This Is Survivable ...

Bad Luck

People sometimes ask me what caused my cancer. My usual response is “bad luck”. It’s sort of a glib reply, but I suppose it’s true. The reality of it is I really have no idea, and I guess it really doesn’t matter.

The Ramp Up

When you have cancer, you get really good at remembering dates. Dates are seared into your memory like a brand. I was diagnosed with cancer on May 15, 2015. But I also remember the day I really started to feel bad (more or less for good) was May 3, 2015. I remember this date, because it was May 1 (a Saturday) that my wife and I went to downtown Ottawa to celebrate her birthday, which is actually April 25, for the record (more dates). We stayed downtown at the rather swanky Lord Elgin hotel, went out for a great dinner, toured the market, bar hopped, and more or less just had a fantastic time enjoying each other.

I hadn’t been feeling well on and off for most of the spring. In fact, I hadn’t been feeling well (on and off) for the better part of 5 years, but it was sporadic and intermittent. We’ll get back to this. My doctor couldn’t figure out what was wrong. But that spring things really began ramping up. I had the usually “feeling crappy” symptoms, but something scarier was happening. I was starting to lose weight. Fast forward from the great Saturday birthday celebration to Monday, May 3. I came home from work and decided to go for a run. I was already feeling a little nauseous and run down, but I decided to push through it, as I always did in the past. I got maybe 2 kilometers, and I had to stop, and start walking back home. I was all of a sudden hit with a terrible wave of nausea, crushing fatigue, and something new; pain. A very sharp pain in my left, upper abdomen, just under my rib cage. I had terrible abdominal bloating as well. I came home and collapsed on the couch and waited for the symptoms (I didn’t know they were “symptoms”, per say, at the time) to go away.

They never did.

Let’s Back Up A Bit

Remember when I said I hadn’t feeling well, on and for about 5 years? It started very slowly, and in a very subtle way, but I can remember being downtown five years prior and walking out of my office building to grab some lunch. As I crossed the street, a thought occurred to me “man, I don’t feel right”. I didn’t feel sick, per say, just a feeling of “un-wellness” centered around my gut. Slight nausea, but not like when you are sick with a bug.  Different, and impossible to explain.  I went for lunch and decided to ignore it. It went away, and I forgot about it. A few months later, this unpleasant feeling showed up again, but this time it was more pronounced, and this time also I noticed I had some bloating, and it didn’t go away right away. It lasted for three days. Exactly three days… This happened every three months for the next couple of years, and it always stuck around for three days, as crazy as that sounds. But now, along with the nausea and bloating, I was having extreme fatigue. Something else was happening too, instead of every three months, the episodes became more frequent. Instead of once every three months, it was happening more like every six weeks, then once a month. Over this five year period I went to see my family doctor many times to describe the symptoms. He was one of these old school docs whose initial diagnosis was always “it’s probably nothing”. Add that to the fact that he was close to retiring and his head wasn’t really in the game. At least that’s how I saw it. He thew out some casual diagnoses over these years. “Sounds like you’re lactose intolerant”, “you have a gluten allergy”, “you are sensitive to alcohol”. I all fairness, these guesses were reasonable, since my complaints centered around the gut, but due diligence certainly wasn’t the order of the day here.

The Hypochondriac In Me …

Fast forward now to that week in May 2015. I became progressively more nauseous as the week went on, progressively more fatigued. I couldn’t eat, I began to shed weight more rapidly. People at work began to comment how scrawny I was looking. I was in pain. I couldn’t get comfortable even laying on the couch. After a few more days of suffering, Lenore finally convinced me to make a doctor’s appointment. I did. I had to wait a week to see him. During that week I already knew something was terribly wrong. In fact, I already knew I had a cancer. It was a done deal. I told Lenore as much, but me being more or less a semi-professional hypochondriac, it was easy for anyone to shrug off my self-diagnosis. In the past, the slightest pain, strain, cough, fever, bump, lump or otherwise sent me to “Dr. Google” and I automatically diagnosed myself with some terrible malady.

This time I was actually right.

Back and Forth Downtown

So came the day for my doctor’s appointment. He examined me, poked and prodded and sent me on my way with orders for an ultrasound the next day. He didn’t mention the “C”  word at all. In fact, he was concerned that I had an enlarged aorta and that my liver seemed to be abnormally large.

The next day I headed back downtown for my ultrasound appointment. By this point, I was feeling really crappy. The fatigue was overwhelming, I couldn’t sleep enough. But sleeping didn’t make me feel any better. My batteries weren’t recharging. And the pain in my upper abdomen was much worse. It hurt to breathe. I got to the lab and sat in the waiting room with lots of other sick people. Finally I got called, went into the little change room and put on one of those weird gowns they insist on you wearing and laid down for the ultrasound. The ultrasound lady was very nice, but all business. Small talk was not her thing. But that was fine; small talk is really not my thing either. I was amazed by how long it was taking, and how many snapshots she was taking. I commented as such, “wow, that’s a lot of pictures you’re taking”. She replied, “your doctor ordered a lot”. That was all she said. I’m sure she saw things that she knew were not good.

