Journey

A bunch of random thoughts about what happened today with my CAR-T infusion.

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As part of the “Confusion Assessment” you are asked to pick a sentence to write using cursive script, something I rarely do thanks to a life long habit of printing due to writing code in the old days. They said to choose a short sentence because you will be writing it a lot over the next couple of weeks. I chose:

I love my wife

I may have mentioned that the UHN has a thing called the myUHN , an online patient portal where you can see all your appointments and test results. Between yesterday’s body swabs, and today’ blood work I had 60 new test results!

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Just prior to the infusion the nurse is setting up the IV with some saline and then some Benadryl and getting me hooked up prior to the infusion. In a very casual and nonchalant way, without a word, she puts this bag on the IV pole.

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This is what it’s all about, the contents of this little bag. “CAR-T cells in approximately 68ml suspension containing 5% DMSO” or up to 200M CAR-T cells.

Shirley asked about the cost to process the cells and it turns out to be $375,000 USD per treatment. That works out to be $5,514.70 USD/ml

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Two people, a man and a women, bring the above bag in its frozen state to my room at 3:30pm. It’s in some special container immersed in liquid nitrogen, very cold.

They warm it up and check several times that it’s my CAR-T cells and that I’m the intended recipient. After that the nurse hangs the bag and the infusion is under way. In under 30 minutes it’s all done.

Everyone is very positive and affirming about me and the probability of the success of the treatment.

The gentleman on the way out stops to talk to us and says he was very “emotional” about our story and journey and stated that he was honoured to be a part of this special moment. It was very touching.

Garry is allowing me to add a few thoughts today rather than just editing for spelling, punctuation, and grammar.

So here goes!

The team that is caring for us asks a bit about us and of course I share how we met and are childhood sweethearts. That we have an amazing family and group of friends supporting and encouraging us and of course many other details. Garry has asked me to be brief so I won’t go into all the details but suffice it to say I felt we heart connected with them.

We shared the previous treatments and expressed our gratitude at having this CAR-T treatment, a wonder of modern medicine, being an option for us and that God would add His supernatural Healing power to the treatment to complete the process.

As the cells began to flow into Garry’s arm I was overcome with such a powerful emotion of thankfulness as I could feel the healing power flow into his body. It felt like I was standing on holy ground. I could sense the loving, powerful , mighty presence of God fill the room.

At that point everyone was quite emotional and of course I was crying, but they were tears of joy and thankfulness.

As Garry mentioned the young man came back in the room after completing all the paperwork and thanked us for sharing our story, that it had been a very emotional and special time for him and that he was honoured to have been part of our journey. That he would remember us and that this was not at all typical.

I also had an opportunity to talk with the woman who appeared to be in charge of the cells and she told me the process went extremely well and she was confident that Garry would respond well to the treatment. She said that our faith was an important part of our journey and that she was praying for Garry as well. We shared much more than that and when I told her that Garry had a blog she asked for the link so she could see a patient’s perspective on going through cancer treatment. She was very encouraging and I felt like I had made a new friend.

Our journey has been long and hard, but through it all we have experienced such incredible love and support from so many of you. And we have also grown in our faith and have seen the goodness and faithfulness of God in so many ways.

I will stop for now as I’m pretty sure Garry will say you need to start your own blog.

Just know, my heart is full to overflow for so many things and we love and appreciate all of you for being there for us.

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Here I am on 15B in the Princess Margaret Hospital.

It’s a pretty small area, a typical hospital room, that I’m sharing with Ernie, my roommate. Sounds like he might be out Friday afternoon and that I might be in for more like 2 weeks which sounds more typical than the 7 day minimum. Who knows, perhaps I’ll be an overachiever.

Lots of questions on how I’m doing, do I have this, that and the other thing? Generally, “no”. Later the Dr says I’m a sought after patient for the nurses because basically other than this one thing, I’m fine. A low maintenance patient and I’m hoping to keep it that way.

Once again there are a multitude of tests. Blood work, chest X-ray, ECG, and a series of swabs of various interesting parts of my body! Apparently, making sure I’m not coming into the hospital with some sort of disease/infection.

