Smile Today… Things Are About To Get Much Worse – Stem Cell Transplant

The next (and hopefully last) step of this cancer journey involves a stem cell transplant paired with 6 consecutive days of high-intensity chemotherapy. When this was proposed they gave me a binder explaining what to expect. Those pages could have been written by Stephen King.

After 5 days of injecting myself with an Alex Rodriguez load of bone marrow steroids, my blood was oversaturated enough with the necessary cells for extraction earlier this week. I went into a specialized room in at Cancer Care, and they pulled out two of the biggest IV needles I’ve ever seen. These things looked like bubble tea straws. They spent about 30 minutes digging around in my arm for a vein to accept the IV (while being told that relaxing will make it easier), then they did it again for the other arm. Blood was removed from my Right arm, cycled through a machine that filters out the stem cells, then reinjected back into my Left arm. They cycled 18 liters of blood. To put this into perspective, the total blood volume of a normal person is about 5.5 liters, so they did my whole blood volume over 3 times. I felt like “Bloodbag” in the first few scenes of Mad Max where he was hanging upside down and having his blood drained… I’ve decided not to include a picture for those who don’t get the reference.

Next, I’ll be getting a PICC line installed. This is like a USB port… but for people. They are going to put a catheter into one of my veins, and leave it there for 3-4 weeks. This way whenever they need to draw blood or administer chemo, they can just plug into my bloodstream through the PICC line without having to poke me and find a vein each time. For some reason, I really hate the idea of a tube protruding out of my skin that leads directly into my veins… On second thought, a reason isn’t that hard to come up with.

In order to have this procedure done, I will be admitted to an isolation ward at the Health Sciences Center. Anyone who enters the ward has to be screened by a nurse to make sure that they don’t have anything that could spread to any of the 15 patients on this specialized ward. After 6 consecutive days of chemo, I will literally have no immune system. ALL the cells that fight infections in my body will be dead, and all the cells that make those cells will be dead. This means that the normal bacteria in my GI tract could run rampant through my body and shut down entire systems… something as minor as a tooth cavity could ultimately lead to a life-threatening infection. I would tell you the names of the drugs, but I’m pretty sure they could be used in biological warfare. If you typed them into Google, I’m almost certain you’d get placed on the “No-Fly list”

If this were a home makeover show, they would be stripping me right down to the studs, digging up the landscape and doing a COMPLETE rebuild. You know those vaccines you get when you’re a child that last your whole life? I’m going to have to get all of those again because the cells that carry that information will likely be killed off by the chemotherapy meds.

I wonder if I’ll need to get baptized again.

After all of this, they reinject with the stem cells that were removed, my bone marrow will rebuild, and I will start to rebuild my immune system. Once I am able to walk to the bathroom and back to bed by myself (likely 3.5-4 weeks) I will get to go home.

I’m not going to go into detail with the likely side effects, potential risks, etc. because it’s just sort of horrifying. I’m trying to write the “not too depressing” cancer blog.

When I get home from the hospital, the fun doesn’t stop! I can’t be near pets, dust, aged cheeses, unvaccinated babies, or tofu that hasn’t been cut into 1-inch cubes and boiled for at least 5 minutes. That’s not a joke… those are actually in the Stephen King binder.

My stay in the hospital will begin on Tuesday the 11th, and my doctor projected that I’d be back to my regular self after about 6 months; but with a strong body going in, a healthy diet, and a lot of help from my family and loved ones, I’m ready to prove him wrong.

So it goes.

High Intensity Chemotherapy – As Advertised

torture-chair-530x720Please see the picture to the Right of the “Iron Chair” or “Chinese Torture Chair”. This could be described as history’s most painful stool. With its heyday in 18th century Europe, it was rarely used, and even more rarely seen, but you can imagine how painful it was for those seated when it was called to action.

My first time going through chemotherapy, my body responded better than expected. I kind of expected this time to be no different, but for the past couple of weeks, I’ve been in pretty rough shape. I had a 6-hour session at Cancer Care on October 29th, then before I was feeling any better they blasted me again on November 5th. Yesterday, November 13th is really the first day I’ve felt like myself. In the 16 days following my first treatment, the most exciting thing I’ve been able to do is pit two aristocratic Southern families against each other, and while they were at war with each other, rob them both blind and escape on a stolen locomotive in a blaze of gunfire. You read that right… I’ve been playing a lot of XBox.

