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New Direction

Today’s update from the oncologist is pointing in a new direction. Instead of going south to the Mayo Clinic it’s more likely that we will be going east and staying in Canada!

The Lymphoma team met this morning and reviewed my case and of the three options they feel that the CAR-T therapy has the best possibility of a cure / long term remission.

More chemotherapy was not viewed as a good option due to my previous exposure to high dose chemo during the stem cell transplant process. Immune therapy is still an option but is used is to control the lymphoma and is not a cure / long-term remission. Plus it is a treatment needed for the rest of your life.

CAR-T has been available in Ontario for a little while now, but just recently, as in the last few days, has become the choice for Canadian patients. Locations are Toronto (Princess Margaret) , Hamilton and Ottawa with Toronto seeming the most likely. The Mayo Clinic is still an option but only if Canadian capacity is not available.

However, there are still several approvals and likely a ton of paperwork (not me 🙂 ). The meeting of the Lymphoma Team this morning was the first hurdle. Next is approval by the Provincial CancerCare Committee followed by approval from the Provincial Government for the funding. After that it’s applying to Ontario for approval and finding a site with capacity for the therapy.

The timeframe is still up in the air with so many entities involved, but apparently things can move “fairly quickly” in the experience of my oncologist. She said they would follow-up in one week to let us know the status.

In prep for all this to happen there will be YAT (yet another test), this time an MRI of my heart and chest. This is part of the information required by the CAR-T programs so we’re proceeding with getting this done in the expectation of moving ahead.

While the Mayo Clinic would have been good, we’re quite relieved to likely be staying in Canada and with many relatives in the Toronto area that would help a lot.

An encouraging link: New program brings life-saving treatment to cancer patients

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I Believe

In the ’90s I listened to and most likely sang this song in church from Ron Kenoly’s 1992 album, Lift Him Up, “Whose Report Shall You Believe?”. Just prior to today’s meeting with the oncologist I was thinking about this song. Part of the lyrics are:

His report says
I am healed
His report says
I am filled
His report says
I am free
His report says victory

Whose report will I believe? I will believe the report of the Lord!

Today’s report from the oncologist on the PET scan results was not positive. There is increased activity in the tumour area and a spread from the left to the right side of the chest since the PET scan on October 25, 2020.

On a positive note there are several treatment options available at this point. Next Monday, January 18th, in the morning there are grand rounds for Lymphoma where all the top specialists will meet and review my entire case to determine the best treatment plan going forward. We will know more by the end of day Monday. At a high level, here are the options that we briefly discussed today.

  1. More chemotherapy, some different drugs that I have not experienced yet.
  2. CAR-T Cell Therapy at the Mayo Clinic in Rochester, Minnesota
  3. Immunotherapy where specialized drugs activate your immune system to kill cancer cells.

In today’s discussions they seemed to be leaning towards the Mayo Clinic option. There are several steps to make this one happen. First, the group meeting on Monday needs to agree and recommend that this is the best option. Next, would be to secure Manitoba government funding approval to get the costs covered. Preliminary estimate was a one week trip for the initial work and about a one month stay to finish the therapy. In addition, the Mayo Clinic has to review my case and accept me for treatment. My oncologist was fairly positive about this part due to my otherwise good health.

We thought the journey would end today but there is still some more to do. Thanks for hanging in there with us. We so appreciate your care, concern and prayers.

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Chest Follow-up and PET Scan

I followed up with my doctor regarding my chest “ache” and updated him on my current symptoms. His opinion at the time was that it could be a neuritis issue, aka nerve damage. The source of the nerve damage could be many but his best diagnosis is that nerves in the spine at the T5/T6 level are being impinged upon by something, like a herniated disk. An Xray would be able to determine if a disc is compressed, a CT scan would be required for a more detailed analysis to determine if there is spinal nerve damage. At this point ( Jan 4th) my doctor doesn’t have access to the Dec. 24th CT report.

PET Scanner at HSC

The PET scan today proceeded quite normally with no issues. The PET scan equipment is over 10 years old and has exceeded it’s life expectancy and is being replaced. The new unit is supposed to be up and running in the next 1-2 weeks. I hope I never see it. On the way out I snapped a photo of the unit I’ve been in a few times.

