Journey

Well, actually were flying😊✈️. Sorry, I seemed to have used the same title 2x in a row no less but I can’t think of anything better. 😜

Unlike the last trip the flight is packed! But, we’re on the 2 seat side of the plane so this is as good as it gets today.

We’re back from Toronto at about 1am and after a snack and some unwinding it’s 3am before we’re in bed.

Surprisingly, I’m up at about 8:30 doing the usual stuff and planning day 1 of 14 in self isolation. The main activity this week for me is the Tour of Sufferlandria and I’m already a day behind. I’ll need to do 3 rides today to get back on track. No worries, I’ve got all day and then the “gift” arrives.

I get a call from St. Boniface MRI and there has been a cancelation today and can I make a 1pm appointment, which is in 2 hours. So a quick breakfast/lunch and off I go.

As I’m waiting I hear the receptionist calling to fill other cancelations. Surprisingly, many people turn down the opportunity. Given the typical wait time I’m not sure why folks are missing out on the opportunity.

Apheresis, and more specifically leukaperisis is a fancy name for collecting your white blood cells and that’s what today was all about.

Things started off with a bit of a bump due to COVID and exacerbated by the newer COVID variants being detected in the Toronto area. At the hospital entrance there is quite intense COVID screening. As a patient, I‘m good to go. However, Shirley as a “visitor” or “support person”, not so much. The letter detailing my appointment today stated that she would be able to accompany me into the hospital and be allowed into a waiting area near where I’d be treated. The idea being that she would be able to be closer and get me anything that I might need, like Starbucks 🙂 .

However, the very official screener person was not having any of that. Without a very specific letter allowing Shirley to accompany me, he denied her entry. Plus she couldn’t wait anywhere in the hospital building and was asked to go outside where it was -8°C (thankfully we’re not in Winnipeg where it was more like -35°C). Fortunately, she was able to go across the street to Princess Margaret Hospital where she explained the situation and they allowed her to stay inside a sort of “no man’s zone” between the front doors and before you are actually in the hospital. Tears were involved.

Meanwhile I’m off in the Toronto General to the blood lab for some more testing prior to the apheresis. This time I did get a bit lost and asked for some directions (not a guy thing). Blood work completed, it’s up to the 12th floor for the procedure (didn’t get lost this time). I check in and I’m shown to my home for the next 4 1/2 hours.

There is quite a bit of pre-work as the machine runs through it’s self-testing to ensure it’s operational and not leaking, that’s a good thing. Then there is quite a complex procedural thing about the very special box that will be used to ship my blood product to the USA. More on that later.

Then I’m hooked up. WARNING: if you’re squeamish, you might want to skip over the next couple of picture.

First there is the outflow. It’s actually three tubes. One is my blood, another is feeding in an anticoagulant and the third is for something else that I can’t recall right now.

On the other side it’s the inflow. This is my blood minus the part that they are collecting plus an IV of some calcium to counteract the anticoagulant that has been mixed in with my blood on the outflow. Apparently the anticoagulant can cause some minor side effects, none of which happen to me.

So while I’m in the chair I can’t move too much and I’m limited to one handed texting and browsing social media etc.

And when we’re all done, here is the result.

This stuff is now being treated like gold. There is an extensive process that must be followed to the letter on a computer system about recording all the various numbers on the above bag, the box numbers, the serial number of the temperature monitoring device that will go into the box with the blood product and a whole lot more. The process takes four different people form various parts of the organization to witness the process and sign off on various steps. Once the box is fully sealed and I’ve witnessed the process I can go. Shortly, a dedicated courier from Detroit will arrive and take possession of the box. He will then drive the box back to Detroit. From there I’m not exactly sure where it’s going but it’s being worked on starting on Friday.

I get re-united with Shirley and we eat some of the lunch we packed and are picked up and driven back to my cousin’s house. We’re both a little exhausted even though it was just a day of sitting around, It’s been an emotional process even though we’ve done it once before and COVID has certainly not helped the situation. We get take-out Thai for dinner and relax with a movie before calling it a day.

