Day +14: The Absurdity of it All

 I was sitting in my comfy hospital chair, reading a good book, when I noticed the tubing that protruded out from under my shirt. It has become normal for me to go about my business - read, write, walk, nap -- all while tethered to an infusion pole. The absurdity of it all is that this now passes for normal.

It's normal to be woken up at midnight and 5 am for vital signs. Normal for me to sleep with a mask by my bed. Normal to quantify my daily bodily functions. Normal to be taped up prior to a shower. Normal to wipe myself down with special antiseptic cloths after I shower. Normal to do laps in a tight corridor. Normal to not have breathed outside air for three weeks.

Those aren't meant as a litany of complaints, but rather an observation on the normalization of things that are not meant to be normal. 

Counts today inched up and we're starting to play the "When will Michael be discharged" game. The money is still on early next week, but it might be into middle of the week.  It all depends on the counts. 

 

Day +12 - Are We Engrafting?

 Each day in the hospital passes slowly, tortoise-like in that you barely notice the day moving, but time passes quickly. It's hard to believe I've been here for 19 days. 

Starting on Day +5, I've been getting a shot of Granix which is aimed at boosting cell production, which has been decimated from the four days of chemo/conditioning I received before the stem cell infusion. Yesterday, after a good frozen food dinner, courtesy of my caregiver, chauffeur, and loving wife, and  my sixth shot of Granix, I started feeling markedly better in the evening. And it's got me wondering if I've turned the corner and my counts will start showing growth. If not, and this is how I feel with depleted counts, then that's good, too.

We'll find out soon enough when the morning labs come in...

A bag of platelets
being infused.

And the results are in. No, not engrafting yet. But in all honesty, I kind of knew they wouldn't be climbing yet. Dr. Soiffer and others thought it would be around day 14-16 when they start climbing so I'm still a couple days away from realistically hoping for a climb.  White blood cells dropped from 0.04 to 0.03 yesterday morning, and 0.02 today. My platelets also fell below the 10,000 mark to 6,000 meaning I'm getting an infusion of donated platelets as I write this. As I said in an earlier post, platelets have a very short shelf life, creating an ongoing need for fresh donations. If you ever thought about donating blood or platelets, know that they are always needed.  

There's a pun in here somewhere about time passing quickly, hare- like, and me losing my hair, but I can't find it. So will just share that  for the second time in the last six months, my hair be gone.

It started falling out in earnest two nights ago, so yesterday, my nurse Yasmine, the giver of my new stem cells, became barber Yasmine, taker of my hair. It'll grow back in a few months time, but for now sporting the buzz look and I might keep the look even when I have other hair options. 

Day +9 : Fancy Charts and Passing Time

 The recent exciting news was the posting of my Stem Cell Transplant Journey chart. It tracks my cell counts (white blood cells, absolute neutrophil count, hematocrit, and platelets). I'm trending downward as expected as the chemo does its trick. If you look closely enough, there was a slight uptick on Day +6 following the first of five Granix injections which aims to reduce the severity and duration of my neutropenia.

The low hematocrit and platelets will be treated with infusions. But for the white blood cells and absolute neutrophils, it's a waiting game for my blood counts to recover. Public service announcement: Platelets have a much shorter shelf life than whole blood, and they are always needed for patients like me. If you have ever donated blood or thought of it,  consider donating platelets. 

I started writing this post two days ago, and at that time I had written" I expect my counts to bottom out out over the next 2-4 days." And bottom out they did. Hematocrit and platelets continue to drop while my white blood cell count has dropped to 0.08 with my neutrophils at an undetectable level. 

And I feel the effects. The walking is more taxing, and as the day progresses, the fatigue builds a bit. 

The goal now,  is to stay healthy and wait for my counts, in particular my neutrophil count, to rebound. When it gets over 500 for two consecutive days, it's time to go home. Until then, I'm doing my best to make the days pass.

Get Out Of Bed

It's easy to stay in bed here. I can raise my head, raise my legs, control the lights, control the TV, call for the nurse, call for food. It's a one-stop kind of a place. But getting out of bed every day is key. For one, sitting in the chair and working on my laptop makes me feel less sick. And for another, keeping the bed reserved for sleeping helps me get a good* night's sleep (*good meaning only woken up once or twice in the wee hours of the morning for blood or vitals). 

