Good Journey [Josh de Lioncourt]

“Look into the eyes of any patient man,

Whether they be amber, green, or blue…

There’s a piece of God staring back at you.”—George Michael, Patience

I’m sorry I haven’t been up to posting updates over the last couple of days. I haven’t felt well, and even now, I don’t expect this to be a long entry.

The last few days have been rough. I’ve spent much of them sleeping, dealing with the fact that my back has been painful from being in bed so much, and working through a complication.

My stomach has been pretty severely distended. Over the last couple of days, they’ve been trying to work out the exact cause. It has made sleeping or even sitting upright very uncomfortable—to put it mildly. It’s also made it extremely difficult to eat. Coupled with fatigue and the fact that the hospital is more or less a miniature City that Never Sleeps, it’s been miserable.

My immune system and platelets are pretty much at rock bottom now, but the nurse tonight assured me that things will only start going up from here.

The stomach distension is a little better than it has been, so I’m hopeful that I’m on the right track.

I wish I had something more entertaining to share. The best news is, I suppose, that despite how hard the last few days have been, this period is often worse for SCT recovery patients.

Maybe I do have something entertaining for those of you who, like me, enjoy a stupid pun. SCT patients require a lot of patience.

Good night! Remember, I’m here every night at the Good Journey Comedy Club—unless I’m not!

Even if I had something really interesting to write about tonight, I wouldn’t have the energy to get it down. I slept today, and that is all.

I’ve entered the worst, hardest phase of recovery which will last the next few days.

Just got to keep on keeping on.

I don’t have a lot to say tonight. I spent significant portions of the day asleep or so foggy with fatigue that it was hard to even think. This, they tell me, is normal. (For whatever “normal” means in this very abnormal context.) It’s very unsettling to fall asleep entirely unexpectedly. It’s like when you ignore the message from your MacBook that “Your computer will sleep soon if not connected to power.” Within a minute or two, it shuts down. That was me all day!

The big excitement came near the end of the day. The nurses brought in a small recliner for me to sit in so I don’t have to be in bed all the time. (My back will thank them.)

I haven’t really written about how small my room is. It’s tiny with a lot of stuff packed into the space. In the room is the IV, the bed, a window with a bench below it for visitors, a small closet, a sink, one of those rolling trays, and a chair. There were, until today, two of those rolling trays. One of them had to go to try to squeeze a recliner in beside the bed.

This was a project. First, I had all kinds of stuff on the tray beside the bed. Much of this was either for charging my various devices or items I need to have always within reach, since I can’t currently get up without a nurse present. (Partly because of some rules that are a bit too extreme, and partly because I’m tethered to the IV machine.)

To get the recliner in the room, they moved the bed and then still didn’t have enough room. So they shortened the bed—while I was still in it! I had to fold up my tall frame for this procedure, and let me tell you, it was the most fun I’ve had in a while!

They got the recliner into position, but then couldn’t figure out how to return the bed to the proper length while I was still in it. Oh, and through much of this an alarm was blaring that they had inadvertently set off moving the bed.

At this point, the now retired tray table with my chargers and personal possessions was still wired up and in the way of me relocating to the recliner so that I was out of the bed while they tried to fix it.

My brother-in-law and sister to the rescue!

I’d brought a lap table here which has now been repurposed into a portable nightstand of sorts that can sit on the recliner beside the bed while I’m not using the recliner. Where there is a will, there is a way.

I’m told that the next three days—give or take—will be the roughest. If today was any indication, I believe it.

That said, I’m faring better than many people do at this stage.

The nurses here, on the whole, have been really great. They are attentive, empathetic, and thorough.

But I’ve been thinking about the strange relationship we patients have with our nurses. I find myself constantly thanking and apologizing to them for things that, in any other context, would not be things you would thank or apologize for.

“Thank you…for stabbing me with a sharp implement for the fourth time today!”

“I’m sorry…but I’m attached to this huge machine and I really need to use the bathroom, because said machine is constantly pumping fluids into my system that have to go somewhere in the end. I’m sorry about that, too.”

“Thank you for the pills that will make me nauseated!”

“I’m sorry but I can’t reach the trash can because of this machine I mentioned previously that is plugged into a huge hole that I thanked you for poking into my shoulder.”

“Thank you…for waking me up in the wee hours of the morning to suck blood from my veins.”

But the thing is, in this context, I really mean all those “thank you”s and “I’m sorry”s. A stem cell transplant is a marvel of the universe and these are the people bestowing that miracle unto me and keeping me alive through the process. So I am grateful, and I’m sorry when I make their jobs even a tiny bit more difficult.

