Pat Speer’s Leukemia Blog
Note: in typical-me fashion, I am blogging this like a story, with the most recent posts at the bottom of the page as opposed to the top. Latest post February 25, 2022. I'm sorry for any confusion.
January 2021--Early March 2021
It started with a gasp. A gasp for air on a stretch of sidewalk I’d walked a hundred times without such a gasp. This gasp then led to a second gasp on a walk around an old movie ranch named Corriganville. Something was definitely wrong. The loud pounding heartbeat in my right ear made me suspect the worst. I had either fallen really out of shape in the COVID winter or I was sick in some way.
I thought it might be anemia. I tried iron pills. Black poop, but no increase in stamina. I continued to get more and more winded. Finally my wife said we’re going to urgent care. We sat in a parking lot for two hours while they prepared and performed a COVID test. Negative, of course. I didn’t even have a fever. They then let me inside. The doctor listened to my lungs, and said I had an upper respiratory infection. She said I should take some DayQuil and NyQuil and I’ll be fine. I tried to point out that I was getting winded weeks before I’d developed my recent cough but she said that’s the way it is sometimes. Oh well.
A few days later I arranged a zoom session with my family physician. He said it sounded like a heart condition to him and referred me to a cardiologist. The earliest this cardiologist would see me, of course, was ten days.
After two days, I’d had enough. I was now getting winded when walking to the bathroom. My wife took me to a local hospital emergency room, where I was required to sit outside until they could perform their own COVID test. After an hour or so, a nurse came outside and took me to a trailer and withdrew 11 vials of blood. Maybe an hour after that they brought me into the emergency room and told me the news. I was anemic, with 4.4 hemoglobin compared to the usual 13.5. The trick now was to determine the cause. A female doctor came behind the curtain and put a gloved thumb up my butt and quickly reported back that I did not have internal bleeding from the lower tract. Another doctor came in and started talking about bone marrow. When I asked him if he thought I had leukemia (a condition in which one's white blood cells become cancerous), his face went white. He said it was too early to think about such things. He then came back about an hour later and said he’d run a preliminary test for leukemia and that it was negative. The thinking then became that I had an upper gastro-intestinal (GI) leak and that they would test for that the next day.
In the meantime I was given my own room and a steady stream of fresh blood and platelets. Although much of this day is a blur, I remember that a doctor came to my room to chastise me for failing to have a colonoscopy performed when I was 50. I told him that a leaky colon had already been ruled out by the female doctor who'd stuck her thumb up my butt. I didn't tell him that the doctor who'd told me a colonoscopy was unnecessary when I was 50 was now an administrator at the hospital.
That night was pretty much hell. Moans and groans from down the hall when added to my own dark thoughts led me to feel that this was it. The end. In my exhaustion I had visitors from beyond who told me it would all be okay.
The next day was largely a holding pattern for the upper GI inspection, for which I had to go liquid-and-food-free for 17 hours. When I came down from the tranqs I could tell something was wrong. The doctor said I did fine which told me he didn’t find what he was looking for. Now here’s the weird part. I’m fairly certain he said I was gonna be released and that he would arrange for a colonoscopy in three days.
It wasn’t but an hour after that, however, that another doctor, the one who’d told me not to worry about leukemia, called my room to tell me that he was having me sent to a hospital that specializes in leukemia.
That night was even more horrifying than the night before. I tried to sleep but to no avail. Finally, around 11, an ambulance showed up to transport me to the specialty hospital. It was an hour drive or so, with me bouncing off the stretcher over and over again only to be saved by my own outstretched leg. I finally reached my destination. My own room. A shut door. Quiet.
But the fun was just beginning...
Early March 2021
The next day my cough took a turn for the worse, and I started coughing stuff up. I believe it was also on this day that they dug some bone out from my hip and confirmed the worst—that I had AML. Leukemia. In the meantime the number of transfusions and blood samples had led my arms to resemble pin cushions.
And then things got worse. One nurse failed to properly tie off my left elbow after the removal of an IV and I woke up in a pool of blood stretching from my shoulder to my waist. And then another tied off a blood draw just below my left wrist bone, thereby crushing and tearing the tendons below. Now no one wants to believe this but it’s true. I’d injured the wrist roughly 10 years before by sleeping with my head on the wrist. And I’d lost the use of my hand for months and months. Now here I am again with but one good hand.
I think it was around this time that someone came to my room with a portable machine that scanned my lungs. I then had a visit from a doctor who felt certain my illness was not random and that I’d been exposed to a toxic chemical. I later came to believe he was right as I had worked seven years in a once-toxic building which had supposedly been cleaned up, but apparently was not.
I then started coughing up blood within the stuff I was coughing up. Someone explained I had pneumonia on top of my leukemia. They then gave me a drug to reduce the fluid in my lungs. This made me pee every five minutes for three hours, so I got used to using a cheap plastic hand-held urinal. (This, then, became my constant companion, as I was given this drug for 8 of the next 9 days.) In any event, with the first pee after receiving this drug I got a not so nice surprise—a cough attack and a squirt of blood from my penis that will be hard to erase from my memory.
I think it was later that day that a procedure was performed on my lungs, to clean some of the crap out. I woke up from this procedure in a paranoid state. Evidently they'd given me some serious tranqs. I had noticed the "authorized personnel only" signs as I'd headed toward this procedure. And now I heard the sounds of someone repeating whatever they were told as I awoke from this procedure. The thought occurred then that I was witnessing the testing of a top secret truth serum. As I came down, however, I came to a shocking realization. The pathetic person spouting out whatever they were told was me.
While being pushed back to my room, moreover, I realized something else. I wasn’t gonna die right away. My breathing was far less labored. I might even go home once again.
