Hickman Line Insertion

Just a quick update today: I had my Hickman Line "installed" yesterday at Vancouver General Hospital. It has three lumens - one for chemo, one for beer, and one for coffee. This is a picture of me trying out the coffee hose.

I am playing the waiting game now. The hope was that I would be admitted to the hospital immediately following the Hickman insertion, but there was no bed available.

I will write another update once I am in the hospital. I really hope I get admitted within the next day or two so I can be out by Christmas!!

Thanks for reading,
Christopher

LP Headache Update

My headache got a lot worse yesterday. The fact that this was day 9 was pretty worrying, so I decided to drive myself to the ER at Vic General around lunchtime. By the time I got there the headache was so bad that I was squirming in the chair at the admissions desk, and my blood pressure was 200-over-something. They got me into a bed within about three minutes, and after telling the ER doctor what was going on I almost immediately fell asleep, presumably from the exhaustion of so much pain and stress.

About half an hour later an anesthetist came to introduce himself, and explained that he would be giving me an epidural blood patch, whereby he would draw approximately 20cc of blood from my arm and inject it near the site of my lumbar puncture. The purpose of this is to "plug" the hole from the LP, and restore the spinal fluid pressure, since the pain was caused by my brain "sagging" due to the spinal fluid leak.

The procedure took about fifteen minutes, and afterwards I was instructed to lie flat on my back for while they monitored my blood pressure and pulse. I fell asleep again but woke up several times when the blood pressure machine kicked in. Each time the numbers came up on the screen they were lower, so that was good!

After an hour I was allowed to leave, and lo-and-behold, when I stood up and walked to the car, my headache was gone! The only thing that remained was a very stiff lower back, but that was an acceptable trade-off for the severe debilitation that had taken over my life for the past nine days.

I am frustrated a great deal by these events. Not only because I was immobile for more than a week (during a time when I was planning to exercise to prepare for my stem cell transplant) but also because when I was at Vancouver General Hospital on Thursday for my stem cell collection I asked about an epidural blood patch and was told "Oh we've never really done those here, but keep lying down and if your headache gets worse when you're back in Victoria definitely go to the emergency room."

Don't get me wrong - the nurses and doctors showed great concern for my headache, but short of giving me pain meds (which didn't help) they were unable to offer any solution.

It is also important to note that as a chemotherapy patient I am at a much higher risk of developing deep vein thrombosis. It's important that I move around and walk as much as I can to minimize the risk of a serious blood clot, so the fact that I spent the greater part of 10 days lying flat on my back was a pretty bad move. But what can you do when lying flat on your back is the only reprieve?

The anesthetist in Victoria told me that it's unusual for an LP headache to persist beyond 2-3 days, and if it does, the standard procedure is a blood patch. He seemed a bit surprised that nothing was done on day 7 when I was in Vancouver.

So now I am left wondering why I was given an LP in the first place if the hospital had nothing in place to deal with the consequences of an extended spinal fluid leak. Going through something like that for nine days is completely unacceptable.

LP Headache & Stem Cell Collection

Remember in my last post how I mentioned that I had a lumbar puncture last Thursday to find out if the cancer had spread to me central nervous system? Remember how I said it was a "relatively simple procedure?" Well, it turns out that just because a procedure is simple, doesn't mean the it will be free of side-effects!

On Saturday evening I was at a little going away party with my friends, and I started to develop a headache. Whatever, right? Well it got so bad that I had to lay down in the car on the way home while Kaitlin drove because I thought I might lose my dinner.

Since then, the headache has been the bane of my existence. It is so debilitating - a throbbing, stabbing, pressing feeling - like a demon is trying to push its way through my eyeballs. I've never had a migraine but I now have sympathy for people who have to deal with them because I imagine this is quite similar. The only thing that eases it is if I lie flat on my back.

Apparently this headache is quite common after a lumbar puncture. You'll recall that the doctor removed some of my spinal fluid, which means that there is now a pressure imbalance in my head because the brain is normally floating in this fluid. When I sit or stand, a tiny bit of fluid is likely still leaking out the hole from the procedure as well, which means the only way to "fix" it is to lie in a supine position. Nothing else works. I've tried every combination of painkillers, coffee, and steroids, and they do absolutely nothing.

