This is a copy of an update e-mail I sent out. It presumes that you know my cancer recurred and I’ve been in Boston getting treated at Mass General Hospital. I have almost finished a lengthy summary of everything that’s happened since I last posted here, and will put it up shortly.
All -
Please forgive the mass e-mail. I’ve been meaning both to send out a mass update and get in touch with each of you individually for some time. A lot has been going on, and the fundamental reality is that my desire to communicate and the size of my social network are both greater than my current level of energy and focus can effectively sustain. I sleep through many phone calls, and simply do not have the energy to conduct others. I read all my e-mail, but I occasionally forget to send responses - even to messages that make me smile, laugh and/or cry. I really do appreciate every attempt to get in touch and send good wishes - I just can’t respond to all of them. This is a poor substitute; I apologize again and promise to do my best to get in touch directly and personally as soon as I am able.
I spent most of June in the hospital getting the autologous stem cell transplant - the procedure I came to Boston to undergo. After an extended period of gluttonous over-eating, I finally checked into the Medical Oncology Ward at Mass General. This area takes up about one half of the 14th floor of one building in the MGH complex - the other half is taken up by the maternity ward. Both wards are separated from the rest of the building’s ventilation and heating systems using ‘positive pressure;’ that is, the atmosphere is controlled and vented separately and is slightly pressurized so that air cannot get in from the outside. This protects the patients, who are almost all immuno-compromised to some extent.
I struggled to figure out how to describe the experience, and I decided that to understand it, you need to understand both the routine background noise of being hospitalized and immune-suppressed, and the exceptional moments that punctuated the process.
Routine is an incredibly powerful force - it is part of what makes being hospitalized a confrontation with a social institution, and not just an exceptionally sterile stay in a hotel. Routine shapes and defines the lived experience of hospitalization; you conform to it or rebel against it, but it simply is, and structures the behavior of everyone responsible for your care and maintenance - doctors, nurses, physician’s assistants, janitors, food service personnel, and other specialist players like physical therapists, social workers, and technicians. Because you are not allowed to leave your room, you live a somewhat passive existence; people knock, and you can forbid them to enter (theoretically), but you are constantly in the position of receiving visits; social initiative passes out of your hands.
The most common visitors are nurses. They generally work in 10 or 12 hour shifts, although this varies and sometimes a nurse will only work a half-shift. Doctors generally do rounds early in the morning and again towards the end of the normal workday (around 5-7) when they finish charting their patients progress for the day. Specialists tend to stop by whenever they have time. In a typical day, a team of doctors would visit me in the early morning (between 7 and 830). That usually included Dr. Chen, my transplanter, and his staff. The team doing the morning rounds belongs to the assigned attending physician. I conveniently happened to receive my transplant when my transplanter was the attending. Interns and residents would also pop in, particularly after my case got interesting. I generally saw between 5 and 10 doctors a day.
Nurses visit at least once every four hours, although generally far more often than that. At least every four hours, they check your vital signs - pulse/oxygen saturation, temperature and blood pressure. They bring you medicine. No matter how stubborn you are about avoiding painkillers or anti-nausea meds, if you get a bone marrow transplant, you will take a lot of medicine - either chemotherapy, or stuff designed to help your body survive it. They maintain your IVs and catheters. That might sound insignificant, but it really isn’t, from a lifestyle perspective.
When you’re hospitalized for a bone marrow transplant, you’re hooked up to an IV pretty much all the time. The only times you’re not hooked up are when you’re going for exercise, showering, just checked in, or are about to check out. Just about everyone who has a bone marrow transplant has a Mediport implanted. Mine was put in a few months ago, and is in my left upper pectoral area. A Mediport, for those of you unfamiliar with the device, is a way to inject medicine into a patient’s central veins without going through peripheral blood vessels (like the tiny ones in your arms where IVs are normally placed). The Mediport is a disc about a half inch thick and about the circumference of a quarter, connected to two tubes that run into a big vein (the jugular, in the neck). The disc is basically a plastic ring with a semi-hard center made of silicone gel. When they want to take blood or administer medicine, they use special hook-shaped needles. Those needles pierce the skin, and enter the gel, and can pump liquid in or out of the tubes. When the needle is removed, the gel closes up the hole, so there’s no leakage.