Early March 2021--Early April 2021
Only not so fast. Before I could go home I had to undergo ten days of chemo. This, surprisingly, wasn’t so bad. But this ten day stretch was not without its drama. I developed diarrhea, which caused concern I had an evil bug that was a threat to my nurses. As a result they began wearing yellow raincoats when they entered the room. This was actually kind of comical in that they also had to wear a blue raincoat when giving me the chemo. It was almost fun guessing which raincoat they would be wearing when they came in the room. This also led to a disgusting/humorous incident. The string tie on the back of my gown fell in the toilet while I was providing the nurses with a diarrhea sample. I noticed this and left my gown on the floor of the bathroom and crawled back into bed. I then called the nurse assistant in. When she came in, however, I realized some of the poo had brushed against my leg, and that I’d brought it onto the bed. So she moved me to a corner chair and changed the bedding. When she came back to me with a rubber washbasin, however, I received a shock. The end of the mauve basin was lined with poo. Presumably, the gown had brushed against it when I removed it in the bathroom. In any event I was impressed with the nurse assistant’s cool in the face of widespread poo. This stood in stark contrast to the audible gasps and exclamations when the nurse and nurse's assistants discovered me in a pool of blood a few days before. Evidently, cleaning up poo is an everyday experience, while cleaning up pools of blood remains more than a bit unsettling.
In any event, the diarrhea cleared up, and my wife was okayed to spend the weekend. Unfortunately, nobody told the charge nurse, who came bursting in the room at 2:30 in the morning with a member of security to throw my wife out. This was quite upsetting to me. An hour or so later I awoke to a coughing attack which strained some rib muscles that bothered me for the next few days. It was around this time then that I started sticking up for myself. I began walking in the evening and telling the nurse’s assistants they would have to weigh me when I was out walking and that I would no longer get out of bed at 3 or 4 in the morning just because some doctor had made a request I be weighed by 6. My protest proved successful, which led me to wonder what other mini-battles I could have won should I have had the confidence to speak up.
My ten days of IV chemo then came to an end and I was allowed to go home.
This lasted two weeks, during which I would return on Tuesdays and Fridays for meetings with doctors and the receipt of transfusions. This would amount to me sitting around in a wheelchair for three to four hours and then sitting in a chair in the transfusion room for another three or four hours. Pretty tedious and brutal on my butt. After this two weeks I was brought back as an outpatient to live in a village that was part of the hospital so I could receive more chemo. In this village I was accompanied first by my sister and then my wife. It was around this time moreover that I received two pieces of good news: first, that the chemo had worked and the percentage of leukemia blasts in my blood had dropped down to zero, and second, that my sister was a good match and was chosen as my prospective bone marrow donor.
There was more trouble ahead, however.
Mid-April 2021--Mid-May 2021
Within a day or so of my return home, my left wrist began throbbing, so much that I abandoned the wrist brace I’d been wearing for weeks. My life then changed from an occasional search for a comfortable position for my wrist, to constant pain. I told this to my doctor on my next visit. He then prescribed some antibiotics and ordered up some x-rays. The x-rays were brutal. Five different angles on the wrist were ordered, only one of which I could readily supply. For the other four the tech had to turn my wrist in the required position, and then prop it in place with what he called a sponge. This proved quite painful. For the first time in my hospital experience I screamed out in pain. It would not be the last.
The anti-biotics I was to take at home proved problematic as well. Another first: I hurled. After that, however, I figured out that I could avoid hurling if I spread the anti-biotics out over a sandwich and a glass of milk. On my next visit I received an MRI, which I was told would be painless, as all I had to do was lay there. What a crock. For some people, the laying in a tube while it makes loud noises proves unnerving. Not so me. What destroyed me and made me want to kill was the vibrations, which led to the packing around my wrist to come loose, and excruciating pain. This led the tech to re-do the MRI from the beginning and then repeat the last part of the program in which the vibrations kicked in a third time. In sum, I spent almost two hours in the the tube, in pain for thirty of these minutes, and screaming out for the tech to stop the torture for ten of these minutes. When finally released of course I was told that the vibrations and pain were of my own doing, and that if I’d simply laid still all would have been fine. Bullshit.
But as bad as that visit was the next would prove even more upsetting. I returned to tell my doctor the good news. The nagging cough had finally stopped its nagging. And the antibiotics seemed to be working, as the swelling in the wrist had receded and the throbbing had ceased.
This good news led to some bad news, however. That the antibiotics appeared to have worked made my doctors believe I’d had a bone infection. They then re-admitted me into the hospital. This was my birthday, mind you. I was all alone in a hospital being told my bones could be septic and I could die. And then things became comical. The next morning brought the spectacle of five nurses lining up to look at my butt to determine whether a now-healed sore I'd received from sitting around as an out-patient was in fact an open wound. (After twenty minutes of consultation, they decided no, it was not.) Two new doctors were then brought onto my case: an infectious diseases expert and an orthopedic surgeon. The first of these then switched me to IV antibiotics which in turn caused an irritating rash on my legs and chest.
The doctors then began the Great Infection Hunt. I received a biopsy on the fluid in my left wrist. This amounted to a nurse using ultrasound to guide a doctor as he poked a syringe into my wrist and extracted fluid with a snapping noise. I was thanked after this procedure for not screaming. Evidently many patients scream at the sound of a syringe snapping at them. In any event this was a weird but not-so-painful experience. Not so the next day’s biopsy, in which an incision was made and tissue and bone extracted. Within hours the pain from this procedure had far surpassed the throbbing of the week before. They would give me but one oxy every six hours. This was later changed to two. The problem was that prior experience had taught me this would be of little help. Through experimentation and careful study I had determined that it took 2 1/2 hours for one oxy to kick in and 1 1/4 for two, and that they would wear off long before the 6 hours was reached. To be clear, then, the pain-killers did not kill the pain but only lessened it, and then for only half as long as they were purported to be effective. I was grateful, then, that the significant pain I’d received from this minor incision in the wrist receded within 36 hours and I was able to resume the gradual rehabilitation of my left hand and wrist, albeit back at square one, with my hand so bloated on top you could not see the outlines of the bones beneath the skin.