Three days out from transplant and my immune system, as represented by my white blood cells (WBC), is starting to bottom out. Soon there will be nothing left, which is exactly what needs to happen so that the new marrow can take over. It’s a little unsettling to know that I will be without any protection from the world at all for the next week or so.

I felt pretty rough this morning, but that was mainly nothing new. My hemoglobin was very low, and after they transfused some blood back into my veins, I felt mostly okay for the rest of the day. Even took a walk this afternoon through the halls of my floor, which does wonders for me physically and mentally.

I’m still eating, albeit less than usual.

Cabin fever is setting in now. Being stuck in a tiny room day and night without getting outside is a strange experience. I believe we are easily reaching the longest I’ve been indoors at a stretch in my life, and I still have a long way to go while we wait for my numbers to start returning to better levels.

My potassium is in a better place today, so let’s hope it stays there.

Thank you for reading my blog and to everyone who has sent me emails and messages of support and commentary on my entries. I’m sorry I haven’t been able to reply to everyone yet, but please keep them coming when you’re so inclined. It really does boost my psyche.

Today’s episode of SCT Street was brought to you by the letter K!

The symbol for potassium is K for some inexplicable reason. Mine happens to be a tad high at the moment, which is not unusual after the chemo and radiation. They need to keep an eye on it and manage it properly.

There are a couple of things that could have caused it, and they are working out which one it is for sure, but I’m going to talk about the most likely one.

If you’re like me, your knowledge of potassium is that you know it’s something you need and it’s famously found in bananas. (I hate bananas.) But potassium is also stored inside the cells of our body, which is good.

I went through chemo and radiation to kill off my bad, cancerous cells so that the stem cells can plant and grow into new ones for me. All that chemo and radiation caused the cancer cells to die—but they don’t do it all in one go. They die over several days, and as they do, the potassium they were carrying gets dumped into my bloodstream.

So that’s probably why it’s going up. If it gets too high, there can be some dangerous consequences, so they need to manage and watch it for a bit now.

So my cancer cells (evil monkeys) are basically dropping all the bananas they were carrying into my bloodstream as one last “Screw you!” on their way out. Nice!

Aside from that, I felt pretty good in the morning, pretty terrible in the afternoon, and more or less average through the evening. They keep telling me that next week will be harder. So I have that to look forward to.

I shall endure.

So some of the side effects of the chemo caught up with me today—and there will be more to follow. The first half or so of the day I spent feeling pretty rotten. (The details of which you would want to read even less than I would want to write them.)

I am still eating, albeit in smaller portions. For now, I’m off the endless fluids they’ve been pumping into me since I arrived to help flush the chemo through my system.

I spent the day with my family, though for much of it I wasn’t much company. I slept some and took a walk through the halls when I felt up to it. When you’re going through this, you take the small victories wherever you can find them.

My doctor came to check on me. There’s a distinction to make here. My doctor is often not the doctor I see while I’m here. The doctors I see daily are those assigned to work this floor on particular weeks. Mine though, came up to check on how I was feeling. He’s very pleased with how everything is going so far, and marveled at my sister’s stem-cell-producing prowess! Go Sarah!

I’m settling into a diet that is starting to consist of a lot of sandwiches—grilled cheese, turkey, and roast beef so far. I’m finding it safer and more palatable than much of what I’ve already written about. Certainly better than chewy chicken tenders.

The road ahead is going to be rocky for a bit, but I find myself pretty optimistic now. For the next week or ten days, I’ll probably be feeling pretty awful. Some time shortly after that, I should start the long, slow process of bouncing back.

Which leads me to one other thing I’ve been meaning to mention here. It’s a strange experience, but here in the hospital—especially since I can’t just look out the window and see the day or night or even the weather—there isn’t any real sense of time passing. It’s like those old Infocom games when you’d issue the “wait” command, and the game would say, “Time passes.” In some of the games, something would actually happen if you waited long enough; in most, absolutely nothing changed whatsoever. All you got was “Time passes.”

That’s kind of what it is like here. Some time on Sunday afternoon, time just stopped for me. I’ve been thinking the day is Sunday ever since.

That thought lead me to another. Douglass Adam’s wrote once about that sleepy, drowsy time on Sunday afternoon when (presumably if you’re British) you take a nap, take a bath, make a cup of tea, and descend lazily into “the long dark teatime of the soul”.

That’s what the last few days feel like, and what I’m imagining the next phase of my recovery will feel like as well. “The long dark teatime of the soul.” There will be a lot of waiting—“Time passes.”—and a lot of simply existing in this strange twilight time that exists only to bridge the gap between “before” the transplant and “after”.