The next day I was done work early, and headed to Popeye’s, a nutritional supplement chain, to get some protein powder. At this point I was really worried about the weight loss, and wanted to get some extra protein into me, to try stave off the loss. While I was in the store, my phone rang. My doctor’s number came up on the call display. I knew this was not good. I went outside and answered the phone. His first words were “where are you?”. Doctors don’t normally start phone conversations like this. I knew this was not good either. I told him I was on my way home, and he said “you need to come see me, we’ve found something”. Definitely not good. I told him he was scaring me. He told me not to rush and drive carefully. Back downtown I headed, but I don’t even remember driving there. On the way there I called Lenore to tell her what was going on, but I couldn’t reach her, and had to leave her a message, hopefully without scaring the shit out of her.

“This Is Survivable”

My family doctor has always been a no nonsense sort of guy, and this time was no different. I don’t remember what exactly his first words were, or what sort of preamble he offered, all I remember was the words “it looks like lymphoma”. Scarier words had never been spoken to me before, even though I really didn’t know what lymphoma was. All I knew at the time that is that it is some form of cancer.  My phone rang while I was in the room with my doctor, it was Lenore, of course. I failed in my hopes of not scaring the shit out of her, but my doctor was nice enough to take my phone, talk to her and try reassure her. I remember his words: “this is survivable”.

Lymphoma is a classified as a blood cancer, since it originates in the lymphatic system. There are two main types that you’ve probably heard of: Hodgkin’s and Non-Hodgkin’s. The distinction between these is really what types of blood cell they affect. Between these 2 main types, there are almost sixty sub-types and sub-sub-types. It is the fourth most common type of cancer in North America, and yes, it can be deadly. At this point we had no idea what type I had. All I remember were the very dire words on ultrasound report: “Probable Lymphoma”.

It’s hard to properly express the feeling of shock when you’ve just received a life threatening diagnosis. Again, I don’t remember driving home. I don’t remember who got home first, me or Lenore. I do remember trying to focus on my doctor’s words…. “This is survivable”.

Letting It All Sink In… And Telling The Kids

Lenore was waiting for me at home after the drive home I don’t remember. Since it was spring, and the weather was nice, we sat in the backyard, had a drink, and tried to let it all sink in. Little did we know this was not going to the last bit of bad news (there turned out to be lots more to come), but this was pretty fresh. I called my boss at work and told him what was going on. I was not going into work tomorrow, that’s for sure. We waited for Connor to come home from school. Connor is luckily one of those kids that seems to take everything in stride, either that, or he holds everything inside, much like me. The kid is stoic. Because of this, it’s really hard to know what he’s thinking. I think he took it alright,  partly because we didn’t make it sound as bad as it actually was. We decided not to tell Brianna right away. She was too young at the time, we thought, and far too vulnerable and sensitive. Little did we know she would figure it out all all on her own in time. Pretty easy to do when daddy is dropping weight like crazy and dry heaving all the time.

The Biopsy … aka “How did we get here??”

My first biopsy (the easy one) was my first introduction to Ativan. For those who don’t know, Ativan is a sedative/anti-anxiety drug. I’ve become quite familiar with it. But this day, I figured the doctors knew I was gonna need them. Problem is, Ativan takes a LONG time to kick in. They gave me 2 pills about 10 minutes before biopsy began. Now that I am “intimately familiar” with Ativan, I know it takes about an hour for the full effects (i.e. flying high, then out cold) to be felt. Oh well.  The biopsy itself was not all that painful. We were using a process called a “CT Guided Biopsy”. It’s basically just a CT scan that helps guide the doctors to the tumor where they want to take the sample from. The samples are taken via long needles, but you don’t really feel much due to the local anesthetic and freezing beforehand. But of course, I didn’t have the warm, fuzzy, soothing effects of the Ativan. Yet. That came on the drive home. We stopped for a couple of errands on the way home after the procedure (Lenore was driving, of course), and while she was driving, I looked over at her, and with utter bewilderment, asked “how did we get here?”. The Ativan had kicked in. With full force. She took me home right away, and I slept off the effects on the couch for hours.

The Waiting Game

Now that I knew I had lymphoma, and my biopsy had been completed, we just needed results. The usual way you get results is through your family doctor. The hospital faxes the result report to your doctor, your doctor deciphers the arcane report, then calls you to come in and discuss in layman’s terms. But something really shitty happened while waiting for my results… I got a call from his receptionist; my doctor was all of a sudden on an indeterminate medical leave. I needed to find a new family doctor, fast. Only much later did I actually find out what happened to my family doctor. He was trapped in a house fire and badly burned on his face and legs. So bad, in fact, that he had to be flown to Toronto for treatment. After an initial cancer diagnosis, one’s family doctor is supposed to be the interface with the cancer treatment process. I was about to experience what falling through the cracks feels like.

