My body moves down the hall, passing the room with two beds. The window light passes flat across their undisturbed ivory blankets. I move through this space, the dining table with six chairs, the two couches and two armchairs empty. Waiting? I turn on the water and rinse the dish. I put away the milk. There is such familiarity in these actions yet I recognize them as foreign. For the first time in four months, I did not shower. My yoga pants, old green fleece that looks like Astroturf and purple slippers move with me. Alone, I live in a place meant for more people, for a family. But mine is scattered. I have been given a home in which to live and I am thankful, but I feel disoriented. How do I understand this strange existence – this familiar, so ordinary and yet everything is wrong, this is not how it is supposed to be.
What does one do when the tsunami hits and family members are washed away – you are left alone in an unknown land? How do you move through your life when the towers fall, with shrapnel and searing silence? How do you construct the day when one-fourth of you is gone forever? How? I wonder. We find that there are ways in which life is common and familiar – there are still things we know how to do. Our tongues still form the words of our language and our body knows that with dark we are to sleep. Our stomachs bend in hunger and we tidy up our space. But above this plane of the known, we don’t fly, we hover. We are suspended, not knowing exactly what to do with ourselves, our true selves. For who are we now? We are not what we were – circumstances have so clearly and utterly altered what was. We want to reject this change, this sweeping in and robbing, this graffetiest that warps and mars the picture. There is silence where there should be interrupting sound. There is spaciousness where there should be crowding and bodies moving past one another. We are still that person living in that world, and we are not. We do not yet know, or yet see, who we will become. We are left adrift in this time between times. How do we now define ourselves when the gripping-on-places have been stripped back – gone. How do we invite in change that will form beauty and have the wisdom, or perhaps it is strength, to not be poisoned by the rot of loss. Do we dare embrace that which has cut us, deep black wound? Dare we?
Perhaps the hardest part is knowing there is no going back. There is no way to undo. Yes, one can move forward, but never back. Life has changed permanently. This is not some blip, but it is now defining – it’s reality pushes into every last action. Nothing is disconnected from this changed reality. Yes, I wash my dish and that is ordinary, but I wash in a sink not my own. I look out the window to a foreign view.
We look to take ground. Here in this new strange place, we seek to conquer, to plant and watch for signs of new life. What’s lost is lost, there is no regaining it and so, here we are. What shall we do? Should we not purpose to see what IS before us – should we not survey this land? We have landed here against our will. But there is still bounty to be had. There is ever resilience of life calling out to us – declaring the sometimes offensive truth that there can be new beauty and life, growing from the loss…
On Saturday evening, I was informed that there was a transplant apartment at Ronald McDonald house, ready for us to move into. Knowing that there were over 30 families on the waiting list to get a room, Sten and I moved quickly to move everything out and clean the old room. We’ve been on the other side of that and know what it is to need a place to stay right away. We took care as we cleaned the floors and bathroom and dusted the shelves, imagining it was our own family waiting for the call that there was at last a room available. And so as Sten went back to the hospital and cared for Allistaire, I got settled into this new 2-bedroom apartment. I arranged the recently purchased fake plants (no real plants for a year post transplant) and the picture frames and made the bed with my own sheets so that it would feel a bit more like – well, I was going to say like “home,” but perhaps it is more accurate to say, like “a home.” I felt relief that I gotten everything done – just in time, I thought, to get back into the hospital. But then I got sick. Then I felt adrift.
While I have been alone in a place meant for more, Allistaire has been having a rough time. Her Diladid pain-med drip has continued to increase and is now 6 times higher than the original dose. Thankfully this seems to have finally met her pain level and she is overall more comfortable as far as pain goes. However, she does now have mucositis in both her tummy and her throat and mouth. She keeps this little crescent shaped mauve bowl nearby to spit up mucus. She uses a small cloth like a burp rag to wipe her chin from the constant strange drool. In addition, she has been retaining fluid which is another common challenge at this point in transplant and is likely the capillary leak caused by the Clofarabine and/or the mucositis itself. Allistaire’s weight is typically right around 15 kg but jumped up to 16.5 kg. This is not because of a calorie increase. She has not put almost any food or drink in her mouth in over a week. She is being supplemented with IV nutrition and lipids. This means the additional weight is fluid retention. Her little eyelids are puffy and her cheeks are huge. So they give her Lasix which is a diuretic. She pees like crazy and can lose a kilogram in short order. Because she is continuing to need blood transfusions (yesterday she got both blood and platelets), they always “chase” the transfusions with Lasix because of the fluid increase resulting from additional blood in her system. This fluid retention, along with side-effects from some of her meds, is another factor in her high blood pressure. Because she is unable to take any meds by mouth at this point, they switched out her by-mouth Enalapril, for a higher dose of the Hydralazine. The BMT doctors consulted with the Nephrology (Kidney) doctors who said that they could definitely increase the dose of Hydralazine from where it had been and this should better control her blood pressures, which it seems to be doing.