Thankful that this phase is complete and that we’ll be returning home on Saturday. It will be approximately 4 weeks before we return to Toronto for the main event. Some time to relax and think and do some more (sort of) normal things.

So I’ve heard that some posts might be too detailed or too technical. Well, today will be more of a sight seeing tour and staying more lighthearted. By the way the title is a bit of a sound guy joke.

Today’s testing is brought to you by Toronto General Hospital Peter Munk Cardiac Centre, literally directly across the street from Princess Margaret Cancer Centre.

Also across the street from Sick Kids Hostital where I did some time as a young lad when we lived in Toronto.

First up is the Pulmonary Function test. No waiting and practically straight in. A nice Asian woman took me through the process of multiple tests each performed 3-4 times for comparison. “Breath normally, big breath in, breath out slowly, more, more, more, OK breath normally. Big breath in, hold, hold, hold, breath out, breath in then out as hard and as fast as you can, then panting”. Lots of breathing. The technician and I get along well and have some casual conversation along the way. I think I passed.

Next it’s off to the “Echo Lab” for the echocardiogram. Signage in the hospital is great and I don’t get lost dropping down 7 floors and navigating to a completely different area of this very large hospital. I check in, and again it’s almost no waiting. A nice German woman is conducting the test and it’s all business. “Change here, BP, weight, height, lay down here, arm up, on your side, move closer, on your back, breath out and hold, breath in and hold”. Lots of breathing today.

In short order all the testing for today is done, and it’s time for Starbucks and a ride back to our home base. And now, a couple of photographs for no particular reason. 🙂

Tomorrow, it’s the T-cell collection for most of the day and an early 7am start. Wahoo!

The system is proving to be quite efficient and I’m getting scheduled for several things while I’m here in Toronto.

This morning we spent two hours talking with our very lovely social worker who was quite caring and supportive and is available to assist both Shirley and I in several areas.

While we’re talking, I’m getting email notifications from the UHN system about some new appointments. They have a web portal that I can sign into and see most of my appointments and test results which is very cool. Far ahead of anything I’ve experienced in Manitoba.

Tomorrow is a COVID test and dental exam. Wednesday is a pulmonary function test and a echocardiogram. Thursday is the big all day T-cell collection process via apheresis. So far, nothing on Friday and then we return home late on Saturday.

The trip is going well and we’re enjoying our stay with family instead of in a downtown hotel, which is pretty much a ghost town these days as Toronto is in full lockdown.

It was a long day. This might be short.

Arriving at Princess Margaret Hospital (PMH) at 12 noon we head off to find the blood lab which will access my port to draw the blood. This is is not the “normal” place where people without ports or PICC lines go, it’s a special area called “AWA”, the Ambulance Waiting Area. The AWA is where they stage people on stretchers awaiting ambulance transportation. And, oh yeah, they also collect blood from us “special” people. 17 tubes of blood later I‘m good to go for the ECG.

For the main part of the afternoon, from 1:30 to 5:45, we meet a lot of people, answer a lot of questions, hear a lot of information and sign a lot of consent forms.

The good news is after laying eyes on me they continue to think I’m a good candidate for the CAR-T therapy and things are moving ahead. The main doctor explains the process, risks and benefits in quite a lot of detail. The CAR-T coordinator explains the logistics, talks some more about the company and product that they will be using to modify my T-cells (Kite Pharma Inc., and the YESCARTA product).

The blood work and ECG are just the tip of the iceberg in terms of testing that will be done prior to the infusion of the modified T-cells. Here are the ones I know about today. A tuberculosis test, a 2D echocardiogram of my heart, a pulmonary function test, a dental exam, an MRI of my brain and a PET scan.

This Thursday, February 11th is the appointment for the T-cell collection. The process is identical to the stem cell collection and is likely to take the better part of the day.

