get out the checkbook.

But when you don't feel sick, when you are in remission and the doctors say you must keep coming in for more, when it isn't even part of the treatment but just a placeholder because of logistics and banal details completely beyond your control, when you start to doubt the wisdom of it but you don't have an argument and you know in your gut that a lot of this is guesswork on everyone's part, when you don't know the timeline and the goal posts keep moving, and it's going to hurt, the choices don't feel as simple anymore. 

The horizon gets broad and bright when things feel good, and the prospect of having everything shrink again is scary. Thinking that my body has lost a critical defense, that my own cells may begin to mutate and try to kill me at any time and the mechanism that fights that mutation is broken and must be chemically destroyed and replaced, is pretty disconcerting. If my marrow is broken, how can I trust my instincts? What can I possibly know in my bones, if they don't work?

When can I say what feels right in this process, and what feels unnecessary?

Right now, I have no way of answering that question. It seems to me that my work is to take the path of least resistance, and save my energy for the tasks I know only I can do. I don't believe that the doctors are infallible, or that they even know exactly what they are doing right now. But I want to put my energy into the things that I want to grow, and I don't want the cancer to grow. I will let the doctors direct that part of the process, and I will grow in my ability to wait, to hunker down, to just be. I will grow in my ability to find peace and wisdom in the uncertainty of things, to find the still water under the raging tide, to accept that gifts reveal themselves in time and not at my command.

I didn't want to do anything when they called. Not move forward, or backward, or be in the moment. I just wanted to be frustrated and angry and stuck. I told John I felt like I couldn't get any purchase on anything, no feeling of momentum or direction. He said it isn't the year for that type of growth. He's right; it's the year for another type of growth altogether, and I have plenty of that left to do. 

So I'm past that low point. I think. I'm ready to learn to wait.

Monday, May 5, 2014

Oh, Right, This DOES Kind of Suck

I guess I'll unpack. For a few days, anyway. As soon as I published my logistics post, put all my tshirts in little baggies and sorted out a week's worth of children's clothes, the phone rang. My nurse at Dana Farber was calling to tell me that my donor was in a sporting accident this weekend and is unable to donate on schedule. (A sporting accident? What did he do? A sporting injury is not the type of thing that should result in extra chemotherapy). 

My doctor is still waiting to find out the nature of the injury and the length of the delay (apparently the donor doesn't come to Boston, but he does have to travel to a donation facility), and whether we need to call the next person in line. I guess that's already been done, actually, so whoever gets there first will be my donor. Unfortunately, processing a donor takes several weeks, so we're set back a minimum of three. Although I won't know for a couple of days, odds are my doctor is going to ask me to go through another round of consolidation chemo, which is less arduous than the conditioning process but still not fun. In that case, it will be closer to six weeks before I go to Boston.

When I write a blog post, I am always honest about how I feel. I wait to write until I have completed a thought, and generally, when I've done that, I have something positive to share. My first reaction to this news was to take it in stride; I've understood all along that one can't keep a calendar during this process, and this certainly does not rank with real bad news in the world of oncology.

But I was ready to go, and now I'm thrown. I don't want to do extra chemo. I don't want to be in a holding pattern again. People tell me how brave I am, how strong, and ask me if there's anything I need and sometimes I feel guilty, as if everyone else is making more of it than it is. As if it isn't that hard.

So thanks, Universe, for reminding me to accept compliments and assistance with grace, for affirming the conflicts inherent in trying to force order on the disorderly, for keeping me nimble and testing my endurance. Because this is that hard. It turns out this whole thing really kind of sucks sometimes. I can roll with that. And now I can go get some grapefruit juice. 

A Sprinkle of Logistics

It occurs to me that I have not taken the time to spell out the details of this process, and folks may be interested. Feel free to post questions in the comments and I will respond.