Later in the day I get a call back from my doctor. He has now reviewed the CT scan report and noted that they detected some damage “within the medial aspect of the right upper lobe”, aka a part of my lung and to a lesser extent similar damage to the left lobe that has been caused by the radiation treatments. This would seem to explain the chest “ache” on the right and left side. There is a possibility that it will heal further, which it will. I’m surprised that this issue has surfaced 90 days post-radiation but I’m told it can happen that way.

The CT report also indicated that the tumour as shrunk by approximately 50% from the May 6, 2020 CT scan, a very good thing.

Next stop is January 11th for the results of the PET scan.

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Never a dull moment

Spoiler Alert: I’m fine and all test results are good.

So, back on December 12th I started to feel an ache in my chest. Nothing significant but it felt very similar to the feeling that sent me to the ER back in March which led to the revelation of the lymphoma recurrence.

Well, I’m back in the ER. ☹️ Triage was fast but there is a 5.5hr wait, treating 50 and 23 waiting.

Backing up a bit, I kind of ignored the symptoms for a while and then when Shirley found out, she called our oncology nurse for advice. As a result they scheduled a CT scan for Dec. 24th. Symptoms continued off and on as we waited for the results which we got on the 29th.

The good news is that the CT result is very positive. The tumor is smaller, there is no spread, no damage from the radiation and everything from neck to abdomen seems OK. However, my on vacation oncologist wants me to be seen by a DR. for assessment. The suggestion is to call Urgentcare CancerCare which is sort of like an ER for cancer patients. I’ve been there once and received quick and excellent care.

A call to them results in an opinion that it’s nothing to do with the lymphoma and not a cancer issue. Initially they say I should see a cardiologist but later after a nurse/doctor consult they call back and say I should see someone now, as is go to the ER. I call my GP and he agrees.

Now I’m waiting. It’s literally standing room only in the waiting room and it takes about 45 minutes before I get a chair. There have been several ambulances and I overhear that the hospital is “full” due to a combination of COVID and post-holiday issues.

So after a 4 3/4 hr wait I’m in a bed hooked up to the monitors. A few minutes later I see the attending and we review my symptoms. My EKG is fine and so is the blood work ( aka – I didn’t have a heart attack). He doesn’t feel that my sympyoms are cardiac related. I mention that I rode the trainer for 2 hrs yesterday without any issues and his response was “That’s a pretty good stress test”. He was quite nice, wished me a good evening and I’m discharged. All is good.

Crash Card

Also good news, they didn’t need to use this piece of equipment. I’m not sure if it’s just how busy the ER is or the symptoms I presented with but I’m in the Resuscitation Room! I think they are ready for anything here. 🙂

The chest ache? Still a mystery but doesn’t appear to be anything serious.

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I will be with you

I’m not sure how to explain the experience or feeling I had this morning when this verse came up as the verse of the day on the Youversion app. It was pretty special. It was familiar. It was comforting. It was reassuring and much more.

It’s an old friend. It’s on my verse list. It’s one I’ve prayed out loud over myself on the journey many times.

I’m a big fan of the Youversion app and it’s what keeps my daily reading of God’s Word on track with lots of powerful and encouraging devotions for all aspects of life. Highly recommended.

So I don’t normally blog about this kind of stuff, I save it for my personal journal. But today, it really spoke to me, especially in light of my Journey. Perhaps it will speak to you?

Anyway, this verse was part of today’s Youversion “Story“, which was prefaced by this:

Think of a difficult situation you recently faced. Today, let’s reflect on God’s promises for our hard seasons. Before beginning, take a deep breath.

Yeah, take a deep breath. Given everything that’s going on in the world these days I think that’s a great idea. Catch your breath, relax a little bit, let the tension go.

I think everyone has or will experience a “hard season”, the question is how will you handle it? Alone? (Generally not so good) With the help of friends and family? (better for sure!) With God? (the best IMHO).

For me personally there were two big takeaways.

