30 Days

Well, it’s been 30 days since my “escape” from the hospital post stem cell transplant procedure and things are going really well IMHO. 🙂

Bridge under the railway in Keewatin, Ontario taken from the boat.

On Day 2 a walk around the block did me in and yesterday I did a fairly fast 30km group ride with the Rat Portage Cycling Club in Kenora, which included a long hill with 8% grade and I survived! Not last up the hill and about mid-pack of 24 riders overall on the ride. f course I socially distanced 😉 and stayed in the back of the traditional mid-ride photo op.

I’m taking less naps and feeling much more energetic and numerous other things have improved since getting out. Still no hair but that’s OK, less work and it’s cooler in the summer anyway.

Next up is a Dr. visit for some blood work and touch base on August 7th.

Progress

Its been 20 days since hospital discharge and today was the second in person follow-up with the doctor.

I’m continuing to improve and several bodily functions are returning to a more normal status. A couple of days ago I noticed a real positive change in my energy level and went out for a 56km ride which went quite well.

Today’s visit with the doctor was for blood work and a “how are you doing?” visit. The blood testing results continue to improve in most areas which most likely accounts for my increased energy levels. Platelets dipped a bit but, hemoglobin is up which is good for energy and bike riding and I’m sure a host of other things too. Normal hemoglobin is 140 – 180 and platelets in the range of 140 – 440, so still well below the guidelines.

The white blood cells are recovering and up from the last doctor visit and from an all time low of 0 in the hospital. Still a ways to go as the “normal” range is 4.5 -11.0. Key takeaway is that as the WBC improves I’ll be more able to fight off infections, viruses etc. This could come in handy these days.

Next doctor visit is August 7th. Then it will be a PET scan on August 20th and a review of the PET scan results on August 25th.

I’m still taking it pretty easy but I do have a group ride planned for this Wednesday. I hope they take it easy on me, or I’m up to the challenge of a faster and longer ride.

At Home

Well, it’s been a little over 9 days since I was discharged from the hospital and it’s great to be at home.

We’ve had our first post-hospital meeting with the doctor which went well with no concerns. On the good news front he indicated that swimming in the lake would be “OK”. I didn’t tell him I was going to do it anyway, but now I’ll take less flack, which is good. The usual blood work was done and things are recovering slowly. My white blood cell count and hemoglobin are still very low which accounts for the fatigue.

Jake the Snake

On the 2nd day at home a 1km walk around the block did me in. A few days later a slow and easy 9.5km bike ride was the max. A few days later a 20km ride followed by a 22km ride. Still going slow and wondering when 30km/hr will be the normal minimal pace.

I can usually manage doing some stuff in the morning and early afternoon and then spending the rest of the day recovering. Yesterday, I took the car in for servicing and walked a lot wandering around Lowes waiting for it to be completed. Then in the afternoon I managed to clean the inside of the car and then it was nap time.

All in all I’m doing very well and looking forward to heading out to the lake tomorrow to be with all the family.

Day +13: Free at last!

Free at last! Free at last!

Thank God Almighty, I’m free at last!

I’m back at home!

While I’m very thankful for my treatment, the HSC, and the staff of D6 who took such excellent care of me for 21 days I am glad to be “free” and back at home. And, truly thankful to God Almighty for my healing.

For a couple of days I have been thinking of using the last lines from Martin Luther King Jr.’s speech. I’d never read the entire speech before today. And while I hope that civilization has made some progress in the last 57 years it’s clear that we have a long ways to go yet.

There are those who are asking the devotees of civil rights, “When will you be satisfied?” We can never be satisfied as long as the Negro is the victim of the unspeakable horrors of police brutality. 

Martin Luther King, Jr., I Have a Dream, delivered 28 August 1963, at the Lincoln Memorial, Washington D.C.

Day +11: Things are looking up!

There are a couple of things looking up today!

First, this is the best I’ve felt since treatments started at HSC. I still tire quite easily with any physical exertion but other that that the body is feeling very good.

The next thing that is “up” are the numbers. Results from this mornings blood work show that the white blood cell (WBC) count has taken a big jump. From 0.6 to 4.0 which is quite close to the pre-treatment value

Also, platelets (12 -> 17) and hemoglobin (71 -> 74) are starting their upward trend as well.

The other big “looking up” thing for the day is that my tentative discharge date is set for Tuesday June 30th at noon! Super pumped to be going home!

About noon today we met with my primary Stem Cell Transplant oncologist who gave us the good news and answered all our questions about going home and any restrictions etc.

Of course, first on the list was going to the lake which he approved of as long as I don’t roll around in the dirt (blastomycosis) or go bush wacking. He recommended hanging around the city for a week to ten days to get used to being out of the hospital and acclimatized to more physical activity.

Seeing friends and family, also a yes with the current COVID guidelines.

Travel, also yes in about 3 months. We’re planning a road trip to Vancouver Island in the fall, so that works out perfectly.