It may seem counterintuitive but I find that keeping the TV off for a good part of the day helps. I've never been good at vegging out in front of the screen for long stretches and the same holds true in the hospital. So I try to avoid binge watching Seinfeld, The Office, or Modern Family which seem to be always on, and keep the TV off until after dinner when Jeopardy, and the sport du jour, comes on. Weekends, of course, have sports on all the time and so I take advantage of that and will watch whatever's on (although I might draw the line at watching cornhole tournaments on ESPN).

It ain't a lot but
gotta keep moving.

The Sound Of Music

I often forget to turn music on, and that's a mistake. The sound of music can have a profound effect on boredom and loneliness; even sad music can be uplifting. When the only constant noise in my quiet room is the cycling on and off of the HVAC unit, a little Spotify can do wonders to fill the space.

Of course, I also listen to music as I roam the halls of 4C. It's 95 feet from door to door. So picture your high school quarter mile track. Then take that track and divide it into fourteen even segments, that's the length of my corridor. 14 laps equals a quarter mile; 28 is a half; 56 is the full mile. 

It may not be a lot, but every day I'm trying to walk at least a mile. Mile by mile, lap by lap, step by step I'm getting closer to discharge.

When will that be? That's the $64,000 question. I'm hoping for next weekend, April 1-2, but it's a guess. Hopefully it's not beyond that.

Day +4: What I'm Looking Forward To

Today was a slightly more difficult day. Nothing serious, and mostly caused by the Cytoxan -- the chemo/immunosuppressant drug. Between the second day of it, and the medication to make sure I'm peeing 200ml/hour and then some (more than you probably need to know), sleep was at a premium last night. And the slight sleep deprivation and a somewhat persistent, if mild, nausea, made for a tad less comfort this afternoon. But my numbers continue to drop as expected and at some point soon they'll bottom out, and then we wait for them to climb back.

So I thought I'd spend some time thinking about a few of the things I'm looking forward to when I'm discharged.

1. Cracking open a window. Stacy has done an amazing job of turning our bedroom into a recovery room, and with the spring weather starting, it'll be nice to have windows open, fresh air, and the sounds of birds in the trees.
2. Going outside. Walking the 95 steps of 4C is, well, it sucks. No two ways about it. But I'm doing it because exercise is important. But to be able to walk around our circle in the spring weather sounds like heaven right now.
3. Company. Stacy and my family and everyone have been great about visiting, texting and calling. But it will be great when Stacy can pop upstairs for 5 minutes, instead of taking an hour plus trip in to see me.
4. My dogs! I'm not sure how we will deal with them as I have to be careful and make sure they don't lick me or scratch me. But we will find a way and it will be nice.
5. My smart TV. Watching Friends reruns on the small hospital TV with the detached speaker is all fine and good... for a while. It'll be nice to access our streaming services on a screen bigger than my laptop. 
6. Food. Non-hospital food, available in less than an hour. I'm well stocked now with my own provisions, but even still, if I want something like a protein shake - tonight's primary dinner - it's 45-60 minutes away.  

That's it for tonight. Just writing this list out makes me feel better. We'll get there. Thanks to everyone for their support. It's been a wonderful gift to receive.

--michael

Day +3: A Short Note On Compassion

I'm learning a lot about compassion. For the first ten years of my diagnosis, I was a very boring cancer patient, with normal labs and slow growing tumors. Except for about ten weeks spread out over those years, my cancer was for all intents and purposes, in the background. It loitered there unnoticed. That changed in July 2022, when it transformed, and decided it would like a little attention. 

And it's gotten plenty of it - an uncomfortable amount of it, if I'm honest.   

Over the years - and in particular since I lost my parents in 2016 and 2020, I've grown more grateful --for the family and friends I have, for the work I get to do, and in short, for the life I'm lucky enough to lead. Gratitude seems to grow alongside your gray hair and it feels relatively easy to be grateful, if harder to show your gratitude.  Compassion though seems a bit tougher. 

I've always tried to be a nice person. But that's just a steppingstone to compassion. Nice is giving up your seat on the subway to a person who needs it; compassion is knowing that the person in your seat needs help navigating the subway, and you help them. It's the difference from being polite but detached to being present and selfless. 

I've felt so much compassion -- from my care team, yes, but also importantly from my friends, family and colleagues -- that it's really hard for me to embrace the outpouring. I worry that I won't be able to reciprocate when the time comes; or that I'm not worthy of their compassion. These are silly thoughts, I recognize that,  and I'm not begging for validation here. Just an observation that it's a bit overpowering if wonderful to receive all this -- and that it pushes me to be more compassionate in all that I do. To borrow a bit from Jack Nicholson in As Good As It Gets, it makes me want to be a better man. 