During a minor surgery, the port is inserted on top of your chest wall, under the skin and the tubes are inserted into the vein in your neck. There are two incisions. It hurts for a while, and is a minor discomfort for as long as it is there. Imagine having aliens implant a stack of seven or eight quarters into your upper chest, near the collarbone - even if it didn’t hurt, it would be irritating to have it there, and would occasionally get jostled or poked unpleasantly. Congratulations, now you know what it’s like to have a Mediport.
Nurses are in charge of Mediport business. It has to be regularly flushed with saline and Heparin (a weak anti-coagulant that keeps clots from forming around the tubes) to keep it clean and uncorroded. If the tubes get covered in clotted blood, it can cause problems (like say, a stroke), so if the port doesn’t flush properly, stronger anti-coagulants are used. If those don’t work, they yank the port out - although that would only happen in an extreme case. A port can stay implanted for years safely, as long as it gets flushed once a month.
Between 2 and 5 am, a nurse must draw blood from the port for your daily ‘labs’ - a term that refers to the basic blood biochemical data like the patient’s white and red blood cell counts and clotting factors. Blood data is supposed to be interpreted and acted on by doctors performing their morning rounds. For the labs to be up-to-the-minute, they have to be drawn at an obscene hour (rounds start at about 7, and the labs take about 2 hours to process, minimum). To access the port, a curved needle (actually, two curved needles) has to be used - straight needles would cause the silicone gel to split apart. The nurses insert and remove the needles, and some of them are so good at it that you barely feel the pain of being hooked and gored. That’s important since, no matter what, every 7 days the needles have to be changed and swapped out. That means pulling the old ones out, and putting new ones right back in, in more or less the same place. You develop a pretty serious bruise in the vicinity of the Mediport, for obvious reasons.
A special bandage covers the bits of plastic that keep the needles emplaced and stable, and tubes come out of the bandage, and link the port to the IV tree (the thing where the bags hang and the pumps work). There’s a trick to these bandages - there are two kinds, and one is a lot more expensive than the other. Unfortunately for me, the adhesive on the cheap (hence, default) type of bandage dissolves my skin - eats it away and leaves a bleeding red mark wherever it touches. Nurses noticed this and were responsible for fixing it in a minimally painful but also non-infectious manner.
One thing nurses can’t do is keep you from hurting yourself with the IV tree. You have to sleep, walk, eat and visit the bathroom with tubes connecting you to it - and if you get tangled up, twisted about, or just forget to bring the tree along on a walk and yank the needles out of your chest, it’s on you. Whenever the IV tree finishes injecting you with something, develops a problem, or runs out of battery (did I mention it has to be plugged into the wall to charge?), an alarm goes off. Sometimes, if you’re really unlucky, or you miss the first one, several alarms will go off. You can try to stop the beeping yourself, but will most likely fail. You have to call a nurse to come and fix it.
Calling a nurse requires using a call button that is on a device shaped like a large TV remote. It is, in fact, the remote for your ceiling-mounted TV and adjustable bed. It also has a speaker for the TV that, combined with a microphone, lets you speak to the receptionists. These people sit at the front desk, which is co-located with the nurses’ station, but not the nurses’ lounge and desks. A charitable person would say they are over-worked and under-trained. A meaner person would say that most of the receptionists were newcomers to the floor when I was there and were less than fully competent. Because the receptionists do not identify themselves and are always the intermediary between you and the nurses, you must walk a fine line with them. Any time you call them and suspect they may have failed to relay your message accurately or sufficient speed, you face a dilemma. If you call a second time, you may fix the problem. But you may also antagonize a receptionist who may well have relayed your message perfectly and quickly to a nurse who is currently busy. Antagonizing the receptionist may make them less helpful when you really need something - like say, help getting to the bathroom or an injection to keep you from hurling - stat.
Nurses help maintain your hygiene regimen, which is a pretty considerable task. During a bone marrow transplant, you must brush your teeth four times a day, and switch toothbrushes every 7 days. During every brushing, you cannot use the sink to clean the brush or wet the toothpaste - a special bottle of sterilized water is used for that. During two of the brushings, you must rinse and gargle with saline solution (salt water) and a prescription mouthwash called Chlorhexidine that burns the inside of your mouth and turns your teeth blue-gray. During the other two, you gargle with saline only. If your platelet count gets below 50,000 (which it does for at least two weeks as a general rule), you have to use a thing called a toothelet. This is a bit of green-colored foam on a stick like a grotesque lollipop. It is gentler on your gums than a toothbrush - if you abrade your gums and start bleeding with a low platelet count, it won’t stop for a long time.