On Tuesday, May 6, I'll be admitted at Brigham & Women's Hospital in Boston. The first procedure will be the implantation of two Hickman catheters. Two! That means I can be hooked up to as many as eight lines at one time. Oh, the possibilities! One of these will come out when I am discharged, the other I get to keep until the doctor decides I am through having stuff poured directly into my heart. As it is somewhat difficult to place an iv in my arm due to my excess of valves, I am sort of looking forward to this easy-access alternative for my transfusions in the months to come. It's bad enough to go in for regular stabbings, but multiple unproductive stabbings gets to be the limit. 

Wednesday we will start chemotherapy; I get two different drugs over four days, plus a few bonus infusions of various attractively-named substances. A week from Wednesday I will receive the transplant itself; my donor will be at Dana Farber giving the donation that day, I think. He is 37 years old, probably European and possibly German given the donor statistics (and the fact that I had to sign something saying that I was okay with having an European donor and not concerned about risks of fashionable dress or electronic dance music); I can be in touch with him in two years. Although a bone marrow transplant will change the recipient's blood type, in my case we have the same type so I'll continue with my caveman type O+. Then I have to hang around and enjoy the hospitality for a few weeks while we wait for my blood couunts to recover; my white count is usuallly normal about 21 days after the start of chemotherapy but I've never had a chemo this powerful before (although the transplant tends to speed things up so we shall see what we shall see).

The neutropenic ward at B&W is very strict. I can have visitors but they must wear masks and gowns. No take-out, alas, although there are approved outside foods but I'm assuming it must all be hermetically sealed (the mantra is packaged, pasteurized, processed). I cannot have any fresh food; everything must be cooked. I'd probably starve to death on a diet like that but I won't have the chance since they'll be after me with iv "nutrition" if I drop so much as a pound. My clothes have to be brought in in plastic bags and my books have to be new.

After transplant, there is a recovery period of up to a year. The first few months are the most critical; we are looking for any signs of Graft vs. Host Disease (GvHD), which is managed with medication. And Boy Howdy, are we Managing with Medication! My immune system will be totally naive; imagine an infant without the benefit of the birth process or breastfeeding, and then add immuno-suppressive drugs (lesser-known Roman gladiators named Tacrolimus and Sirolimus). The protocol is very strict. No food that has not been prepared in my kitchen. No fresh/raw food. No playing in the dirt, no watering my plants, limited social engagement (and I have to avoid groups of kids), no dishes, no laundry, no mowing, no raking, no house cleaning, no hugs, no restaurants, no concerts, etc. The primary concerns are germs and molds. 

"But you don't have to be in a bubble!" they say. I guess that means I can hang out the window of my car and shout across the street. 

Seriously, though, I can interact with people, and I can socialize in small groups, preferably outside, as long as I wear a mask. John and the kids can still go to parties, even when I can't. We have a fancy new screen porch and people can come over and sit on it and we can taunt the vicious Georgetown mosquitoes. My kids can play with other kids, they just have to wash their hands and change their clothes when they come inside. Dad does the minding if the babies feel poorly.

I'm going to create a master list of what brands and kinds of food we buy and set up a charge account at the local grocers so that people can pick things up for me. Folks are welcome to cook for John and the boys or to bring ingredients for recipes. Any dishes that I have to heat to pathogen-killing temperatures are probably also safe. Anything I don't have an answer about I can ask the staff at Dana Farber.

Despite the intimidating list of don'ts, I anticipate that the recovery will go smoothly and be fairly simple. My doctor in Portland says he has been amazed by how easy the recovery has been for his last several transplant patients, and I am in the best category for risks and positive outcomes. My cytogenetics, which are the dna markers on the marrow blast cells, are totally normal, which means that I have what is called a "deep remission." My leukemic cells had abnormal markers, so this means that the lab was not able to detect any tumor cells in my latest biopsy. This round of chemo will make it extremely difficult for any that are hiding to survive, and the new marrow will bring the pain to any that try to creep out in the future. My health is otherwise excellent; my gut is in pretty good shape considering the abuse and my organs are strong. Really, I anticipate that my biggest challenge will be managing the food rules and interpreting them according to my diet and lifestyle, and the need to repair my gut after treatment.

Also, I can't have grapefruit juice until I am off the immuno-suppressants, because it doesn't get along with the gladiators. That is sad.