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One Year Anniversary

Today, March 17th is the one year anniversary of my CAR-T infusion treatment for Lymphoma cancer.

Certainly a landmark event in our lives, you might say “life changing” and you’d be correct. So much has happened in the last year. First off, I’m in full remission and feeling very well. The last two PET scans were good and no further treatment has been required since the CAR-T.

Looking back, it seems like a long time ago, and like yesterday all at the same time. The 75 days we spent in Toronto to get this life saving procedure were challenging for sure but I think my side effects from the treatment were quite mild and minimal compared to what I’ve read and what we were told about all the things that “might” happen.

Of course, as all cancer patients know, it changes you mentally, physically and spiritually. I don’t think anyone gets off scot-free. A year later I still think about the cancer daily, but not as often or as intensely. Physically, the time in the hospital, the chemotherapy, and the CAR-T itself do a bit of a number on your body, both good things and some not so good things. At this point my strength and stamina are approaching my 2018 pre-cancer levels. Treatments whack your blood chemistry quite severely and while it’s taken a year, my blood work numbers are starting to climb closer to the lower end of normal.

Spiritually, both Shirley and I have deepened our faith through this time. We experienced God’s favour, mercy, and grace and know without doubt that He is faithful and trustworthy.

The anchor holds in spite of the storm.

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Update and Looking Back

Today was a follow-up phone visit with the folks at CancerCare to get an update on how I’m doing and to review the latest blood work.

And the number are in and they are good! Up in all critical areas, except for those stubborn platelets. A picture, or perhaps a graph or two, is worth a thousand words.

WBC – White Blood Cell Count
Hemoglobin (HgB) and Platlets(PLT)
Neutrophils

I’m doing really well. I feel great and my strength and stamina has improved measurably over the last 4-6 weeks. As is typical for me, I measure things by how well I’m riding the bike. On the bike I’m able to do self-testing to determine a thing called FTP, functional threshold power. On the last two tests my FTP has increased substantially and is now almost at my 2018 pre-cancer levels. I’m looking forward to a good outdoor road riding season this spring, summer and fall both around Winnipeg with FROG (Fast Retired Old Guys) & FOG (Fast Old Guys) groups and out at the lake with the Kenora RPCC (Rat Portage Cycling Club) crew.

Well, looking back it is this time one year ago that our Toronto CAR-T journey began. First starting with the assessment and T-cell collection trip and then the subsequent CAR-T treatment and recovery trip. In some ways, it seems like yesterday, and in others a distant memory. We’re forever grateful to our Toronto family for the loving support we received, to the great medical team at Princess Margaret Hospital and the supporting University Hospital Network and to all our family and friends who supported us on the journey.

Princess Margaret Cancer Centre – Toronto, Ontario

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PET Scan #9 Results – Official

I’ve gotten a little behind in posting and while I’m writing this on January 16th, I’m backdating the post to January 10th when we actually received the full results of PET scan #9.

As I’d mentioned on the January 5th “Into the Tube” post we had a heads up over the phone that the news was going to be good, and it was! The summary is that there was nothing new found and the “previous areas of concern” … “appears stable” and in fact a bit better than the previous scan.

In addition to this good news there was also good news on the blood work front as well! Several of the key indicators are improving. White Blood cell Count, Red Blood cell Count, Hemoglobin, and platelets are all up.

Hemoglobin and Platelets – Trending up
WBC – White Blood cell Count
Neutrophils

LDH (Lactate Dehydrogenase) is lower, which is a good thing.

LDH – In between the green lines is good.

All in all, an excellent report, for which we are both very grateful for. Monitoring eases up a bit over the next while with a follow up oncologist visit on March 7th, 2022.

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Into the Tube

Yesterday, Wednesday January 5, 2022 I had PET scan #9.

The PET scanner a HSC

The now familiar process went smoothly with the standard interview, IV fluids and the “sugar” injection, aka radioactive glucose! When the nurse does this she is gowned, masked, gloved and behind a shield. They did all of this before COVID, now it’s almost “normal” for most procedures.

After 1 hour of letting that stuff circulate, it’s into the tube for a 20 minute snooze as the machine scans my body.

After Shirley called yesterday and asked if there was any way of getting the results sooner than our appointment next Monday, I received a reassuring call this afternoon from Kelly our oncology nurse with an update on the PET scan results. “Nothing to worry about”.

We will still meet with the oncologist on Jan 10th for a full review of the PET scan and bloodwork results.