The Waiting Game, Part II

So after we had the results, and I knew what I had, and what stage I was at, I thought things were going to move quickly. Turns out I had something called “Diffuse large B-cell” lymphoma. It is the most common type of Non-Hogdkin’s, but unfortunately, also the most aggressive. I had heard that before, that once you’re diagnosed with cancer, they tend to drop everything and get you into treatment, as fast as possible. This was not the case for me. I sat by the phone waiting. It never rang, and I continued to get sicker and sicker. Perhaps it was the change of family doctors that caused the hold up, your family doctor is supposed to be your advocate in the cancer journey, and push for treatment. Luckily, I found an advocate through work. Even more luckily, I actually work for a medical organization, and I have access to doctors. One of my closest friends at work, tired of seeing me fester and deteriorate, went and spoke to one of our doctors. This was on a Friday morning. My doctor colleague called me that morning at 11:00, and by 1:00 that afternoon, I had an appointment with one of her hematologist colleagues at the General Hospital. When we met the hematologist,  we immediately liked him. He reminded me of Mr. Bean, and he was actually very funny, unlike the real Mr. Bean. He examined me, and asked me about my symptoms. His response was “yup, you have lymphoma”. The odd thing was, I was having one of the odd days where I actually felt not too bad, so he sent me home, with an appointment to visit the lymphoma clinic on Monday morning. This was the last time for awhile that I actually felt good, and little did I know I was in for a very rough weekend.

I Think I’m Dying

Saturday morning was a rough morning. Since I had become sick, mornings were generally not a good time for me. Just getting out of bed was a chore. Transitioning from horizontal to vertical triggered huge waves of nausea and uncontrolled heaving and retching. Sunday morning was even worse, and now the pain, fatigue, and just general feeling of malaise had become almost unbearable. Sunday was a gray, gloomy, rainy day. I remember spending the afternoon laying in our bed, watching the rain fall, and thinking “I am dying”. I felt (and probably looked) so terrible, that Lenore contemplated calling an ambulance. We decided to stick it out till the next morning since I had my appointment with the lymphoma clinic first thing Monday morning.

Admitted

I don’t really remember much more of that lousy Sunday, thankfully. Monday morning I managed to get myself out of bed, dressed, and Lenore took me to the hospital. We went to Module L at the General Hospital – the Lymphoma clinic. Little did we know this day how intimately familiar we would become with Module L. The nurse sent us to one of the examination rooms where I basically collapsed on the examination table. Besides feeling completely terrible, I was in a lot of pain. This is where I was first introduced to the wonder drug hydromorphone, also known as dilaudid. Dilaudid and I were to become pretty good friends over the next couple of years, much like ativan. Lisa, my nurse (I had no idea at this point that was going to become one of her regular patients…) gave me shot of it in the arm, and within a few minutes I was feeling …. “Ahhhhhh”, and I was able to relax a bit. This is where I met Dr. Faught, the hematologist that was to become my doctor over the first part of my cancer journey. (there is often more than one part to navigating through lymphoma treatment). By the way, hematologists are the type of doctor that treat blood cancers like lymphoma and leukemia, not oncologists. Who knew? I was already learning a lot about lymphoma. Dr. Faught assessed the situation and immediately had me admitted.  Stage 4B cancer. Lymphoma is staged a little differently than other cancers. Stage 4 in lymphoma means that the cancer has spread to organs away from lymph nodes, and that there is cancer present more or less throughout the body. The B indicates that the patient is suffering from symptoms such as fever, drenching night sweat, and weight loss. B symptoms also indicate that the disease is much more advanced, and the chances of survival drop significantly. After nearly six weeks of waiting for treatment, festering and suffering, and getting sicker and sicker, I was finally going to get some treatment. At this point I had gone from a pretty solid 198 lbs to a very scary 153 lbs.

Happy Canada Day

July 1st is Canada Day. More importantly, it is also my son’s birthday. I got to celebrate both by getting chemo for the first time. Let me tell you, it is a scary proposition. Everything I had heard and read about chemo frankly, scared the shit out of me. At this point, though, I was beyond caring. Get that shit in me. I was to receive a regimen of something called CHOP-R, the front line protocol for the type of lymphoma I had. It’s basically a cocktail of 4 different highly toxic drugs, steroids, and a relatively new cancer fighting drug called rituximab. It’s delivered by IV. I realized how serious this was when the nurse came in with the first IV bag wearing a biohazard suit, and there was a red sticker on the bag saying “WARNING – fatal if taken any way other than intravenous”. Wait, what? This was just the first bag, four more to go. The IV drip actually takes about 8 hours, since they want to introduce the drugs into the body very, very slowly. I got to tote an IV rig to a private meeting room to celebrate my son’s birthday with my family. I don’t remember very much of that day after that. I do know that I stayed in the hospital for something like five days. I developed a routine of sleeping, blood tests, and looking forward to my next meal. Yes, you heard that right. When you are in the hospital and bored out your mind, even hospital food becomes something to look forward to. By the way, never eat the roast beef sandwiches. Absolutely the worst sandwich I have ever had.