Every morning, you must shower. You can wash your hair using anything you like, but you must use a specific anti-bacterial soap on your body. Before showering, you must have a plastic bag taped down over your Mediport and the dressing so that it doesn’t get wet (the nurse does this while you try to sit still and avoid getting something sensitive like armpit or chest hair entangled in the tape). When you shower, you must dry yourself with four washcloths and four towels, each of which is for a specific designated zone of your body.
I will not belabor this point, but there is also a routine for bodily waste. This is designed to ensure that you are excreting roughly what you are taking in (in terms of weight and volume). They also test for blood in urine and stool with special CSI-like kits. Also, patients can have serious problems processing the volume of fluids that they are injected with. In fact, during and right after chemotherapy, the doctors intentionally flush your body with about as much water as you can safely process. They pump you full of toxic chemicals, and want to get them out of you as quickly as possible, and they use the IV fluids (water) to do it. During that period (about a week) if you’re not urinating about every 45 minutes, you may have a serious fluid retention problem. Even if you’re used to having your privacy invaded for medical reasons, this part of the experience can get a little tiresome - especially when something happens that makes it impossible to go to the bathroom without help (more on that below).
Meals are an important part of the routine as well. There are three every day, and a menu has to be filled out for each meal in advance. You have choices, but there are no good ones. Hospital food is universally bad. But, the food in the Medical Oncology Ward is a special kind of bad - it is prepared on the floor in a special (and horrible-smelling) cooking area. Transplant patients are on an anti-bacterial diet. In principle, that means you are forbidden to eat or drink anything that was not pasteurized, and thoroughly cooked. Food either must be produced in the ward’s kitchen, or manufactured and sealed under sterile conditions in a factory. Nothing raw - no vegetables or fruits, no nuts, nothing cured or smoked, and no imported dairy products. In practice, you either eat the (awful) hospital food, or ice cream, pudding, packaged sweets, or packaged microwaveable meals or soup.
All this would be aggravating enough if not for the fact that one of the most common side-effects of high-dose chemotherapy is mucositis. This is a rather painful irritation of the mouth and upper digestive tract. Mucositis makes swallowing anything rough, hot, spicy, sour, acidic or crunchy extremely painful. I did not get mouth sores or horrific heartburn, which are common as well, but I did have a lot of pain in my throat and mouth. You all may remember that I was hospitalized in September when my esophagus was too painful for me to eat and drink. That experience did some lasting damage to my throat, so it got pretty sensitive rather early on. Fruit juice, for example, was too acidic for me about a week after I got into the hospital. I had my first post-transplant juice this last week.
After being admitted, I had about 24 hours off. I took some medicine, but nothing major happened. Then the chemotherapy began. I got a cocktail of four drugs, three of which I have never taken before. The fourth was in the ICE cocktail I received as an outpatient here. The drugs were administered twice a day, for between 6 and 8 hours at a stretch. The chemo was accompanied by a cocktail of anti-nausea drugs, steroids, and medicines to protect the filtration organs - kidneys, liver and bladder. It took so long to inject all this stuff, that by my reckoning, I was receiving chemotherapy more often than not during those days. So much medicine entered my body so fast, and accompanied by so much anti-nausea medicine that it really didn’t affect me until about 48 hours after the chemo stopped. That’s when the trouble started.
First there was pain. Sharp pain all up and down my ribcage when I breathed deeply. A dull ache in the center of my chest that never went away, but did sometimes become more intense. Muscle soreness in my shoulders and sides that became agonizing, wrenching pain when I tried to change positions and get more comfortable. Sleeping and eating were impossible. My doctors were confused - since there was no discernible cause for all the pain - but to their credit, they acted anyway. The goal was to “get on top of the pain.” Initially, we were in a defensive and reactive mode; jumping at each new pain and ache with a new dosing or drug. Ideally, the pain would would no longer lead the dance and call the tune.
I have a pretty high tolerance for painkillers, and I don’t get euphoric or hallucinate when I take narcotic medicines. I may be lucky with respect to the latter, since it decreases the likelihood that I will develop a dependency problem. However, my tolerance for the drugs means it takes pretty large doses to help me, especially when the pain is severe. By the time the pain was under control, the brute quantity of the painkillers - especially when combined with the other drugs I had to take - made me extremely loopy. Folks who visited during that time encountered an occasionally semi-conscious and very confused me.