This process certainly has been a test of my faith. I believe I’m healed. I look at my tattoo and it reminds me that “the anchor holds” in the storm.

I can certainly relate to Mark 9:24 and the need to take every thought captive and win the war in my mind. Thank you Jesus.

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Ketchup

Or catch up, a post to catch up on some events over the past little while.

So, a while back, somewhere around mid November 2021 I started to notice that I was getting much more tired than usual when riding the bike on the trainer. In fact, on one ride I had to stop 4 times to catch my breath and wait until my heart rate dropped in order to finish the ride. Not normal.

Then on Wednesday November 24th I was out on my regular outdoor FROG (fast old retired guys) bike ride with a friend. It was cold at -13ºC with a wicked north wind that made it feel more like -20ºC. I’ve ridden in these conditions before without any problem and I was dressed warmly for this kind of ride. About 15km into the ride I’m feeling unusually tired and cold. A little further along and I say to my friend that we need to take the shortest route home ASAP. I’m getting more and more exhausted, and more and more cold and I’m starting to shiver. I thought briefly about laying down in an open field to rest, but we push on. Now I’m shivering uncontrollably and we make it to the YMCA on Fermor and stop to warm up. I call Shirley to get picked up. Calling for a ride for only the third time ever. Not normal.

I call CancerCare about a previously scheduled appointment and end up telling them about my symptoms, of which there are now a significant number of concerning symptoms. They send me for some blood work and schedule a visit with the doctor on November 29th.

On the 29th, after recounting my situation, it’s decided some additional testing is warranted so there is more blood work and a CT scan on December 17th with the results on the 20th. The CT results are basically good and there is no evidence of any tumour growth or any new tumours. The cell counts and hemoglobin continue to be low which is frustrating, however, by this time I’m feeling much better. Most of the symptoms have resolved, I’m feeling stronger exercising on the bike and my energy has returned. All in all 10-12 days of feeling pretty rough with symptoms that in the past have not been good. The oncologist is not sure what the issue was but the symptoms did not indicate the need to test for CoVid in case you were wondering.

There will be a PET scan on January 5, 2022 to follow-up. This was planned but moved up as a result of my symptoms and to confirm the CT scan results. Never a dull moment. Thankful for the recovery and that it’s in the past.

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Under the Knife

Today’s adventure is having the port removed.

The Knife

Once again it’s not my first rodeo, this is removal #2 so there shouldn’t be any surprises. I arrive at HSC CancerCare and check-in for my 10:45am appointment. After a few minutes I’m called in and it’s shirt off, gown on and up on the table after signing some stuff I really didn’t read. 🙂

The doctor explains the procedure which is basically, local anaesthetic, cut it out, stitch it up, bandage on and your good to go. It’s a 10 minute process that goes as planned without incident. The anaesthetic is the most interesting part. It’s done quickly but seems long all at the same time. The bulk of it is not too painful but there were a few seconds where it was a little intense. This stuff is always amazing. In about 60 seconds he’s cutting it out and I feel nothing.

The Port

Here is what the port looks like. I was shown mine after extraction and it was a little bloodier that this pristine example. For some reason, I didn’t take a photo. The anaesthetic has worn off after a couple of hours and it’s a little sore but nothing serious. In two days I can remove the bandage and see how it looks.

Numbers

For those following the numbers, things are looking up in this area as well.

Hemoglobin and Platlets are creeping up
White Blood Cell Count is on the way back to normal.
Neutrophils are back in the normal range without being coaxed with Grastofil !

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Good News

The results today from the October 26th PET scan are good!

The current scanner at HSC

In fact the results of this latest PET scan are better that the one 3 months ago. While there is still a small area of “activity” it is “less intense” and is “still favoured to be due to inflammatory change”. Which basically means they think the body is just doing normal stuff and that it’s not cancer.

Going forward there will still be active follow up in the form of monthly blood tests and PET scans every 3 months for the next year to year and a half.

We’re feeling very relieved, happy, excited, thankful and more about my ever improving health status.

Thanks to all for your prayers and support. ❤️

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#7

PET scan #7 was today and while the process was pretty routine for me now, there was a little wrinkle. 🙂

As an aside, who remembers The Prisoner (1967/68) with Patrick McGoohan? “I am not a number… I am a free man“. He was #6 and every time I use the “#” I remember that great show.

Warning!

Just a warning, if you’re not a fan of vaccinations, you should probably just move along and know that the PET scan was completed without incident.