The first is that “I (God) will be with you”. What an awesome promise that the God of the universe is with me when I’m going through difficult situations, and good situations too!

The other is the word “through”. I’m going “through” any and all hard seasons. Not stopping here but coming out the other side. It may be long. It may have many ups and downs but I’m going through and there is an end and the ending is good.

Thanks for reading.

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Checkup, Charts & Numbers

Today, we had a phone consult with the oncology nurse. The main purpose was to check in and for us to get the results of last weeks blood work.

My input to the checkup is that I’m feeling fine and still riding the bike regularly. I also reported on my weight (classified) and temperature – normal at 36.2 so no fevers etc.

Shirley was on the call to so the two ladies quickly move on to talking about cooking, Christmas, COVID and other non-me related stuff. I almost dropped off the call.

I did get a couple of questions in:

  1. What are you thoughts on me getting the upcoming COVID vaccine?

    CancerCare currently has no guidance on this but is likely to have some information by the time I’m likely to get a shot at “the shot”, which in my best guess will be late in 2021.
  2. When will my immune system be considered “back to normal?

    Sadly, 1+ years post stem cell transplant which would put it out to July 2021 at the earliest.

Blood testing results continue to be sort of holding steady, dropping a bit or small slow improvements. Still waiting patiently (sort of) for the big breakthrough improvement. I’ve updated the charts with what the “normal” targets are for your viewing pleasure.

The LDH numbers are good as higher numbers indicate inflammation in the body, aka “something is going wrong”.

Speaking of numbers, the journey has been a lot longer that I’d ever imagined. How long you ask? Well, here are the “highlights”.

DayEvent
0Initial Detection – 2018/05/10
8Biopsy
35First meeting with the Oncologist
41Chemotherapy starts
57Port installed
165Chemotherapy ends
175PET scan post chemotherapy
179Cancer Free
223Port removed
663In the ER – X-Rays, CT scan – re-occurance – 2020-03-03
669Oncologist meeting – Round 2
680Port Insertion (again)
690Chemotherapy starts (outpatient at St. Boniface Hospital
697Bone Marrow Transplant / Stem Cell Transplant Consult phone call
761PICC line installed & HSC Admission
762Seven consecutive days of chemotherapy start
769Bone Marrow Transplant / Stem Cell Transplant – 2020/06/07
782HSC discharge
838PET Scan
845PET Scan results – not good
875Radiation Starts (Daily for 5 days except weekend)
881Radiation Ends
971Final PET Scan 2021/01/05

I guess I have too much time on my hands thanks to COVID.

Looking back it seems both long and short all at the same time. Time really does fly, Tempus Fugit. I’ve learned a lot along the way. The value of friends and family. The trust, hope and confidence in the Word of God. My secure salvation in Jesus Christ, His amazing grace and faithful promises. He was always with me in what has happened and will always with me in whatever might come.

Be safe, be well, be blessed.

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Good hair day?

Now that I’ve been bald twice, it has changed my relationship with my hair.

Getting older is so much fun! At one time I was a little concerned about thinning hair and a receding hair line. Now, I’m just thankful to have some.

After getting over the initial shock of being bald the first time, it wasn’t all that bad and certainly low maintenance.

The one thing that people generally focus on with hair loss due to chemotherapy is the hair on your head. However, it’s more that that, it’s hair everywhere! Now some of that has some surprising benefits. For example, I didn’t need to shave for months. Other hair loss on my body is a little more shall we say “weird”, and we’ll leave it at that.

For those of you who have not seen me for a while, which is most of you thanks to Covid, my hair is returning. And like the first time it’s a little different than normal. It’s a little on the curly side.

After a haircut or two the curly hair will revert to my previously straight hair. In the meantime I’m getting called some interesting names like “lambykins”.

I’m feeling well and there won’t be any scans or testing until January 2021 so posts may be sporadic and eclectic for a while. In the mean time …

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Checkup

Yesterday was one of those kind of mystery checkups with the oncologist. A nurse, a resident and a doctor ask you how you’re feeling. I’m feeling fine but I’d really like some concrete evidence that the cancer is gone. They can’t tell you that, at least not yet.