For the first time in a long time, I find myself thinking about the future in ways that aren’t exclusively about how I feel or how I’ll manage my MDS. I’m thinking about the things I want to do when I’m well again.

All I have to do is wait through this long dark teatime.

So the day finally arrived after more than two years of waiting. It’s been a long road.

It was a busy day. Doctors and nurses came in and out to see me throughout the morning; I got another blood transfusion; I ate all my breakfast!

“One small step for a man, one giant leap for mankind.”

That’s kind of what the transplant itself was. I’d been told many times that it is a bit of an anticlimax. The infusion of my sister’s stem cells only took about eight minutes, which is exceptionally quick. I had no immediate negative effects. These are all good things. You basically want nothing to happen. This small moment means everything—it just doesn’t seem like it yet. Not physically, anyway.

They monitored me for a bit before and after to make sure my heart rate, oxygen levels, and blood pressure remained stable. All was well.

I don’t really feel much right now apart from exhaustion. It was a long day, and the anxiety and anticipation leading up to the transplant used up a lot of my energy.

But it’s done. Now comes the hardest part—waiting.

Over the next week my old marrow will bottom out entirely. There will be nothing left to work with, making room for the marrow that is about to start growing from my new shiny stem cells. A few days or a week after that, we will begin to see the first signs of my new marrow taking hold.

It’s a difficult and scary time. I will essentially have no immune system and be living off of transfusions. I’ll feel the worst of the cumulative effects of the chemo, too. I’ll lose my hair. I’ll probably lose much of my interest in food. These are the prices we pay for a miracle.

I’ll take it.

My sister is convinced I’ll soon be sipping wine and listening to Taylor Swift (her pastimes).

I can think of worse ways of paying for a miracle.

That’s all I have energy for tonight. I have more I want to write about, but for now…

Good night and take care.

Yeah. I reused a joke from the same silly ‘80s comedy series. It’s just too appropriate not to.

Wow. There’s finally a moment to catch my breath. So much happened today. I’m pretty tired, but I find these posts as therapeutic for me as they are updates for the friends and family reading them.

My sister donated her stem cells today. They call this “harvesting” in the medical biz. They needed a minimum of 5 million cells from her. She gave them 27.9 million. How crazy is that? On Wednesday, I’ll receive 7 million of them, and the rest will be preserved if I need boosts during my recovery. Sarah was definitely an overachiever today.

Sarah was always the best sister a brother could ask for. I never would have believed it possible, but she even upped her game from that! How lucky am I?

While Sarah was donating her cells—I can’t bring myself to use “harvesting”—I received my final round of chemo. This was the big one. Much harsher than the first four.

At least for now, the side effects have been quite mild. Chemo effects tend to be delayed and cumulative, so it probably won’t last for long, but so far, I’ve dodged the worst of it. In fact, all things considered, I’m feeling pretty good. I had to chew on ice for about two hours, before, after and during the chemo. They say this is to prevent sores from developing in your mouth. At least for now, it seems to have worked. I did have some strange smell and taste for a little bit, which was expected, but it wasn’t as bad or as long-lasting as I anticipated. It was more like having a superhero’s sense of smell, and some things tasted a bit like burnt toast. As I write this now, both of those seem to have subsided. Apart from being tired—which I always am by this time of night anyway—I’m feeling okay. I didn’t have much of an appetite today, but I managed to eat, and never was particularly nauseated. I was a little queasy immediately after the chemo, but a few crackers helped with that.

The second act of the day was in Radiology. But let’s briefly review that situation.

It’s common for people with MDS to have enlarged spleens. The spleen basically decides to take it upon itself to try to compensate for the cells that my marrow isn’t properly producing. This causes it to grow larger and larger. (Mine is about 19 cm, or about 50% larger than it should be. We were told mine was by no means the largest they’d seen; some people come in with spleens that are three or four times the size they ought to be!)

The immediate problem with this is that it acts as a trap for the stem cells I will be receiving on Wednesday. That would mean the transplant would fail.

My brother-in-law offered up this brilliant hypothesis: remember the drug-induced dream I wrote about when the giant chicken was demonically ordering me away from its dice, which were, oddly, scattered across the floor of a huge room? His analysis is that the dice were representing the stem cells I’ll receive for the transplant, and the giant chicken was representing my giant-ass spleen. This is the best interpretation of this dream I have yet received, and it thereby rises to the top of the pile.

So I took a trip down to Radiology to have a low dose of radiation administered to my spleen. This will trick it into not trying to make up for my malfunctioning marrow anymore. That, in turn, will mean the stem cells won’t get trapped in it, and will also cause it to shrink down to something like a normal size.

