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  • Writer's pictureBostnMike

Well, that was... Unexpected

Updated: Sep 14, 2023

My apologies for the delay, but I’ve got a couple of good excuses (in the shape of hospital stays) – more on that later.


Today is DOT+28 (September 13th), and when we last left our “hero,” I was five days post-transplant, sitting in the front row of a roller-coaster (in the dark), waiting for the “thrill ride” to begin. Having stepped off the ride 21 days later… I would like to speak to the manager.


Don’t get me wrong; I love a zipline; speed, dips, loops, splashdowns, I’m all in for it… however, near-death experiences… #NotAFan. But I’m getting ahead of myself. For the benefit of structure, I will segment this into 5 “Chapters.”


Without further ado… here we go.

Chapter 1: Is This Thing On? (DOT+ 6-8)

As my white cell and platelet counts continued to drop, I was clearly barreling my way towards Neutropenia (zero white cell counts) and bracing for “the worst.” It was a bit of a “meh,” and overall, it wasn’t horrible.


Each day’s trip to the clinic was relatively routine. My electrolytes were taking a pounding from the chemo (which was expected). After a quick set of labs, I knew I would likely get a bag of any combination of the following: Calcium, Magnesium, and Potassium. They can all run simultaneously, so it wasn’t terrible. The average seat time for the infusions was about 3 hours.


The worst of it was Day +8. I was super tired, irritable, weak, with no appetite (and still don’t have one). So, every bite or sip was a real labor. With that said, being at home made it tolerable. I was not seeing any fevers, but regulating my body temperature might have been the most frustrating part of it. I would swing from freezing to sweating within seconds, while my thermometer would regularly read 98.2. However, with no other signs of infection or illness, “JoJo and Co” said it was fine. The parting message from the Doctor during my visit on DOT+8 was, “If you’re going to spike a fever, it’s going to happen in the next day or so.”


Chapter 2: Well, that was… Something. (DOT+ 9-11)

I should have asked that Doctor for the winning lottery numbers. DOT+9 started just like the others, with some electrolytes and labored eating. Then, at ~4:30 PM (almost like clockwork), insert 100.6 fever here. So, I called the clinic and slid in just in time to avoid going through the ER to get admitted.


After collecting 6 bottles of blood for cultures (3 from my line) and 3 from a “peripheral” (my arm), I made my way to Duke’s central tower and over to “10A” the Adult Bone Marrow Transplant Floor.

Going into this, I knew admission would be at least two days while the tests would look for any sign of infection, and regular doses or several broad-spectrum antibiotics would be “on tap.” I met the team, lots of fantastic nurses, and my in-patient PA Kim, who was super kind, and the whole team made me feel at ease.


And so, the buffet of antibiotics was ordered, including Vancomycin. And I found my first “allergy” to a medication. After a couple of hours of the drip, my chest was red. I was super itchy and felt like I was overheating. Apparently, this is a somewhat common reaction. I was informed this is something called “Red Man’s Syndrome.”


Now, with respect to Native Americans and given professional sports teams are having to change their names… perhaps the medical community should reconsider their nomenclature. Since the Washington Redskins were originally so “creative” with their renaming to “The Washington Football Team,” might I suggest “Hot ‘n’ Itchy Antibiotic Feeling” instead of “Red Man’s Syndrome.” Just a thought.


Not to worry, the remedy is slowing the IV rate and taking some Benadryl before starting it, both of which did the trick.


Throughout my stay, a myriad of tests were run, all of which came back negative. That, coupled with Tylenol to stabilize my fever, I was sent home after 3 days. So, despite the hospital stay, things were moving forward relatively “easily,” and I was still trending towards an early discharge from the clinic in Durham.


Chapter 3: Long Days with No Hair (DOT+ 12-15)

Like the outpatient days before the hospital stay, when I resumed treatments, they included various electrolytes. But a new “enemy” emerged: Phosphate. Unlike Magnesium, Potassium, and Calcium – all of which could be completed in 2 hours or less depending on the dosage. Phosphate is a minimum of 3 hours. The first couple of days were 4 hours each. In the grand scheme of things (especially with the knowledge I have of what would come later), 4 hours in a chair was not the end of the world, but it was mind-numbingly dull at the time.


I also realized I was “shedding” and learned a new magic trick during this time. I can remove chunks of hair with just my thumb and forefinger. I knew it was coming, so when I got home after one of those extended treatment stays, I broke out the clippers and razor, and I’m now actively looking for auditions for “The King and I.” All factors considered a break from daily shaving isn’t that horrible, and my “Boston Scally Cap Collection” is now in full rotation.


Chapter 4: From Now On (DOT+ 16-19)

With Phosphorus levels finally back to normal, treatment times shortened, and on Friday, September 1st, I was discharged from the clinic’s daily treatment, just in time for Labor Day weekend! (Not that I had any plans). In this case, Discharge means daily visits in Durham are over and would be replaced by weekly visits with my oncologist back in the Raleigh location.


With the Discharge, the clinic asked if I wanted a “party.” Allyson quickly answered for me and said, “Yes, he does!” The party consisted of me choosing a song. JoJo served as DJ as I walked out of the clinic while the nurses cheered and waived pom-poms, and just before exiting, I rang a bell, signifying the end of this phase of treatment.


I chose the song “From Now On” from “The Greatest Showman Reimagined” Soundtrack. So, instead of being performed by Hugh Jackman, it was performed by the Zach Brown Band. They did a killer cover. I highly recommend having a listen.

I must admit, I did not expect to get as emotional as I did, but I did get a little choked up.