***

On the more mundane front, I'm at day +3 (day zero being when the stem cells were infused) which has me tethered back to my friend the infusion pole. It's the start of a chemotherapy agent doing duty as an immunosuppressant. My counts are dropping as expected, and so we remain on course.  

Day +2: Life in the Hospital

 Time sees to float in a hospital. And not in a wispy-warm-summer-cloud-like way, but in a sailboat-on-open-seas-on-a-windless-day kind of way. You feel adrift - unanchored to the shores and responsibilities of daily life. Maybe that's why the care team writes the day and date on the little white board in my room. It's a tenuous grasp on the life that's happening outside. But here on the inside, we float on, with hope that the wind is at our back and pushing us to shore.

It's not that there isn't a schedule; hospitals are very much about schedules. Those may change from day-to-day or be modified by scheduled procedures or things like, oh, getting brand new stem cells,  but since my chemo infusion stopped, we've settled into a regular routine - and routines themselves are the backbone of a hospital stay.

Vitals, Drugs, and Round, Oh My

The main components are vitals, drugs and rounds. Over the next 1-2 weeks, my blood counts will bottom out as the full effects of the chemo take hold. So that may cause some change in the routine, as I'll likely need platelet and red blood cell transfusions, and will have less energy to do lengthy blog posts. But here's what a typical boring morning looks like for me. And I say boring in the most grateful way possible;  boring in a hospital is a good thing!  

0500 - 0600 Wake up from deep sleep. Scramble to find my mask before nurse makes it into the room. It's her/his last visit before the morning shift and she's here to check in and administer morning pills. Take my pills and stay awake because...

0600 Knock knock. Hi I'm here to take your vitals.  Every four hours without fail, the patient care assistant (PCA), aka nurses's aid, shows up to take my blood pressure, oxygen, heart rate, and temperature. She leaves. Mask off. Back to sleep before....

0730 - Knock Knock. Scramble for mask. New day shift nurse comes in, checks in and administers any pills that weren't ready to be given earlier. Does a quick listen of lungs, stomach. Departs. Debate for 30 or so minutes if I should leave my bed for the comfort of my chair. Decide to order some breakfast, in anticipation of being hungry in 45-60 minutes, because...

0830 - It takes that long for meals to make it up to rooms. Mmm, what passes for edible this morning - whole wheat blueberry pancakes and sausage pucks. Meh. But the banana and orange juice hit the spot. Either way, gotta get food in me. Food, sleep and exercise are important for recovery. A point that's reinforced by...

0930 - the attending physician during her rounds. She's accompanied by two physician assistants (PAs) during their morning visit. Today we talk about New Yorker versus New York Times crossword puzzles. And a little bit about my health too. I receive and A+ for my recovery. That seems to put a lot of pressure on me to maintain the grade, but still nice to be teacher's pet instead of class clown. Hmm, maybe I should get on the bike, but first, I should wait for... 

1000 Hello. I'm here to do your vitals. Sure c'mon in. I was just going to take a ...

1030  Quick spin on the vintage exercise bike in my room. Nothing too strenuous or anything that would work up a sweat and require...

1100 a shower. I call the nurse's station and my RN comes in to cover up my port for one of the highlights of my day, a nice hot shower. Aahhh, feels good but once dry I have to remember to also do the anti-bacterial wipe down, with these special warm wipes. Weird at first, but you get used to it. I'd like to say, just like hospital food, but I don't think I could ever get used to hospital food, especially when battling nausea - which is why there is a special menu for oncology patients that has a lot of calorie-dense food including protein shakes. It does the job but not the same as either home cooked or take out food, but still I have to...

1200 order lunch. Feeling bold, I thought I'd try for something off the fancy oncology menu - but the first three items I ask for are all out of stock. I resort to the one item on the menu that it's hard to screw up - a salad with grilled chicken, and...

1300 when it arrives, is actually pretty damn good. A great sign that my nausea is abating a bit. 

Antibiotic Challenges and Quiet Afternoons

The afternoon is a bit quieter. There are still the 4-hour vitals check, more meds and evening rounds from the PA, but usually more time to read, write, or watch whatever the sport du jour is. As I write this, I'm just waiting for the 11:00 pm vital check before I go to bed. If you're doing the math, you know that it should have been a 10 pm vitals visit, but we had a little schedule divergence today. I participated in a two-hour drug allergy challenge. I'm not sure that's the right name for it, but it was a chance to ensure I wasn't allergic to a particular class of antibiotic that I might have been allergic to. It's a lot of observation with the nurse in the room as they gradually up the dose. Good news: No allergic reaction and so that class of antibiotics is now safe for me. But it threw off the vitals schedule. 