So yes. “Honey, I shrunk my spleen—literally.”

Humor is what’s keeping me going right now. My sister and brother-in-law are among the funniest people I know, and their ability to make me laugh has been a sanity saver.

Only one more day to get through before the transplant finally happens after the long, long wait.

I went in with a lot of anxiety today; the harsher chemo and the radiation treatment were making me a little nervous.

Modern medicine is amazing. The day went much better than I could have ever expected, and Sarah got through the donation process with flying colors.

The giant chicken has been vanquished!

One more day and we can start vanquishing the cancer, too.

Today, I got through my fourth day of chemo. One more day of chemo to go.

It was a quiet day. My father-in-law visited for a while for the first time since I was admitted. It was great to see him. My wife got to visit with Jade while he was visiting with me. Throughout the day, many other segments of the family were here.

So far, I’m still feeling pretty well.

My sister, Sarah, who is my stem cell donor, wrote something that she’s given me permission to share here. It literally made me cry.

Love you, sis.

Honey, I Blew Up My Stem Cells

There are a lot of things I have done and would do for my brother, Josh. I’ve helped be his eyes since I was four years old; I’ve given him rides to places, guided him through Disneyland countless times, and I’d probably even let him have the last slice of pizza…probably.

But donating my stem cells? I never thought this would be a thing I would ever need to be asked to do, but here we are, and honestly it wasn’t even a question. I’d do anything for Josh.

When people (including myself) hear “stem cell donation” or “bone marrow transplant”, they often imagine something dramatic like surgically going into the bone. The reality is a bit different. They now can use your blood to collect stem cells. But there is a catch—there always is, isn’t there?

For several days before donation, I get injections of a medication that tells my bone marrow to go into overdrive and produce extra stem cells. It’s basically my body’s version of being told, “We need all hands on deck!”

The good news? It works.

The less good news? My bones have apparently decided to file a formal complaint.

Nobody really prepares you for the strange experience of your skeleton feeling like it just completed a marathon. The bone pain and body aches are real. Every ache comes with the reminder that my marrow is working overtime, churning out the cells that could make an incredible difference for Josh. It’s weirdly comforting to know that feeling lousy actually means everything is going according to plan.

I’ve joked that I’m becoming a human stem cell factory. My body is producing so many extra cells that I feel like I should have an “Under Construction” sign hanging around my neck.

“Honey, I Blew Up My Stem Cells. Literally.”

The truth hiding underneath the jokes is this:

I’ve never been happier to be uncomfortable.

Because every sore bone, every ache, every injection is for someone I love beyond words. It’s also only a fraction of what Josh has endured for the last two years, what he’s going through now, and what lies ahead on the other side of the transplant.

Josh has always been one of the people I admire most in this world. His many talents, strength, his determination, and the way he keeps moving forward through challenges inspires me every single day. If my body can give him a better chance at healing, then every pinch of the needle and every aching bone is a bargain I’d make a thousand times over.

Tomorrow is donation day where they will hook me up to a machine that will pump out my blood, extract the stem cells, and put my blood back in my body.

People keep asking if I’m nervous or scared.

The answer truly is: Not really.

I’m grateful.

Grateful that I was a perfect genetic match. Grateful that modern medicine makes something like this possible. Grateful that I have the opportunity to do something tangible for my brother when he needs it most.

Families show love in all kinds of ways—Sunday dinners, inside jokes, game nights, showing up when life gets hard. It turns out they also show love by temporarily turning themselves into overachieving stem cell-producing machines.

Who knew?

If I have to feel like my whole body spent the weekend doing CrossFit while having the flu so my brother gets a fighting chance, then pass me another heating pad and point me toward the next injection.

I’d do it again in a heartbeat—for Josh.

And hey, in the end we will share DNA.

We are one step closer to becoming He-Man and She-Ra when you think about it.

Today I got my coffee and my chemo pretty early in the day. So far, I seem to have avoided the worst of the effects of the chemo, but I’m told that is unlikely to last beyond Monday, when I receive my last and harshest chemo treatment of the process. That aside, many of the chemo’s side effects are delayed and won’t actually hit me until a week or so after the transplant on day 0.

Monday and Tuesday will be radiation days, so I’m sure I’ll have some to say about that, too. Monday will also be the day my sister donates her stem cells. So there are big things coming.

