Hotel California

“You can check-out any time you like,
But you can never leave! ” Eagles, Hotel California

That’s sort of the way it feels today. For some reason I thought after the CAR-T process in Toronto that the Winnipeg “follow-up” would be relatively “light”. Not so.

For starters there will be twice a week blood work at St. Boniface Hospital. Then there is Grastofil injections, self-administered twice a week to help my neutropenia, which is low neutrophils, a type of white blood cell which provide protection against various infections. There will also be at least two more rounds of pentamidine.

Then there is this note from my PMH discharge.

Possible hypogammaglobulinemia:  Serum immunoglobulins are pending.  We will suggest to replace with IVIG if IgG less than 4. 

… and sure enough, it’s less than 4 …

All this leads me to today’s new adventure, getting IVIG, not to me confused with IVF 😜

This 2-3 hour procedure will load me up with 40g of immunoglobulin with flow rates increasing every 15 minutes complete with BP, O2 & temperature each time.

Then there is the COVID thing! It gets exciting at a hospital when you go through screening and tell them you have been outside the province in the last 14 days. They issue a “hospital grade” mask and call the area you are going to in order to get an escort to come and get you. Everyone is very nice about it but I’m treated as if I might have the plague. Wait, COVID is a plague! Anyway, this results in full isolation. I have a private room, staff needs to gown every time they come in and I can’t use the washrooms, which means peeing in a bottle. TMI?

My hangout overlooking the parking lot

Well, that’s enough ranting for today. After all it can’t be that bad, I rode my bike to get here. 🚴🏻‍♂️ First ride since March 2nd and first outside ride since February 3rd.

We’re Back

Up early at 5am to make the 8:10am flight from Toronto to Winnipeg. The check-in wasn’t the smoothest and it was good that we had lots of time. We know our bags are a little on the heavy side and likely over the 50lbs limit. As I put the “lighter” bag on the automatic drop off station it says we’re over weight and to see customer service. We get in a line and wait a bit to see an agent. When we put my bag on the scale it’s well under the 50 lbs and the agent says “Why are you here?” He checks the luggage tag and sure enough the other scale had flagged it as an over weight bag. He re-issues the baggage tag and it’s good to go. Shirley’s bag similarly is under 50lbs and sails through.

Next stop is the agent screening carry-on bags. She is making everyone test fit their bag into the sizing cage. Ours will not fit! I “mention” that this carry on bag has flown with Air Canada three times this year alone without any problem. No sympathy, I must check the bag. 😕 Thankfully, the automated check-in system makes short work of this task for a mere $57. Security and COVID screening is all pretty normal and after a long walk we’re at the gate.

The flight is smooth on a nice sunny day and the plane seems to be only 1/2 full, so that’s a good thing too!

Eric picks us up and soon we’re home. The rest of the day is spent unpacking and getting re-organized in our own home, so good.

Day +30: OK, really the last visit

Friday morning, 8 a.m., we’re back down at PMH for one more thing. And of course there is an interesting back story to today’s visit.

My latest medical experience. 😊

Yesterday, during my in hospital clinic visit the CAR-T nurse practitioner says that they want to put me on a new medication and there are two options.

  • A liquid that you take once a day.
  • Another product that you go to the hospital and they administer with an inhalation process and each treatment lasts for 1 month.

At the time it seemed like less trips to the hospital would be a good idea so I opted for the liquid. All good, they send the order down to the pharmacy and I can pick it up on the way out.

At the pharmacy I get the product, the explanation on how to use it, side effects etc. I’m about to pay and it’s $700! This is a small bottle with 21 10ml doses. I have a discussion with the pharmacist who is extremely helpful. She tells me the other product is much less expensive and offers to contact the doctors and talk to them about changing the prescription etc. and will call me back because my ride home is now waiting outside. I’m thinking I can wait until I’m home to start the inhalation product.

We’re about 4 blocks away from the hospital when the pharmacist calls back. They have changed the medication to the inhalation product and booked an appointment for 8am Friday to have it administered and the prescription will be ready at 3:30pm. They really want to have me on this medication before we travel.

So we need to kill about an hour in a city that is locked down and nothing is open. We park the car and walk around for a while until it’s time to get the new medication. When I pick it up it’s $167 but the hospital has covered the cost so it’s $0 to me! 😊

So, what is this magic stuff? It’s Pentamide and it’s for the prevention of the lung infection Pneumocystis jirovecii pneumonia when Septra, a tablet that is dirt cheap, can’t be used because of low blood counts, which is me right now.

It’s a powder that they mix with water and the gadget you see in the picture above aerosolizes the mixture and I’m sucking it into my lungs. The whole process takes about 10 minutes, no side effects and I’m on my way.

Day +29: Last Visit

It’s Thursday, so it’s an in-person clinic day, hopefully the last!

Friday was supposed to be the final hospital visit but due to a change in plans the CAR-T doctors will see me today while I’m already here. This should save another visit on Friday and more blood work which seemed a little unnecessary anyway, IMHO.

Blood work has been sent off, and the vitals look good, so now it’s just wait and see about the results and what all the doctors think about that. Hopefully, (as in confident expectation) they will approve me to go home to Winnipeg and transfer all my care and follow up back to the Winnipeg oncology team.

I get to see quite a few people before I get the final release. Over the morning I meet with all of the CAR-T team, the coordinator, the nurse practitioner, the fellow and the doctor. Plus the nurse who does the bulk of the work with collecting blood, vital stats, documentation and the removal of the PICC line.

This phase of the journey is coming to and end as we gear up to return to Winnipeg. In 3 months (mid-June) there will be a PET scan to confirm the healing.