This stay then became a matter of finding the right combination of anti-biotics I could take at home, that would not give me a rash. After two weeks-and negative results for infection in the fluid, tissue and bone samples--I was finally allowed to go home.
Mid-May 2021--Early June 2021
Ahh... Home sweet home. Not... About a week after my return I tweaked my right knee a bit when getting off the couch to go to bed. It was not much of a surprise then that this knee had swollen up by the next morning. No, what was a surprise the next morning was that I couldn't put weight on my left foot without experiencing tremendous pain. This made getting out of bed quite difficult. My right foot then joined the fun, and was almost as painful as the left foot. I was now essentially bed-bound. This was all within 24 hours. I wasn't all that frightened, however, as I recognized my foot pain as gout (a condition in which uric acid crystals get stuck in the joints), which I had had in the past, and which I knew would clear up on its own, with the help of lots of water. I made the mistake, however, of gulping down this water with my morning meds, which I would normally take with food. Well, this led to another hurl. Yikes. It was decided I should return to the hospital the next day.
But how to get downstairs? We live on the second floor of a condo complex. I was able to stand and take a few steps with a walker. But I couldn't use a walker on the 22 stairs to the ground level. So my wife called the fire department and they sent three guys out to strap me in a chair and cart me downstairs, where my brother awaited in our car. This was a bit embarrassing as the neighbors watched as I was carted past.
The drive to the hospital was worse, however. Due to my knee injury, I sat in the back seat, with my legs draped across the seat. This led to not embarrassment, but tremendous pain. Something about the way I was sitting led to a loss of circulation in my feet, and a fiery pain in my right calf. About an hour into our journey, I begged my brother to pull off the freeway and massage my feet and calf, and bless his heart, he did so. When I arrived at the hospital I was in much better shape.
This stay in the hospital proved a bit shorter than the others. Only nine days. They performed an ultra-sound on my legs to make sure the pain I felt in my right calf was not a blood clot. The results were negative. They removed an orange jello-like fluid from my right knee with a 4-inch needle. This proved to be normal injured knee stuff and not signs of an infection. They decided the pain in my feet was both gout and pseudo-gout (where calcium crystals get stuck in the joints), and began treatment. They performed an echocardiogram of my heart to make sure there wasn't an infection in my heart that had spread to my wrist (where, let's remember, no infection was found) and knee (where, let's remember, no infection was found) and feet (where the pain was attributed to gout and pseudo-gout and not to an underlying infection.)
This echocardiogram was inconclusive. They thought they might see something, but couldn't be sure. So they then proposed a more elaborate procedure, a TEE, in which a probe would be sent down my throat to map out my heart from inside the rib cage, as opposed to from the outside. Well, this led to mucho confusion. The cardiologist who was picked to perform this procedure wouldn't perform it unless I agreed to it, and he refused to say it was necessary, or even tell me the odds of the procedure causing damage were less than the odds of the procedure finding something. I was in a quandary but ultimately decided to approve the procedure because I was afraid it would damage my relationship with my primary physicians, those treating my leukemia, if I did not. Pretty lame, I know.
But wait, it gets lamer. After I approved the procedure, my primary physicians told me the cardiologist had recommended the procedure, when he had come to my room and specified he had not. What the hell? I didn't know what was going on. After being brought to the operating room waiting area, moreover, it got even lamer. The anesthesiologist told me he planned on putting me all the way under. Well, this came as a surprise as the cardiologist had told me he wanted me half-under, where I could motion to him if the probe was scraping my throat or some such thing. I told this to the anesthesiologist, who came back a half-hour later to tell me he'd talked to the doctor and they'd agreed I would be all the way under. But no, that's not the end of it. As I lay in the operating room, as the anesthesiologist began putting me under, the cardiologist rushed to him and asked him not to put me all the way under, and the two began to argue.
I woke up an hour later. I never saw the anesthesiologist or the doctor again. I can only presume the anesthesiologist ignored the doctor and put me all the way under. In any event, the procedure proved to be a waste of time as no infection was found, and I was released the next day after demonstrating--yippee--that I could walk, albeit with sore heels and aching Achille's tendons.
This came as quite a relief as I was fearful they'd release me before I could walk, and that I would be forced to use a bedpan at home. EEgads! My wife had been through enough, and was now administering IV antibiotics to me three times a day. I didn't want to go full invalid, and was relieved to have that milestone delayed, at least for awhile.
There is a story from this visit which I suspect you'll find amusing. One morning, breakfast arrived bright and early. Too early, in fact. At first I rejected it because I hadn't ordered it, but I then accepted it because it was breakfast foods I'd ordered in the past and I assumed my nurse had ordered them for me. When she came to my room, however, she told me she hadn't ordered them for me. So I began joking that a poltergeist had ordered my breakfast. This story took wings, for that matter, later that day, when the nurse brought me a recently-prescribed anti-psychotic drug, even though I had never met with a psychiatrist. We joked that the same poltergeist who'd ordered my breakfast had ordered me some drugs. This part of the mystery came to an end, however, when one of my doctors told me he'd ordered the anti-psychotic for me because it doubles as an anti-nausea medicaton. Well, okay. But then the strangest thing happened. I was watching TV, high up on a wall, when the wheeled clothing hamper beneath it suddenly rolled 3-4 feet across the floor and stopped at the foot of my bed. Aha! The poltergeist strikes again, I thought. But then I remembered that a housekeeper had emptied the hamper maybe ten minutes earlier, and I assumed the floor was uneven on that spot, and that this had led to the hamper's rolling over unexpectedly. A short time later, however, I laid out this theory to my nurse and nurse's assistant (aka personal care assistant or PCA). I then suggested that they wheel the hamper back to its former position to see if it would roll back to the bed. They tried one, two, three four, five times, but each time it stayed in place and gave no signs of rolling back to the bed. Well this was too much for the PCA. She said something like "ghosts freak me out" and charged from the room. I told this story to a second PCA the next day with much the same results. It struck me as odd that these women worked with sick and dying people, and helped bathe and clothe them, even though they were scared as heck of ghosts. But, in retrospect, it makes perfect sense. Think about it. These women spend their days bathing sick and dying people. People on their way out. Well. it would have to be unnverving for them to think maybe some of those they saw on their way out...had found their way back.
