Stem Cell Transplants (by a Dummy for Dummies) – Part 2

I’ve been putting off writing up the concluding chapter of my stem cell transplant post. Part of it has been that I’ve been busy. C’mon, give me a break. Although, I’m less busy right now as I’ve fallen victim, professionally, to the coronavirus (COVID-19) pandemic sweeping the globe. Now, I’m a full-time blogger and musician, as well as, I guess, a full-time job seeker.

Okay, so I guess you can’t have three full-time positions. You get my drift though.

But, I think the biggest part of my delaying this seemingly inevitable post is that I’m not particularly enthusiastic about drumming up memories of November. I mean, I don’t want to be overly dramatic – there are so many more cancer patients who go through much more damaging treatments than what I had to endure. However, I feel like I feel, and I can tell you I don’t miss last October and November too much. I’m in no hurry to go through that again (who knows if I will – I do know that Stanford took enough stem cells from me to complete two transplant procedures and that the second half of those cells are in deep freeze over on campus right now).

Friday, I believe, will be 150 days since my stem cells were reintroduced to my body, so there’s no better time to pick up where I left off. Now, just where did I leave off?

Ah, yes, apheresis, or the collection of my stem cells!

That was a big deal. After my stem cells were collected in a five-hour or so procedure, I was “released” back to my normal life. Of course, I still had the catheter in my chest, which made me feel like a freak, but I no longer had restrictions in wearing my HEPA filter mask or adhering to a low-microbial diet. I still needed to avoid getting ill, as that would definitely push back the continuation of the process, but I felt like I could go out and about again, and that was a real boost.

For me, the rest and recovery period was a chance to get my body and mind prepared for the second half, which was coming up in just 17 days. It was a chance to walk, build up my endurance and stamina, and get all my ducks in a row for work (Ha! Something now I wish I had spent less time doing}. 

And, it was also time to pack! Just like with the beginning of the process, the second half of the transplant would require me to be within one hour of Stanford’s Cancer Center at all times, for three to four weeks. 

First meal off the diet? I think it was to Mendocino Farms and their avocado and quinoa superfood salad. 

Our days leading up to the second half were interrupted only by once a week visits to the apheresis lab to get the dressing changed on my catheter. It was IMPOSSIBLE to find a local place in the east bay to do it, even at a hospital (they only had facilities for in-patient dressings only). I know a couple of nurses, and they offered, but then I somehow had to get the kit for them, which is impossible. So, it was off to Stanford once a week and enjoying the Bay area commute with Lori driving.

Ah, that’s something. During this entire process, because of the medication I was on, I couldn’t drive. I was completely dependent on Lori to take me to appointments, and that dependency would grow coming up for the second half.

With a bunch of preliminary lab tests scheduled for bright and early on Wednesday, October 30 – chest x-rays, urinalysis and a blood draw, Lori and I “moved” into the Residence Inn in Menlo Park on Tuesday the 29th and settled in for the long haul. Spearheaded by my friend Paul, our friends had taken care of making (and paying for!) living arrangements, and we had a nice two bedroom place, with a kitchen, living and dining area, and two bathrooms. 

As nice as it was, I would grow to really want to leave that place.

For the appointments on the 30th, what with it being the day before Halloween, I decided to dress out in my Opposuits “Day of the Dude” suit, just to try to put some smiles on peoples’ faces at the Cancer Center. It seemed to work too, so I wore it a lot on Halloween too.

Our daughter Olivia was able to take some time off from Vanderbilt Law School and came out to visit for a couple of days too. She just needed to be there as I got started. I learned as a patient that I didn’t necessarily need help and support all the time, but that friends and family needed to provide help and support. It’s what a patient’s loved ones have control over, and patients just need to learn to say, “yes.”

With Olivia town, I decided a nice day trip would be up to Baker Beach with its view of the Bay and the Golden Gate Bridge. I had never been before and it was a beautiful day to take in the sights and be with most of my direct family.