During this initial stay, I had to undergo something called a “bone marrow aspiration”. It is basically a biopsy of one’s bone marrow to see if the cancer has spread to the bone. This still stands out in my mind as one of the most painful, unpleasant experiences of my entire cancer fight. I don’t recommend it to anyone. The pelvic bone is the largest bone in the body, and therefore gives the best access for a doctor to pull out a good sample of bone marrow. The procedure is basically a long steel needle with a handle on the end. If you have ever seen a gun cleaning rod, you’ll know exactly what I’m talking about. After a little local freezing, the doctor gives the end of the needle a few solid whacks to bust it through the crust of the pelvis. I’m not going to lie, it hurt, even despite the freezing. A lot. I nearly crushed my wife’s hand during the procedure. Apparently the medical students observing the procedure also found it to be a little upsetting. Dr. Bean had to pause and tell one resident to sit down before she passed out.

The plan was to have my CHOP-R every 3 weeks, for six treatments. That’s just under six months of misery. I could handle that no problem. Just as my original hematologist told me, “Every 3 weeks… after 2 weeks you start feeling better, and we hit you again”. He chuckled as he told me this. Soon I was home to try recover from the first dose of my CHOP-R treatment.

Side Effects

Most people associate the side effects of chemo with nausea, vomiting, fatigue, loss of appetite, weight loss, hair loss. But there are also more obscure side effects. Mouth sores, painful swallowing, unbelievably dry eyes, and weirdest of all, cataclysmic constipation. Even though I wasn’t really eating, for some reason it felt like someone had filled my intestines with concrete. Being so constipated that you are in pain is no joke. On top of that, having all that shit packed in tight adds to the nausea as well. I drank a laxative called “Lactulose” like a drunk doing bar shots. Lenore relabeled the bottle in the fridge “Colon Blow”. It helped me squeeze out little, rock hard, rabbit turds. But not much else. Besides the side effects, I also went through a series of weird food cravings. Eating, at this point, had become pretty challenging, but every now and then I would crave specific foods. I believe that this way my body’s way of telling me I needed something specific. All of a sudden, one day, I decided I had to have radishes. Up to this point in my life, I don’t recall ever even eating a radish, but now, I had to have them. Some other food cravings included watermelon juice, and tuna casserole, and any sort of noodles. Noodles became my go to meal. Not only are they bland and easy to digest, as an added bonus, they are pretty easy to throw up, when the need arises.

“The Wrinkle”, More Side Effects, and Hospital Food

Besides dealing with the side effects and misery of the CHOP-R, I also had another “wrinkle” thrown in, just for fun. It turns out that one of the tumours that had accumulated, was growing on my spine. Besides the pain caused by this tumour pushing on my spine, my doctors were concerned about the cancer jumping the “blood to bone” barrier, entering my spinal column and spreading to my brain. So, in between my regular chemo sessions, I was told that I would need another kind of chemo; something called “high dose methotrexate”. Luckily, the side effects from this particular kind of chemo are not quite so bad, but because of the very high doses I was getting, I had to be hospitalized for 4-5 days for each dose, since the medication is very hard on the kidneys. After the treatment, they would pump me full of another chemical, something called a “rescue drug”, presumably to bring my kidneys up to spec.

While in the hospital I got quite acquainted with the dreaded “hospital food”, but I did find out you could actually custom order your meals, and double up, and even triple up on stuff that you find edible. The “Salisbury Steak” with the mystery sauce (presumably gravy) was quite good, I would eat two or three of those, and mashed potatoes were also quite good, especially when drowning in the mystery sauce and butter. What’s also cool about hospital food is that they let you eat pretty much anything on the menu. No “health food” here… I would double up on the ice cream. What’s not cool is that they would often serve soup without crackers and pepper. The level of barbarity was astounding.

Unfortunately, I also got more and more familiar with the cancer ward with each stay. My first stretch there my roommate was a crotchety, but entertaining old guy who was a Professor at the University of Ottawa. He had something called Multiple Myeloma, another type of blood cancer, often untreatable. While I was there, a doctor and a priest came in our shared room, pulled the curtains closed, and told him he had three months to live, and he should probably get his affairs in order, if he hadn’t already. I left him my contact information. I never again heard from him.

It is also impossible to sleep in the hospital. What does a sick person need more than anything to recover? Sleep, of course. Everything  in the hospital conspires against sleep; the IV pumps that would constantly malfunction or get blocked and beep incessantly, the lights were always turning on and off, bells ringing, doctors being paged, doors slamming, and the more or less constant sound of someone puking. What I came to call “The Song of my People”.

The methotrexate had its own side effects; kidney damage and hiccups. The hiccups were more annoying, by far. They would last for days on end sometimes, and made eating very difficult. I had three more of these hospital stays for the methotrexate treatments, and each time I shared a room with someone else under treatment for various forms of cancer. I became very familiar with the suffering and misery that is the 6th floor cancer ward at the General Hospital.

Nurses

At this point, I would really like to mention the nurses that I have dealt with through my experiences. Long and short of it: nurses are awesome. Every one knows that nurses do all the hard work. The doctors get all the glory, make the big decisions, and get the big paycheques, but it is the nurses there doing the daily grind, taking care of patients. Every single nurse that I dealt with was truly an angel, and truly awesome. I love them all.