And that, my friends, is what passes for excitement here in 4C-56 at 75 Francis Street. Look forward to be drifting back into the real world in a few weeks. 

Happy Birthday to Me

 The stem cells are in. Infused through my central line from 8:15 pm to 9:30 pm on Thursday, March 16th (my new birthday, or rebirthday). As everyone warned me, it was a bit anti-climatic. After blessing the cells (more on that later), a bag resembling tomato soup was hung on my IV line, and just like that, the stem cells that a 20-year female had donated yesterday, were now dripping into my veins. 

While I wasn't surprised at how mundane it was to hang a bag of stem cella, I was at least a little surprised at how I felt. It's equal parts relief and hope -- relief in that this long journey which began back in July 2022 with my transformed lymphoma re-diganosis has finally gotten to this point. I hadn't realized how this burden of waiting had weighed on me. When the cells started dripping, I felt a wave of lightness (not to be confused with light-headedness) wash over me. Sure, there will be days ahead when darkness will try to play its king-of-the-hill game with my psyche. But for now I'll embrace that lightness which shows up as a hope this is the beginning to an eventual life without lymphoma. That's our hope. 

We are not a church-going or temple-going family, but we had the Brigham chaplain offer a humanitarian blessing of the stem cells, which was nicer than I thought it would be, and not as uncomfortable as I thought it would be. The blessing included a passage about the love and support received -- and needed --  from family, friends and colleagues. It was a nice moment for me to think of the tremendous support and love I've felt - especially during these last few months. In the form of comments here on the blog, on Facebook, through text message, phone calls, and even Zoom meetings, it has been uplifting. 

The chaplain could have added nurses and doctors and my entire care team to that long list of supporters. It wouldn't be original of me to write about the incredible compassion and skill that my care team exudes but the trait that sticks out the most to me is that they seem unflappable. They display a calmness that is contagious - maybe the only thing you want to catch in a hospital. 

So what's next? Recovery. My counts (red blood cells, white blood cells, etc.) will continue to drop as the chemo continues to take hold. So there will be fatigue, which makes sense. Anemia - or low red blood cells often shows up as fatigue. And increased risk of infection - also makes sense, as you need white blood cells to fight off infection. So I'll be here at the Brigham for another 2+ weeks; expectation is that it's 13-16 days from today. But it all depends on how well, and how quickly my body recovers.  

So keep that positive energy coming my way, between it, my Ted Lasso Believe light, the Chaplain blessing, and the care of my transplant team, we'll get through this. 

Day -3 and counting

We all know that the road to recovery, any recovery, is not a straight line. Each day is filled with its ups and downs, its twists and curves. That's about how it goes here. As we are wrapping up the third day of chemo, the side effects have been minimal, but real and we're dealing with them (GI issues/mild nausea, if you were wondering). One of the hardest things is being constantly tethered to my IV pole. Although the chemo doesn't take all day, when it's not running, I'm getting fluids 24/7. And there are the physical challenges of the constant fluid intake -- namely that outtake matches intake so it's not a lot of consecutive hours of sleep -- but as always it's the mental challenges that is as or more difficult.

Everything takes longer with an infusion pole. From the simple act of getting up from my chair, to the more obstacle-like event of walking the 95 steps that take me from door-to-door in our pod unit -- it just takes more time. And that is frustrating, particularly for someone as impatient as me.  But there's only about 48 hours more of constant fluids, hopefully, then we might get a little break.

Next week is going to be hard, as the effects of the four days of the chemo may knock me out a bit, but then again, maybe it won't. 

Will update as I can.

Day -5

I'm torn between an update on the schedule and a general 'how-ya-doing" kind of post. So let's see where this goes. The second round of busulfan is infusing as we speak; for the next three days, this schedule continues - two rounds of busulan and one of fludarabine. 

The actual infusion is barely noticeable. It's just the side effects that you have to deal with and so far so good - no bad side effects yet and my appetite remains normal. But I know that as the chemo continues to build over the next four days, the side effects will likely start showing up. We'll just have to tackle them when they do. 