It was in the midst of all this poltergeist talk, moreover, that I had a genuine scare. One night--presumably around 2 AM--I awakened as someone came into my room. I expected to see a petite nurse silhouetted in the door frame. But instead I saw the silhouette of a giant, stooping forward to fit in the doorway. This giant came forward about three steps and stopped, staring at me. Well, my horror quickly subsided as I realized this giant--I am 6'4" and I would guess this man was 6'10"--was wearing a hospital gown and was most probably a patient who'd went out for a walk and had gotten lost. Sure enough, the giant then uttered two of the most reassuring words I'd heard since I'd entered the hospital: "wrong room," which oddly enough sounded a bit like Stephen King's "red rum." He then turned around and shuffled out the door. I was later to discover this giant of a man was the patient in the room next door who had awakened me several times over the past week with blood-curdling screams. Apparently, he had nighmares and had taken to going on late night/early morning walks to pass the time and soothe his troubled mind. In any event, my waking up to see his lumbering silhouette entering my room was a Frankenstein-like moment that I suspect I will never forget.
I finally have some good news to report. Upon release from the hospital after my gout attack, I had a period of relative comfort, so much that my doctor decided it was time to move forward towards a bone marrow transplant. This entailed, in short order: 1) undergoing another bone-marrow biopsy from my hip so they could verify I was in remission; 2) discontinuing the gout medicine; 3) discontinuing the IV antibiotics; and 4) undergoing another round of chemo.
The first step went as hoped. (Trumpets blare "dut ta da da"). I was now in remission. Now, this was as suspected, but that's not to say this procedure was non-eventful. A bone-marrow biopsy is an invasive procedure that can be performed by a nurse. Essentually, you lay on your stomach while the nurse anesthetizes your hip and pulls out a sliver of bone with a corkscrew. There's much pushing and rocking back and forth. I felt like a fish flopping on the floor of a boat. Now here's the amusing part. The nurse's assistant observing the procedure thought it would help me relax if she put on some classic rock music while two nurses did the digging. She then put on Tom Petty. This turned out to be the perfect choice. When the nurses began seriously digging, Tom Petty sang "Don't Do Me Like That." When a stream of blood left the anesthetized area and trickled down the side of my left hip bone, Petty sang "Even the Losers." In any event, listening to Petty kept me entertained but not for the reason the nurse's assistant could have anticipated.
Late June 2021--Early July 2021
I am glad to say things have continued to go smoothly. Over the past week, I have undergone a number of tests to determine my overall health and ability to withstand the upcoming storm of a bone marrow transfusion. Most of these have involved my heart and lungs. There have been CT scans of my chest and abdomen, and nuclear imaging of my heart. There have been tests where I suck on a tube and then exhale while a tech measures my lung capacity on a computer connected to the tube. And there have been tons of blood work--with the withdrawal of a new-record 19 vials of blood from my right arm. The strangest of these tests, however, was a stress test, where I was administered a drug simulating strenuous exercise, while three nurses and a doctor observed and measured my response. Now, I was a bit stressed about the test itself, but had a mild response, fortunately. The most stressful part of the test, in fact, was a weird sound coming from down the hall, which sounded to me like the warning sound for a zombie attack, or some such thing. Oddly, the nurses said they'd heard the sound before but did not know where it was coming from. Hmm... There were a lot of closed doors in the radiology and nuclear medicine department of the hospital. Might not someone have been training zombies behind one or more of these doors? Just saying. I mean, think about it. A hospital would be the perfect place to create an army of zombies. They could even walk around the halls in hospital gowns, pulling IV poles. No one would know.
In any event, these were the thoughts filtering through my brain as I underwent the stress test. I passed with flying colors. Evidently, I find zombies less stressful than nurses and doctors and rooms filled with technical equipment.
MId-July 2021--Late July 2021
Well, so much for smooth sailing. It turned out they saw something on one of the images of my heart...that might be something. This led them then to put everything on hold until they could figure out what this something was. So I went in for further tests the next day, right? Nope, they took their sweet time before scheduling me for an angiogram--an invasive procedure where they put a catheter up an artery in your groin, all the way up into your heart, while watching its progress on a monitor. Now, it took them roughly three weeks to arrange for this procedure. Plenty of time for me to have another gout flare-up, which once again spread from my right knee to both feet over a day or so, Only this time we were ready. Instead of waiting around to see if it was an infection, this time we knew what it was, and my now near-doctor wife and I took care of it with the left-over meds from the last flare-up. In any event, I got back on my feet just in time so I could lay down. You see, when they perform an angiogram, you are forced to lay flat on your back, and then continue laying flat on your back for the next 4 hours. No sitting up. No laying on your side. No watching TV. No reading your phone. And all the time, a heart monitor machine beeping in your ear, and a bright light overhead blinding your eyes. I kept thinking of Guantanamo. After a few hours I was ready to confess. I tried to sleep but every time I dozed off someone would come over and ask me if I felt okay or needed anything. It was brutal. Apparently, the groin is not the safest place to go into an artery and there's a serious risk of springing a leak after the removal of the catheter and for the next few days. Yikes. No one warned me about that. In any event, the torture of laying motionless for 4 plus hours--five if you count the procedure--was only slightly less excruciating than the procedure, which wasn't too bad until the procedure came to an end. At that point, the doctor bailed, leaning over into my face while saying "All good," and the assistants were left to clean me up and send me on my way. They then did so in a professional, perhaps overly enthusiatic manner. You see, in order to stop the bleeding once the catheter had been removed, a good deal of pressure had to be applied to my groin. A great deal of pressure. Essentially, a full grown man was putting as much weight on my groin (at the intersection of leg and pubes) as he possibly could. And this hurt like hell. And was scary as hell. You see, he was putting so much weight down there that it strained something--I don't know if it was a vein, nerve or tendon--where I could feel it getting pulled up from my thigh. A very unnerving feeling. Perhaps literally. And when I told him about it, he said I needed to stop resisting. That's it. It reminded me of the MRI I received for my wrist. Someone was doing something to me that was causing a tremendous amount of pain and discomfort. And, in this someone's mind, it was all my fault.