The nurses here have mostly been really great. I’ve had the same night nurse for the last three nights, and she’s gone above and beyond to make me comfortable and allow me to be as independent as she can under the circumstances. Tonight, we had a nerd moment as she assisted with the end-of-day cleanup in my room when a text message came in on my iPhone. The sound I use by default is the communicator chirp from the original Star Trek series. She recognized it and so it was fun to find a fellow Trekkie.

The day nurse today was also very nice. She was witty, warm, and just a joy to be around. These two have been the highlights for sure among the nursing staff since I arrived—although, to be fair, many of the others I haven’t seen enough of to have formed opinions about.

Yesterday, the mobility team took me for a couple walks around the floor. It was nice to stretch my legs, especially since after three transfusions, I was feeling pretty good. There’s a piano out there. It’s muted a bit so as not to disturb the other patients. I got to sit down and play it for a moment.

I wanted to play something that the three staff with us might recognize, so I broke out one of my favorite things to play—Careless Whisper by George Michael. Everyone knows that song, even if they don’t know it by title.

One of the nurses let out a startled little laugh when she realized what I was playing. That is always a nice thing to hear as a musician. Surprise and delight are the currencies of the creative.

I dozed off for a little bit this afternoon and dreamt of our dog, Jade. Counting down the days until I can see her again. Poor pup. She’s probably so confused.

One more day of the current chemo left, then the true trials begin.

Today was indeed a little quieter, although that’s because it started at 4:15 AM and the worst of everything was done by noon.

The morning started with me being wakened by the nurse from an unusually deep sleep for me. I jumped when I finally came to and the nurse felt terrible. Even tonight, as I was getting ready to end the day, she asked again if there was a better way to wake me up. She felt bad that she, as she put it, “scared the frig” out of me.

Once the blood draws, weight, standing test, blood pressure, oxygen, and maybe a few other tests I can’t remember because it was—as I said—4:15 AM, there was no hope to go back to sleep. This is how my days will all start while I’m here, so I’ve just resigned myself to that fact. The nurse and I have made a deal for tomorrow morning that she’ll bring me a cup of coffee to have when we’re done with the tests.

Turned out my hemoglobin was quite low still, so they started another transfusion around 6:00 AM.

Then, before my second chemo of the season—I’m leading the series 2:0—I had breakfast.

Let’s talk about food, shall we?

There are a few factors at play here. First, let’s just get it out of the way—hospital food is terrible.

Second, because of my chemo and the transplant procedure, I can only eat foods that are entirely, unquestionably, devoid of both texture and flavor, unless that texture is mush and the flavor is bland.

Okay, that isn’t quite true. I’m on what’s called a neutropenic diet, which is safe for people who have severely compromised immune systems, which I will have for the next several months to varying degrees. It does mean, though, that you cook the foods you’re still allowed to have to the point of unrecognizability. This, coupled with the blandness of most hospital food, is not great.

That said, I admire the kitchen for the transplant patients, because the folks in there are at least trying, and a few things have even been pretty good. Even when I couldn’t call them “good”, they at least were things I felt ambivalent about, and so I could get them down without too much trouble.

Take last night’s dinner. Pepperoni pizza! Sounds good, right? It actually wasn’t bad. It was a very thick pizza with sauce, cheese, and pepperoni. All the components were there. And let’s face it—pizza is pizza; even the most mediocre pizza is better than no pizza. Plus, I had a very strange experience with this pizza in particular. It had a very distinctive flavor that took me back to the snackbar at the drive-in theater when I was a child. I can still taste that pizza—pizza I ate while watching Christopher Reeves as Superman and ET: The Extraterrestrial. It was thinner than the pizza the hospital gave me, but it was still exactly that flavor. As I ate it, I marveled at the wash of memories from my earliest childhood. The pizza at the drive-in wasn’t good either, but dammit—it was pizza!

For breakfast this morning, there was a “cheese omelet”. It was an omelet insofar as it was made of eggs and what was, presumably, cheese. It wasn’t great, but I couldn’t actually honestly call it bad either. It was fine. It was the most fine of fines. Completely unremarkable. Sitting here now, twelve hours later, I can’t even solidly recollect what it tasted like. I ate it, and that is all there is to say about it.

Lunch was a little different. There was a cheeseburger with cheese, lettuce, and onions. The problem was that the only thing with any flavor was the onions—so it just tasted like onions. All of it. The bun, the patty, the cheese, the lettuce…all onions.

The sides of macaroni and cheese and green beans were likewise limp and flavorless—dare I even say…anemic? This was odd because the macaronis and the beans were both cooked so thoroughly that it was difficult to distinguish between them once they left the plate and entered your mouth. Was that a straight macaroni, or just a slightly bent green beans? Mysteries like these will never be solved.