So thankful for so many things:

  • The staff at Princess Margaret Cancer Centre for excellent care and treatment both in hospital and as an out patient.
  • For staff at Toronto General & Toronto Western for many supporting test and procedures.
  • For friends and family supporting Shirley and I from near and far with love, concern and prayer.
  • For the cousins who opened their homes to us and provided a safe and welcoming place for us to stay and the transportation for the seemingly endless trips to the hospital for various things, an eternal debt of gratitude.
  • For God, Jesus and the Holy Spirit – Ps 91:16 and so much more.

How Long Has This Been Going On?

Well, a lot longer than anyone wanted.

However, in terms of the CAR-T therapy and the travel away from home, it has been quite awhile.

First TripFebruary 4-12, 202110
Second TripMarch 4, 2021 – April 19, 202147
In Toronto57
Total CAR-TFebruary 4 – April 19, 202175

Day +27: One more week

I’m back in the outpatient clinic this morning for another in person assessment and blood work.

Rain and fog this morning – View from my corner office chair.

It’s raining here but I understand Winnipeg has snow and a cold week ahead! Just when you think winter is over there is one more surprise.

Nothing too much to report here. I’m feeling well and a bit stronger every day. No complications and we should be cleared to return home after this Friday’s meeting with the CAR-T team.

On Saturday I went for the biggest walk so far. I have an app that showed a popular trail in the area, the Joshua Creek Trail. However Google maps said the trailhead was ~1hr away. OK, lets give that a go and see what the start of the trail looks like. Once at the trailhead it was “Well, I’m here I might as well walk down it a bit to see what it’s like”. A little while later I‘m telling myself “It’s just a bit further to Lake Ontario”, all the while trying to remember I’ll have to walk all the way back!

A few pictures along the walk.

The Trail
More creek
Swans on the Lake
The Creek
Lake Ontario

So, after the blood work results are back they have decided that I need an injection of Grastofil.

From here is the explanation of why Grastofil for me at this time. It’s actually the third injection since I was admitted to the hospital.

“to reduce the duration of neutropenia (low levels of neutrophils, a type of white blood cell) ”

In addition, they have re-started some other medications to help prevent any infections while my immune system recovers. Apparently, this is all standard stuff for a recovering CAR-T patient.

Just one more week and we should be heading home to Winterpeg Winnipeg.

Day +23: Clinic Day

Nothing to new to report as vital signs continue to stabilize into a more normal pattern. The blood pressure is more consistent between sitting and standing. However, various blood counts are still fairly low but slowly recovering, which is typical with this treatment.

Right now the blood work has been sent off to the lab and my PICC line dressing has been changed and I’m waiting to see if they are going to do anything else while I’m here.

Yesterday I was out for a fairly decent walk, the longest so far, and I felt pretty good. Lots of great trails to explore in the Oakville area.

The main part of the walk was to explore this trail.

Morrison Valley North trail
Bridge over the creek
No leaves but a few wildflowers popping up

I speak with the nurse practitioner and she is satisfied with my test results and nothing further is require today so I’m free to go!

Day +20: SSDD

Same stuff, different day.

Things for me are progressing well. Today, I’m at Princess Margaret Hospital (PMH) outpatient clinic for an in person assessment visit (Monday & Thursday) and my vitals are good except for the blood pressure which is a little low when I stand. It seems likely they will give me some IV fluids to help with that in spite of me drinking 3-4 litres of water a day.

The blog is likely to be fairly quiet for the next week or two as ongoing monitoring continues, SSDD. 😊

My current corner office chair view.

The Chair
A familiar landmark on the left.
SW Downtown Toronto from PMH 14th floor.

Day +17: The Pressure!

I’m up around 8am for a shower & shave (oooh, a big day!) and down for breakfast. But first there are those pesky vitals to record.

For blood pressure they want to record sitting and then standing pressures. My sitting pressure was pretty OK but my standing pressure was a little low even after doing it three times. So, the protocol says call the clinic. 😕 I’m feeling fine, no dizziness etc. but we call the clinic. There are numerous questions and we do the 2pm checking call stuff early since I’m on the phone. The advice is to wait one hour, repeat the BP and call back.

The next round of BP numbers are quite respectable and we call the results in. The advice now is to keep monitoring of course and call if anything weird happens. Saved! No trip downtown to PMH for IV fluids. 😊

A walk in the Forrest

Lunch, a nap, a walk, dinner and some TV will wrap up the day.

Day +15: First Outpatient Clinic visit

Today is the 1st of twice weekly drives down to Princess Margaret Hospital to the outpatient clinic for blood work and an in-person assessment.

We’re up at 6am! This is a bit of an adjustment as I was used to the 6am vitals check and then rolling over and going back to sleep. Today, it’s up, get dressed head down for a light breakfast and coffee plus the vitals check. We leave at about 7am and arrive at 7:45. I grab a Tim’s and head up to the 14th floor clinic.

First up is the blood draw to send it off t the lab ASAP. The 2nd thing is a bit of a surprise! My PICC line has been “leaking” and there is a fair amount of blood. The nurse cleans it all up and applies a new dressing. The blood seems to be clotting OK, I don’t remember pulling on the line and there is no pain at the sight so it’s a bit of a mystery.

At 10:30am they tell me there was a “problem” with a couple of tubes of blood so they need to re-draw to complete the testing. No big deal except this means another 1+hrs in the clinic. Around noon the report comes back and they are happy with the test results and I’m free to go.

Kathy picks me up and we’re back home for some lunch and a nap. Later in the afternoon it’s time for another exploratory walk, this time a bit further that the 1st walk. 😊

Dinner and a little TV watching rounds out another day.