Today I have spent the afternoon bearing witness to the start of Wil's conditioning treatments for transplant 2. We have an official date of the new transplant, October 9, 2014. Donation is complete, as of tonight, cells being counted, and we are at the starting gate, day -9.
Wil is receiving his own pre-cruise cocktail of antithymocyte globulin (rabbit) or ATG. It is an immunosuppressive antibody from, you guessed it, rabbits. They use it in kidney transplants as well. Today is day one of three days of ATG. They call it "shake and bake" in terms of the most common side effects. Chills and fever. We've done chills and fevers plenty of times, never fun, but familiar. I was not prepared, however, for the extent of the ATG side effects and enither was Wil. They slowly titrate a person up to avoid reactions, but ultimately, to get the correct rate of infusion, everyone ends up having the side effects and need to be brought back down. They carefully monitor vitals every 15 minutes for this very reason.
After a few hours of the transfusion, Wil started to shake a little. Within about 20 minutes his heart was racing at 140 bpm. His blood pressure dropped to 65/41 while his whole body felt like one big charlie horse. Muscles cramping, shaking uncontrollably. It was heart wrenching to watch.
He had been premedicated with high doses of Benadryl, since reaction is "expected" and common. When his BP dropped they called the ICU nurse who assists on BMT, able to rush up, backpack full of fun, and hang around to help until things stabilize, should it turn more serious. We are on a locked unit afterall. Rooms are pressurized. It is more sterile here than any other part of the hospital. If at all possible you don't want your no-immune-system loved one leaving this floor. So with ICU nurse, assigned nurse, fellow, and the charge nurse, we had 60 minutes of agony, Wil physically, me emotionally.
They stopped the ATG for a few hours, gave him demerol, and waited. His pressure started to come up, just in time for the vomiting to begin. He had gotten platelets in the morning and was scheduled for blood later, but that was put on the back burner. He had already had 3 doses of IV Benadryl.
There is nothing I can do in those minutes aside from run for the barf bucket, grab a cool wash cloth, diffuse some oils, and rub his head. I know, that's a good start, you may say. I'm not sure it will ever feel like enough though. I get it, it's all I can do. My big and tall guy just looks so small on days like this...I just want to wrap him up and hold him, if it werent for yards of tubes, access points into his chest, and total body pain. His body is not his own...nor is it mine these days. Even touch is at the mercy of cancer treatment. This is the struggle of the bystander...to find a place of peace, to ride the waves, and find a way to hold on while also letting go...when all you want to do is somehow make it better. These are the days when you learn what holding a space for someone actually means, how presence alone can be the miracle of connection, without the physical closeness we've had to rely on during all the other trials of our marriage.
Side note: I eat about every kind of food. But I was vegan for awhile and still cook that way quite often. People get really weird about meat and dairy, especially in Texas. What do you cook? Does it taste like cardboard? What people don't understand is that vegan cooking is about the spices and seasoning. It's about creative planning and skill. Thinking outside the American diet box. Not because nature does not allow for tasty food, but because most of us grew up on meat and dairy, easy additons to make something taste rich. But there is something extraordinary about bringing to life a dish of grains, veggies, and plant protein. It is even more a triumph when served to the meat crowd and they love it! (I make a mean BBQ Tofu that required an open mind to what a meal could be without the usual ingredients.) These days, tied to a pole of bags, taped up, achey, afraid to kiss for fear of germs...I'm a hugger by nature and it's easy to feel bonded when you have physical closeness to your spouse on a daily basis...I will be glad when I can someday throw my arms around him and plant a wet kiss on his face. But for now, we are learning a different kind of intimacy that only some kind of illness or distance can grant you. For a combined days equally 5 months out of the last 10, I have fallen asleep alone at home. Now it's a text or a phone call to wish each other sweet dreams. I'm not complaining though. Sure, I'd trade it all for the opportunity to hold him, fall asleep next to him, be bothered by the occasional mutual snoring, but it's a lesson in loving I won't forget, and I'm learning how to just be with him in the way he needs it now. Quietly. Sometimes from just across the room. He feels best when I am here, he sleep better if I am watching him curled up under his marshmellow pile of blankets. And so that's what I do now. I watch over him, touch his head, hold his hand when I can.
Compazine, and an hour nap later, he was able to stomach half a package of beef ramen for dinner, the only thing other than clear Ensure he has had all day. Shrinking every day. After that, it was off to dreamland again. Today is also the first day he felt too weak for a shower. Two more days of ATG, and we are crossing fingers this afternoon was the worst...but we are told every day with ATG is a new day and to expect rough waters. After he completes that, it's on to the chemos for 5 days, one rest day, and then the big day. Our second chance (who am I kidding? He is on at least miracle number 9 by now!)
Tonight, as he was in and out of sleep, he said "I'm looking forward to transplant day."
There are moments when we feel our sea legs taking root, balance in the midst of a rocking vessel and turbulent waters. Stomachs weak, exhausted, but somehow still grounded to the floating floorboards. During his last pre-transplant conditioning he was a ball of nerves and emotion. Today the only thing shaky was his body, but not his spirit. I think some of it has to do with his increasing resolve to live, to move through this inpatient stay, and get home. But another piece, I think a larger piece, has to do with the increased outpouring of love in the last week, a few more visitors, and the energy that surrounds him (maybe even the rats and bats around the room that seem to draw in other patients and staff to have a look...I'm very proud of my extroverted decorating plan to get him more social interaction against his will, LOL). You all mean so much. A text, card, a Facebook tag, a call, a visit...THAT is the best medicine to keep him upright and moving in the face of this storm.
Despite the day's harsh effects, and the physical weakness he feels, his spirit seems to have sea legs now. Yes, two years ago we were in a small room with room service, friendly staff, fancy island drinks, and every intent to immerse ourselves in a peaceful week of time together. Joy. Bliss. And it was.
Yet when I look at the details of life now, maybe it's not really all that different. Small room, lovely staff, time together, peaceful state of mind...Joy. Bliss. He's more ready for this next transplant cruise...engrafting on the island of neutrophils...and now, maybe, so am I...just a different set of cocktails.
I would love to see a sea of blue wash over Facebook...in the form of FTBF T-Shirts. Yes, it also benefits and will pay for the many clinic visits we pray Wil will have the opportunity to attend as he heals...but seeing people turn their profiles to pictures of them with his special shirt? I know that would mean more than anything to him. So, if you feel the love, if you have the want, the means, and have been touched by Wil's journey, we are taking pre-order sales for shirts. Two versions of the back, one with F*ck Cancer and one with a solid orange ribbon. If you need more details, check out our Facebook fundraiser page at: https://www.facebook.com/events/649721795141907/ or simply click our link on this blog page and email us.
Much love.
Thinking of you all. Deeply.
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