Well, all bitching aside, it was good to get this out of the way. We (my sister and I, and my wife and everyone else inconvenienced by my illness) were back on track for a bone marrow transplant, that would not only extend my remission from leukemia, but potentially cure me of the bastard for all times. We'll see.
Late July 2021--August 4, 2021
Well, today, I'm in the hospital, awaiting a stem cell transplant, which is scheduled for two days from now. After the angiogram and before my re-entrance into the hospital two days ago, I had to perform a series of tests as part of a study designed to figure out what is causing heart problems in transplant patients. As part of this study, I was required to ride a stationary bike while they monitored my heart. Well, I was surprised I did okay, without any leg issues. The next day, however, was not so good. My left heel and right knee hurt like hell, and I got scared I was having another gout flare-up. Fortunately, however, this cleared up within a few days, and I walked into the hospital feeling as healthy as I had in months...
Just in time for the doctors to make me sick. You see, the great unspoken about many cancer patients is that the physical appearance of these cancer patients (bald, sickly, weak) is as often as not caused by the cure rather than the disease. Let me explain. I had severe leukemia, with cancerous cells floating around in my blood. A couple of rounds of chemotherapy wiped them out, and put me in remission. And not only that, my bone marrow recovered and started pumping out healthy blood cells, to the point now where I currently show no signs of sickness.
But that, according to my doctors, is an illusion. They--the very people who went on an infection hunt for an imaginary infection, and performed two unnecessary procedures involving my heart when they thought they saw something--assure me that leukemia cells are hiding, and that they will come back stronger than ever unless we wipe out my immune system and bone marrow, and start from scratch, Thus, the transplant. Yesterday, in a half-hour infusion, they gave me some nasty stuff--I think of it as weed killer--that will deplete my bone marrow, and make all my hair fall out--over the next week or so. And today they started pumping me full of immuno -suppressants--which will hopefully prevent my body from fighting off the stem cell transplant. Now, I told the nurses that the only thing that would stop my body from fighting off an invasion of my sister's stem cells was my mom, Verna. So they have renamed these anti-suppressants the "Vernalinas" in her honor. Hospital humor. She'll dig it.
If she gets to hear about it. My wife just called to tell me that my mom, who's been watching our son while my wife is at the hospital, has had a stroke, and has been admitted to our local hospital.
So, that's where I'm at. Awaiting transplant, nauseau, diarrhea, and the complete loss of body hair, while also awaiting word about my mom. In the meantime, I can watch TV, and walk in circles around the nurse's stations to get in steps. Although I'm not allowed to leave the sixth floor, there is a lobby overlooking the mountains to the north, and my room has a view to the east, where there's a freeway passing by. So, yeah, that should hold me up for a day or two. But I'm expected to stay here a month...
And no, I'm not kidding, This feels as much like a prison as a hospital. I mean. I'm not sick right now, and they're making me sick. And I'm allowing them to based on my trust they mostly know what they're talking about, and that this will lead to a cure, as opposed to a temporary remission. Fingers crossed.
Now, on a lighter note, because I don't want to bum y'all out too much... When they gave me the weed killer yesterday they were concerned it would affect the mucous lining in my mouth and cause mouth sores. So they gave me ice chips to chew for an hour. And not only ice chips, but popsicles. I downed ten lime popsicles in a row. I felt a bit like Joey Chesnutt eating hot dogs. In any event, it took me sixty years to recognize the medicinal value of popsicles, but now I get it, I totally get it. No sores in my mouth, as yet. I did have a bit of bleeding, however. One of the popsicles was so frozen it stuck to my lips and tongue, and I had a "Christmas Story moment" where I tried to pull the popsicle from my tongue, but couldn't. Anyhow, when I finally pulled the popsicle free, a bit of my upper lip came with it, and I finished the rest of that green popsicle with a red smear on its top. How very Christmas-y.
August 5, 2021--August 11, 2021
Well, the transplant--an infusion of stem cells from my sister designed to give me a new lease on life--took a bit longer than expected. I was told it would take 30 minutes but it actually took 4 1/2 hours, which was still shorter than the 11 hours over two days it took to harvest the cells from my sister. But it was worse than that: the infusion of cells--you could actually see them as they traveled down the IV line--clogged up the line, and it took another 3 hours for the nurse to get things flowing again. So, in total, it took 8 hours--with a half hour break between infusion and blood draw--to get my infusion and subsequent blood draw.
But, like I said, I have nothing but time. I'm here for weeks, if not a month, because complications are expected to ensue. And ensue they have. By Day 2 of my re-birth--they actually call the day of the infusion your new birthday and bring you cake--my stomach was all bloated and gurgly--and this led to a horrible attack of diarrhea, that could last for weeks. I feel fortunate, then, that I'm now on Day 5, and the diarrhea has lessened in intensity and unpredictability. Too much info, I know, but this is a leukemia blog, after all.