Right now, the hardest part about all of this is knowing that next time is going to be worse… and the stem cell therapy will be even worse after that. The anti-nausea meds are working better than last time, but the main side-effect is migraine headaches… so take your pick.

We weren’t sure if I was going to get any good days before I start my next cycle of chemo on the 19th, but now it looks like I’ll have 4! The fictitious aristocrats and 13-year-old online gamers that I’ve been dominating had better make them count.

So it goes.

 

Bad News and Good News…

I have some bad news, and some good news.

The bad news is that we’ve recently been told that the tumor in my chest is too large, and too close to my heart to treat with radiation. As a result, I’m going to have to do a regiment of high intensity chemotherapy and a very aggressive stem cell treatment paired with more high intensity chemotherapy.

The good news is that I’m winning my fantasy hockey pool.

 

This news came as a huge shock to the family, and it’s taken all of us about a week to fully process. To be honest, this time has been harder than the first time. It’s difficult to know that my previous experience was Chemotherapy with training wheels…  what’s coming is Apollo 7.

It’s really tough to recognize that my experience is getting closer to those stories we’ve all heard that don’t have a happy ending.

On the bright side, the tumour is still smaller than it was when we started chemo the first time, it hasn’t spread to other systems in my body, there are still lots of proven treatments available to me, and Ryan Getzlaf of the Anaheim Ducks has returned from his groin injury.

Here are some of the images that have been pervading the thoughts of myself and my family over the last year.

Q: How do you know if someone is on a fad diet?

A: Oh don’t worry, they’ll tell you all about it.

Yeah, I started the Ketogenic diet. There is some pretty good evidence that s

uggests a low carb/starch/sugar diet is good for putting metabolic stress on cancer cells (particularly lymphoma cells). So now I wear a cravat, and spend all of my social interactions talking down on people who eat normal things. It feels pretty great.

 

So it goes.

 

 

I Don’t Write When I’m Happy… and Here We Are

On the bright side, you guys are going to have more of my shitty writing to read.

I’m starting to look at my doctors like cheating boyfriends. I love them, and I appreciate what they do, but I’m having a hard time trusting them. For almost a year, I’ve been hearing “It’s probably nothing”,”ignore that little spot on the PET scan”, “this is probably just a minor infection”, “You MUST have a lipstick in that shade”… I may have embellished that last one.

cheating bf

I feel like the doctors know when to be suspicious, and they’re not always sharing their suspicions with Amanda and Me. Part of me thinks “Dude, just be honest with me, I can handle it and I want to prepare for the worst”, and the other side of me thinks “Amanda and I just had a few really great months together; and the last few months wouldn’t have been nearly as great if I knew that the cancer wasn’t gone and that it’s slowly growing next to my heart.” I so badly wanted to believe my doctors that I just did, and maybe my family is better off because of it… like a cheating boyfriend… you know?

Analogy aside, I have endless respect for my doctors and what they do. I don’t think I have what it would take to be an Oncologist/Hematologist.

The cancer isn’t “back”, but it was probably never completely gone. It’s now just a couple tiny spots in the left side of my chest, and they’re going to get it with radiation therapy. Now that we’re doing some research, we’re learning that when you’ve had a tumour of my size, it’s very normal to follow up chemotherapy with radiation. Radiation is only avoided in “special cases”.

So I’m not special.

My preschool teacher always told me I was… was she like a cheating boyfriend to!? Maybe I’ll come back to that.

I only got this news a few hours ago, so I’m not really sure what’s coming next. All I know is that I’ll be getting radiation therapy every day for 3 weeks, and I’ve been told by a few friends that radiation is a walk in the park compared to chemo… so let’s buckle up for another roller coaster.

 

So it goes.

 

 

 

Last Blog Post… Probably Ever

IMG_0032When things are taken away from you, it becomes very clear what you take for granted. Like eyebrows… man, those little guys did a great job!

Another thing that I’ve taken for granted is minor health anomalies. Now that I’ve had Hodgkin Lymphoma, I’m at a much greater risk for it coming back as a more aggressive form. I feel like every time I get chest congestion, wake up sweaty at night, or lose some weight, it will be impossible not to assume the cancer is back. I’ve become very used to watching my weight fluctuate with no real consequences. I’ve weighed as much as 240 pounds, and as little as 9 pounds 8 ounces, so this is something I’ll have to keep an eye on.