I covered all the bases with direct family when our son Raymond was able to meet up for us at dinner. To tell you the truth, I can’t remember what my last pre-treatment meal was before I went back on the low-microbial diet. I’m sure I enjoyed it, and I did enjoy the last night out before all the health and safety precautions took place again (the mask, etc.).

Friday, November 1. Showtime. Olivia accompanied Lori and I to our 7:50 am appointment at the Infusion Treatment Area. We got a nice spot with a good view through the windows and settled into a multiple-hour infusion of BCNU. The procedure was rather cut-and-dried, with the chemotherapy dumped into me via the catheter, along with a whole bunch of IV fluids. 

Ah, yes, the fluids. Leaving the ITA that day meant another backpack full of fluids to take along with me, to be my constant companion for the foreseeable future.

Saturday, my sister Ruth arrived in town to help us out, and a huge help she would be. Not only does she cook a lot of tasty meals, but she’s also a medical doctor, practicing emergency medicine in the Cincinnati area. It’s always good for a patient to have advocates close by, and one with a medical background is particularly useful. On Saturday, we just had a single appointment at the Center, to change out my empty IV bag for a brand new, full one. I was feeling good.

Olivia left to go back to school on Sunday, so it was Ruth, Lori and I for our 2:00 pm visit to the ITA for the last dose of chemotherapy, a particularly nasty little f@#%&$ called Melphalan. Melphalan acts on fast-replicating cells, like cancer cells and a patient’s entire GI tract, from lips to bung hole. 

With Melphalan, there’s a particular worry of developing sores in the mouth and throat, a big problem when trying to ingest food and beverage. To combat that as best as possible, a patient undergoes cryotherapy prior to receiving the drug. Now, this isn’t the cryotherapy Antonio Brown burned his feet with, although the principles are the same. No, this cryotherapy is decidedly non-high tech. It’s simply chewing on and swallowing ice, the intention of which is to contract the diameter of capillaries and veins along the patient’s mouth and throat, thereby having those areas receive less exposure to the drug once it’s administered into the bloodstream. 

I followed procedure to the letter! While Ruth and Lori were talking, I was doing nothing but chewing ice and swirling ice cold water around my mouth and then swallowing. Thirty minutes or so of that as I recall. One I thing I did not want was aggravating mouth sores, so I was as diligent as I could be.

After the ice, the infusion began and it went by fairly quickly. It was the quickest of the dosages as I recall, but I can’t seem to remember how long it was. Oh, and I was feeling good too. 

That wouldn’t last.

Nausea came on pretty soon after Melphalan worked its way through me and combined with the BCNU dose of a couple days earlier to do a tag team on my stomach. I struggled through the night with nausea, finally vomiting for the first time in the wee hours of Monday, November 4. I threw up again later in the morning, and generally felt like shit.

A word here: I hate throwing up. Always have, always will. I’m not one of those guys who just blows chunks and gets on with it. I fight it. Every. Step. Of. The. Way. And, afterwards, I don’t feel so great. There’s no eating and drinking, and that’s not good for a cancer patient going through chemotherapy. You have to nourish and hydrate, even if just a little. Every little bit counts. 

Monday the 4th, I had a 2:50 pm appointment at the ITA, and, in addition to general fluids, I also had some potassium as my blood values for the next several days would show a deficit there. 

Tuesday the 5th was transplant day! I was still nauseous, but not as bad as before and the vomiting had stopped, at least for the time being. The transplant is really sort of anticlimactic. The staff thaws out the frozen stem cells and then they drip them right into you. Just one catch. The cells are in a preservative called DMSO, and if any of you remember DMSO as an athletic treatment in the 1980s, you’ll recall it comes with a side effect – body odor and bad breath. 

Within a minute or two of my stems cells being reintroduced, a smell of rotten tomato soup filled the room. You get used to it kind of quickly. But, everyone new to the room gives a little queasy face just as soon as they enter. It’s funny – when Ruth and Lori would get into the car without me for the next day or two, the soup smell was still in the car. 

Getting a few cold chills just thinking about it.

The staff celebrated my “second birthday” by serenading me with a rousing rendition of Happy Birthday, complete with a cake. I was able to even eat most of it!