Now, the diarrhea was as expected, but the unfortunate thing about the days post transplant is that they are notoriously unpredictable. So, yes, of course, I've had another gout (or more accurately, pseudo-gout) flare-up in my knee and foot joints and have lost all movement in the toes of my left foot. So there's that. Having severe diarrhea while simultaneously having great difficulty walking is no cup-of-tea, my friends. But it's becoming more bearable due to the addition of anti-diarrhea and gout medicines to my already hefty regimen of pills and infusions. I am, of course, hooked up to an IV tree at all tiimes, and have been able to take daily showers with my right arm all wrapped up in tape, so my picc line (a permanent IV line in my right arm that goes straight to my heart) doesn't get wet. It's a bit complicated taking a shower while attached to a bunch of tubes but, hey, I have nothing but time to learn new skills, especially now that my walks within the hospital have been restricted due to my gout and low white blood cell count. So, yeah, I'm pretty much restricted to my room for the next week or two. Lovely.
Now, I think I left you hanging about my mom. It turned out that what she thought was a stroke was not a stroke and that after two days of tests they changed her blood pressure medication, after which she felt much better. So that's quite a relief. Dealing with hospital stuff is bad enough without worrying about your mom. She's now at home. I hope to join her soon.
August 12, 2021--August 20, 2021
Well, there's been a number of setbacks. That the diarrhea meds lowered my diarrhea frequency from 8-10 times a day down to once a day led one of my doctors to panic and conclude I was getting constipated. Well, this was flat-out stupid seeing as constipation is not a thing with me and that I wasn't eating enough to have more than one bowel movement to begin with. In any event, they cancelled my diarrhea meds without telling me and this set off a severe diarrhea attack involving much of the bathroom. And now, even though they've put me back on the meds, they no longer work, as I still have 3-8 attacks a day. Thanks, Doc.
Oh, so what else is new? That's right. I hurled up twice the other night--the first comprised of my nightime meds and Ensure Clear (essentially Kool-Aid with vitamins) and the second comprised of the strawberry Jello I'd eaten before I'd taken my pills. So that's pretty much bottom of the barrel stuff. I don't know how much lower you can get, gut-wise, than throwing up Jello.
And those were not the only setbacks. Over the past week, I developed a severe pain in my hips--like someone was hitting me with a small mallet. Now, believe it or not, my doctors were happy about this as they took it as a sign my bones were making blood again. So yippee, pain in hips, I guess. In any event, this hip pain soon faded away, only to be replaced by an itchy rash on my shoulders and chest.
So now, it's sort of a waiting game. I've been told I can go home this Friday if my diarrhea and vomiting get under control and I begin eating solid food again. As it is, however, that seems awfully far away, as last night I took five bites of banana spread out over an hour and a half--and three of these bites resulted in visits to the bathroom.
August 21, 2021--August 28, 2021
Oops, they did it again. The pain in the hips has cleared up. The gout has cleared up. The rash has cleared up. I'm eating food instead of relying on an IV bag of nutrition. I haven't vomited in a week. And my hemoglobin and platelet numbers are improving. So why am I still in the hospital? Well, they did it again. My diarrhea dried up and I started having normal bowel movements, so they once again took me off the diarrhea meds, only to have it come back with a vengeance. They now claim I have a bowel infection, but I don't believe them. It feels very much like they're messing with me. I was having normal bowel movements. So why take away the diarrhea meds? Why not let me go home while on the diarrhea meds? I have yet to get a reasonable answer. My distrust of the doctors and the whole course of my treatment grows by the day. They told me they wanted to perform a colonoscopy and possibly a biopsy on my colon to verify if I have the infection. I told them no way, that I'd had a number of biopsies that were both painful and unnecessary, and that they should just give me the meds they would give me if I had the infection. I suspect this attack on their authority pissed them off. Last night I had to pee like every hour. I asked the doctor who does the rounds about it this morning and he told me that people pee more when they get old. I told him no, that something had changed, as I had been peeing maybe twice a night prior to the last few nights. To which he just laughed and walked out. I feel very much like a prisoner, and am angry as hell.
September 1, 2021
I made it home. My numbers were improving, and I guess they needed the room, so they let me out of the hospital on August 30, the same day the U.S. got out of Afghanistan. I had an appointment with my primary doctor yesterday, who addressed some of my concerns, so I'm feeling a lot better about my treatment as well. It turns out all the drugs they're giving me (upwards of 30 pills a day now that I'm at home and disconnected from an IV) messes with the prostate, and makes me feel like I have to pee even when I don't. (Amazingly, I had to pee 13 times the other night between midnight and 7 AM.) He also explained that the steroids they were giving me were responsible for the crazy violent dreams I'd been having, including one in which I had a fight to the death with a human-sized cat.
The one drag about being home is that I'm still quite confined and limited in my activities. Since a number of the pills are immuno-suppressants, designed to prevent my rejection of my sister's stem cells, I am forbidden from eating at restaurants, or even take-out. They say the risk of infection is too great. And since the pandemic rages on, I'm cut-off from going to the store, or hanging out with friends, or anything involving the general public. When my family, outside of my wife and son, visits me, moreover, they have to wear a mask. And not only that. My wife is concerned I'll pick up some infection from tree mold, etc. So I'm under increasng pressure not to go outside and have a walk around the block, because, well, you never can tell.
So I'm pretty much a prisoner for the next 2 1/2 months...