They simultaneously commenced to test me extensively to figure out the cause of the pain. My immune system was just about non-existent, and so allowing me to travel to other areas of the hospital was both risky and unpleasant (I had to wear a respirator, gloves, etc.). For some of the tests, they used special portable machines - a portable chest X-Ray machine was easily the most impressive of these. A day or two (or maybe three - like I said, I was pretty loopy) after the pain began, something approximating an explanation emerged.
Something in the chemotherapy regimen didn’t agree with me and triggered an inflammatory response in my lungs and chest. It’s hard to say what drug or chemical triggered it, or why that particular place was the focal point of my reaction. The cancerous lymph nodes were embedded in my lungs, and several of the drugs I received can impact the lungs and heart - although generally not with inflammation - so it isn’t completely random. The most worrisome problem, so everyone thought, was the risk of pneumonia; the inflammation caused some fluid to accumulate in my lungs and around my heart.
Seven days after my admission, the pain was pretty well controlled, my bone marrow was pretty well beaten down by the chemotherapy, and I was ready for the transplant. The procedure itself was pretty anti-climactic. There were more doctors in the room than usual, but otherwise, it was just a couple of pink-colored IVs delivered over about six hours. I had been told that it would be a pretty low-key event, and I was warned that the worst likely problem was a reaction to the preservative mixed with the stem cells. The preservative keeps the cells from dying when they freeze and ice crystals form. For some reason, it smells like garlic; the odor sometimes becomes a persistent, foul miasma in the patient’s vicinity for days.
My transplanter explained that the unpleasant part of this for the patient isn’t usually the smell (you get used to it or block it out) but that the way the smell escapes from the body is through respiration. In other words, the chemical is injected into your blood and when the blood runs through your lungs, the preservative comes out of solution and you breathe it out, filling the room with the smell of garlic. Perhaps because he’s never had a transplant himself, I think he failed to explain how this would feel. First of all, the preservative doesn’t smell like garlic exactly. I associate garlic with tasty food, and probably wouldn’t mind its odor too much. It smells like rancid, rotting garlic, or a chemical company’s - badly - failed attempt at imitating garlic’s odor. Second, ‘respirating’ or ‘breathing out’ the odor doesn’t really do justice to the experience. You aren’t breathing in anything unusual. The air is totally normal as it goes into your lungs. But when you exhale, a foul-smelling, rough, smoky-feeling gas passes through your throat - and if you’re really stupid, your nose. The best way I can explain it is to say that it is like exhaling the smoke from an enormous, invisible, garlic-flavored cigarette well past its expiration date, without having inhaled it in the first place. If you can wrap your mind around that description and imagine the invisible cigarette lasting six hours or so, you can understand how bizarrely unpleasant the transplant was.
Everything related to the transplant itself went as expected. My blood counts followed the normal pattern, and my white cell count (which is the best indicator of the transplant ‘taking’) actually rebounded faster than normal. Still, the pain from the inflammation did not go away. I was given a PCA, which is an IV drip that has a device like the clicker attached to a slide projector attached to it. When you push the button, the IV delivers a dose of painkiller, above and beyond the baseline drip. The PCA worked pretty well on my pain, and things seemed to stabilize for a couple of days. They started giving me steroids to counter the inflammation in my chest. With shocking speed, the steroids started to work, the pain began to abate and a small part of me thought I’d turned a corner.
Then one morning, I woke up feeling queasy. Not nauseous, but queasy - sweating for no reason, and feeling like my insides were liquified and sloshing around uncomfortably. Breathing felt… funny. I told the nurse how I was feeling while she checked my vitals (one of the 4-hourly routine checks I mentioned above). When she checked my pulse, she noticed something was wrong. She did an EKG (an electrocardiogram, the thing where they stick electrodes on you and measure the electrical impulses from your heartbeat. Then she called for a doctor. Before I knew it, the room was filled with worried-looking, but briskly competent and disciplined people. This is an unmistakable sign of a pending medical emergency.