Not looking my best on transplant day. Vomiting the day before, not sleeping well for several nights, and my head – what was up with that. I was well on my way to losing damn near all of my hair. Whiskers and armpit hair were pretty much all gone, as well as most of my leg hair. About half my eyebrows were still hanging around. But, on top of my head, I had several patches that were just stubbornly hanging on. It was a funky little look, and even commented on by my nurses, one of whom said, “I’m not sure what you have going on back there.”

Sometime on 6th or 7th, I just shaved the patches down, and eventually the hair fell off completely.

A big relief on transplant day was a determination that I could leave that day without carrying an external bag of fluids. Ordinarily, I would have transitioned from the roller bag of fluids to a fanny pack of fluids. But, as there was a shortage of some particular drug that was going to be administered in the fluids, the team thought I didn’t need it. A bit of a morale booster not to be tethered to a bag and a pump. 

After the transplant, each day developed into a routine. Try to eat something whenever, wherever during the day, try to get fluid in whenever, wherever, try to occupy myself with some work duties, and try to forget that nauseous feeling.

The cryotherapy worked pretty well. I didn’t have mouth sores, but I did develop a sore in the back of my throat, which made swallowing a bit difficult, particularly when trying to choke down some of the huge pills I had to take morning and night. I mean, it was a struggle to get those pills down, often leading to some gagging and then me sitting still, swallowing and forcing myself not to vomit. A lot of close calls – multiple occasions a day.

One day, like Thursday, it went beyond a close call. Several times a day, in an effort to fight off mouth sores, the patient is required to gargle and rinse his mouth with a saline solution. I was homebrewing my salt water, and it was perhaps a bit strong. One day, I sort of gagged on it and found myself fighting that vomiting feeling. I lost, and boom, there it went. Another super fun (not) vomiting experience.

Now, during the ‘preparatory regime,’ better known by what it is, and that’s two major doses of wicked chemotherapy drugs, the intent is to wipe clear all of the patient’s bone marrow, leaving a nice empty shiny cleared-out home for the stem cells to move into and create new bone marrow. The chemo drugs kills the myeloma cells taking root in the bone marrow, but it also kills off the bone marrow. So, while the new stem cells are unpacking, moving in and getting to work making bone marrow, the patient is not getting any of the production units of healthy bone marrow – no red blood cells, white blood cells or platelets. What the patient has circulating in the bloodstream is all he or she has until the stem cells have engrafted, made bone marrow, and have begun producing cells and platelets. Ordinarly, that takes 10-12 days. 

So, during that week and a half, my blood values continued to drop, as over time blood cells get battered and frayed, and eventually break apart and dissolve. My WBCs essentially feel to zero – the lowest the laboratory reports out is a 0.1, and I was there for days.

With no white blood cells to fight infection, I was particularly prone to any and all illnesses, and I was fearful of contracting something for months leading up to it. I knew I was going to be particularly vulnerable for a couple of weeks, and that’s an uncomforting thought. I am so glad I’m not going through this process now during the novel coronavirus pandemic. I mean, I’m already sort of a mess right now and I’m relatively healthy and feel strong (my WBCs are low and out of range due to my maintenance medications). If I was going through a transplant right now, … 

While my blood values were falling to their nadir, I started posting a slight fever and suffered through repeated bouts of diarrhea (in addition to crushing fatigue and constant nausea). From a medical diagnosis level, everything was on the table. It could have been my body’s reaction to the chemotherapy and the reintroduction of my stem cells. Or, it could be … literally anything else. With that, prudence required that they put me on a strong antibiotic and then run cultures on my blood and stool. So, through it all thus far, now I can to start collecting stool samples – not the funniest thing when one’s having diarrhea and is already nauseous as hell. 

Finally, my blood pressure started to get a little low, and around November 13th or 14th I was admitted to the hospital. It was comforting knowing that I was in the hospital because it eliminated the need for us to constantly take my temperature and then have to consult with the nursing staff via the phone. That had a threshold of fever where they wanted to consult, and I was always at or above that threshold. So, the decision to admit was a rather easy one.

