Round 2 Begins

I was indeed diagnosed with cancer again. Leukemia for the second time. These past couple of months have been a whirlwind, beginning with relentless bad that was, eventually, followed by…some good. Hope.

For the first time in six years, I was transferred out of the BMT department at Princess Margaret Hospital. I was no longer a transplant follow-up patient. I am now a leukemia patient. Again. No longer under the care of Dr. Kim, whom I liked a lot. Now under the care of Dr. Karen Yee, who I remember from last time and I remember liking her, too. The ensuing weeks would increase my opinion of her – incredibly intelligent and quite kind and patient, considering she is being pulled in all directions by so many patients at once.

Thing have changed a lot over the last six years. A lot. First of all, the tool used for the bone marrow biopsy is smaller, less ugly, and the procedure is painless. I have had two of them now, one from Dr. Kim and one from Dr. Yee and both were painless. Much better than six years ago. The most painful part was the freezing needle.

Secondly, the pool of registered potential donors is now much, much bigger. Six years of internet and social media marketing has done wonders. Six years ago I was worried about not finding a donor – and was lucky to find two that were a 100% match. Today, I was assured that a 100% match “would not be a problem”. There is also an increase in the amount of available beds at PMH. While I was there in 2017, there was a new wing that was under construction on my floor. Hell, the entire hospital has been undergoing renovations over the last few years. Now there are a lot more beds, and I will likely secure one within a couple of weeks just as soon as I need one.

The chemo treatment has also changed. Six years ago, I was an inpatient getting some very nasty chemo via IV. This time, there is a new chemo in pill form – and I can take it as an outpatient. So that’s what we went with. The process lasts for one month. Over the first six days, I received a needle in my lower stomach (once each day). I also had pills that I took each day – two different kinds of chemo. The needles stopped after six days, and the pills continued for twenty-eight. Seems easy, right?

But there were complications. Almost immediately, I contracted pneumonia. I went to Toronto General Hospital’s emergency department and discovered what a true nightmare it was there. I don’t care about the six-hour wait. That much was expected. I don’t even mind the riff-raff that made up the majority of the waiting room. It was being left in a hallway bed overnight when, it turns out, I should have been in isolation. I had no immunity, with neutrophils at 0.0. I’m in a hallway while sick, often dirty people are walking back and forth, coughing. And when I finally got into a room, still in emergency, the nurses were too overwhelmed to respond to the call button. Oh, the reception desk answered the call button – the first three times – but no nurse ever came. The desk didn’t even bother respond to the next three pushes of the button. I was scheduled for testing in the morning and needed to fast after midnight – including no water. At eleven o’clock, I was using that call button to get some water before my midnight deadline. I didn’t get one.

However, I was finally transferred out of emergency to the Peter Munk wing, where I had a glorious room and a very attentive nurse. This happened literally at midnight the second night I was in emergency. The nurse was happy to give me water, even though it was technically after my midnight deadline by about twenty minutes. That procedure I was awaiting? A Hickman (central) line. Tubes going into my chest, attaching to a ventricle (I believe) – this handy thing allows me to do away with all the needles and instead they just draw blood straight from the tube (and hook up the IV there as well).

After a day in that room, they got me a room at my familiar stomping grounds – Princess Margaret Hospital (PMH), 14th floor. The nurses there were wonderful. I was given steady antibiotics via IV, as well as my outpatient chemo treatments. My blood counts continued to drop and the blood transfusions began (thank you to those who donate!).

The low blood counts led to more complications: dizziness and lightheadedness. I needed to be careful when I stood up and walked to, say, the washroom. The first time I fainted was a direct result of the pneumonia. I was standing and had taken two steps towards the washroom when the coughing it. It seized me and wouldn’t stop to let me breathe. Knowing this, I backed up to the bed again. I obviously didn’t make it because the next thing I know, I was on the floor with my face on something cold and hard. Definitely not my bed. I shuffled around, slowly collecting my senses. I felt something metal. I realized it was the bottom of my IV stand. I needed to call for help. The call button was dangling off the side of my bed nearby – thankfully within reach. The nurse came within seconds, saw that I was on the floor in the dark (it was late at night) and immediately grabbed more help. I ended up with the left side of my face black and blue. And as a result of the fall, I was given a shameful “fall risk” wristband. Ug. I was also given a battery of tests, from an ECG to an ultrasound to an MRI. With low platelets, they needed to check for clotting.

About a week or maybe ten days later, I fainted again. This time was in the morning. A Saturday. I was actually in the washroom taking a leak. I started panting and breaking into cold sweats. I knew something was wrong, but I was in mid-stream! If you’re a guy, you know you can’t cut it off halfway without difficulty. So I tried to finish. I think I did…but don’t remember. I woke up on the bathroom floor (pretty sure my shorts and underwear were back up!). I cried out for help, not really having a voice. I called out again. Then I realized that I needed to crawl back to the bed to get to the call button. How was I going to do that?

But then I remembered – there is a call button in the bathroom! I saw it, hanging on the wall nearby. I reached for it and clicked it. Then I think my nurse came in. “Mr. Dobbs? Mr. Dobbs?” The voice faded. I was out again. Apparently, I was unresponsive and he called a Code Blue. That brought a dozen people into my room before I had regained consciousness. My nurse and another person helped me into a chair. I was finally coming to my senses and I counted fifteen people in the room, including an emergency team. They had an ECG machine right there. I was put on the bed and given an ECG right away. I’m completely bewildered – shocked that this happened, and that all this was going on around me. I felt pain in my ankle, but otherwise I felt fine.

It turned out that the ankle was sprained. Somehow it jammed against the wall as I fell, twisting it awkwardly while I was unconscious. So the repercussions of the second fall now included my not being able to walk for two weeks. An X-ray, ultrasound, MRI, CT scan – I had to go through it all again. And the funny thing is – I had been thinking about asking them to remove the “fall risk” wristband of shame. I guessed asking for that was out the window for a while.

About a week later, I was moved out of an isolation room and into a shared room. But it was fine. My roommate was far away and there was a bathroom and a couple of curtains between us. It still felt very private. My pneumonia was beaten down, and I gradually put more weight on the ankle. After thirty-eight days in the hospital, I was released. I could now get the chemo treatment as originally planned – as an outpatient.

I was back at home for Christmas. At first, I was quite tired a lot and limited my movement. My wife had me exclusively in one chair in the living room – nearest to the bathroom, which she sterilized and wouldn’t let anyone else use it. Yeah, she took care of me. She also completely cleaned out and revamped my office, with help from the in-laws. Oh, and she bought an air purifier that was placed in my section of the living room!

By the time Christmas arrived, I was much more active and much less tired. Being home was good for me. And were extra careful not to have me go back to emergency. Neither of us wanted that nightmare again, so the over-precautions were understandable. Guests were limited. Only a few, and no more than a couple at a time, and only if they felt they were completely healthy. And even then – they had to keep their distance. New Year’s was a quiet one. Just myself, the wife and kids.

Now I’m starting the second cycle of chemotherapy as of today, January 2. My counts have gone up (except neutrophils, which remain hovering close to zero). My bone marrow biopsy showed that my cancer is in remission. And on January 3 I meet with the transplant team to hopefully get a date for my (second) stem-cell transplant.

The next few weeks are big. Things will start to get rough, beginning five days prior to transplant and tapering off about two months after the transplant. I have gained about five pounds, anticipating that I’ll lose about fifteen. So I’m definitely enjoying food right now, guilt-free! My muscle tone has definitely decreased – I’ll have a lot of work to do once this is over.

I will keep you updated. I hope this helps others who are going through this for the second time, the way my posts helped those going through it the first time.