Cleary one of the biggest challenges will be boredom -- even with books and magazines to read shows to stream, sports to watch, games to play on the phone. And the adjustment hasn't been a gradual one. Work and life in general had been very busy these past few months, and in particular, these past few weeks. It's like going from 60 mph to zero in an instant - it's bound to cause a bit of a psychic jar. 

While I'm sure battling the boredom will be an ongoing fight, we'll get into the hospital routine and tackle it day by day. It's like going out for a long run - if you think at the start of it how far you have to go, you'll never make it to the end. So I'll treat this like I do on those long runs I used to run -- knowing I'm almost a quarter of the way through. And that after tomorrow, I'll be at the halfway part for the main chemo.  Then it's rest day and new stem cells. We'll get there, one step at a time.

Til tomorrow.

Here We Go

We'll do this one mostly by pictures. Port was placed today (I have a picture of that, too, but will spare you). It was a very easy procedure and all went well. Most of the day was just waiting around but by about 4:30 or so, I was in the room. It's not quite as big as the photo makes it out to be, but it's private, quiet, with a mini-fridge and a TV, a couch-ish area and a comfy chair besides the bed, and of course, a private bathroom. 

While I still have an appetite, and in the midst of lots of tests (taking some blood, COVID test, Mersa test, EK), was able to get a dinner order in.

And finally, after dinner, my belongings made it up to the room, including my cozy new blanket, lovingly handmade by my sister.

Chemo starts tomorrow so the road will get a bit harder. But we've found a place for my Believe light :)

The Transplant Schedule

 This is a little weird. Since 1989, I haven't taken more than two weeks off work. And yet, here I am with an open-ended leave that will last a couple months at least. I have two emails in my inbox. I have no meetings on my calendar. It feels like I'm leaving my job, or getting ready for a big vacation. After all, I have my suitcase packed for my 3+ week stay at the hospital. 

My bags are packed (almost),
and I'm ready to go (sort of)

But of course, this isn't a vacation. 

The Stem Cell Transplant calendar all centers around your transplant day. That's day zero. But the process starts before that. Tomorrow, I get my port placed and admitted to the Brigham. Then Saturday through Tuesday (days -5 through -2), it's chemotherapy or conditioning to eliminate any potentially lurking lymphoma cells that might not show up on PET/CT scans but could be hiding out, waiting to divide and conquer. 

Day -1 (Wednesday, the 15th) is a rest day. It's  also the drop date for season three of Ted Lasso, so there's that.  Then on the 16th, it's the new stem cell party. It's not an overly long process, and from what I understand, it's akin to getting an infusion of any blood product. Days +3 and +4 bring an infusion of cytoxan, an immunosuppressive treatment. After that, it's recovery as my immune system starts to build itself anew.  And if all goes to plan, about 13-16 days after transplant day, my immune system will be strong enough that I can be discharged and begin the home recovery period.

So definitely not a vacation, but maybe the prelude to a long-term vacation from lymphoma. And that's something I can believe in.

Caregiving and the Heaviness of It All

 Stacy was discharged from the hospital Monday night.

That's how I had intended to start this post. I'll get to that story shortly, but there's a lot rattling around my brain this week. I'm now five days from being admitted; five days from voluntarily turning my life upside down; five days from making myself feel like shit so I can hopefully feel better for a long time; five days from stepping away from my friends and colleagues who occupy so much of my time and account for so much of my identity; five days from making life so much harder for my family.  

That's been weighing on me a lot these past few days, with a physical heaviness that I could feel pushing down on my shoulders and back, and so loudly that it was sometimes hard to hear a casual conversation. 

Part of the weight is the uncertainty - I just don't know how I'll feel or how quickly I'll recover. Will I be able to work part time after two months? I don't know. When will I be able to walk my dog again? When will I be able to see people again? When will I feel "normal" again -- and not a new normal, just plain old normal? When will I be able to run again? I don't know any of that.

But part of the weight is the heaviness of the burden that this will put on my family. I got a brief glimpse of the caregiver role this past week when Stacy spent three days in Miriam Hospital  After experiencing intense abdominal and back pain that had us flashing back to the summer and my symptoms, and understandably freaking out a bit, a trip to the  ER led to a diagnosis of a whole lotta gallstones and an emergency gall bladder surgery for Stacy, and a taste of caregiving role for me. She was discharged last Monday night and is recovering well. But in the short time in the hospital and the ensuing week at home, I caught sight of the emotional burden of caregiving. And it's not light.

But here we are. We start down the path in five days. Some uncertainties will go away; others will emerge. And in the process, we will begin what we hope is the road to long-term recovery.