The frustrating thing is that when I lie down the headache resolves itself quite quickly, and then I want to get up and do stuff, but if I do it comes roaring back. This made driving to the mainland on Wednesday, and sitting in morning rush hour (between my parents' house in Langley and Vancouver General Hospital) yesterday morning a couple of excruciating experiences. I had to pull over to the side of the road a few times and go lie down in the back seat.

I am hoping the headache resolves itself today. The doctor told me yesterday that they usually resolve after 24-48 hours, but it's not unheard of for it to last up to two weeks.

In other news, I went for my stem cell collection yesterday. Again, it seems like I am "that" patient. You know, the one who has all the little hiccups along the way. As soon as the nurse looked at the veins in my arms she said "We can't use these. There's nothing here." I know that chemotherapy can kind of wreck a person's veins, but come on!!

To make a long story short, I was sent downstairs for a little surgical procedure where a temporary line was inserted in the side of my neck, down my jugular vein, right up to my heart. Gross hey? It was a pretty simple procedure though, and the doctor put some local freezing in my neck so it didn't hurt or anything.

Once that was done, I headed back up to the 6th floor to begin the stem cell collection... two hours late, at 10:30 AM.

I've included a little video here where the nurse kindly explained the collection process, but basically I was hooked up to a centrifuge machine for six hours. It sucked my blood out one line, separated my stem cells, and pumped the blood back into me through the other line... over and over and over! Pretty neat, hey?



People often need to return one or two more times because the machine didn't collect enough stem cells, but luckily at 4:30 PM the results came in and I was good to go! I decided that since I wouldn't need to return to the hospital until Monday that I would bust my buns back to Victoria to spend one last weekend with Kaitlin.

So here I am, lying on the couch, hoping that when I stand up my headache will be magically gone, because all I want is two more days of quality time with my wife before I go away to Vancouver and become a vegetable for five weeks!

Thanks for reading,
Christopher

MORE TESTS!! NEW DIAGNOSIS!! PREGNANCY!!

  MORE TESTS  
It has been a week and a half since my last post (not including my daily video check-ins) so here we go with another update:

First off, I got the heart test results from November 4th and... well... I have a good strong heart!

I also got the CT scan results and they showed my tumour has shrunk quite a bit which is great news. Remember that I don't need to be in complete remission before my stem cell transplant, I just need to demonstrate chemo-sensitivity, i.e., that the chemo actually does its job.

I am still waiting to see the results of my pulmonary function test, but I'm not worried about that one. The doctor who performed the test made several comments about me having good lungs.

On November 6th I had a dental consult. This is to identify potential sources of infection like gum disease, tooth decay, tooth abscesses, etc. because any of those things could lead to a bacterial infection which could spread to my blood while I'm immunocompromised. They should have just phoned my regular dentist and saved me a trip into town though. Even I could have told them my mouth and teeth are perrrrrrfect! ;)

Remember that all this was happening in the days following my Monday November 3rd chemo session, so in terms of how I was feeling - well - I was slowly on the mend. By the weekend I was well enough to go for a hike with my brother Jeff and my buddy Brad.



This past week was quite busy with more tests and appointments:

On Monday I went over to Vancouver for another appointment with the stem cell doctor. Nothing to report from that. It was an 11 hour travel day, for a 15 minute appointment.

On Tuesday I had to do a 24 hour urine collection which is exactly what it sounds like: I had to pee into a container every time I went potty and then bring it into the hospital lab on Wednesday.

On Wednesday I spent my morning in the hospital getting bloodwork done, as well as having an ECG of my heart, and a chest X-RAY.

On Thursday I went to Vancouver (again) and had a Lumbar Puncture. This was a relatively simple procedure where the doctor (using local freezing and a needle) withdrew some spinal fluid and replaced it with a small amount of chemotherapy. The purpose of this was to make sure my cancer hasn't spread to my central nervous system. Luckily, I found out, it hasn't.

On Friday I met with the apheresis doctor in Vancouver. She is the one who is in charge of my stem cell collection procedure next week. She went over the whole thing, answered questions, and checked my veins to make sure they were adequate for the procedure. She also discovered some blood clots along one of my superficial arm veins, which is not the best of news. I have to try to get rid of them using a warm compress and some local inflammatory drugs, and hope that they don't begin to appear in other deeper veins.

As I mentioned in my last post, the purpose of all these tests is to make sure my body can handle the stem cell transplant. So far, so good!