Not Quite There Yet

I made it through all the rounds of chemo without too much trouble. I was actually starting to get used to feeling like crap all the time, and eventually got to the point where I stabilized enough to function. I’m sure a lot of the drugs they had me on helped a lot as well. Most importantly, I had two anti-nausea drugs prescribed that worked quite well, so I was able to get some semblance of appetite back, even though I couldn’t taste anything. Chemo kills fast growing cells,  and taste buds are fast growing cells. I was eating well, gaining weight, and even slowly managed to get back in the gym. I made it part of my daily routine; eating, working out, sleeping. Finally, just before Christmas I was finished with all the chemo, and I was scheduled for something called a PET (positron emission tomography) scan. It is basically a CT scan with a twist. Because cancer cells have an affinity for sugar, they prep you for the exam by injecting you with a radioactive glucose solution (they actually bring out the syringe containing the radioactive solution in a lead box!), and they also make you drink a couple litres of some very vile, very chemical tasting liquid. After about a twenty minute stay in a giant imaging tube, I went home to wait for the results. I was feeling pretty optimistic. Two things I have learned since then while waiting for results: (1) It is very stressful, it actually has a name; “scanxiety”, and (2) if they call you back the next day, it is not a good thing. They called me back the next day, with an appointment time. When we met with Dr. Faught two days later, she explained, in great detail, the results of my scan. Of all the tumours I had (spleen, stomach, groin, spine and neck), the only one that remained was the one on my my spleen. Backing up a bit, this is where the doctors think the lymphoma originated from. The tumour on my spleen originally was the size of a softball. Now it had shrank down to the size of a grape. But it was still there, I still had cancer.

Radiation

The next course of action was radiation, hopefully to shrink the small tumour left on my spleen. I met with a radiology doctor named Dr. Semant, who was very nice, and explained the whole process to me. He was a pretty upbeat guy. I liked that, it was contagious. I was scheduled to start twenty daily rounds of radiation on January 2nd. I don’t really remember, but I’m sure I got pretty drunk on New Year’s Eve.

After all the chemo I had already had, radiation was going to be a piece of cake. The best part of radiation treatment, well the only part that is really even passable as “good” is that you get some free tattoos. Let me explain. I was scheduled for 20 rounds of radiation, aimed at killing the tumour on my spleen. They gave me three small tattoos, one on each side, and one on my upper abdomen, right about where the spleen is. This is so that when I went into each treatment, the technicians would know exactly where to aim the radiation ray-gun at. So on January 2nd, this became my daily routine. Get up, eat, work out, drive to the hospital for my treatment, go home, eat lunch, then nap. As an aside, one thing that I found that really helped me during various stages of my treatment was having a schedule. Since I wasn’t working, having some semblance of a schedule really helped maintain my sanity, and kept me from thinking too much. Thinking too much is not a good thing sometimes. Having a schedule also allowed me to feel like I still had control over my life.

Thankfully I was right about radiation, it was pretty easy. The only side effect was some nausea (apparently patients who have radiation around the abdomen all suffer from nausea to some degree). The doctor had warned me that localized burns were possible as well. He was right about that. Right around week three, I developed a big, nasty burn on my back that looked a cross between sunburn as psoriasis. No big deal, and still better than chemo.

The Thrill of Victory, The Agony of Defeat

I finished radiation treatment at the end of January 2016. The course of action now was to just wait. Apparently even after the treatments end, it takes awhile for things to settle down while the radiation does its thing.  So I had a PET scan scheduled for the end of March, two months later. At this point I was basically in a holding pattern for the next couple of months. At least I was feeling pretty good.

Finally near the end of March, I got the call for an appointment for another PET scan. This was going to be a fairly monumental one. I had gotten through the front line CHOP-R treatment, the methotrexate and the twenty radiation treatments. I was feeling pretty optimistic.  Remember when I said before that if they call you right away with your scan results it is not a good thing? I think it was a day or two after my scan that they wanted me to come in for the results. I thought nothing of it, though. I was convinced that I was going to hear those magic words, “congratulations, you are in remission”.

Lenore and I were in the waiting room the day of results. Dr. Faught walked in the room, and I could tell immediately by her body language that it was not good. Her exact words, actually, were “it’s not good”. So much for remission. We went through the scan results in great detail. It turns out the cancer had become more aggressive, and had now spread to my upper back and my esophagus. Not good. We were shocked. I remember very specifically asking the doctor “is this going to kill me?”. I don’t remember the reply.

