Category: Health

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Angel and Miracles

It been a busy few days starting with Shirley meeting an angel, and then a couple of days of miraculous answers to prayer! Pretty exciting eh?

The Angel


We are still in awe of the goodness and faithfulness of God to send our very own angel to encourage Shirley on Monday morning. She was struggling with seeing me in overwhelming and seemingly never ending pain. To have Kylee reassure us that God hears us, that He sees us, that He is with us, and that He is our Healer was such an encouragement to both of us. She specifically prayed for hope and strength for Shirley and healing for me.

This was not some coincidence, as some might think, but was our loving, Heavenly Father reassuring us that we can lean on and depend on Him.

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My GI Guy

We had a phone consultation with Dr. Seth Shaffer, the Crohn”s GI specialist this past Friday.

The phone call lasted about 45 minutes and started with me giving a detailed history from my perspective of everything that has lead up to this point. He indicated that he’s had several discussions with Dr Hyun the Colo-rectal surgeon and has reviewed all the scans and biopsy results.

After all the review,, he is still not sure why this is happening or exactly what “it” is. The consensus is that it is Crohn’s, mainly because perianal abscesses and fistulas are associated with Crohn’s but it’s unusual to not to have bowel issues as well. Apparently only 5% of people have Crohn’s without any bowel issues.

Again, all the biopsies are reviewed and don’t show cancer, a good thing, just “non-specific inflammation”

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Radiation Process Begins

May 8th I had the CT Simulation, the 1st step in the process.

A few minutes in here to get lined up.

At HSC CancerCare in the lower level radiation department I’m in the “tube” for about 5-10 minutes as they position me, scan and apply two “tattoos”.

CT Simulation

Before treatment begins, your care team will plan your radiation. This is done using a CT simulation machine. The CT simulation will produce a scan for your team to plan the angles and shapes of the radiation beams for treatment. These plans are designed by medical dosimetrists, who carefully plan and calculate the proper radiation dose for each treatment.

The “tattoos” allow the radiation techs to consistently align my body precisely each day across the planned 20 day treatment.

Radiation treatments start May 25th.

PITA Update: While there have been some small improvements post-surgery, the pain situation unfortunately, remains pretty much the same. Tapering down the pain medications is unlikely until the underlying issue is addressed and that treatment reduces the need for pain medications..

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It’s been a busy week

To say that it’s been an eventful couple of weeks would be an understatement. From dark and stormy days that never seemed to end, to a much brighter day.

Storm Clouds Gathering
Storm Clouds Gathering by Lynn M Reid is licensed under CC-BY-SA 2.0

The Journey blog needed a few posts prior to today but I just was not up to it. So, Shirley has kept some folks up to date via email so there will be some overlap on the content but it will be a bit more from my viewpoint.

The PITA Issue

With the perianal abscesses and fistulas, now referred to collectively as PITA, there has been increasing pain over several months which have forced me to take ever increasing amounts of Hydromorphone to get any sort of relief. I was watching the clock to see when I could take my next dose, and life revolved around pain management. On April 18th, in conjunction with my GP, I added some long acting Hydromorphone to the mix twice a day. This was still supplemented with fast acting Hydromorphone 3-4 times a day to cope with pain flair ups. On the 20th the 2x daily amount was increased and again on the 25th when we had a crisis meeting with the colorectal surgeon.

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Things are happening

Since the last post there has been a fair bit of activity on both the cancer and PITA front.

Shortly after our appointment with the oncologist we received an appointment for a CT scan on May 4th with a follow up oncology appointment to review the findings on May 8th. At this appointment we should know if radiation is a viable treatment.

Today, April 25, 2023, we had an appointment with our Colo-rectal surgeon to discuss my current symptoms, pain management and the status of the gastroenterologist (GI) consult.

After discussing the symptoms along with another physical examination his comment was that it’s no worse, but is also not improving. His recommendation at this point is to perform an outpatient surgery to help drain one of the abscesses/fistula by placing a seton. While he’s there a scope examination and further biopsies will be performed. This procedure will take place next Tuesday May 2, 2023 at 7:45 a.m.

For pain management there has been an increased dosage in long acting Hydromorphone, some fast acting Hydromorphone for breakthrough pain management and some serious antibiotics.

For the GI consultation my case will be reviewed on May 18, 2023 during GI grand rounds where the IBD Gastroenterologist Dr. Seth Schaffer, will present my case to all the other GI specialists to get the best thinking on my situation. Dr. Schaffer will call me within the week following to discuss the next steps. These steps are likely to include a capsule endoscopy and if biologics are indicated and which one(s) would be best to treat my situation.

Unfortunately, the PITA + Lymphoma = complications. Biologics to treat the PITA are known to aggravate lymphoma. 😕 Treating the lymphoma with chemo also causes problems with PITA treatments. Things are getting complicated.

One of the better treatment paths is to get the approval for radiation of the lymphoma, for it to work and then treat the PITA with biologics and have them work as well. 🙏

It’s all more than a little overwhelming but we have a big God who is with us at all times and in all things. Plus we have a wonderful support system of family near and far, our Oasis church family with special Life Group friends, and our special friends Chris and Elaine that we’ve done a lot of life with, over 40+ years.

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PITA

No, not the the bread. This is my acronym for something else entirely.