They said there was something wrong with my heart, that I was going to be okay, and I should stay calm. I did the only sensible thing under the circumstances: I laid back on the bed, turned on CNN and ignored everyone who wasn’t asking me a direct question. People have commented on my behavior during this incident and said that I was either brave or insane, and the truth is both less entertaining and simpler. CNN was interesting because of the Iran protests, and I didn’t want to get in the way of all the doctors and nurses doing their jobs. I know from long experience that when I get scared or nervous my heart rate and respiration both become more rapid.
In situations where I’ve trained msyelf not to register fear - like public speaking - listening to my own heartbeat is one of the ways I check to see if I am feeling nervous. Watching those people get scary-looking implements ready for use on my body would spike my heart rate. Listening to them talk and use words like “arrest” or “fibrilation” - words I really know nothing about except their association with sudden death would do same. I knew I wasn’t doing myself any favors by paying attention to my surroundings, so I went for the first available effective distraction, the TV.
I didn’t totally freak out, but I also knew exactly what went wrong, and that helped. Before I went into the hospital, they did a bunch of tests to make sure that my system was strong enough to undergo the transplant. Much of the work centered on the health of my heart and lungs. While doing these routine tests, they discovered an anomaly in my heart called Wolf Parkinson White Syndrome. You can look it up online if you like, but it basically means that there is an extra nerve pathway linking the chambers of my heart to each other. Human hearts have four chambers, two atria and two ventricles, and the heart pumps in a specific sequence, moving blood from chamber to chamber in the proper order. Nerves in each chamber activate the muscles in sequence. People with Wolf Parkinson White have at least one extra nerve pathway that connects the atria and ventricles improperly, which creates an improper electrical sequence for heartbeats. If the pathway is active at the wrong time, it can force the heart to beat out of sequence, rendering its pumping action ineffective. Problems with the heart’s pumping rhythm are generally lumped under the heading ‘arrythmia.’ Many people have WPW and it is never detected and never affects them. Other people have the anomaly, but the pathway is so small, or so weak that it doesn’t really affect their heartbeat and they do not need to have it fixed. The majority of WPW cases require no action.
In a gesture that he eventually deemed an embarrassment, my medical oncologist reassured me that the WPW was of no great significance before the transplant process started. There’s no way to know for sure what triggered the episode of dangerous arrythmia I experienced, but there is a working theory.
Shortly before my heart went all skittish, the inflammation in my chest started to resolve, but the problem of fluid accumulation continued. Perhaps as a result of these two processes, I developed both an inflammation of the pericardium (the sack that surrounds the heart) and a pericardial rub. That is an audible - with a stethoscope - rubbing sound produced by repeated contact between the sack around the heart with the heart itself. It’s pretty rare, but distinctive - so much so that a bunch of doctors came to listen to my heart so they could hear something they’d read about but never actually heard. For whatever reason, these pressures on my heart exacerbated the latent rhythm problems caused by the WPW. Most of the time, arrhythmic beats are either pretty close to the normal rhythm or self-corrected. But if the arrhythmia is bad enough and its cause is unresolved, it can escalate until the heart can’t get itself in proper sequence. It goes without saying that if that problem isn’t fixed, the patient eventually dies. That’s what started to happen to me.
When my heart began beating out of sequence, everyone knew it was connected to WPW, which meant it was an electrical problem.They feared that what started as atrial fibrillation (quivering of the atria, the upper chambers) would get conducted via the excess pathway to the ventricles, and trigger a fatal ventricular fibrillation (ditto, lower chambers). Everyone seemed to know what needed to be done - the real problem was that all the cardiology equipment and medicine - and the cardiologists - were in another part of the hospital, four floors down. A debate about whether to move me to the equipment and experts or them to me ensued, but I missed it. Stuff was run into my room over the next 15-20 minutes, and I was given a bunch of drugs to normalize and calm my heart.
Once the experts were present, they performed an electrical cardioversion. They calmly explained they were going to use an electrical device to reset the rhythm of my heart. I said, “like, the thing where you yell ‘clear!’ and you shock me?” The doctor said, “no, this isn’t that exciting. Here, take a look.” He gestured towards a machine sitting near him, and held up what looked like a set of salad tongs and said “actually, we’ve already zapped you a couple of times and you didn’t seem to notice.” Truthfully, I was busy watching TV and didn’t notice them positioning the tongs, or the resulting zapping. I also decided everyone was better off if I continued to be ignorant as to the precise timing and nature of the zapping, so I returned to watching television and missed all the subsequent zapping episodes.