But here was the big surprise: dinner tonight was chicken tortilla soup, a black bean burrito, and salsa. And you know what? It was all pretty good. Like actually good. Granted, I’m from California, and if you’re from California you’re probably a little bit of a snob when it comes to Mexican food. I moved to Pennsylvania nearly sixteen years ago, and the state does not boast about it’s great Mexican cuisine…because there isn’t any. Good Mexican food—hell, decent Mexican food—is nearly impossible to come by—so the bar is low. The burrito was spicy! The salsa had flavor! And not just flavor—good flavor! It was amazing! Where did this food come from and why is it here? Another mystery that shall never be solved.

All that aside, the desserts are consistently delicious. I’ve sampled the vanilla pudding, vanilla ice cream, and angel food cake. All totally lived up to their names. These are the apology desserts at the end of the meal. These are desserts that say, “We know. We’re sorry. Please forgive us.” And, dammit, it works. You do forgive them everything for the three spoonfuls of pudding you get in the tiny little cup.

Tomorrow I’ll try the chicken tenders. I’m hoping they’re better than the ones served on the Lander campus. (If you know, you know.)

Wait…

Did I think yesterday was a long day?

“Hold my beer,” said Day -6.

So…yeah.

There’s one issue that took up a portion of the day that I’m not going to write about yet. For one thing, I think it’s still to fresh for me to be objective about; for another, it’s unresolved. Unresolved stories are not fun unless they’re the middle part of a trilogy, and I don’t have the energy to write the SCT version of The Empire Strikes Back. Although, I can sort of see how that would go: “Luke, the doctor never told you what happened to your stem cells, did he…”

A lot of things happened today. First, I feel compelled to note for the record, as the coffee snob that I am, that the coffee available down in Radiology is significantly better than the coffee on the transplant floor. Why this is or even would be is outside the scope of this post.

Down in Radiology this morning, they made a mold of each side of my body. I have no real idea how the technical aspects work, but at least from my perspective it was as if I laid down on a trough full of sand with a sheet over it. Beneath me, the sand shifted and moved around on its own until an imprint of my side, head-to-foot, was created in the sand. Then they did it again on the other side. It was interesting and slightly disconcerting, since it felt like the sand was moving of its own accord to form the correct shape. Or…if you’re like me…like it was one of those troughs where Khan kept the Ceti Eels in Star Trek II. How’s that for nightmare inducing? (Nothing crawled in my ear, I swear.)

While I was down there, they also measured various parts of my anatomy in every conceivable dimension. How wide is my head? How deep is my head? How wide and deep are my knees? My ankles? My hips, waist, stomach, chest, shoulders, elbows…

It reminded me of the scene in Harry Potter and the Philosopher’s Stone when Olivander, the wandmaker, takes endless and increasingly more ridiculous measurements of parts of Harry’s body in order to match him to the perfect wand. (They didn’t subject me to measuring the distance between my nostrils, as Harry had to endure, but I wouldn’t have been surprised if they had.)

After that, I had breakfast and the second transfusion of the day. (The first had happened the night before, just after midnight.)

The transfusion was followed by fluids, followed by chemo. From my perspective as a patient, this really just amounted to a lot of different substances being pumped into my veins through plastic tubes.

While that was happening, my sister had her central line placement. She did great. Like me, it was very sore afterward, but she said having me give her the heads up on what to expect meant it wasn’t as bad for her, so that makes me happy. She’s amazing.

After visits from many combinations of family members, the day wrapped with a rousing round of Everything, Everywhere, All At Once, in which I had to clean myself as best I could with disinfectant wipes, had the bedding changed on my bed, had the dressing changed on my central line, and had to change my clothes. That was, now that I think of it, a lot of change.

As I write this, shortly before I settle in for the night, I am, as yet, having no effects one way or the other from the chemo. Whether it stays that way is to be seen, but so far so good.

The next three days should be a little quieter here at the hospital, as the only thing currently on the docket for me are chemo treatments each day. I’m hoping I can write here about other things on my mind. Monday, though, will be another crazy day like today.

I’ll just keep on breathing.

“Can you feel the love tonight?

It is where we are

It’s enough for this wide-eyed wanderer

That we’ve got this far”—Elton John/Tim Rice, Can You Feel the Love Tonight

What a day.

I woke up at 4:00 AM this morning, and though I really didn’t need to get up until closer to 4:30, I was too keyed up with anxiety to sleep any longer.

The day began with the placement of my central line. If you’re not familiar, a central line is sort of like a big IV in an artery or large vein that stays in your chest for as long as you need it. It prevents endless IV sticks, but also requires a procedure to install and remove.

