Author Archives: mikenstn

Four days of chemo complete! I tolerated it well with no major side effects. I get a break for the next two days to get my body ready for transplant on Tuesday.

The transplant itself is quite straight forward … it is really no different than any other blood transfusion that I receive. Almost a non-event given the number of infusions that I have received and will continue to receive. It is what happens post transplant that is almost magical.

Unlike solid organ transplant (kidney, heart, etc.) whose impact can be felt and measured in a relatively short period of time (e.g. is the new kidney producing urine, does the next heart beat on its own), a stem cell transplant is a much more gradual process that starts with the initial infusion and can take up to a year to complete.

The chemo completed yesterday has “nuked” my bone marrow so that the donor’s stem cells can move in and take over. Until the new stem cells are able to take on this duty (approximately three weeks post transplant), my blood counts will drop precipitously, leading to:

• Severe anemia due to low red blood cell counts.
• Slow clotting and susceptibility to bleeding (both internally and externally) due to low platelets.
• Increased susceptibility to infection due to low white blood cell (immune system) counts.

Hence, the next few weeks will involve daily blood tests, frequent adjustments to medications, and periodic transfusions to top up the red blood cells and the platelets whenever either or both of them are dangerously low.

The immune system, on the other hand, is left to decline so that the new stem cells can take over. To protect me, I reside in a specialized ward in the hospital along with patients in a similar condition. We each get a private room with our own bathroom. All visitors must be masked. Visits are limited to one person at a time and I ask that they take a COVID rapid test prior to visiting.

While I have been fortunate to not suffer from any major side effects while receiving chemo, I’m starting to feel the impact that it is having on my body. A bit hard to describe but I have learned over the past few years to detect small changes that later become more significant. All I can say right now is something is happening.

Thanks, again, for listening.

Mike

I’m still trying to determine the frequency of blog posts and the nature of the content that these posts will contain. Please forgive what may be an initial deluge of posts … I have been planning this blog in my head for several months and have a backlog of topics that I’d like to explore along with regular updates on my journey.

Today will be a short post. My sister is coming from Montreal to spend time with me today and tomorrow. She is a nurse (one of many in my family … more on that situation and how it shaped my life in a future blog post) and one of my significant caregivers. Looking forward to spending time with her.

Until my next post, thanks for listening.

Mike

P.S. My sister set the standard for future hospital visits 🙂

My cancer treatment plan is expressed in terms of days pre- and post- transplant (e.g. T-5 is 5 days prior to transplant, T+3 is 5 days post transplant).

T-6 to T-3 are chemo days. Each day I receive two different chemotherapy drugs, both by infusion. T-2 and T-1 are “rest days” to get my body ready for transplant.

So far, chemo has been relatively uneventful. In addition to the chemo, I am given several drugs to mitigate chemotherapy side effects, most notably nausea. While these drugs are doing their job, they do have their side effects 🙂 To protect my liver, I am given steroids which, unfortunately, make it difficult to fall asleep. So, I am offered sleeping pills. *Sigh*

Please don’t take the above as complaining. I know that I am tolerating the chemo well. Just sharing the nature of the juggling act in which my medical team is engaged.

The chemo is intended to destroy my bone marrow so that transplanted stem cells can produce new bone marrow. Hence, it is not surprising that the bone marrow’s main function (to produce various blood cells) is suppressed. Thus, in addition to chemotherapy, today I will also be getting the first of many transfusions over the next few weeks.

Thanks for listening.

Mike

P.S. Since the chemo will lead to hair loss, I decided to be proactive and not wait for it to fall out in clumps. I had it shaved off the day before entering hospital.

My family and I have found humour in my cancer journey. Indeed, we actively seek it out and share it whenever possible. While some of this humour may be a little dark at times, it helps us put the cancer in perspective and offer much needed relief during difficult discussions,

“The Cancer Card” is an expression we use to indicate when I am getting special treatment due to my cancer, often when family members feel that I might be milking the situation or that others are going out of their way to cater to me. It can also be applied in situations where family members use my cancer to get special consideration. 

One example: When playing board games, we often argue who gets which colour of board pieces. I will play the “cancer card” to get the colour I want.

Another example. One of my grandchildren had just finished a shift at a fast food restaurant and was heading out the door to meet their father (my son) for a ride to my house. Their boss asked them to stay behind for a post shift meeting. She responded by playing the cancer card: “I’m going to have dinner with grandfather who has cancer and need to leave now to get there in time.”

Although “the cancer card” started as a humorous poke at the special conditions requested or given due my cancer, the phrase has crept into my overall philosophy about my situation. Growing up, when I found myself in situations that I didn’t like, my mother would lovingly (but bluntly) remind me that “no one said life was fair” and that all we could do was “play the cards we were dealt.”

Until my cancer diagnosis, I was blessed with good health. I seldom got sick, rarely had a headache, and healed very quickly. Then, I was dealt “the cancer card.” While this hand contains “the cancer card”, it also holds a caring wife, children with whom I have strong relationships, supportive friends, and a compassionate employer. 

In keeping with my mother’s advice, I am doing my best to play the hand I have been dealt. I am putting “the cancer card” in perspective given the other strong cards in my hand and facing each day with as much optimism and gratitude as I can muster.

Mike

30 months ago blood tests revealed abnormalities that were highly indicative of some form of blood cancer.

28 months ago I was diagnosed with a rare form of leukaemia.

22 months ago I received a stem cell transplant.

16 months ago my leukaemia was declared to be in remission.

8 months I was told that I had relapsed.

Today I am starting chemotherapy in advance of a second stem cell transplant next week.

This blog chronicles my transplant journey and whatever outcome may result. I am not sure exactly what I am going to share but I am committed to being as open and honest as I can be. By sharing my experience, I hope to offer some insights into what it feels like to be a patient dealing with a life threatening illness.

Quick bio: I am 65 year old engineer with a loving wife and family, and some really great friends, I have worked in the digital health sector for about 20 years, most recently as the Project Director for a multi-hospital health information system roll out. More details in future blog posts.

Mike

P.S. chemo just started