After the Discharge, I went to the Radiology clinic for removal of my central line. I will spare you the gory details; let’s say after 2 doctors and 4 yanks, I was both free and traumatized. And I’ll never be able to unsee it.


Chapter 5: From Out of Nowhere (DOT+ 20-27)

Tuesday, September 5th, would start out simple enough. I met with my oncologist in the morning. I had some very mild cold symptoms, and out of an abundance of caution, he ordered several respiratory tests and a chest X-ray. All of which came back negative… but I felt a little off.


And then, at 6:00 PM, the shit hit the fan. I was sitting in my chair when suddenly my heart

felt like it was pounding out of my chest. I could not catch my breath, and I was feeling a squeezing chest pain. I’m thinking to myself, really, a heart attack! WTF!? I ran an ECG on my #AppleWatch to find no signs of a cardiac event, but my heart was cruising along at 187 beats a minute. Since I had not just run a marathon, I knew something was very wrong.


As you might imagine, the next step was a call to 911. EMTs arrived within a few minutes, and after trying several different meds to slow my heart rate, all of which provided unstained improvement, I was on my way to Duke’s ER, where things got pretty scary.


My heart rate was down to about 160-170 beats per minute, but (when they could find it), my blood pressure was in the neighborhood of 60/35. Hello, Tachycardia. They cut my clothes off as Docs, Nurses, and PAs swarmed around me. In minutes, I was outfitted with 3 new IVs and an “A-line” (IV measured blood pressure via the artery in my left wrist). If you’re wondering, I give the placement of an A-line one out of five stars and would not recommend it.


ECG cables draped on me, I resembled a medical bowl of spaghetti… chords and wires everywhere. While all that was scary, it wasn’t until they applied the defibrillator pads (“stickers”) to my chest I started to freak out mentally. They never had to use them, but waiting to hear “clear” was as scared as I’ve ever been. I’ve never actually feared for my life… until that first night in the ER.


I was severely dehydrated, and they pumped 4 liters of fluid into me in a very short window (a couple of hours). Did more blood cultures and a bunch of other tests. After getting the complete human pincushion treatment and about 3 hours in the ER, I was moved to the ICU, where I would spend the next 3 days before I was stable enough to be transferred to the Bone Marrow Transplant Unit.


My heart rate was now down to 130+, and my blood pressure, while still low, was stable enough to transfer back to “A10”.


I was greeted by the lovely Lexi (my PA for most of my time in the unit this time). She helped put me at ease as she went over their plan to continue to stabilize me.


She listened to me and provided some sound counsel. I had been on some strong pain meds for quite a while, and during my 3 days in the ICU, I did not receive any of them, so not only was I dealing with Tachycardia, but I was in the throes of withdrawal.

Initially, I thought, what better time to get off them than while in the hospital? Lexi was very supportive, and we implemented a plan to manage this. She deftly and subtly explained, “I didn’t need to be cold-turkey a hero,” … and she was right.


In addition to managing the cardiac symptoms, I also had to navigate some edema from the massive amounts of fluids pumped into me in the ICU. My feet and ankles were as wide as my calves, my hands looked like MMA gloves, and I was also dealing with “mild” pulmonary edema. The fluids opted to hang out in my tissue rather than my blood, which can often happen when they are administered so quickly. The nuance in my case was that the meds typically used to flush fluids could adversely affect my delicate blood pressure.


After 5 days, we got there. My heart rate is still slightly elevated (1-teens), my blood pressure is “low-normal,” and the edema is gone.


If you’ve gotten this far, thanks for hanging with me. This was a bit longer than my usual four-minute read, and I left a bunch out! It’s been very cathartic to jot this all down.


I have a follow-up meeting with my oncologist tomorrow, and I will learn more about the next steps as we look at “Phase 3.”


As always, thank you all for your messages, texts, etc. And a special thanks to the team at Duke (Lexi, Kim, JoJo -who came to visit me while I was admitted) and the Docs, Nurses, etc., who helped me ride the last leg of this roller-coaster.


And yes, I’d still like to speak to the manager.


My resolve was rocked harder in the last 8 days than at any time in the previous 11 months. I am on my feet, cautiously optimistic, and refocused on continuing the fight.


And what literally does not kill me made me stronger.


And to my wife Allyson, who not only kept the house running, got appliances fixed, and came to visit every day even when there was so much other stuff to do at home, I am beyond blessed. Thank you for all you do every day.



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6 則留言


nate.thack
2023年9月14日

OMG This post had me on the edge of my seat because I knew something crazy was gearing up. I'm glad you are still able to find a little humor in all of this to keep yourself and us smiling. I recommend this wig style when you finally get to chat with the manager.


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elizabethkenney5
2023年9月14日

Geez Michael….what a life you are leading! Glad you know how to hang on like a pro and I believe you are on the other side of this and heading now in the right diet! Keep it up! Sending love and hugs to you and also to Allison!!! ❤️🙏🏻❤️🙏🏻❤️🙏🏻❤️

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elizabethkenney5
2023年9月14日
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Autocorrect…. I wrote DIRECTION, not diet!!!

Michael … maybe autocorrect thought I needed more humor?????!!!!!

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Danny Allan
Danny Allan
2023年9月14日

You are the strongest person I know. #belikemike

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pblanchette
2023年9月13日

Hey, you just scared the crap out of me. We had no idea how bad this got for you until right NOW! WTF is right! I knew in my medical head that ICU was outside the box, and I was right. Thank God!

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erica steffenson
erica steffenson
2023年9月13日

Dude.


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