I’d been getting myself worked up about it for quite a some time. While I can’t call any of it pleasant, it wasn’t as bad as I feared. The worst part, by far, was that I had worked myself up into a state during the prep for the procedure—right up to the line of a panic attack. (Panic attacks are something I’ve struggled with throughout my adult life.)

In the end, the procedure was a mix of…well, I don’t really know, because I only remember snapshots of the procedure interspersed with drug-fueled dreams from the sedative they used. Most of the dreams I can’t remember enough of to make sense of, but there was one that I remembered quite clearly afterward.

In the dream, I’m walking across a large room. On the floor, scatter helter-skelter like gravel, are thousands of six-sided dice. In front of me, in the far corner to my right, there is an enormous chicken. (This was the drugs, clearly.) The chicken stood a bit taller than me, and it was flapping its wings and speaking in a booming demonic voice. It told me that the dice belonged to it and I needed to get away.

I’m sure people can have some fun analyzing that one.

The central line is very sore yet, even as I write this some twelve hours later. But it’s tolerable. And hey! They just came to take blood and no needles were involved. Hallelujah!

The middle portion of the day was spent waiting for the call to tell us the room was ready for my admission. That call didn’t come. I assume someone forgot. My wife eventually got our transplant coordinator on the phone and we were finally able to get me settled in the room that will be my dungeon for the next month. My wife, sister, parents, and mother-in-law all came to see my room and get me settled. A He-Man action figure and a bouquet of paper roses sits on the window sill. A banner with Braille wishes hangs across one wall. Everyone is amazing.

The staff here have spent much of the last little while poking and prodding me. That is, by and large, what doctors and nurses do. I seem to have passed all their tests.

My family has all gone home; I’m writing this as I wait for my first blood transfusion of my stay and listen to the insufferable roar of the air conditioning.

I’m tired. I miss my wife and my dog. But I’m taking the first steps to healing.

All day today, I received well wishes from friends and family sending their love and support. It has been wonderful and humbling in equal measure.

Tomorrow, my sister receives her central line placement to be my donor. I wish she didn’t have to go through it, and love her to pieces for her willingness to give part of herself to help me heal.

Can you feel the love tonight?

I can.

This morning, I had my pre-admission appointment. Instead of seeing my official transplant doctor—he’s on vacation for a few days—I saw someone new who was quite nice. (It’s always a little nerve racking to meet a new doctor.) Everything checked out, and I was cleared for tomorrow’s admission.

At the ungodly hour of 6:30 AM tomorrow, I will be at the hospital to receive my central line. I have a fair bit of anxiety about this, but I continue to tell myself that it will almost certainly not be as bad as I’m imagining. So far, everything at this cancer institute has been easier and less unpleasant than the anticipation beforehand. I shall endure.

Until today, I have worn my hair quite long for more than twenty years. I’ve shortened it now and then, but it isn’t natural to me. I feel much more myself with long hair. Today, I had to have it cut. I’ll be losing most of it over the next few weeks anyway, so the hospital has a policy on how long it can be. I’m not especially vain, but it still makes me sad. My hair is a part of my identity—and while some people like it and some don’t—it’s me. Ah well. I shall endure.

The last part of the day was time spent with family—playing dominos and eating some truly spectacular Italian food; that’s likely to be one of the last decent meals I have for the foreseeable future. I shall endure.

Tomorrow, day -7, is admission day. What am I feeling? A mix of emotions that are jumbled and sometimes confused. Relief that this is finally happening and that there is light at the end of the tunnele; dread, for all the hardships, trials, and indignities I will be forced to contend with through the transplant and recovery; hope for life returning to a semblance of normalcy; sadness for all that I will be missing over the next many months.

As ever, I shall endure.

For a Stem Cell Transplant, they call the day you receive your new stem cells—the “transplant” day—day 0. The days of preparation, chemo, radiation, and so on leading up to day 0 are negative numbers counting down to 0, and the days afterward are positive, counting up through your recovery.

Today, I am ten days from transplant day. A whole lot is going to happen between now and then, and it really kicked into high gear today. We made our temporary move to a different part of the state to be near the hospital. Even after I’m discharged, I’m required to stay near the transplant hospital for at least a month or two. That means we will probably be living here for anywhere from two and a half months to four months. That’s a long time to be away from home.

For at least the next month, and likely a bit longer, I won’t be able to see our dog, Jade, which is one of the hardest things for me, personally. She’s staying with my in-laws, and will come visit my wife from time to time. I miss her already. Saying goodbye to her today was heartbreaking.