September 2--September 15, 2021
The complications continue. Duh. While I was in the hospital they kept me pumped full of saline, so much so that I gained weight for the first two weeks of my 28-day stay even though I was barely eating. The weight then began to drop to the point where I'd lost fifteen pounds or so by the time of my departure on August 30. Well, after that the water weight went bye-bye, whereby I was peeing all the time and could actually see my ankles once again. I lost 28 pounds in an approximately three week period from mid-August to September 7 or so. This proved a problem. The sudden loss of water weight also caused my blood pressure, which had ballooned up to the 150's while in the hospital, to drop back down to 115. As a consequence I started having dizzy spells again, and this led my doctor to put me back on saline. A bag a day keeps the doctor at bay. The problem was that for the first few days we had to make the hour commute to the hospital, and this pissed my wife off to no end. They then arranged for some saline to be dropped off at our house and a nurse to come out and show us how to run an IV at home. This caused yet another problem--get this--the nursing company dropped off the saline at 12:30 in the morning, and the nurse didn't show up for two days. Yikes.
In any event, I'm now hooked up to an IV at home for 3-4 hours a day. The thinking is that these extra fluids will give my kidneys a break, which had started to show signs of not functioning correctly. My guts are also an issue, with periodic diarrhea and a near constant gurgle in my belly. Besides that I'm doing okay. Well, not exactly. My knees and feet feel like they're about to have a major gout flare-up. But so far so good as I am still able to walk.
This brings me up to yesterday, when I received my third bone marrow biopsy. Well, this one was more eventful than the others. While the pain-killers worked the first two times, whereby I could feel pressure as they removed the bone sliver from my hip but no immediate pain, this time I felt pain, and lots of it. The irony is that before the procedure, I joked around with the nurses that I was a Civil War re-enactor, and that in tribute I wanted to forego any pain killers. This brought a chuckle. Ten minutes later, however, it was no laughing matter. I could feel the nurse inserting the needle in my hip and pulling out bone marrow. And I could really feel--to the extent I yelled out a number of times--when she went back in to remove a slice of bone. Now, for those interested to know, it felt like you probably think it did. Pain when she inserted the tool and cut into the bone, and even more pain as she twisted and tugged to pull it on out.
It seems, moreover, that this pain triggered a neurological response. For the first time in my life, I had the uncontrollable shakes. I was joking around with the nurses after the procedure when I noticed my arm was shaking, and showed it to them. They thought I was cold and brought me a blanket. When I continued to shake for another ten minutes or so, they brought me some snacks and suggested I get up and walk around. This seemed to do the trick as I walked right out of the hospital and got in my brother's car for the ride home. The problem was I forgot to go to the pharmacy and pick up my new diarrhea meds. Damn.
Now here's a fun fact. One of the things they're gonna determine from this bone specimen is how much of my bone marrow has my sister's DNA, and how much my own. Ideally, her stem cells have performed a successful coup, whereby I am now pumping out blood with her blood type and DNA. Now here's the crazy part. Once this conversion is complete, my blood DNA will be indistingushable from hers. This means if I commit a crime, and leave blood evidence, they may very well end up arresting her. Aha! (I wish Peter Falk was still alive, so he could come back and do one last Columbo, where he turns from the prime suspect to the suspect's sibling at the end, and says "Uhh, just one more thing...")
September 16--November 30, 2021
So now we get to the happy part. Sort of. The last few months have been dreary, with me largely trapped at home, but there's been signifcant progress on the health front. I'm only visiting the hospital once a week now as opposed to twice a week. And we've stopped performing saline transfusions at home. (It had become unnecessary as my kidneys got better once I stopped taking tacrolimus--the nastiest of the immuno-suppressants.) So things are nearing normal. Fewer hospital visits. Fewer pills. I go on walks by myself. I had Thanksgiving with my mom, brother and sisters. I've spent some time with my wife's family for the first time since the onset of the pandemic. So all's good.
Maybe. A few months back, I started sorting through my old baseball cards as a way of rehabilitatiing my wrist. I then got obsessed with buying up some cards to fatten up my collection. Mostly cards I used to have that I no longer had and had presumably sold or traded away as a kid. The problem is that I re-bought some of these cards twice. This never would have happened pre-illness. I had an incredible memory for such things back in the day. I bought these cards because I could still see them in my head when I leafed through my cards, even though I had sold them or traded them away nearly fifty years ago. And now I had trouble remembering if I'd re-bought them but a few days before.
So...to cut to the chase... I suspect my brain has paid a price. Sitting in a bed for months and months hooked up to an IV, and guzzling loads of pills, has made my once razor-sharp brain as dull as a butter-knife. Or at least it feels that way.
That's the bad news. The good news is that my website on the Kennedy assassination was scrambled up by google sites when I was in the hospital, and that upon finally getting around to fix it last month I re-read much of it with fresh eyes and was struck by its brilliance. Now that might sound conceited but you have to understand that I no longer connect with my website as something that's mine. It was something created by someone else entirely, whose legacy I am tasked with protecting. I don't know if I'll be able to continue with his research or to add anything of substance. But we'll see. Maybe as my hair grows back (my beard has come back but the rest of my body hair remains on leave) so too will my brain function. One can only hope...
Only I'm torn. Being a smarty-pants know-it-all who discovers things and then waits and waits and waits for others to catch up is not who I set out to become. Perhaps my illness was a blessing in that it re-taught me the value of family life, and the beauty of simple pleasures, like baseball cards.
Or maybe I'm just getting old...
December 1, 2021--February 25, 2022
OK. It's been awhile. In December my doctor ordered the removal of my PICC, the catheter in my arm that allowed me to receive transfusions and infusions without getting stabbed each time. And I took this as a sign he thought I was unlikely to return to the hospital. And blabbed about it on Facebook.
And then things went a bit haywire. Shortly before Christmas, I started getting itchy and developed a rash on my chest and back. This turned out to be Graft Vs. Host Disease (GVHD). Essentially, my sister's blood cells--which have her DNA--have started fighting with the rest of my body--which still have my DNA. Like Putin invading Ukraine, they think they are the rightful rulers.
