Day +43 - Chimerism and other Lab Tests

Since being discharged from the hospital, I've been returning each week for bloodwork and an appointment with my care team (my nurse practitioner and/or oncologist). Dana-Farber is amazing at the speed in which they process lab results. There's usually an hour between lab appointment and exam, and before I'm called into exam, most of the major lab results are in. (Sometimes that's not a great thing as I see it immediately in my portal without the aid of the professionals to interpret the results.) In theory, a visit could be as short as 1.5 - 2 hours. Unfortunately, each week, that seems to get extended for some reason. The first week, we added about 3.5 hours to get  blood and platelets. The second week it was to be sure I had no fungal infection - so we added on a CT and MRI appointment. Last week, some elevated lab work led to a quick kidney ultrasound.

Whose Cells Are They Anyway?

We'll get to the lab work, but I wanted to start with the cool test - the molecular chimerism test. Biologists a out there, please correct me if I get this wrong, but as I understand it, using my donor's DNA and my DNA, they evaluate my T-cells, granulocytes and one other cell type (which escapes me now and is no longer available for me to see on my portal) to see what percentage are my cells versus my donor cells. Right now, my T-cells are 84% donor and my granulocytes are 99% donor - which is exactly where they're expected to be right now.  It's just over six weeks since the transplant and the stem cells are making a nice little home in my bone marrow, churning out all the cells they're supposed to. That's pretty damn cool!

What's neither cool nor exactly where they are supposed to be are my creatinine levels (measures kidney function) and my potassium level (too high). There are theories for both, and it all may be related. The creatinine might well be affected by the tacrolimus, an anti-rejection medicine, I'm taking to prevent Graft Versus Host Disease (GVHD). For some patients, it just seems to affect kidney function more than others. So what do we do? Well, we start by cutting the tacrolimus dosage by half and will evaluate at Monday's appointment to see if that's had an effect. If that doesn't move the needle, we'll talk about switching back to another anti-rejection medicine.

The high potassium may be related to the fact that my kidneys haven't exactly been bringing their A game. But it also might be something as simple as my diet. In a world where things weren't tasting so good, bananas and protein milk shakes (with bananas) were daily staples. Add in some of the other high-potassium foods I've been eating and that could be the answer. So we gulped down a lovely little medicine to help get rid of some of the potassium and changed the diet up. We'll see what the numbers say on Monday.

Keeping My Mind Active

In the meantime, it's been a good week. Since Monday, I've had good energy and have started returning to work 2-3 hours a day, something I'll continue for the next few weeks. It's been such a mental boost to do so. For one, it gives a little structure to my day to have a couple zoom meetings (though I hope not to go back to my 8-10 daily zooms anytime soon!). But more importantly, it gives me something to concentrate on; something for my mind to do. Since the first couple days in the hospital, boredom has been my constant companion, work is a welcome respite. 

We'll see what the numbers look like on Monday. If we have normal lab results, maybe we can have a quick day in Boston. It hasn't worked out that way yet for us. Maybe Monday will be a first.

--michael

Day +32: Seize the Dishes

Before Glennon Doyle became a best-selling author, podcaster, memoirist, and many other things, she was a blogger who started a blog called Momastery. Back in 2012, this post "Don't Carpe Diem" was making the rounds of social media in a pretty viral way.  I still love the essence of that post, which is that trying to seize the day puts a lot of pressure on you. And if you can just seize a couple of the magical moments that happen with your kids each day, that's a success.

I'm trying to adopt that philosophy as I move through the recovery process. Sometimes, I find those moments when Stacy and I are watching a movie together and life feels normal; or when I'm sitting out on the back patio with the dogs nearby and the breeze blowing; or, when I'm doing the dishes after dinner. Stacy typically handles most of the dinners that involve cooking, and not grilling out. And if she's going to cook, no matter how many pots and pans, she uses, then the least I can do is clean up the aftermath. But until the last few days, washing dishes seemed a bit out of reach for me. The other night, however, I was up for it and Stacy allowed it. And as I stood at the sink, scrubbing the remnants of bolognese from the pot, I felt one of those moments, and it felt good.    

32 days post transplant and it's not as if one day, I'm going to wake up one day and everything will be back to normal. Change comes imperceptibly, like the changing of the season. One day, you might notice the new buds forming on the maple tree outside your bedroom window, but you don't see all the steps that happened along the way to get those buds to bloom. 

I'll keep taking those little steps behind the scenes - if it's going for longer walks, working for a couple hours, or doing the dishes.

Day +27: A Week Home

Monday, I headed in for my second follow-up appointment. Like last week, I expected I'd get platelets and/or blood to boost my red blood cells. It's pretty par for the course, which describes much of this past week - routine. That doesn't mean it's been easy - it's a lot of daily cleaning for Stacy, not to mention taking care of the cat and dogs, which are mostly off limits to me for now, and taking care of me.

For me it's a lot of managing the ongoing side effects of my budding immune system and chemo-ravaged body. They've been pretty mild but sometimes not that mild, with occasional nausea, diminished appetite and altered taste buds. Not a great combo, but we're working through it and each day gets a tad better. For a couple days I had sinus congestion and a constant headache - a challenge when you can't take Advil or Tylenol. But that seemed to mostly clear on Sunday and so feeling better these last few days and here we are at day +26, more than a quarter of the way to day 100, a magical date when things open up a bit.