On Tuesday, day -8, I will have my pre-admission blood labs and consultation, and on Wednesday, day -7, I will have a central line placement and official admission to the hospital. (If you don’t know what a central line is—it’s terrifying. I’m sure I’ll write about it in the coming days.)

My hope is to update this blog daily with how the process is going. Days -6 through -1 are a lot of chemo and radiation treatments to kill off what’s left of my traitorous, malfunctioning marrow. I have some other, non-transplant related topics I hope to write about during that time as well.

The journey begins.

It’s July 1st, and today would have been the day I was admitted to the hospital. Things have changed a little.

The transplant has been delayed by at least a couple of weeks while additional testing is conducted. My feelings on this are complicated. The reprieve is nice on one hand—I get a little more time to take care of some things before the transplant and recovery. On the other, it feels a bit like prolonging the inevitable. Mostly, though, I don’t care as long as everything—and everyone—turns out okay.

Meanwhile, I’ve been thinking a lot about the various components of my life and experiences that have made me the person I am today, and I plan to write a series of entries about that soon—or, rather, a series of the handful of topics that I think might be interesting to readers.

We’ll see how that goes. The best laid plans…and all that.

We’re less than three weeks from my admission to the hospital for my stem cell transplant. I spent much of the day yesterday at the medical center, signing papers, going over the schedule, and understanding more about the details of the recovery process.

And it is a long process. Many things I was nervous about are a bit easier to cope with now that I have more concrete details. I will, for instance, temporarily lose my hair from the chemo I’ll get at the start of the procedure. It’ll come back. Initially, this seemed like an unknown—maybe I would, maybe I wouldn’t. Now at least I know for sure.

Next week, I undergo another bone marrow biopsy. This is, mostly, a matter of confirming what they are already sure of—that is, that the MDS hasn’t progressed to a point that additional treatment is needed before the transplant can happen. I’m not looking forward to it, but they have assured me that this one will be performed differently than the first one I had. I will be heavily sedated and won’t remember any of it. That sounds great to me!

There’s a lot to do between now and admission. That’s probably the most overwhelming part right now.

In the coming weeks, especially when I’m in the hospital for the month of July, I hope to write more here on other topics than just my medical situation. The Masters of the Universe film was released, and I want to write a little on the film and MotU in general. I also have some other blog entries that I’ve really wanted to get to and just haven’t had time for. I can’t focus exclusively on my illness or the transplant; I need some topics to distract me as well. I hope you’ll continue along with me on this journey.

Before we get started, just a quick bit of housekeeping. A few readers of this blog requested a way (other than RSS) to subscribe to new posts. If you click the Subscribe link above, you can get posts delivered automatically to your email.

It’s been a while since my last update. For one, our beloved golden doodle, Jade, had serious complications from a surgery she had in April. She’s well again now—our miracle girl!—and we are so relieved. I also found a way to start writing fiction again for the first time in more than two and a half years. Depending on how everything plays out, I hope to have a new novel published this summer, and its sequel not far behind.

But in terms of my Stem Cell Transplant, a tremendous amount has happened over the last eight weeks or so as well. I have been the subject of quite a few medical tests to rule out as many potential complications that could arise during the transplant as possible. Those tests have, in the end, all gone as well as I could have hoped for. My heart and lungs are in good shape, I’ve grown out of an allergy thatcould’ve proven problematic, and I have been deemed fit to proceed.

I do have one more test, scheduled for tomorrow. It’s an ultrasound to measure the size of my spleen. (That’s such a funny word, “spleen”; I can’t quite hear it without translating it into an absurd Monty Python voice). It seems my spleen is enlarged, which is very common for those with MDS. As it was explained to me, if it is above a certain size, a step will be added to the transplant procedure to compensate for that.

My sister appears set to be my donor. She turned out to be a perfect match for me. I wish she didn’t have to go through this with me, but I’m so incredibly grateful at the same time. She’s an amazing human being. She and my brother-in-law are uprooting their lives (and the lives of their two adorable dogs) on the other side of the country to stay near me and my wife as the transplant and the initial stages of my recovery proceed. I am so lucky to have an incredible family across the board.

Although final scheduling is pending, the transplant is likely to begin in mid June or so. It’s scary, but also a relief to see some light at the end of the tunnel. My recovery will be long—about a year in total—with three distinct phases. The SCT phase will be about 30 days in the hospital. For two months after that, I will be discharged but required to stay in close proximity to the medical center, which means I won’t get to go home for three months or so. Finally, the last nine months consist of routine checkups and procedures to make sure the covery is on track.

My hope is to continue updating this blog as everything unfolds.

Thank you all for your love and support.