A busy hospital day today. First is a PET scan at Health Sciences Centre (HSC) immediately followed by an IVIG treatment at St. Boniface Hospital.
This is the new PET scanner in its new location at HSC . It’s 10+ years newer that the previous one and amongst other things is considerably faster in getting the images, 15 minutes vs. 45 minutes for the older unit. It’s still the only one in Manitoba, but I learned a second unit has been approved and will be installed later this year
The scan itself is uneventful and goes smoothly. The table moves very slowly and smoothly and after a few minutes of holding very still I’m just drifting off to sleep and it’s over. I’ve kept the port “gripper”, the needle that hooks up IVs via my port as they wil use it in the next procedure and it will avoid getting stabbed a second time. Off to the next appointment.
Yesterday was a low carb, no sugar day and fasting from 4am until the 10am scan so I grab a quick lunch on the drive over to St. Boniface Hospital.
This is IVIG #3 of a planned 6 so we’re getting it done once a month.
My gear for the IVIG treatment
The little bottle at the top right is the Immunoglobulin. There will be two 20g bottles administered over about 2 hours. They start the IV at quite a slow rate and ramp it up every 15 minutes. Lots of nurse action as they do vitals every 15 minutes too!
Tiny bubbles …
There are no bubbles in the bottle when they start but at the end it looks like this. Curious stuff.
Monday will be even bigger day as we get the results of the PET scan and find out how the CAR-T process went. Also, I get my 1st COVID shot and we’re planning our 1st summer trip to the lake!
As part of investigating my chest “pain/discomfort” I’m getting an MRI of my heart. I’m at the Andre Sakharov MRI Centre at St. Boniface Hospital. I’m pretty familiar with the process now as I’ve had a few of these recently. As they say this is not my first rodeo.
Andre Sakharov MRI Centre
The process is very efficient and quick. I change into the traditional hospital garb, get the IV for introducing the contrast material and only wait a couple of minutes before I’m getting into the MRI tube.
Once on the MRI bed I’m wired up with some chest leads for heart monitoring, ear plugs and a headset to block the noise of the MRI and to hear the breathing instructions from the operator. “Take a breath in, breath out, hold your breath…. breathe” about 25-35 times in a row. About 45 minutes later, we’re done.
A small twist in these COVID mask wearing days is you get a new mask, ones that don’t have any metal across the top. The strong magnetic fields in the MRI do some crazy things to metal.
I had the second IVIG treatment last Friday which was uneventful… always a good thing.
Blood work is now down to once a week and my Neutrophils are greater than 1 without being supported by Grastofil/filgrastim injections. This is good too because it means I can stop the injections and a couple of the medications, particularly the really expensive one!
My second pentamidine treatment is scheduled for May 31 at HSC.
A second MRI of my heart is scheduled for June 9th to be compared to the February 1, 2021 imaging in an effort to diagnose the chest pain.
June 18th will be a busy day with the PET scan followed by IVIG treatment #3.
June 21st we will meet with the oncologist for the results of the PET scan. A big day for sure.
Strange times when you’re busy, but not busy, can’t do stuff, don’t want to do stuff, make some plans only to have to change them and motivation is low. Sometimes the days seem endless for many reasons and sleep seems like a really good thing if you can get it. It’s been like that pretty much non-stop since we’ve returned from Toronto.
C&C, not the sailboat (I wish!) but Cancer and COVID and then throw in some other issues and you have the trifecta of a perfect storm. Such is life these days.
Anyway, here is the update. Back on May 1st I started to experience some chest pain. And by pain I mean a very mild ache. However, this is the same feeling that I had in December of 2019 which lead to the discovery of the recurrence of the cancer. Needless to say this was quite distressing. It was hard not to wonder if the CAR-T treatment wasn’t working, or if the tumours were getting bigger and causing problems. After several days wrestling with this I finally told Shirley and then the oncologist.
When you say “chest pain” to a doctor, they immediately go to “is it a cardiac event?” (aka a heart attack), This chest pain has none of the classic heart attack attributes but, doctors want to rule this out and rightfully so. I’m given two options, go to the ER or go to Urgent CancerCare at HSC. Back in December of 2019 for this same issue the ER visit was 5 hours of waiting and a 15 minute consult that says no cardiac event. So, I opted for Urgent CancerCare. I’d been there one time before on a different issue and received quick and excellent care.
Urgent CancerCare is a dedicated unit that sees only cancer patients. It’s like 2 bed ER and if something really bad is happening they punt you over to the main HSC. I arrive on a Thursday afternoon and I’m the only patient. I have a doctor, a nurse practitioner, and two other nurses all looking after me.
In short order there is a blood test primarily for cardiac enzymes (troponin T (TnT)) to indicate if there had been a recent cardiac event ,an EKG and a chest X-ray. Basically no cardiac event and no explanation for my chest “discomfort”. A CT scan is scheduled to investigate further. The CT happened on Wednesday May 12, 2021.
Today, we’ve had the call from the oncologist about yesterday’s CT scan. The tumours have decreased in size and at this point it’s being referred to as a “partial response” to the CAR-T therapy. Typically, they would not even investigate until 3 months (June 17th). The CT doesn’t indicate if the tumours are just leftover scar tissue from the treatments or active disease, only the PET scan will determine if anything is “active”. None of this explains my chest pain/ache. Just to be clear, I’m not suffering 😊, I rode my bike 57km this morning. The concern was that it feels just like Dec 2019, which lead to the discovery of the recurrence of the cancer. I have a referral to a cardiologist and likely another MRI of the heart. This will be to further investigate if there are any heart-related concerns.
A PET scan has been requested and is likely in early to mid June. The PET scan is the definitive test to determine if there is active cancer present. Basically, you don’t want to light up like a Christmas tree on the images. 😉
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.
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.
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.
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.
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 TrailMore creekSwans on the Lake
The CreekLake Ontario
So, after the blood work results are back they have decided that I need an injection of Grastofil.
From drugs.com 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.