Even better news is that my blood counts have continued to climb and I needed no blood products yetserday! My platelet level jumped to 43k (10k is the level where they're thinking about giving you an infusion) and my hematocrit level also climbed sufficiently to avoid needing any red blood. Altogether it's good news and I continue to be on track. We are still trying to figure out why I have an elevated level of a marker for a fungal infection - it may very well be nothing, but we continue to investigate it - so we'll do some more scans next week just in case it's related to the sinus congestion, or if there's a fungal infection lurking somewhere in the body. My care team isn't worried and I'll try to follow their lead.

Try is the operative word. I'm working hard on acceptance and patience. Instead of hyper-focusing on every little twinge, I need to accept that this is a process - a long one, and not without it's stumbles and half-steps backward. And last night and this morning was definitely a step backwards. The sinus congestion and accompanying headache that had dissipated came back strong last night, bad enough to keep me up most of the night. I finally broke down around 3 am and took some Tylenol, which gave me a few hours of sleep. And I spoke to my NP today and am now on Flonase and Sudafed which is helping, and I have permission to take Tylenol as needed. 

As I slowly start to contemplate how I will start to add a few work hours to my daily routine, I need to remember that the milestones will come, slowly and surely. As always, it's hard to be rational when you're laying in bed with a washcloth on your eyes. Stacy's been amazing at constantly talking me off the ledge with little pep talks and rationality, reminding me to eat... little things. And it was only two weeks ago, my white blood cells were barely detectable and my platelets were at 6k. Now my white blood cells are halfway to normal levels, and my platelets are at 43k. It's a process. But it's progress.

Day + 19: Home at Last

 Man, it's good to be home. I was discharged from the hospital yesterday as my white blood cell counts continue to climb. Although I couldn't leave without a quick infusion of platelets. As I might have said before, white blood cells recover first and red blood cells and platelets lag behind. They'll eventually climb back.

Out of the Woods and Into the Forest

Coming home is a big step for sure and I'm feeling great but  still managing a few side effects, appetite, nausea and fatigue namely, but overall, I did really well with my first step in this long process. But it is a long process. The in-patient process - the chemo and the infusion of new stem cells is just the beginning of the journey. It's great to have tolerated the first step, but having cleared the woods, the forest looms as we begin the home isolation process. Maybe looms is too strong a word, but as I leave the protective enclave of floor 4C, as I enter the world ever so cautiously, we still have another 81 days (give or take) until we are clear of this next step. Day +100 is when things open up. The food precautions lift a little bit; the isolation requirement eases a bit; life starts to get a little more normal. But we were reminded of how even the little things can pose unforeseen challenges. Today, on my first day at home, I got a paper cut from opening a box of crackers. Not a big deal... unless you are very low on platelets which makes clotting a challenge; unless you are at risk for infection. Fortunately, we dealt with it, but it was a quick reminder that I need to be careful even in what were usually 

Things I Was Looking Forward To

Back on Day +4, I said that I was looking forward to when coming home were, in this order:

Cracking open a window; Going outside; Company; My dogs; My smart TV; Food. Fortunately, the weather cooperated and on my first day home, I was able to spend some time outside, with the dogs and Stacy, just chatting and enjoying the fresh air. We took a walk around the block -- much better than 28 laps around the floor. And Stacy cooked a chicken panang dish that we love with fresh vegetables and rice and it tasted great. Plus, a little Ben & Jerry's for dessert. Yum. And I'm writing this as I'm watching the Red Sox lose to the Pirates on a TV that I can actually see. So check, check, check, check, check. 

On the pictures at left, that's me and Buttercup - don't let her smile fool you. She's not overly happy to see me; she just loves to be outside and run. Below, Rocco, our needy child who is very happy to have me home.

Day +16: Here We Go

Yesterday, the much awaited white blood cell count growth began, moving up from 0.04 to 0.13 k/ul. (By contrast, normal range is 4.0 - 10.0.) Given that it had only inched up from 0.02 to 0.04 in two days, that's dramatic growth and made me more eager than ever to see what the counts would be here on day +16.

And sure enough the trend line continued this morning with the white blood cells climbing to 0.45. The key count is my absolute neutrophils which have gone from unmeasurable to 70 yesterday to 360 today. When I'm over 500 for two days, it's time to go home. Right now the plan is to be discharged on  Monday. The idea of going home in two days is as surreal as it is exciting, particular as my platelets were low enough to require an infusion again today. I'm told though that platelets are the last part of the immune system to generate, so it's not unusual to go home, knowing that I'll need a platelet infusion or two in the coming week(s).

As of today, I've been in the hospital for about three-and-a-half weeks. That means nearly 50 nurse shifts and at this point, I think I've been cared for by just about every nurse and patient care assistant (and a few student nurses) on the floor. I'm lucky to live close enough to Boston to be able to be treated by the caliber of nurses, PAs and physicians who have seen - and will continue to see -- me.

In addition to their calmness, professionalism, kindness and skill - which I have come to take for granted -  what I appreciate the most is their empathy, compassion and optimism. In the agonizing slowness of the hospital life, in the darkness that can make optimism hard to muster, it's incredibly uplifting to see and hear their smile behind their mask and to bask in their positive energy. 

My time on 4C may be winding down, but that positivity will stay with me. Here's to the next post coming from the home front. 

--michael