Prior to getting shoved into the tube for the scan there is a bit of paperwork and a blood glucose check to ensure that it’s not too high, which would mess up the scan. I’m told mine is fine at 4.9

Then there is the standard review of quite a few questions that I’d heard before and/or answered in writing on the intake form and then there is this exchange between myself and the tech. I’ll call her “The Tech” as she is running the show from intake, to starting the IV, to injecting the radioactive stuff, to running the scanner. I’m guessing she is a fully qualified RN but not sure. For this, “The Tech”.

Tech: Have you has your COVID shot?
Me: Yes, #3 on October 8th
Tech: Which arm?
Me: Left
Tech: Flu shot?
Me: Yes
Tech: Which arm?
Me: I’m not sure, I had four vaccinations that day.
Tech: (pause) OK, what other vaccinations?
Me: Hepatitis B, Influenza, Pneumococcal conjugate, Herpes Zoster (Shingrex)
Tech: OK, let me check with the doctor
(big pause)
Tech: We’re OK and good to go. It’s likely that the vaccinations will cause the scan to “light up” in the area of the lymph nodes near the injection site and that’s a normal and expected reaction to vaccinations as the body does its job building up your immunity. Since those areas are not where we’re tracking the cancer, it shouldn’t be a problem.

Generally, “lighting up” is bad when they are checking you for cancer. This whole concern about vaccinations was quite unexpected but it appears they allow for that so the PET scan continued as planned.

Results with the oncologist on November 1, 2021

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Triple Header

Today is a three event special, blood work, an IVIG treatment and a visit with the doctor.

Also, a quick update on my Ride To Conquer Cancer bike ride. Thanks to many generous donors my ride raised $2,696.10 which qualified me for this sharp “Ambassador” jersey.

Ready to start the ride.

The overall ride raised $9.9 million for cancer research! I ended up riding 125km in the Kenora area on a Sunday afternoon. My ride took me from the Storm Bay road down to Sioux Narrows and back. I wrote about the ride details over here.

The blood work results were a surprise and a disappointment. At six months post treatment the various blood components are supposed to be recovering and things like white blood cells, hemoglobin and neutrophils should be returning to normal ranges. I was expecting a good improvement with the latest testing but it was not the case. Numbers actually decreased or held steady at a below normal level.

Hemoglobin (HgB) and Platelets (PLTs)
White Blood cell Count (WBC)
Neutrophils (Things that fight infections, kind of important these days. Also, the temporary spikes into the “good” zone were induced by Grastofil injections)

I know it’s just one data point and these things can go up & down but, still a big disappointment that needed a little processing, so I went for a bike ride. While I was out riding a song came to me and I sang it as best I could. Helped a lot.

“Your promises still stand
Great is Your faithfulness”

Do It Again – Elevation Worship

The IVIG treatment, which should be the last, proceeded without any incident and took the usual two hours as they ramp up the infusion rate in stages, which kind of drags out the process.

The doctor visit is basically a check in to see how I’m feeling, if I have any questions etc. I?m feeling fine with good energy, appetite and sleeping well. Six months post CAR-T is fast approaching and they will schedule a PET scan to check on what’s happening.

With the cancer, it’s been pretty much top of mind for the last three years. I doubt if there has been a day where I have not thought about it. The only variable is how much I think about it. You try to blank it out, let it go, think on what is lovely and pure (Phil 4:8) etc. but it manages to creep in anyway. What helps is the amount of time between hospital visits. As the space between visits increased its easier to “forget” about what has happened, what is going on now, or what might be happening in the future. And then there are the big checkpoints like the PET scan which will confirm that I’m still in remission. Hard to believe it’s been six months. So much has happened in my and Shirley’s lives.

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Still Here

Still here at the hospital from time to time to do some preventative/recovery treatments and blood work monitoring.

Today it’s IVIG treatment #4, just two more to go if the schedule holds. Blood work has something a little extra today, 3 tubes instead of the typical 1.

For sure one of the tests is the CBC (Complete Blood Count) of which my neutrophil count is important to determine if I need Grastofil to help things along or if I’m doing “OK” on my own. I’ll know later this morning.

Some of the other testing may determine if I need to continue with the IVIG or my system has recovered enough that it can be stopped. This would be nice to stop as it takes approximately two hours to complete.

I’m feeling well and more normal now that I’m just over 4 months post-CAR-T. Looking forward to less trips to the hospital, more trips to the lake and resuming a more normal life from a health perspective.

The new adventure/workout gear, an Oarboard!

http://www.oarboard.ca/ambassador-garry-stewart/