In my last post I indicated that there was another part of my journey that is fast becoming interrelated with the original intent of the blog which was to journal my journey through the lymphoma cancer diagnosis. So, I’ve decided to expand the purpose of the blog to incorporate this rather dedicated and sensitive issue (on several levels) into the blog. Going forward I may use my acronym, PITA, (Pain In The A**) to encompass the perianal abscesses, fistulas and anything else related to this issue. It sounds a lot less clinical.

There may be some back dated blog posts as the PITA issue started in the summer/fall of 2022 and I’ll need to use my memory and whatever I wrote in my paper journal to re-create the timeline. Feel free to ignore. 😊

In summary, the blog has taken on an expanded vision to included other, mainly medical, components of my journey through life.

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The Journey Continues

Today, we reviewed the PET scan results from April 6th with our oncologist , and the results were not what we were hoping for.

They have detected that “intense activity is present in a relatively small lymph node at the apex of the left axilla adjacent to the clavicle”. In layman’s terms there is activity in my left arm pit. They suspect that “activity” is a recurrence of lymphoma. A biopsy would confirm if it’s lymphoma or something else but it’s too small to perform a biopsy.

The current plan is to perform a CT scan of this area to get an exact size and location and to treat it with radiation. One possible complication is that if the area to be radiated overlaps with the October 2020 chest radiation treatments they may not be able to do it because the tissue can only handle so much radiation. Plan B is chemotherapy.

A bit of good news from the PET scan is there is just this one spot that is related to the cancer and the scan did not show any spread in my chest etc.

While this blog started out as “My Journey through a lymphoma diagnosis” there has been another heath issue over the last nine months that has become intertwined with my overall medical journey.

It’s an issue that is in a very personal and intimate location of my body and up until now I’ve hesitated to put it on the blog but I think that will change. There was another area in my body that “lit up” on the scan. I was expecting this as the PET scan can detect inflammation and I have a fair bit of that going on.

Back in August 2022 I was diagnosed with perianal abscess(es) and fistulas. Since that date there have been many examinations by several specialists, several CT and MRI scans, three surgeries and two emergency ER admissions and several biopsies. To date all the testing says it’s not cancer. However, there is no diagnosis or treatment at this point, just a lot of pain which unfortunately is not well controlled.

The current status of this issue is that we’re waiting for a consult with an Inflammatory Bowel Disease (IBD) gastroenterologist and a referral to the Pain Clinic. I suspect there will be more testing and hopefully a diagnosis and treatment.

Since this has been going on for a while I may go back and retroactively blog about this part of the journey. This may or may not have been a good idea but I’ve given it a name, PITA . Pain In The A**

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Update and News

A small update on me and some exciting news about cancer treatments in Winnipeg.

I’m doing fine from a lymphoma cancer perspective. I have no signs or symptoms of anything that might be worrisome, and as we know worrying is pointless anyway 😊. My next checkup is March 27, 2023 which is almost exactly two years after the CAR-T treatment in Toronto. I’ve been told that the two year mark is a bit of a turning point as statistically the success rate of the treatment increases a fair bit. I’ll take that!

On the news front it’s literally news as in an announcements that CAR-T treatments will be available in Winnipeg starting this spring. This will be such good news for those needing treatments who will no longer be required to travel and be able to remain close to their family and support networks. This support is a huge factor is the success of the treatments in my mind. We were so fortunate and blessed to have and abundance of very supportive relatives in the Toronto area during our 75 days away from home.

Some links to the announcement…

New specialized cancer treatment program coming to Manitoba

Manitoba provides $6.6M for new cancer therapy program.

When I had my CAR-T treatment my T cells were sent to a lab in California, USA for “manufacturing”, the process of genetically modifying the T cells to attack the cancer cells and growing several million of these modified T-cells for infusion back into me. The logistics and costs of this process are quite amazing and expensive.

However, Canada is getting in the game with CAR-T manufacturing in B.C!

First made-in-Canada CAR-T cell therapy for cancer shows promise in clinical trial

The new trial, called Canadian-Led Immunotherapies in Cancer-01 (CLIC-01), is the first to manufacture CAR-T therapy in Canada. It uses a different kind of cell manufacturing that opens the door to less expensive and more equitable treatment.

So thankful for our medical system and CAR-T, it’s a life saver.

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Numbers

I guess I like numbers.

Today was a checkup with the CancerCare folks at St. Boniface Hospital and everything is fine. I’m feeling good, getting lots of biking in over the summer, intentionally lost a bit of weight and I’ve has a couple of my riding buddies comment on how much better I’m riding this year over last year. Always nice to hear.

Today is day 1,593 ( 4 years, 4 months and 12 days) in The Journey, day 930 since “Day Zero” (CAR-T treatment) and 455 days healed ( aka in remission)!

Some key blood work numbers are still taking their time in returning to normal but, I can’t complain, it’s all good. 🙂

HgB & PLTs slowly edging towards the normal range
Neutrophils behaving themselves.
LDH (Lactate Dehydrogenase) in the green

At this point the posts will likely be few and far between. The next planed checkup is six months out, sometime in March 2023.

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Checkup

I had a six month follow up visit with the oncologist yesterday. I continue to feel fine with good energy and no symptoms or concerns. No treatments or scans are planned at this point. There will be another follow up in six months. They like to see me. ????

However, the surprise was the blood work numbers! I had fully expected them to continue there upward trajectory to the “normal” zone but instead almost everything took a downward turn!?!

Wrong direction
WBC
In the zone but a bit of a dip
At least the LDH is well behaved