At least x-ray was a trip off the ward down to the 3rd floor for a front & side chest x-ray. They let me walk back to the ward on my own! I could have gone AWOL to the Tim’s or something. Security seems lax enough. 😜

It seem like I’ll need to get my head in that game and settle in. It’s only 5:15pm and I’m feeling bored/trapped/stuck and who knows what else. Time seems to have slowed to a crawl. One day at a time, all things are possible.

Today is the last chemotherapy appointment with 4 days to go until infusion.

Some have asked why chemo with CAR-T, good question. It’s called lymphodepleting (LD) chemotherapy.

Lymphodepleting (LD) chemotherapy is given several days (usually 2–14 days) before you receive your CAR T cells, you will return to the hospital or clinic to receive one or more chemotherapy agents. This chemotherapy decreases the number of T cells in your body to make room for the new CAR T cells. This process is called lymphodepletion. The lymphodepleting chemotherapy will be given to you by a nurse or another trained healthcare professional. You will receive these medications through a vein. Fludarabine and cyclophosphamide are usually given daily for 3 days before the CAR T therapy.

From “What is CAR-T therapy” article.

Tomorrow is “moving day” as we transition our accommodations from my cousin Leslie’s in Scarborough to my cousin Kathy’s in Oakville. Thanks so much Leslie for your gracious hospitality, the great meals, the pampering, and the many trips downtown to the hospital.

Unfortunately, this is a pretty familiar process but on a much bigger scale at the PMH. I’m in chair 77 in the Red zone. There are several colour zones and most of the 4th floor is dedicated to chemotherapy. So, a lot of stations for chemotherapy.

I check in and I’m given a pager! I can roam the entire building with the pager and when it beeps I’ve been assign a chair. After waiting for a bit I decide I will pick up some Tim’s as unfortunately there is no Starbucks in the vicinity. But as soon as I get in the Tim’s line, the pager goes off so it’s back up to the 4th floor.

Two meds are administered each taking 30 minutes and the PICC dress is changed. The nurse is very nice and we review the side effects and what to do etc. I’ve had one of the meds before without any problems, the other is new to me.

All together I’m at PMH for about 2 1/2hrs. Same routine for Friday and Saturday so unless something exciting happens I’m not likey to post anything until next Tuesday, admission day.

I’m actually quite relaxed but the purpose of today’s testing is to stress my heart and take some pictures.

I’m at a new hospital today, Toronto Western, on the 5th floor in the east wing.

After the usual check-in it’s into a lovely hospital gown and off to the exam room. Blood pressure, temperature and some questions. Then I’m hooked up to an EKG with 13 leads, lots of sticky patches all over my chest. Then it’s an injection with some radioactive stuff and I wait for about 30 minutes while it circulates. The next step is about 20 minutes under the camera where they collect the images. This concludes the resting portion of the test.

After the imaging I’m free for about 90 minutes where I can have some lunch and drink something but still no coffee. ☕️

I’m called back in and the stress part starts. I’m reconnected to the EKG and a blood pressure cuff and it’s on to the treadmill.

The goal is to get my heart rate to 151bpm. Apparently, 124 is the minimum requirement but I’m going all the way! Things start up slowly for a couple of minutes and then the speed and incline increase. At the top rate it’s a very brisk walking pace. As I hit 151 a nurse appears and injects the 2nd dose of radioactive stuff while I’m still on the treadmill. In under 12 minutes it’s all done.

After a brief cool down I wait a few more minutes and then the second set of pictures are taken. They confirm the images are good and I’m free to go.

The next morning we hear about the results and I “passed” so I’m good to go for chemo and the CAR-T.

It’s the day to get the Peripherally Inserted Central Catheter, more commonly referred to as a PICC line.

Once again things are quite streamlined. I’m brought into the room with an OR like table with the above equipment at my head. I lay down and stick out my left arm. An ultrasound is used to visualize where the vein is and then the area is sterilized and draped.

A local anaesthetic of Lidocane is administered and the insertion procedure begins. The tubing is inserted in the brachial vein of the left arm via a #5 French catheter for a length of 48cm ending at the Cavoatrial junction. The double lumen line contains two separate openings through the same catheter so that two solutions or medications that are not compatible can be given simultaneously.