It’s a lot to take in and it will take us a couple of days to absorb all the information and more fully comprehend what lies ahead. Thanks for standing with us.

Our 1st COVID era flight, very strange. We arrive the requested 2hrs in advance and we are literally the only passengers in the terminal.

We’ve been here one hour and have not even seen a plane. Then 1 Air Canada flight arrives and lets of 20-30 people. I’ve been on red-eye flights and late night flights and never seen the airport this empty. One restaurant is open, everything else is closed.

Not very many departures on the board

I overheard the gate agent say there currently are 27 people on the flight which I guess is good for social distancing, and she just confirmed that we currently have the whole row to ourselves. Our plane has just arrived and only 35 people get off. The Boeing 737-700 has seating capacity for 143. I don’t think they are making money on these flights!

Today, we had our first direct conversation with the University Health Network (UHN) CAR-T coordinator Andrew and learned a lot of stuff about our upcoming visit to Toronto on February 5th.

The day will be pretty jam packed with activities. Prior to our 1:30pm appointment I’ll get some blood work and an EKG while learning how to navigate around the 1st floor of the Princess Margaret Hospital.

Then its up to the 2nd floor to find Hematology North and check in. Shirley & I will meet with a number of people and talk about quite a lot of stuff. We will be introduced to the staff physician who will be responsible for my treatment, a fellow/resident who will assist the primary physician and take my history, vitals, and examine me (?!). We will also meet the CAR-T coordinator Andrew in person for more detailed explanations and consent paperwork. Finally, a social worker, whose purpose will become clear later.

There are two different products for CAR-T therapy and during this initial visit the physician will decide which one is best for my case. My blood will either go to New Jersey or California depending on which product is selected. I’ll also get registered with the selected vendor for their travel assistance program to help with travel costs and accommodations.

Collection of my blood will happen ASAP after the vendor/product has been selected and the date of collection will likely be known on Monday February 8th. It is highly likely to be done on or before Feb 12th. The lymphocyte collection process sounds like an all day affair hooked up to a machine with blood out one arm and back in the other arm. This is quite similar to the collection process involved in the Stem Cell Transplant process that I had back in May 2020 except this time they are collecting T-cells.

During the visit they will determine if any interim treatments are necessary. Interim treatments might be steroids, chemotherapy (in Winnipeg), radiation (in Toronto or Winnipeg). Also, based on the initial visit they will decide if any additional scans are required.

An MRI scan (in Winnipeg) of my brain will be required as a baseline before the the infusion (getting my modified T-cells back) as will a PET scan (in Toronto). When they are satisfied with all the test results I’m good to go for the infusion.

However, prior to infusion, I’ll get some chemotherapy as an outpatient in Toronto. This is to “clear out” my current lymphocytes (aka kill them off) and make “room” for the CAR-T lymphocyte cells. Sadly, contrary to prior info, there will be hair loss involved yet again. Oh well.

Once the chemo is completed I’ll be admitted for a minimum of 7 days for the infusion and monitoring post-infusion. Once I’m discharged from hospital there is another minimum of 30 days where I need to stay within 40 minutes of the hospital.

During this 30 days there will be some pretty intense monitoring and follow-up. Twice a week I’ll need to return to the hospital for blood work and checkups with a nurse/nurse practitioner. On all the other days of the week, I’ll get a phone call where I’ll report my blood pressure, oxygen levels, temperature and advise them on my condition and any symptoms. At the end of 30 days or when they decide I’m good to go home there will be a final in hospital review.

Shirley has been cleared for all the consultation appointments as my “support person”. She has responsibilities to keep me in line and they need to explain her duties in person. When I am admitted she can visit twice a week. She can also drop off/pick up stuff anytime and it will be shuttled to and from my room. However, she can’t attend any tests, blood work or the collection process.

Phew, that seems like a lot eh? I don’t think there will be anything new before we have the first Toronto appointment so likely nothing on the blog until Saturday February 6th.