Biking, also yes, starting with going around the block first and working up to longer rides as my fitness allows.

Pretty exciting day for Shirley & I. Thanks to all of you for your prayers and support on the journey, especially over the last 3 weeks. Love all of you!

Day +9: Upbeat and Optimistic

Another very positive day in the way I’m feeling. It’s starting to feel like the difficult part of this journey is coming to an end. Discharge day is now in sight !

Of course the day wouldn’t be complete without something new happening and today that was a transfusion of whole blood. Hemoglobin dropped from 71 yesterday to 64 today and that crossed some threshold that says “Hey! you need blood!”.

Again a no problem procedure with no negative reactions. Being a blood donor for many years it’s interesting to be on the receiving end this time. If you can, please consider donating, you will be saving a life.

Hospital food is getting harder and harder to handle. I think the treatments have made me quite sensitive to some smells and tastes. So, things that used to be sort of OK are now yuck. Thankfully, Shirley delivered another great lunch of homemade chicken noodle soup and a salmon salad sandwich which were awesome.

Home cooking is the best!

Great visit with Shirley in the morning and Pastor Ernest in the afternoon. Also, a good discussion with the Doctor who answered all my questions about the test results and why some of my vital signs are what they are right now. Short answer is that it’s all normal stuff to be expected at this stage in the process and the blood work numbers should start to rebound in the next couple of days. The hair will take longer. 😉

Day +8: Is it hot in here?

So yesterday was a pretty down day. Super tired, no energy, stomach didn’t feel good at all. I didn’t leave the room .

Through the day and into the evening my temperature was creeping up through 37*C to 38.4*C. Well, at over 38*C they get moderately excited and a new protocol kicks in.

The issue is that I may have an infection that is causing the temperature or maybe its just up because of the treatments. I’ m told this is quite typical for my stage in the process.

First up is blood cultures. Samples are taken from three location, the PICC line, the port and a vein in my right arm. The theory is that the multiple samples for the same test might pin down the primary location of the possible infection.

Next is a stronger IV antibiotic every 8 hours. Interestingly enough they will rotate the entry point between PICC lumens 1 & 2 (two different tubes) and the port.

The third action is urinalysis to again look for any infection issues.

Fourth is a chest x-ray, looking to see if there is any issues brewing there like possible pneumonia and who knows what all else.

The chest X-ray is actually a bit of a welcome adventure. This is the fist time I’ve left the ward in 15 days. It’s short lived. A quick wheelchair ride down to the 1st floor in a different building, 3 quick X-rays, and I’m whisked back to my room.

But wait, there is more!

My platelet count hit 1 today, another trigger point, and I get a transfusion of platelets. First time on the receiving end of blood products. I’ve been a long time blood donor with over 50 donations and I’m so glad there is a system like Canadian Blood Service available to us when we need it. As they say, “It’s in you to give”.

Overall I’m feeling much better today than yesterday, I’m pretty sure its the homemade chicken noodle soup that Shirley cooked up at the crack of dawn for my lunch today that made all the difference.

Day +7: Hair Today, gone tomorrow.

My New Look

Somehow I thought might dodge the bullet, not so. Hair was coming out in clumps this morning, so a close trim was in order.

I think I’m in the “exciting” part for a couple of days. Super tired, not interested in eating and running a fever.

A new treatment medication begins today, my old friend Filgrastim (Grastofil). This will help my white blood cells recover faster, help the stem cells integrate into my bone marrow and specifically accelerate neutrophil ( a specific type of white blood cell) recovery.

Day +5: Just another day in paradise

Compared to many peoples situation, even a restricted 21+ day stay in a Canadian hospital is “just another day in paradise”. I have nothing to complain about. The medical care is excellent, the staff are caring and compassionate, and even my hospital room is pretty expansive compared to the living conditions of many. I have three solid meals a day. Staff maintain and clean my room. And, many times a day I hear “Is there anything I can do for you? Anything I can get for you?” Blessed.

However, it is quite a switch from my normal life and there are things that I won’t miss all that much when I’m discharged.

  • Peeing in a bottle every 2 hrs
  • Being tethered to an IV pole
  • Needing help changing my shirt, because I’m tethered to an IV pole
  • Getting my temperature taken at 2am.
  • Hospital food – Seriously, they try hard but compared to Shirley?
  • People winging in and out of your room while you’re in the bathroom or sleeping
  • Rigid meal schedule – 8am, noon, 5pm
  • Not leaving the ward, let alone going outside

I try not to think about these things too much.

I’ve never wanted to go to prison. Several years ago we visited Alcatraz and after standing in a cell and being able to touch both walls at the same time, I again knew I never wanted to go to prison. Being restricted to a limited space for an extended period of time is quite an experience and I think it changes you. I’m not sure how anyone who goes to prison, in conditions far more difficult and disruptive than my hospital stay, manages to handle the emotional and psychological impacts of their confinement.

Thankful for my healing and glad to be here.

p.s. I continue to do well and today was a typical recovery day with no surprises.