To finish off the lines are flushed with heparin, a dressing is applied and a Statlock securement device is applied. In the end it looks like this.

In under 30 minutes I’m free to go.

A new plan for Wednesday March 10th. I get to have a Myocardial Perfusion Scan.

I glossed over one of the things that happened right at the end of my last Friday’s meeting with the CAR-T coordinator. “You may have had a heart attack so we want to get a cardiology consult”. Whoa, news to me!

The MRI of my heart done back on February 1st apparently showed some “issues” and this is the first I’m hearing about it. Anyway, they have consulted with a cardiologist and they have requested yet another test, this Myocardial Perfusion Scan, more specifically a Exercise Sestamibi Test.

This test will take 4-5 hours and as a result of this new twist, chemotherapy has been pushed back one day so its now happening on Thursday, Friday and Saturday. So far, the admission (March 16th) and infusion (March 17th) dates are holding. The test is in another building in the UHN complex so I’ll get to explore the Toronto Western Hospital which is roughly in the same city block as the other hospitals I’ve been cruising through.

I’ve got to admit it’s getting harder to “go with the flow”, “roll with the punches” etc. So far, no details on the specific reasons driving the test, if the heart issue is serious or not, if it will affect the CAR-T process or not. It could be just a precaution, after all they have checked virtually every other part of my body. Hopefully, some better answers in the days ahead.

To top it all off I can’t have any coffee until the test is complete!

Today I’m back at Princess Margaret Hospital (PMH) for more testing and a meeting with the doctors and Andrew, our CAR-T therapy coordinator. It’s Day -12 as March 17th is the day I’ll be getting my CAR-T cells infused, which is referred to as “Day 0”.

First up is a PET scan that will be used as the base-line pre-treatment. It’s interesting to note the differences in the processes between HSC in Winnipeg and PMS in Toronto. The Toronto folks seem to be much faster and have seemingly streamlined the procedure while still doing the same job.

The check in process was about the same but the injection was quicker and they didn’t leave the IV in for the duration like they do in Winnipeg. Changing is into a pair of hospital pants only, in Winnipeg they are more into a full gown mode. In the PET scanner it seemed faster here which might be due to a newer machine. The one in Winnipeg is 10+ years old and just now being replaced with a new model. Winnipeg is typically 2 – 2 1/2 hours, here I’m done in under 1 1/2 hours.

Next up is some blood work and a return visit to the AWA (Ambulance Waiting Area). This is where they collect blood if you have a Port or PICC line. If you were just getting blood drawn the “normal” way via a jab to an arm vein they have a pretty high-tech operation with dozens of stations to get the job done. Back in the AWA it’s more like a backwater ghetto, a holding pen with an assortment of mismatched chairs scattered about and lots of people getting in line for the two techs who can do the job. Still, not bad, a 20 minute wait and the very efficient tech gets my 5 tubes of blood with blazing speed and I‘m free to go.

Now it’s about 10:15 am and my next appointment is 1:30 pm, so some time to kill. After a Tim’s coffee and muffin I’m out for a walk to explore some of downtown Toronto. Not too much is possible as Toronto is still on a full lockdown with “stay at home” orders. The only things open are some restaurants but I’d have to eat out on the street and while it’s sunny it’s fairly windy and a little on the cold side so that option is not too appealing.

The 1:30pm meeting is primarily about reviewing my status with the various nurses and doctors. Vitals and a mini-assessments with a nurse, a more detailed review with the resident, and a recap with the senior hematologist all covering pretty much the same ground.

After the doctors are done Andrew reviews the plan for the next week up to my admission and I’m given another bunch of prescriptions for various anti-nausea meds to deal with the upcoming chemo treatments. The prescriptions were a bit of a surprise and another reminder that the chemo might not be a “walk in the park” so it’s off the the hospital pharmacy to get them filled.

I thought this would be an easy day but, by the end I’m a little emotionally fried from the testing and talking about everything so much. I’m relieved to see Shirley & Leslie waiting in the car to take me home.