Basically I’m in a holding pattern until 3 months post-radiation when they will do another PET scan, some time in January 2021. I’m told that any testing sooner than this may produce incorrect results due to the residual effects of the radiation, so it’s waiting time.

Now I’m fully believing that I’m healed but who wouldn’t like a little measurable confirmation, after all that’s what testing is all about.

With the checkup comes a blood test which is slowly showing improvements. Last month there was a big dip in the white blood cell count. The doctor wasn’t worried, but I didn’t like it .

OK, here comes the technical part. The normal WBC number is 4.5-11. Good news this month is that it’s coming back up!

White Blood Cell Count

Other key indicators in the blood testing are holding steady or dipping a bit.

Normal HgB is 140-180 and normal Platelets are 140-440, so still a ways to go. I’d like to see some steady improvement which will come. I guess I’m just a little impatient. 🙂

LDH is supposed to be in the 120-230 range so things are looking good here.

My oncologist says “You’re doing really well”. She said that most of her patients that have had this type of cancer and gone through the treatments I have are not feeling as well as I am and are not out riding a bike or exercising the way I am at this point in their recovery. This is very encouraging. I told her that my goal is to recover all my fitness to my pre-cancer state and more. Seems like a reasonable goal to me. Ps 103:1-5

As I write this it’s snowing outside but it wasn’t that long ago we were enjoying the fall colours at the lake. A few photos for your enjoyment as we head into snow season.

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Radiation +8 and Resting

Fall Sunrise at the cottage

Here I am, eight days after the last radiation treatment and generally feeling pretty good. Some side-effect symptoms have shown up but are quite manageable. The 1st was a couple of days ago when I noticed some discomfort while swallowing. Then yesterday it was joined with some feelings of heartburn/acid reflux from time to time. Additionally, there is an occasional sensation of “something going on” in my upper chest area. All of these things are apparently “normal” and will resolve over time. My energy is still pretty good and I’m riding the bike fairly regularly and started up my indoor training plan for both biking and weight lifting. OK, so weight lifting has just had one day so far, but hoping to keep it up. 🙂

When you have a cancer diagnosis, you tend to spend a fair amount of time thinking about it, at least I do. Not fearful, but it’s always rattling around in my brain, sometimes it’s pretty front and center and other times it’s just a deep background awareness, but generally lurking somewhere.

You get the diagnosis or doctor’s report and you think about that. You wait to meet with the oncologist, and you think about that. You hear about the treatment plan, and you think about that. You wait for treatment to start, and you think about that. You’re in treatment, and you think about that. But then treatment is over. There is a pause. There is nothing pending, nothing pressing and it’s easier not to think about “it” for a while. This is where I am now. There are some oncologist meetings coming up and a likely PET scan in mid-December, but there is a lull, a time where it’s easier to not let “it” occupy so much of my thoughts and emotional energy, a resting. Resting feels good. Time for some normal life, well as normal as it can be with that “other thing” going on.

Fall Colours off the deck on a calm Saturday afternoon on the Thanksgiving weekend
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Radiation Treatment – 5/5

And we’re done! Yahoo!

I’m feeling quite good with no side effects at this time. In fact, I celebrated with a 76km bike ride with my Wednesday cycling group after my treatment.

FROG is what we’ve named our group, Fast Retired Old Guys. I’m the youngster and the other two guys are 71 & 75!

To be fair the doctors and staff said that side effects could show up and “may increase to a maximum within 7-10 days following completion of treatment”. I’m telling them to not bother showing up at all 🙂

On another related topic I’ve received some additional blood work results. We were surprised in the decrease in WBC (not good, 4.7 – 11 is the normal range for the white cell count) but, in consultation with the oncologist they are “not worried” and results “can fluctuate”. I’m all for steady positive progress, but this is what it is.

At least these guys are holding steady or going in the right direction.

I probably won’t post much on the blog for a couple of weeks until after a follow-up visit (date TBD) with one of the oncologists. Thanks for reading and Happy Thanksgiving. We certainly have much to be thankful for!