After about an hour, most of the drama was over. A lengthy discussion about whether or not to move me to the cardiac floor ensued. That floor had more expert doctors and specialized equipment, but none of the environmental protections to keep me and my compromised immune system safe. Essentially, they were deciding whether to run an increased risk of another heart-related incident or an increased risk of an infection. When stem cell transplant patients die (about 1% of the time), it’s usually of infection. Ultimately, it was decided that the safest bet was to try the anti-arrhythmia medicines the cardiac people recommended while keeping me on the oncology floor. If things deteriorated, I imagine that decision might have been reconsidered.
There were two immediate consequences to having my heart go sideways on me. First, I had to take medicine for the arrhythmia. I don’t really know why, but one of the medicines triggered a kind of hallucination. First, I would feel like I was having a partial out-of-body experience. Not looking down on myself from the ceiling, more like hanging out on my own shoulder like a pirate’s parrot. Second, I would lose the ability to sense things outside the immediate six or so inches in front of my face. Third, and occurring at the same time as the weird sensory-deprivation thing, I developed a strong feeling of being crowded. It was a little like developing a very sudden and severe case of claustrophobia. Everything in the immediate vicinity - the food tray, the IV tree, the dresser, the blankets on my bed, seemed extremely cluttered and way too close for comfort. One of the arrhythmia experts asked me about whether I had this reaction and told me it is relatively common, and that some patients find it so bothersome they switch medicines. I certainly would have switched medicines had the reaction not gradually faded over the next couple of weeks.
The second result of the heart problem was that my mobility was dramatically restricted. I had to be connected to a monitoring machine 24/7 (except for showers and trips to the toilet). Aside from the aggravation inherent in being confined by the length of the electrical leads to a circular space with a diameter of about 8 feet, being monitored this way produced a number of unforeseen annoyances. First, the version of the machine that the oncology floor owned was basically a useless piece of crap. Like most monitoring machines, it measured electrical impulses and a small computer inside helped determine if they added up to a normal heartbeat. Of course, none of these machines actually touch the heart. They use electrodes connected to leads that measure impulses in other parts of your body that are linked to your heartbeat. The trouble is that if a machine is poorly designed, the process of aggregating the data from those other impulses into a picture of the heart can get messed up. In this case, the machine was too sensitive. Standing up made it think I was having a heart attack. Typing on the computer made it think I had an irregular rhythm. Ditto urinating. My cell phone interfered with it, as did my Kindle.
That might not have been too big a problem, if not for the fact that the machine was wired directly to the nurse’s station. In a way, this was comforting, since if I had a heart attack or something, they would immediately see it out there and come running. On the other hand, it was also extremely aggravating for all concerned, since the monitoring machine brought the nurse running about every 15 minutes. Since it did this all day and all night, it was hard for both of us to relax. Eventually they switched me to a slightly better, more modern wireless version of the same machine that malfunctioned slightly less.
The third aggravating result of being linked to the monitor was that I could not walk to the bathroom without advance permission and planning. 90% of the time, this wasn’t a problem. But occasionally, one or the both of us (me and my nurse) forgot to pre-position the necessary equipment outside the bathroom. Again, this was aggravated by the large quantity of IV fluid I was given. If the fluids were poorly timed and we had not pre-positioned properly and a nurse could not arrive in time with the necessaries, catastrophe could ensue. Numerous innocent beverage containers were befouled in such incidents.
Before being admitted, I wondered how I would take to temporary virtual imprisonment. To my surprise, I did not mind being confined to a single room for three and a half weeks. Between TV, sleep, the Playstation 3 and a lot of visitors, it was extremely bearable. I also knew it would end fairly soon. Certainly it wasn’t very much fun - but it wasn’t too horrifying. I was pretty astonished, therefore, by how much worse it was to be trapped in the immediate vicinity of my bed/the heart monitor. Being attached to the machine probably reduced my living space by a factor of three or four. You wouldn’t think the difference between 100 square feet and 500 square feet would be so noticeable. I didn’t even really notice how oppressed I felt until they started trying out the wireless monitor and I got a taste of semi-freedom.
My immune system actually recovered very quickly. I would have gotten to go home early if not for concerns about my heart and the pain in my throat and chest. When I finally did get out of the hospital, I mostly wanted to sleep without being bothered every few hours. If the oncology ward is a prison, the first few weeks at home are definitely house arrest, and not very much fun at all. I also had an infection in my throat the first week and a half, and that caused escalating pain and fevers. I did get off hospital food, but I have been on a restricted diet for the last three weeks.