Now I’ve completed 12 successful treatments of chemotherapy in just under 6 months. I’m allowing myself to do a little bit more research on the type of cancer I had. While going through the diagnosis and early stages, I really didn’t want to know all the nitty gritty facts, but now I’m interested. Of all the research I’ve done, this stat really stood out to me. “In 2013, an estimated 9,290 cases of Hodgkin lymphoma were diagnosed in the United States, and 1,180 patients died from their disease. The median age at diagnosis was 38 years” (Cancer Network Home Journal of Oncology)

A little while ago, a friend of mine asked me if I am coming out of cancer treatments with some kind of life altering epiphany. After a bit of thought, I’ve decided that the answer is “yes”, but kind of the opposite of what some might think.

Before my diagnosis, and learning that my cancer could likely be cured, there was about a month and a half where only 1 thing was known. There is a very large, fast growing tumour in my chest. This knowledge lead to a recurring thought that couldn’t be avoided: “Sometimes cancer kills people… What if this kills me?.” Every time this question occurred, my mind always brought me back to the same answer. I found solace in believing that I’ve squeezed more love and joy into my 29 years that many hope to in their entire lives. Of course I was going to fight to my last breath, but if the cancer took me, I’d be able to go with no regrets having lived a great life. This is a thought that I’ll be able carry with me for the rest of my days.

Now that cancer treatments are done, I’ll focus my writing on all the other problems faced by white heterosexual males from upper-middle class two-parent families in Canada.

Just kidding, I’m done.

 

So it goes.

Did That Actually Just Happen…

 

There are a few groups of people I’ve always found a little bit quirky: Engineers, Goalies, and Surgeons. The Engineers and Goalies in my life are going to get off easy today, because I’m going to share a story about the surgeon, and surgery resident who performed my second biopsy. This was the surgery that ultimately determined the type of cancer I had. It baffles me how I have this platform where I share experiences about this whole cancer thing, and I somehow haven’t shared this story. It might be because I almost have a hard time believing that it actually happened.

I want to preface this story by saying that I was lucid while all of it was happening. Because the tumour was pressing against my heart and lungs, the anesthesiologists were very worried about causing a heart attack or further interrupting my breathing, so I was wide awake for the whole surgery. To this day, I’m not certain that the surgeons knew how wide awake I was.

The biopsy took place in mid December because my first biopsy failed. They wanted to try taking cores of the biopsy with a large needle (which I was also awake for) rather than doing an open surgery. This decision was made to avoid the possible complications I mentioned before. The goal was to make an incision between my 3rd and 4th ribs and dig out enough of the tumour to get a good idea what we were dealing with. They had to be minimally invasive because too much swelling in the area could have caused an obstruction in the blood vessels feeding my heart or lungs. The doctors weren’t sugar coating things for me… this was sort of a big deal.

On the day of the surgery, I changed into my gown and got wheeled through the different wings of the hospital to the OR. There I met the surgeon and the surgery resident who were going to be performing the surgery. They took me into a large room with an additional 5-10 people who were going to be helping with the operation. The preparation for my surgery included covering my face with a sheet. They told me this was so that I wouldn’t have to see the incisions, and just incase I had to sneeze or something. They told me the operation would take about 25-35 minutes, to stay very still, and someone started with the local anaesthetic.

While the surgery was going on, I trying to be as still as I could. I was just listening to the nurses chit chatting, and the various sounds associated with the surgery (trying not to think about what was actually happening).

Suddenly, I felt something on my face. The doctor had to put down one of his instruments, and didn’t think to use the table. Instead he used the little indentation made by my brow ridge and my cheek.

Then it happened again a few minutes later!

I thought to myself “Ok, this is a little weird but it’s fine. If they are so focused on the surgery that they’re using my face as a table, I’m OK with it”

More chit chatting, more buzzing and sizzling sounds coming from the surgical instruments

Then they started reefing on my ribs from the inside. Maybe they were trying to spread them so they could get in there, but the force was almost lifting my upper body off the table. I guess the surgeon needed a little more leverage, so he placed a hand on my covered face, and used it as a counterforce to pull on my ribs! My face was covered by the sheet, but my eyes were wide open and my face was being smushed between the surgeon’s free hand and the operating table!