Salvage Chemo

Things started to move quickly at this point. It looked like we were going to be in for a very busy spring and summer of 2016. The next order of business was something called “salvage chemo”. This is basically what doctors call the “last resort” chemo when nothing else has worked. I now officially had relapsed/refractory lymphoma. Relapsed meaning the cancer had returned after an initial improvement, and refractory meaning that the cancer did not respond to the regular front-line treatment(s). The best of both worlds.  Thing were moving so quickly in fact, that we got a call the next day for an appointment the following day to have a PICC line inserted. A peripherally inserted central catheter is a tube that is inserted (usually) on the inside of the arm around the bicep muscle, and extends into a major artery. Since I was going to be getting a lot of IV’s and injections, this would make things a lot easier, and save my veins. Chemo is very hard on the veins. Getting the line put in didn’t hurt at all, but one has to be very careful once it is in, since it can very easily be pulled out. Another issue is that it has to be kept dry, so showering all of a sudden became more difficult. Things were moving so quickly, in fact, that I had an appointment to start chemo the same day as my PICC line was put in, but at a different hospital. Nothing like getting to hang out at two different hospitals in one day. The new chemo I was on required me to come in to the hospital every day for dosing. Besides being busy with this, we also had a lot of doctor’s appointments. One of them was to meet my new medical team – the Bone Marrow Transplant team at the Ottawa General.

The plan was to get me a transplant as quickly as possible. When we first met our new team they made it very clear that time was of the essence. I asked a hypothetical question: “If I don’t do this, how long do I have?”. The head doctor replied, very matter of factly, “three weeks”. Sign me up.

The Warm Up

The ultimate goal was for me to receive something called an allogenic bone marrow transplant. The end result of this would be a new immune system, one that would recognize, and destroy cancer cells, since my current one really sucked at this task. At a very high level, how this is accomplished is by wiping out my bone marrow, and replacing it with someone else’s. I didn’t realize this, but your body’s immune system actually originates in the bone marrow. Bone marrow is the manufacturer of blood cells, including the pathogen and disease fighting white blood cells. The bone marrow is destroyed with a specific cocktail of chemo drugs. My doctor described it as a “lethal dose” of chemo. The only thing that was going to bring me back would be an infusion of someone else’s stem cells (the stuff that makes bone marrow), and a process called engraftment would happen; the new bone marrow would propagate.

The catch with this is that it usually takes around three months to find a suitable donor from which to get the stem cells that would eventually become my new bone marrow. I didn’t have that long… The interim plan was something called an autologous bone marrow transplant. Basically this involves harvesting my own stem cells, doing the bone marrow reset, the infusing my body with my own stem cells. This would reset my immune system well and long enough to keep the cancer at bay while waiting for a suitable donor.

The preparation for the auto stem cell procedure is interesting. In order to collect enough stem cells from an extremely sick person, the body has to be “tricked” into producing them in sufficient quantities by a drug called neupogen. This drug is (unfortunately) an injectable, and even more unfortunately, has to be dosed every day. It is usually injected into the stomach fat in the belly; at this point I really didn’t have a lot of stomach fat, but Lenore got very good at giving needles. Neupogen is also an extremely expensive medication – around $1500 per dose. I needed one dose a day for two weeks. For those not doing the math in their heads, that $21000 dollars worth of medication. Very luckily, we were covered through our health plans at work for all prescriptions.

Stem cell harvesting involves a heavy gauge IV to be inserted in a vein in each arm. The needle has to be heavy gauge because the blood is circulated to the collection machine under relatively high pressure. Because there is an IV in each arm, there really is nothing to do, since you can’t move much. Urinating was a bit of an issue, luckily I had Lenore there to help me out with that (holding the bottle, among other things). But going pee in a hospital room with a bunch of other people around, all the while having someone else help out (even if it is your wife), is not easy.

Preparation for the transplant (wiping out the bone marrow) involves more chemo. This time around I was to be slow dosed with a new cocktail. In order to have the drugs slowly introduced to my body, I had something that resembled a baby bottle attached to my PICC line, and strapped to the inside of my arm. There was a bladder inside the bottle that air pressure slowly pushed the chemo in. Having this setup attached to me was not enjoyable. It really made sleeping difficult.

A week or so later, the big day arrived. I was to the get the infusion of my stem cells that had been harvested. It’s really not a big deal; it’s sort of like a blood transfusion. The stem cells are brought into the hospital room in a hermetically sealed container. They are preserved in a solution, that when metabolized by the body, smells exactly like cream of corn soup. I couldn’t smell it, but anyone who walked past my room certainly could. I got to experience this smell later, when a guy in the hospital room next to me (during one of my random stays) went through the same process. As I walked past his room, I got a whiff of that nasty cream of corn, and felt sick to my stomach. To this day, neither Lenore or I can stand the smell of cream of corn.

So now that I have been through both types of bone marrow transplants (both auto and allo, in that order), I now see that the auto was just a warm-up for the big one. After the first transplant I felt like shit. Like the worst I think I have ever felt. I was so sick. I didn’t know at the time that in comparison to what was coming, this was a piece of cake.

The Real Thing

The summer of 2016 was basically spent in recovery mode from the auto transplant. As the summer went on I got a little better, and a little stronger each day. We also got some good news. A donor (and a sufficient match) had been found for my allogenic transplant. We were scheduled for some time in September.

