This was written a quite awhile ago when arrived on island non the late night ferry, Friday December 6. Moving out of the cottage and in to our home proved to be rather tumultuous and a cold with a nasty cough took me down first, then Steve, then both us and back to me.
But here my first impression: We are home. The dark firs rise into the cold gray sky, a soft pink rims the edges of the horizon. Last night, the moon was so close I felt I could nearly touch it as we swung out and on the Salish Sea, shadowy islands slipping by. I slept for most of it, that deep ferry slumber like a baby being rocked. And when we go to the house, the sky spread out overhead, oh my god— the sky, so full of stars that I have missed.
People have asked me what we will do when we get back. Well, dear reader, there will be a lot of trying to sort out 2013 and accepting what 2014 brings to us. The triumphant story is that I survived a deadly disease. For now, I am cancer free. I am grateful. And we can leave it at that.
I never imagined how many other stories would be in the mix. While reluctant to put my experience on a par with a survivor of war, I recognize more than ever how much is left unsaid in the rush to proclaim the good news. I am glad to be back at the deepest level because I know what the alternative is. I am changed in ways I can hardly articulate.
Some things are worth noting. I now have the relief of being off prednisone. With it, the steroid induced diabetes also disappeared. I also have a body greatly weakened by what one of the nurses called the “devil drug”.
My dad always answered he was “peachy keen” when you asked him how he was. Even if it was obvious nothing could be further from the truth, that was all you could get out of him. But now, I think, it is time to adopt his saying, for rest of this saga.
As for the transition from Seattle and the SCCA . . . I will miss many things about Seattle. I cannot say the same about the SCCA. A short example to explain why. Just before we leave, we get a call from one of the Maravir (clinical trial drug to control CMV) study coordinators.
“So, looks like the Maravir isn’t working anymore for keeping your CMV numbers low. So we need to get your left-over drugs and an EKG and your logs.”
“Okay. Um, so what are you saying?”
“We just need to get these materials, so we can stop the study.”
“I understand. But what are you saying about the CMV for my body?”
“Oh, well, you went from 31 to 200 to 20000 in a few days.”
It now occurs to me that no one has ever really explained what these numbers mean, or what CMV could do. It also occurs to me (and not for the first time) that the study is more important than me.
On the day 106, six days past the normal Day 100 discharge date, “the doctors” come to me (another group of “I-have-seen-you-one-or-two times doctors”). They ask me to stay another week or two for monitoring. I don’t know how they expected me to react, but you do, right?
“Why?” I ask.
I am thinking they are putting me on back on Gancyclovir. It is my only option.
“We want you stay here so we can monitor if the numbers goes up.”
I ask, “But if the CMV numbers goes up what can you do?”
“Your little “Podunk” (they don’t exactly SAY this—it is implied) operation in the San Juan islands can’t monitor you over the weekend.”
“But if the numbers go up what can you do?”
“Put you on Gancyclovir.”
“We have that all set up—to get the Gancyclovir in Friday Harbor.”
“We want to be able to monitor you.”
“We can do that from Friday Harbor.”
This boring conversation goes on for quite awhile. Meanwhile I wonder who I am exactly talking to, as the Post Transplant people have signed off the discharge and the Long Term follow-up crew has had only one Wizard of Oz meeting with us—with two doctors that told us they would be the ones following my case from now on. We really liked them. We never saw or heard about them again.
Suddenly, and with urgency, I know I just need to talk to a doctor who will be there again to talk to next week and next month. I can’t deal with the Ant Colony anymore.
And so, we wrest ourselves away from them and depart with no words of encouragement of or acknowledgment that we had spent months working together (in theory). The best we get is a brief “good luck.”
For 99% of the time (okay, 95 %), I have been a good soldier, and taken what they gave me. But I had quite enough of all this. And no one ever told me the inclusionary information of the numbers and what they mean. Luckily Dr. Google spelled it out for me. They were worried that if the numbers went too high, it could—well, kill me. But this seemingly irrelevant information was never explained to me. And if the numbers were 20,000, what is that out of? It sounds alarming but is that out of 21,000 or 60,000? Is the patient deemed too dumb to handle this kind of information? I understand is a teaching institution. Research keeps the doctors fresh. Not arguing with that, But really the SCCA always comes first. And finally after many months, I had to say, no—this time I come first. I am not a chart. I need good care but I also need a human face that recognizes me.
The really wonderful news, is that the Cancer Center at the new hospital has been great. A spa-like experience compared to the SCCA. Competent and attentive nurses, a good oncologist from Bellingham who comes once a week, blood draws, infusions and delivery of medical materials, no problem. Also we have robust options if I needed to be flown off. I am very pleased with their care.
So, how does it feel to be home? Great. Overwhelming at times. But also peaceful and right. So many potentially threatening possibilities that I lose track. The effects of the Transplant are front and center of very day. But the birds at the feeder, the walk to the beach that intersects with a super pod of orcas, a friend coming by with goodies and just being here make the details tolerable.
The first place I always start to get grounded is with the season. Solstice is a celebration of the dark sacred night, even though it comes round at an astonishingly early hour. The Winter Solstice asks us to Pause in our lives, to rest, to breathe and reflect. And to gather with friends and family, but not in a frenetic way. I am a Winter Solstice baby, so it has special significance for me.
The blog will continue, as it did before leukemia. Unless there is a significant event, I will report my health as peachy keen. I will explore my island, share the ways to do tangible activism and most of all, I will participate in the beauty, appreciation and gratitude that make life worth living.