There’s an entire ward at Stanford Hospital for cancer patients undergoing transplants. As it was overcrowded, I wasn’t on that ward. I was way down at the end of another ward. So, it made a long walk for my doctors and nurses, but it did offer me some privacy and lack of congestion. Not that it helps with getting any rest in the hospital. 

I found it next to impossible to sleep there the first couple of nights. First off, my vitals were taken every four hours. Then, of course, keep in mind that I’m hooked up to a variety of IV fluids and medications, all of which eventually empty and need to be swapped out. Then, there were the alarms for when some error occurred with the pump and the IV fluids, like a bubble in the lines, an empty bag, a kinked line, etc. Here’s the thing though: the alarm that goes off when an error occurs is local. It’s right there, by the patient, a loud alarm. But, the patient, me, is perhaps the least qualified person in the building to troubleshoot and fix the problem. So, I would be awoken from my sleep and I would have to call the nurses station to notify them the alarm was going off. A minute later, a nurse would come into the room and solve the problem.

I have cameras at my house that can tell me if someone is outside, no matter where I am. Are you telling me we can’t have medical equipment that notifies the nurses at their station? 

Even the first day full day there, as I’m trying to get some sleep, I had an almost constant barrage of interruptions – doctors, nurses, finance department, social services, nutrition, blah, blah, blah. If you want some sleep, don’t go to a hospital!

After a couple of days, my fever abated and my blood pressure was back up to normal. So, I’m getting out, right! Wrong. As I was already there …

The doctors wanted to keep me there until my body had shown proof of engraftment, proof that my stem cells had made functioning bone marrow and that the marrow was producing blood cells. At the time, I was flat out, still, of WBCs and my RBCs were so low that I had two transfusions on two consecutive nights. 

I was trying to eat as best as I could, ordering from the catering service at the hospital. I had been nauseous for so long, I just assumed everything was nausea, including this “full” type feeling I had. It was so bad, that on my third night there, I really couldn’t sleep. Then, all of a sudden, into my brain jumped the thought, “heartburn.”

I’m not a heartburn sufferer. I don’t really know what it is. So, I Googled it, and damn, it sure seemed like that’s what I had, something I had been ignoring for two days and something that was just getting worse and worse. And, think about it: I had just destroyed the lining of my entire GI tract. The nurse gave me a dose of Mylanta and I could instantly feel it begin to coat where I had my most discomfort.

You’re never too old to learn something new every day.

Day four in the hospital was when my daily blood tests showed an uptick in WBCs. I was engrafted, and I was going to be discharged!

After five days and four nights in the hospital, I was discharged and told I could probably go home too. I mean home, home. Like, in Pleasanton. Just to be on the safe side, Lori and I spent one more day and the Menlo Park Residence Inn (my sister had to return home to her family and job about half-way through my hospital stay), where we took our time packing up all our belongings. 

I’m wanting to say we got home November 19 or 20, the Tuesday or Wednesday before Thanksgiving. All along my goal was to be home for Thanksgiving as that’s my absolute favorite day of the year. This past year, even more so. 

I was still under precautions with my mask and low-microbial diet, but I felt myself getting better every day. When I had a follow up appointment with my transplant doctor late in the first week of December, he advised me to judge my progress week-over-week, not day-over-day, as there were bound to be good days and bad days. When I looked at it that way, I could definitely see I was on the road to progress.

Overall, I lost about 13-14 pounds, and went through countless hours of nausea, four bouts of vomiting, and days of just feeling … tired. But, through it all, I found solace in being able to work for a few hours each day, and play guitar as well. And, of course, the numerous well-wishes from friends around the globe really made a difference.

Revisiting the transplant has been an emotional experience. I’m just so overwhelmed at all the love, encouragement and support I received from my friends, family and community during that time. And, to Lori and Ruth, my wife and sister, who took care of me when I felt my worse, I am forever indebted.

I love you all. Thanks for reading and allowing me to share one guy’s journey with multiple myeloma. It’s my hope that it can be a valued resource for the patients who follow.