It's been 4 years!

I opened the blog, and it's been so long since I've been able to write, the interface is different! I opened the blog to my last unpublished post exclaiming now I can write. Apparently, I could not.

I've thought of y'all these quiet months of recovery and a worldwide pandemic. I've wondered how you're doing with the changes and the ebbs and flows.

It's difficult to believe that just 4 years ago, we were advancing in careers we'd both trained tirelessly for, the fires hadn't hit our hometown with a vengeance and become all consuming, and we were wondering if we'd one day have children, even if through fostering.

I had to stop writing because our story just didn't seem fancy anymore, this thing we're experiencing. I felt like a broken record. The grief was beginning to well up in me and any flowery or funny thing I could say was being usurped by this is hard. This is unspeakably hard. But dangit, if Dom and I are not the Energizer Bunny, I don't know anything anymore.

We have now been a couple in sickness longer than in health as we celebrated our seven year anniversary. And I want to tell you the raw bits, but I'm afraid you'll run away, because it's no longer entertaining. The numbers have all merged together and we've stopped the trail of one to pick up another and I've lost many of you on the trail; many of you are still on White Count and we're on alkaloids and proteins. 

So do I share the nice first, or the raw bits? I could tell you that right after I typed this sentence a coyote started barking in the field. I thought it was the neighbor's dogs until I really looked out the window. The dogs wander alone, and we've inherited chickens, so I needed to make this canine most unwelcome. Is my grief a canine? Seems so funny I'm typing away about rawness and am visited by a barking coyote.

When we got the news that Dom had Leukemia, I charted a course. He'd have one month in the hospital and then we'd be on the road to recovery. Then the news came that he had the kind of cancer that would need many rounds of chemo. So I charted that course. I knew lots of people who did their rounds of chemo and then there's a light at the end of the tunnel. Then I found out that between rounds of chemo, there would be infusions and many 4 hours round trips between rounds of chemo. So I lost it a little bit, I mean charted a course. Then I found out he'd need a bone marrow transplant. And we'd have to move to Sacramento for a few months. So I charted a course. Everything was new and shiny and we were held up and supported by so many people. I was surrounded by medical staff. People brought me coffee and sandwiches. My rig was equipped.

Somewhere between the bone marrow transplant and today, I'm not sure where, I lost my mojo. I'm not sure if it was him wasting away in the hospital having one of the worst and deadliest cases of gvhd or the insurance snafu that required a minimum of thirty frustrating hours on the phone between Christmas and my birthday in March of 2020. Maybe it was the long recovery that is not going as planned. Or perhaps it was the pandemic right on the heels of pneumonia. Needless to say, I feel like the Christmas paper crumpled and shoved in a trash bag. My usefulness served, and now I'm creased and tape has ripped away the ink. The paper is in the bag for a reason, and sometimes I feel that's where my words belong too.

I was feeling incredibly lonely. People I reached out to and was so looking forward to seeing flaked on me with an apology which rang so hollow after all I'd been through. Dom was losing his mojo too. I think it's a miracle he got to attend his sister's wedding. He had just under a year to build strength to walk and put some weight back on his emaciated frame. While in some ways it was a triumph to get him back home to be with his family, in other ways it bled me dry. I was so afraid he'd get sick while overseas. Your pandemic fears were/are my every day fears.

Upon our return, it was clear he'd turned another bad corner. So here's the nitty gritty. He has one of the worst cases of gvhd. (Graft vs host disease.) The new immune system continues to see Dom's own body as enemy cells that need to be eradicated. He struggles to breath as his lungs are attacked. He struggles to keep his eyes open and moist. He can't feel it, but his kidneys are being attacked. You guys. We had one week. One week between his liver being the thing we were keeping an eye on to his kidneys being the thing. He's been on the immune suppressant that most BMT patients are weaned off of in the first year in addition to massive steroids. This is not sustainable. I am not sure how to chart this course. We go every week, the four hour round trip to receive a treatment that takes 3 hours. Sometimes more. We go to a local eye doctor twice a month where he has had plugs placed in his tear ducts and more. The treatment for his eyes may yet be out of reach. Sometimes he also needs an infusion to boost his immune system which takes another 3 hours. He is a human pin cushion. He gets a needle in both arms, sometimes his hand. One needle is so large, he must keep that arm still. Blood is taken out, the white cells are spun out, zapped with UV light, and sent back into his body. No one can explain how this works, but somehow, it does? Some mornings, as my alarm goes off at 5, I question its efficacy.

But we jump through the hoops.

Two of the group of five who had transplants the same week have lost their fight against the cancer. We've lost track of the others. The doctor has confidence that with his immune system being such a fighter, the cancer will not come back. The silver lining in this is Dominic is still here.

Dom is in much better spirits than I am. He's so grateful to be alive. We're both so grateful for the support we received. We'd never have made it without so much generosity. Some of you really were the difference between eating or not. That's to say, we haven't gone hungry and we have a roof over our heads. Life is good. And more than Dom, I sometimes struggle to see that. I realized sometime after his lungs started failing that we would never go back to normal. While people have been clamoring to open up during this pandemic and fighting because they were asked to wear a mask, I've been processing how to move forward as both caretaker and bread winner. (I am not a bread winner. I could not even make a single sourdough this whole pandemic. This is not me.)

Dom is having to find himself again. He wants to work, but it's not in the cards right now. Especially with the pandemic. The vaccines did not pose a risk for Dom, but in all likelihood, his medication prevented the efficacy of the vaccine. So, we continue to live with great caution. We're so fortunate to live where we do. It's beautiful. It's secluded. And, it's allowed Dom to putter in a way that allows him to rest when he needs to. He built some fairy houses, and if anyone local needs a fairy house, let him know. We've convinced our Cece that fairies came in the night and built houses here and there. We sent the fairies to her house as well. Only the fairies can open the doors and windows we tell her. We believe in Santa round these parts. Life is too harsh to not weave stories of whimsy from time to time.

 

He rebuilt a rock wall at the entrance to the property. It's all just slow and steady. Friends loaned him an electric bike which allows him to test his strength and get around when his lungs can't get him the breath he needs to get up the hills here. There's much to do here always. Trees to cut back, weeds to mow, walls to paint. He said it's like the Golden Gate Bridge. Once you get to the end, you have to go back to the beginning. It's never done. I sometimes get overwhelmed but he keeps plugging along. 

So that's where we are! While others perfected the art of baking sourdough, or scrambled for childcare in this last year, we've just hammered on. We've been stunned as people who have offered encouragement have themselves succumbed to the frailty of life. I hesitate to share too much. (Was this too much?), but am happy to share more details of my own spiritual journey privately. I dreamed of one day having a party with all those who have been so supportive of us in this journey. Now, I just dream that you all know how very special you are to us, and how grateful we are to know you and that you are well and content.