In any event, my doctor gave me some steroid cream to rub on my skin, and added some steroids to my pill regimen, and the red rash stopped itching and turned into a dark brown. I was told this would fade. But here I am, months later, with dark splotchy skin. My son tells me I look like a Masai Giraffe.
Still, I've felt pretty good. I was going out on walks each day. I began doing some of the household chores--taking out the trash, washing the bedding and towels--but then I had another setback. My right eye got itchy and red. I told my doctor about it when I went in for another bone marrow biopsy, but it didn't set off any alarm bells. Within days, however, I developed a cough. I then began sneezing, and my nose started running. I thought "is this COVID?" We ran a home test. Negative. OK. Well, then it's a cold. I decided to look at the bright side--if this was a cold then my body was fighting it on its own. And it seemed to be winning. Less sneezing. Less drippy nose. The cough persisted, but it was getting weaker.
And then I realized that my mouth was really sore and that it was difficult for me to swallow or eat. And so when I went back to my doctor on Tuesday I asked him a dreaded question: "Do you think the cold triggered GVHD in my mouth?" He took one look at my mouth and said "Yes." So now I'm gargling with a steroid mouthwash, and taking anti-biotics to boot. And it seems to be working.
But I'm not done bitching. When I was there on Tuesday, they said I needed fluids. They said they would set me up with an IV before I went home. But then they came back and said because I had a cold the hospital's computer system had flagged me as a possible COVID case, and that this meant I would need to be isolated from the other patients in the transfusion room. Ok. Sounds reasonable. And then I sat around for 45 minutes. And then a nurse came in to tell me I was free to go and that I would have to come back the next day to get fluids. My mind exploded. The hospital was refusing to treat me because they were scared I was sick. That's insane. This really pissed me off--which I suppose we can take as a sign I'm getting better.
In short order, I told them that I was not gonna come back the next day. "Not gonna happen!" I pronounced. They then said "Well, how bout Thursday?" "Not gonna happen," I repeated. My doctor then reminded me that if I suffered kidney damage I was gonna end up back in the hospital. This came across as a threat. I told him that that was not gonna happen and that I would see him next Tuesday.
I realize now that my antipathy to my doctor and my treatment had been brewing for awhile. I was supposed to have been part of a study that would prevent GVHD. But I was yanked from it at the last second when the cardiologist thought he saw something on an image, and I was forced to undergo an angiogram, which proved both traumatic and unnecessary. They then told me I would need to redo the tests to be part of the study. I asked my doctor if that meant I would need to undergo another unnecessary angiogram if a cardiologist thought he saw something again. I was not given a clear answer, but it seemed to be yes. Their imaging system had given them a false positive and they would rather put me through more pain and suffering than skip the freakin' test that had provided the false positive. So I didn't redo the tests and was cut from the study. Now, I don't know the results of that study. And I guess I don't wanna know. The thought I could have avoided a condition which could still prove fatal if only my doctor had had the balls to stick up for me makes me furious.
There's also this. I hate big Pharma. I think they are totally corrupt murderers who keep America sick so we will buy more of their product. Rather than create products without side-effects, they create more products to counter-act the side effects. It's all about the cha-ching. And they don't even pretend otherwise. They sell their products for half-price elsewhere, and use the American public to bankroll their attempts to addict the whole world. Now, that said, I almost certainly would have been dead by now if I hadn't been given chemo when I needed it. So I'm conflicted. Even more conflicted lately. You see, I started a new medication in December. It is relatively new, and is designed to prevent a relapse of FLT-3, the nasty mutation which nearly killed me last year. I take three of these pills a day. Every day. And am expected to do so for two years or so. They look pretty much like aspirin, and come in a tiny 90-pill bottle that gets dropped off at our door in a giant box.
So what do you think this costs?
23k per bottle, over 250 bucks a pill. For something that looks like yellow aspirin.
Now, like I said, I'm conflicted. I've been told it's unlikely I'll have a relapse--that my bone marrow is 99.8% my sister's and that it's doubtful what's left of my bone marrow will resurrect leukemia. But at the same time I'm being told I need to take a pill that costs over 750 bucks a day to make sure it doesn't return. Now, the cost is currently being absorbed by the manufacturer, or so I've been told. But that could change. So I asked my doctor for some data. I mean, doctors are supposed to be men of science. He wouldn't just put me on a costly medication because someone told him it works, would he?
I fear that he did. When I asked for data--what was my prognosis if I didn't take the pill vs. my prognosis if I did-- he just blew me off. Like I was some silly nitwit to even think about such things. So I'm stuck taking a pill I doubt even works that will bankrupt my family should we have to pay for it ourselves.
So that's the bummer part of the update. Now for some humor about the bum. Since I am immuno-compromised I have not been allowed to get the COVID vaccine. But they came up with something recently which will not prevent me from getting Covid, as far as they know, but will cut the chances of my dying from COVID by 80% or more. And this was offered at the hospital. So, OK, I was game. I made the appointment.
On the day of my appointment, a nurse took me to a room. I sat down and held my arm out for a shot. She kinda smirked and said, "No, this shot is a two-parter. The two-parts can't mix in a tube, only in your body. So you need to stand." So I stood.
She then walked around behind me. "Now I am gonna give you one injection in your right buttock and one in your left. So you gotta pull your pants down a bit. Lower... A bit lower..."
She then wiped the top of my left buttock with alcohol and gave me a shot. She then wiped the top of my right buttock. I could feel that she was crouched down behind me, right behind my butt, a foot or so from my butt crack. She then said something in a sing-song voice that I never will forget.
"Here comes number two-oo!"
"God, I hope not," I replied. And she laughed.