  NEW DIAGNOSIS  
My oncologist phoned me last week to give me some interesting news. You may remember that two years ago I was diagnosed with PMBCL which is a type of Non-Hodgkin's Lymphoma. We assumed this was a relapse, but my biopsy from September has shown otherwise. I now have Hodgkin's Lymphoma, or more specifically, Nodular Sclerosing Hodgkin Lymphoma. There seems to be some uncertainty now about how this is related to my last cancer, but my oncologist said that the pathologist sent everything to someone else in Vancouver for a second opinion. According to my mom's research, PMBCL and HL are closely related and people who get one will sometimes have a "relapse" where the other one appears. This change in diagnosis will not affect my current treatment plan, and my outlook is apparently still the same. It is still interesting though!



  PREGNANCY  
We found out in September that the high dose chemo and stem cell transplant would likely leave me infertile. This was a pretty big blow because we were planning on starting a family sometime next year.

With only a couple weeks to go before I started chemo, we went to a fertility clinic where I gave some samples to freeze for later use. Then we had a discussion about how expensive it was, and how much it's going to cost to use those samples in the future. We decided that perhaps we should try to squeak one in naturally before I started chemo.

We literally had one weekend for this to work.

And what do ya know... it worked! Kaitlin is pregnant, and due on May 22nd, which is my 30th birthday! This is such exciting news for us in the middle of an extremely trying time in our lives, and it gives us something incredible to look forward to in the Spring. Not only that, but we still have my samples in storage at the fertility clinic for if and when we ever want a second child.

At times it has been somewhat tricky to navigate the waters of pregnancy hormones and tiredness vs. cancer stress and chemo side effects, but overall it was a pretty smooth first trimester. Hopefully it continues that way!

That's all the updates for now. I am heading to Vancouver next Wednesday and will be there until after Christmas, so the next few days will probably be quite busy preparing for that. I will likely do another post next weekend, after my stem cell collection on Thursday.

Thanks for reading,
Christopher

Chemo Cycle 2 Video Check-Ins

I got to thinking that all the videos I've been posting on Facebook and Instagram lately have been made to show what I look like when I'm feeling good - doing pushups and being silly and showing off and stuff. I thought that maybe people would want to see the other side of things, i.e., what I look and feel like in the days immediately following a chemotherapy session, so I made some little video check-ins. The check-ins run from October 27th to November 7th, and I had chemo infusions on the first and eighth day.

You can navigate to all the different clips by clicking the "PLAYLIST" button on the top left of the video box below, or if you hit the play button it will automatically go through all of them.

Vital Organ Test Day 1

Today I spent a good chunk of my time at the hospital getting some tests done in preparation for my stem cell transplant. Since the transplant is an extremely intensive process, the doctors need to make sure that my body will be able to handle it, which I'm sure isn't going to be a problem given my age and overall health.

The first test I had was an RVG Scan of my heart. Click that link to learn more - it's super interesting stuff! Basically the technician took a sample of my blood, mixed it with a radioactive tracer, and then injected it back into my vein. I lay in a machine that looked a bit like a CT scanner, and a special gamma camera took pictures of my heart by detecting the radiation given off by the tracer. I was also hooked up to an electrocardiogram, which monitored my heart rhythm and synced it with the images. I wasn't able to view it because of dumb hospital protocols, but the technician said the pictures they get at the end are essentially like short time lapse videos that show how my heart pumps my blood. See, I told you it was cool!

The next test I had was a CT scan of my neck and chest. I've had lots of these before, but I am eager to get the results because it will show if the chemo has actually been shrinking my tumour this whole time. Please keep your fingers crossed, because my tumour's response to chemotherapy is a big determining factor in whether or not my transplant is going to be successful.

The final test I had today was a Pulmonary Function Test. I sat in a glass box for about 45 minutes and did a bunch of breathing exercises into a hose hooked up to a computer. It was pretty neat because the computer was actually right in front of me so I was able to see a realtime graph of my breath! The good thing about that was I could mostly understand what I was seeing and my lung function is great. Being a trumpet player has paid off I guess!

These were just the first of several more preparation tests I will need to do in the next two weeks. I still have to go for a chest x-ray, a dental consultation, another heart test, a 24 hour urine test, more blood work, and a lumbar puncture.

I had my "Cycle 2 Day 8" chemo infusion yesterday, but I've been feeling alright for the last couple days. Don't forget to go take a look at my video check-ins on YouTube to see how I'm doing on a daily basis.

Thanks for reading,
Christopher