When we got the word that my transplant was scheduled for September, there was a lot of preparation work to do beforehand. I went for all sorts of tests, including a lung endoscopy (turns out I had developed pneumonia), pulmonary fitness tests (to establish baselines), heart tests and various other tests I don’t recall. Besides these tests, I had to go through some immune-suppressive “conditioning” that would lessen the chances of rejection after the transplant. Interestingly, the drug that was used for this purpose (called anti-thymocyte globulin) is derived from proteins from rabbits. It took three 8 hour sessions to complete the infusion, which meant three very long days in the hospital, and three drives to and from the hospital, since it was an out-patient procedure.

So the way the stem donor thing works is that there is a database of donors who have been carefully and thoroughly tested, doctors look for the closest genetic match possible in the database, and when they find a match, the stem cell harvest process begins. It could be anywhere in the world. I suspect the process is very much like the one I underwent for my auto transplant. I really have to admire people like this. As I already explained, it is not a trivial undertaking.

September 20, 2016 was the day I received my donor stem cells. What becomes known as a “re-birthday”. It’s really not an exaggeration; it gave me a new start, and a second chance at living. The actually day of the transplant is almost anti-climatic. A courier arrives with a beer cooler full of donor cells. It takes less than hour for the infusion. By this time I had something called a Hickman line installed. It has the same function as the PICC line, but goes in through the chest, and directly into the aorta. It requires surgery to install it.

Back And Forth

Once I had the infusion of my donor stem cells, it is basically Day Zero. The trick is to make through each day. One day at a time. Initially the doctors attempt to keep on an out-patient basis, but because of the daily monitoring they need you to come to the hospital every single day. They assured me, though, that eventually the out-patient thing would be impossible, and I would be admitted. It was just a matter of time. The last thing a sick person wants to do is get out of your nice comfy bed, get dressed and sit in a car for a daily trip to the hospital. My wife was one and only care-giver, and somehow managed to take care of me, work a full time job (remotely from home and the hospital), take care of two kids, and manage a household. I was useless. She did it all. Amazing … To this day I don’t know how she it without having a complete mental breakdown. Keep in mind at this time, my surviving this ordeal was still very much in question. I had only one job to do – not dying. She had many. The main purpose of the trip to the hospital each day was so that my medical team could check my vitals, and get all my blood counts for the day to make sure things were going in the right direction. After a bone marrow transplant, the patient is basically starting from scratch. All the important blood cell counts start from exactly zero. Arguably, the most important metric is one’s white blood cell count (specially neutrophils) which in indicates that the new immune system is reproducing and engrafting. Unfortunately, the “conditioning chemo” they gave me made me so sick, that I had to be hospitalized. As I mentioned before, chemo radically affects the cells in your mouth and throat, and I was in so much pain from mouth sores, that I couldn’t eat, and they had to put me on a feeding tube. That didn’t work out so well, I puked it up the first day. Eventually they were able to get the mouth sores under control and I was able to go back home.

GVHD

One of the most dangerous side effects of an allo transplant is something called Graft Vs. Host Disease. Everyone has heard of people who have organ transplants, but the body rejects the new organ. This is similar, but in reverse. The newly engrafted immune system assumes that the host’s body is a foreign entity that needs to be eliminated. So the immune system goes to work doing exactly that. It typically attacks the eyes, liver, kidneys, skin and digestive tract. I got it. Bad. After the transplant, the doctors put me on some immune-suppresent drugs to try get the new immune system to calm down a bit (drugs like tacrolimus and prednisone, which have their own nasty side effects). Tacrolimus is an anti-rejection drug that doctors often prescribe to organ transplant recipients, to prevent rejection by the host body. One of the long term side effects of this drug is actually cancer, scarily enough.  The first indicator of GVHD usually a skin rash, on the hands or in the groin. I can’t remember how long it took to set it, but one day I remember looking at my hands, seeing an angry red rash, and thinking “Oh shit, here we go”. Before long it has spread to my groin, and lower extremities, to the point where I had open, seeping sores, and I couldn’t even sit down. This was just the start of it.

The doctors bumped up my dose of tacrolimus, but by that time I was already in full-on GVHD mode. Next stop was my liver and kidneys. I eventually become so sick and so weak that Lenore took me to the hospital and was admitted immediately. Things became a little fuzzy at this point, but I do know that I was close to death. I had ballooned up to over 200 lbs, and my ankles were the size of tree trunks since I was now in full-on kidney failure. I wasn’t aware of this at the time (I was basically in and out of consciousness), but one of my doctors took Lenore aside and told her that she should probably “prepare for the worst”. Somehow, over the course of three weeks I was able to recover, and was finally able to go home.

When I first came home I wasn’t able to walk because I had become so weak; I had to use a walker like an old man. When Lenore brought me home from the hospital, my neighbour had to come over and help me up stairs. My first night home from the hospital did not go so well – I was so pumped full of fluids from my kidney failure, that I couldn’t make it to the bathroom without pissing my pants and all over the floor (I know, not the most flattering mental picture). This was how messed up I really was. My troubles with GVHD weren’t over though. Over the course of the next few weeks, it went after my eyes, and my vision became so progressively worse that I had to see an eye specialist. Next up was my gastro-intestinal system. In the form of terrible stomach cramps. Then it was my hearing, I developed tinnitus in one ear, and partial deafness in the the other. Most of the GVHD effects have subsided or gone away completely, but my hearing never really improved, my vision gets very blurry when I am tired, and my kidneys act up now and then.