Yesterday, 30 days after the transplant, was the first day I was allowed to eat raw fruits and vegetables, go out in public without a mask and gloves, eat in restaurants, etc. In addition to being physically weak and easily exhausted, I experience extreme hot and cold flashes with drenching sweats. All of this is relatively common among stem cell transplant patients and is medically unremarkable, although unpleasant.
As of now, I take medicine to control my arrhythmia. At first, there was no way to know if the medicine was working, and consequently there wasn’t much confidence in my ability to live comfortably and safely indefinitely. A surgery, called an “ablation” was called for - except that with my clotting and immune systems compromised, it would have to wait. This week I saw the cardiac arrhythmia doctors. They did an EKG and found no evidence of Wolf-Parkinson-White on it. That means the medicines are effectively controlling the arrhythmia, and everyone can breathe a sigh of relief. It reduces the need to rush into the surgery, and makes avoiding the surgery entirely a defensible choice.
Not having the ablation means staying on the medicines for the rest of my life. Over time, the medicines can have some negative side-effects. Plus, they’re not 100% effective, and if the past is prologue, they could fail at the worst possible time. Having the ablation means having surgery, which is never pleasant. It’s done using sedation and a local anesthetic, which means the patient is awake and talking to the doctors the whole time. You aren’t really conscious of pain, but you’re capable of speech, which is odd but useful.
In any heart surgery there’s the risk of bleeding, or a catastrophic heart failure of some kind, but those are pretty uncommon. This operation also has a pretty low probability of infection, because it is done like an angioplasty. Two incisions are made near the groin, and catheters are inserted into the heart through the inferior vena cava. The catheters are used to map the pathway electrically. My pathway is actually along the middle of my heart, near the septum (the membrane that divides the heart lengthwise). Once its exact location has been determined, the doctors electrically burn the pathway, destroying it and turning it into scar tissue. Ablations have a success rate between 85 and 95%, and when they fail, they’re usually repeated, and the second operation is a success.
I’m fairly confident that I want to have the surgery, and my oncologist agrees that that’s the right decision. Doing the operation now, while my heart is young and fairly strong, and all I’m doing is medical stuff seems preferable to doing it later. I also want to have the procedure done at MGH, where the head of the cardiac arrhythmia service has been assigned to my case. Wolf-Parkinson-White was actually discovered by an MGH doctor (White), and the arrhythmia service is top-notch. I’m not thrilled at the prospect of being permanently medicated starting in my 20’s, and better here and now than not, so surgery it is.
Some time in the next two months, I will have a PET/CT scan to determine whether or not all the treatment administered at MGH has successfully killed off the cancer. Until then, I am in recovery mode. I’m starting physical and cognitive therapy, and getting ready to leave Boston. There’s not much keeping me here now that the active treatment phase is over. I’ll spend some time with my family in Chicago, and then I might take a vacation before returning to Washington and work.
My doctors have commented that two aspects of my case are remarkable, and I am
confident that they are linked. First, my bone marrow recovered faster than normal. For those of you who kind of lost the medical thread, the point of a stem cell transplant is to administer a very large dose of chemotherapy. The dose is so large that it wipes out the patient’s bone marrow, rendering the recipient incapable of producing white blood cells and platelets. The stem cells, which are harvested in advance, essentially ‘reboot’ the bone marrow and the immune system (Hodgkin’s is an immune system disease). I was well ahead of the curve on the recovery side, which means nothing about how effective the procedure was, but is a good sign that I’m a relatively healthy person for a two-time cancer patient.
Second, my doctors and nurses noticed that I was one of the best-supported patients in the oncology ward. Very few days went by without at least one friend or family member visiting me. Several people came from rather far away. Many brought or sent highly-valued food items and other useful gifts. I often had a number of simultaneous visitors, and the nurses were surprised at how often my cell phone rang. I have spoken to people who felt lonely and abandoned when they were impacted by illness. I struggled to conceal how alien that experience seemed in comparison to mine. I no longer know how to thank people properly; I feel like I am well beyond gratitude with most of you, but you have my thanks in any case. You guys are - collectively and individually - the best.
DS
4 months ago
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