Now I’m starting to think this probably isn’t normal. Maybe they’re used to their patients being totally unconscious for this surgery and they just forgot I was awake… I started thinking about ways to let them know that I’m awake and listening to and feeling everything they do. A little motion of my head probably won’t do the trick, I’m sure unconscious people do that all the time. I’ve got to ask them a question.

My first thought was to ask “so how much time’s left, guys?”, but I didn’t want them to feel rushed! I want them to take their time and feel no time constraints or pressures at all. Maybe “so is it normal for your patients to be awake on the operating table like this?”, but then I didn’t want them to feel awkward about using my face as part of their rib-crowbar.

Just as I was thinking about how to formulate a completely inconsequential question I heard the resident say “This part always makes me nervous, do you want to do it?”

The surgeon responded nonchalantly “no, you should do it”

 

So there I am lying half naked on the operating table, surrounded by people. There are two dudes digging around in my chest cavity, and I for some reason feel self conscious because I’m eves-dropping on a conversation I shouldn’t be hearing. On top of that the surgical resident is about to do something that “makes him nervous”…

This is when the anesthesiologist bailed me out, at least that’s how I perceived it. He said “His heart rate is elevating, Andrew are you feeling OK”.

“Yeah, I’m feeling great, but I could use a sedative or something to calm me down”

That’s when I learned why so many people get addicted to Hydromorphone… the next hour or so was absolutely delightful, and the surgery turned out to be a success.

The moral of the story: Opiates fix everything.

LRG_DSC07840The last month hasn’t been all doom and gloom. Amanda and I took a road trip to Colorado, and we also spent a week in Arizona!

On Friday I will be having my second last treatment!

So it goes.

BACK OFF, B!&*H!

When chemo was about to start, I knew I was lying to myself when I said I’d be OK with letting people help me all the time. Letting people help me, or asking for help when I need it hasn’t been as easy as I thought it would be. I know that people genuinely want to help, and they feel good when they do. But deep down, there is this stupid prideful man that wants to do it all on his own.

However, my Mother in Law, Lillian, is coming for another visit and we’ve come up with a sort of code that addresses this problem seamlessly. Lil will always offer to take over a task, it’s in her DNA, so we’ve developed a way for me to maintain my independence without making it weird.

Let me set the stage for you…

*Andrew is doing some dishes*

Lil: I can do those dishes. You’ve been up all day, do you want to take a nap?

Andrew: I’ll finish up and then go rest.

Lil: Really, I don’t mind.

Andrew: BACK OFF, BITCH!!

*End Scene*

This way I get to subtly maintain my independence, and no one has to know that the “stupid prideful man” was rearing his ugly head.

 

I’ve started playing a new game every morning, it’s called “What’s causing my headache today?”.

Every Tuesday after chemo I start injecting myself with bone marrow stimulants for 5 days to boost my immune system. While they’re doing wonders for my white blood cell count (I can go to public places to watch Jets games), they wreak havoc on the other systems in my body. As an added bonus, I wake up with a mystery headache every morning. Some people like to solve the morning crossword, I wouldn’t trade it for my morning headache.

First I try drinking a Litre of water, sometimes that does the trick. I can always tell when the distribution of water in my body is off because my muscles swell like crazy… which normally I wouldn’t mind, except that it only adds to the pain when I need to ask my wife to open a jar for me.

Hello, Stupid Prideful Man…

If the water doesn’t do it, I’ll try the natural sugars in an apple or an orange. I’m not a doctor, in fact I have a pretty terrible understanding of what is actually happening to my body; but it seems possible to me that I’m metabolizing more sugars by processing the chemo and stimulating my bone marrow. So maybe eating something high in natural sugar will solve the mystery headache?

Spoiler, the fruit has never worked…

Normally by this time I’m getting pretty fed up, so I have a cup of coffee… and to the detriment of deductive reasoning, I usually wash a couple Tylenol down with the coffee. Soooo this usually solves the problem, and teaches me nothing. I guess I’ll have to ride the high of my earth shattering results from my “nausea study” from 2 posts ago.

So it goes.