100 Days

Right from the beginning, my doctors told me that 100 days was a significant milestone. If you make it to 100 days, you are doing great, and everything gets easier after that. In theory. I don’t really remember hitting the 100 day mark. In fact, the entire winter was more or less just a hazy blur. One day faded into the next. It really was just a survive one day at a time thing. Early on before the 100 day milestone, I experienced some very strange things. One of the more interesting things was the complete and utter destruction of my mental and cognitive skills. My speech had become slurred to the point where I had to learn how to speak properly again. My writing was indecipherable, and I couldn’t remember how to read anymore, and I had trouble recognizing and remembering the words for even common objects. I learned later that was probably a result of brain damage caused by the high levels of chemo. I still struggle with the cognitive problems to this day (the dreaded chemo “brain fog”). There were some other crazy things along the way in this early stage as well. One of them was that my eyes had changed. I don’t mean my vision – my eyes literally looked like someone else’s. I remember too having visions as if I was seeing out of someone else’s eyes. I think now that this was part of the process of my donor’s DNA taking over my body, strange as it sounds.

Recovery

When I first spoke to my transplant team, they told me that it takes a full year to recover from the allo transplant. At the time, I didn’t believe them. Especially after my experience with the auto transplant, which was easier by an order of magnitude. I thought I would be back on track within three months. I was wrong. They were right, and then some. There were some bumps along the way. I was still really prone to infection, since my blood counts were still relatively low. As a BMT recipient, you live in mortal fear of infection. One winter night I ended up getting an infection in my knees, of all places. My doctors always told me that if I ever get a fever over 38 degrees Celsius, I was to go to the ER immediately. That night laying bed I knew I had a fever but I determined to sleep it off. I was done with hospitals at this point, but after a few hours I started to develop pain in my kneecaps (as crazy as that sounds), that it felt like I had been shot. The pain was astounding, and I got so sick that Lenore had to call an ambulance. Turns out the pain was an early sign of sepsis setting in, and I was put on IV antibiotics, with a very strong admonishment from my doctor about “not leaving it so long next time”. Because of the compromised immune system I seem to catch every cold, flu and stomach bug that comes along, and usually hits me much harder. In the late fall of 2018 I developed an infection in my neck (of all places) that doctors later found to be a staph infection. It was gruesome and painful, and eventually resulted in a chunk of my neck being surgically removed.

Remission

As I write this now, I am currently just past my 3 year anniversary of remission. September 20, to be exact. This the day that I received my donor transplant in 2016. I have hit some very significant milestones over these three years. Year one was massive, since the risk of mortality from the transplant is highest during the first year. Year two was even more massive, since after two years post transplant, the odds of lymphoma returning drops by almost 70%. Year three my doctors told me that the likelihood of relapse now is very, very low.

I still get sick a lot, and am currently doing intravenous immune globulin therapy once a month to help with the immune system, a sort of super-charged blood transfusion. My best friend is also a cancer survivor from long ago now. I remember way back when he was in recovery that getting cancer was the best thing that ever happened to him. This seemed like complete madness to me, but I now get it. When you are faced with the very likely prospect of your own demise it gives you a remarkable perspective on life. You learn gratitude and not to sweat the small shit (and it’s all small shit). I am a much happier person now. Physically, in some crazy way, I actually feel better now than before I got cancer. Yes, I still get sick all the time, and my energy levels are a lot lower, and I’m tired all the time. Remember from the beginning of this story how I was misdiagnosed? I think I was sick for a very long time, a slow insidious creeping illness that I was constantly fighting against. I don’t have that anymore.

My Donor

Since day one of my transplant I thought often of my donor. The protocol for contacting your donor is that you have to wait 2 years before you can start the process. Two years seems to be pretty significant number, huh?  Why the two years? Well, to put it bluntly, if you are going to die from the bone marrow transplant (and the mortality rate is around 30%), odds are it will happen within two years of the procedure. I imagine it would be upsetting for the donor if they allowed early contact, and then the donor recipient doesn’t make it.

So I hit my two year mark, and right away called one of my nurses, who hooked me up with Canadian Blood Services, who handle the matching process. It took almost 3 months to finally get a response (and I was getting very discouraged, since I knew some donors preferred to remain anonymous). Finally I got a call from my nurse with my donor’s contact information. He is an amazing young man from Germany named Stefan (turns out a lot of stem cell donors come from Germany – they have an amazing donor program, something we should be doing in Canada).  We email each other regularly, and I hope to visit him someday. Thank you Stefan for saving my life!

Dedication

This story about my journey is dedicated to one very special person. My wife, best-friend, care-giver through the bad times, and crazy side-kick and lover through the good times. Lenore. I love you. Without you, I would not be here today. It hasn’t been easy, but we did it. Together.