While Allistaire basically does nothing but lay in bed and even mostly refuses to talk due to pain in her mouth, she is actually doing relatively well considering where she is at in this process. Thankfully, her LFTs (liver function tests) continue to improve, and her bilirubin count, is completely normal. All of this means that while her liver is still processing junk from the chemo, it is essentially healthy. And to use the words of the doctors yesterday, “her kidney’s are pristine!” Thank you God! And to add joy to joy – Allistaire has blood counts today for the very first time since they were wiped out with chemo! Her ANC was a whopping 39 today! She also has some lymphocytes and monocytes!!!!! Today she has her last dose of methotrexate, which might take them down again, but the point is – those donor cells are there in the marrow – doing the miraculous! Who can believe that some 37-year-old ladies european cells are growing in my child’s bones!!!! Wahoooo! It is the beginning of recovery. She will not considered to be fully engrafted until she has had an ANC of 500 for two consecutive days, but it has begun. New life is taking root in our girl.
It has been a strange week. I got sick on Monday morning and was thus unable to even come on the Unit, much less be with Allistaire until Friday morning. During that time, Sten cancelled his original flight back to Bozeman and stayed with Allistaire in the hospital. I know this was a good time for the two of them to be together, but it is was hard to stay away and hard to see how dramatic the change has been in Allistaire in just five days. It is so sad seeing her just lay there, so uncomfortable and her face distorted by fluid. She just isn’t herself. The other day I remembered when we took Solveig camping at Wenatchee State Park when she was 3 – such different lives. Makes me sad. It draws me into grief, but I ever have to stop myself and put this time into perspective. We could be home. She could be having hospice nurses attending to her. Instead she is here on this 125th consecutive day in the hospital. She’s been given one more chance to beat this thing. And today new life has begun. Now we will need to be on the alert for signs of GVHD (Graft Versus Host Disease), where the new cells/immune system will likely recognize her body as foreign and start to attack. Acute GVHD shows up typically in the skin, the gut and the liver.
*By the way – whoever gave Allistaire the little Hello Kitty purse with the lip glosses – thank you! Your name got disconnected from this gift but let’s just say, other than Doggie, nothing brings her more joy!
The pictures below include a fun visit from an old friend of mine, Betty Price, and Solveig with her cousin, Lucia, camping over near Port Orchard.
Beautifully said and written. So glad your family can be together and yet I’m sorry with your illness, there’s still been separation this last week. We continue to send healing and positive thoughts to all of you. (And we miss seeing the light of Solveig on Saturday mornings). The pictures of Allistaire grimacing makes me grimace. And yet, we celebrate the new life being subjected to her. Hang on…. You can do this. xoxo
I know the place where you hover. It does get better. There is such a thing as a new normal even though it is hard to embrace something you resist. Something you did not envision for your life. It is a blessed place though. To really see the beauty in each day; to find the joy in, and be thankful for things that you might have otherwise missed. That is a gift. To be able to love so deeply through so much hurting. That is also a gift. To walk through life with eyes wide open. I don’t think that yearning for the way things were ever really goes away though. It is hard to linger there for long. Was it a wonderful dream?
Allistaire looks so great. I see her there, in those pictures with Solveig. In my minds eye, that is where I see her. I remember that Engraftment was the yuckiest time for Olivia but once those cells took hold, and her counts started coming up, each day was better than the last. You are at the peak of the mountain, I think, and soon you will start running down that mountain that once seemed almost immovable. She has come so far! God is good. Love and prayers from the East. 🙂
I feel the need to clarify something. :)I mean that Allistaire looks great for where she is. I did not mean to diminish her suffering. It is a hard and painful time but she is sailing in transplant terms and that is GREAT.
I’m praying that the Lord delivers Allistaire to the safe side of the ANC of 500. Poor little one – I’m so sorry she has to endure the mucositis. Wishing her return to health soon! And, Jai, I hope you feel better soon! What a time to have a bug attack you! Prayers from the Montana grandma!
My heart aches with the pain your wee girl is experiencing, but I read with hope the words of someone who knows: “she is sailing in transplant terms and that is GREAT.” Praying comfort, rest, healing, hope, and continued good news from the medical team (God bless them). I love you, Jai, and I continue to think and pray for you so often. Your little warrior family is changing lives.
Thank you for sharing, praying for all.