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.

Cycle 2 Day 1:

So I’m back in my favorite (?) chair and Megan is taking good care of me this morning. Pre-meds are in and IV hydration underway.

Plugged in

It about 1pm now and more medicines have been pumping in via the IV and I’ve eaten some yummy lunch that Shirley prepared for me. Feeling very sleepy.

A little excitement in one of the other chairs. A lady had a very sudden and severe reaction to one of the medications. In a matter of seconds she went from “I don’t feel too good” to “I have severe back pain in the 9-10 range! Instantly, 5 nurses were assisting, stopping the meds, on oxygen , Benadryl, pain meds, and charting everything . Very shortly, the on call Dr arrived for a consult. Very intense! In about 10 minutes everthing subsided and she was back to “normal”. Thankful I’ve never had such a reaction.

Another couple of hours to go. More napping is highly likely.

The rest of the day is uneventful and I’m done by 3:30pm and Shirley is waiting to take me home.

Another quiet night (like so many nowadays )at home with Boston Pizza take-out.

A tweak to upcoming events

A goose at St. Vital Park

A fine Friday for a walk in the park while keeping our distance from everyone. It was actually quite busy as one might expect on one of the first warmer “spring” (?) days. Groups of people sitting in lawn chairs at least 10′ apart is an odd sight as we adjust to the current situation. Folks were friendly, but generally switched to the other side of the road when passing.

Anyway, the updates. Shirley contacted the oncology nurse this morning to confirm that she would not be able to be with me for treatments or in person Dr. visits as per a posting on the CancerCare web site. Sure enough, just patients, no visitors or support people.

To protect the safety of patients and staff, CancerCare Manitoba must limit the number of people in the building.

Effective March 25, 2020, we are tightening our risk reduction measures. Support persons/escorts will not be allowed to accompany patients for visits except in exceptional circumstances. Pediatric patients are allowed only one parent/caregiver to be present at the appointment.You can use your personal cell phone to include another person in your appointment.

And while that was happening the nurse informed us that instead of a blood test & Dr. visit on Monday and chemo on Tuesday that it would be chemo on Monday from 8:30am to 4:30pm and again on Tuesday from 8:30am to 3:30pm. So, two long days in the chair hooked to an IV. And, by the way the volunteers who bring you snacks, beverages and soup for lunch won’t be there either. Thanks to my wonderful wife Shirley, I’ll be traveling with a substantial care pack to get me through the day.

Subsequent treatments will be faster but, with this first go around with the new drugs they want to go very slow and monitor for any adverse reactions. Of course I’m believing that this will just be two long boring days with no adverse reactions.

The Oncologist Visit

So, post blood work, it’s on to the oncologist. We’re greeted by friendly but saddened nurses we’ve worked with before. First Kelly for the initial vital stats and general status questions, then Margret who takes us through the treatment plan and answers a lot of our questions and then Dr. Moltzen who further explains the treatment plan and why it is what it is and clarifies and responds to some additional questions.

So, here is the diagnosis and plan:

  • The growth is a reoccurrence of the 2018 lymphoma
  • It is highly treatable and they are planning for a cure
  • There will be chemotherapy, a different regime than 2018
    • The drugs are not supposed to cause heart damage like in 2018. See MUGA scan on Six Month Followup
    • Hair loss is “sometimes”, last time it was “for sure” 🙂
  • Autologous (I’m the donor) bone marrow transplant
Continue reading “The Oncologist Visit”

Six Month follow-up

I’m at St Boniface hospital for the standard blood work and a visit with the oncologist. I’m feeling good and the visit should be uneventful.

I have a few questions, most I suspect will not have a clear answer. Things like “Are you sure the Cancer is still gone?”. It seems that the blood work tells them next to nothing about the presence or absence of cancer in my body. I’ll ask again about scans or x-rays but so far it’s been a “no go”.

After meeting with the doctor she confirms that there will be no scans due to the radiation exposure unless there are symptoms warranting a scan. So, no scan just for a casual look see.

One thing I’d totally forgotten about was the follow-up MUGA scan post-chemo that took place back in March 4, 2019. It seems that I didn’t get off total free from some negative effects of one of the chemo drugs. My left ventricular ejection fraction (LVEF) decreased from 67% to 50% which was described as “significant” but “at the lower end of the normal range”. A caveat was noted that “the patient” positioning was different between the two scans. I didn’t notice this until later so I didn’t get to discuss this with the doctor. Now believing Ps 103:1-5 more that ever, especially v4 where is says “Who redeems my life from destruction” – the “destruction” to my heart that the cancer/chemo caused will be redeemed and restored to it’s proper function, capability & capacity.

The Hair

They said after chemo that when your hair grows back that it frequently is curly.

Of course I didn’t believe that. My hair was fairly straight and it will come back just the same as when it left, straight.

We’ll…..

…. what do I know?

I’m now being referred to as “Lambkins”

Port Care

I’m back at St Boniface Hospital today to get some “port care”. Basically a flush of the port with saline and heperin to make sure it’s not getting clogged.

The place brings back all the memories of chemo therapy and I’m surrounded by three other chairs with patients getting treated. I’m so thankful my treatments are in the past.

On December 19th there will be one more procedure to remove the port completely and when that heals, hopefully chemotherapy will fade away in the rear view mirror.

Cycle 4 – Day 1: Half Way

Today marks the half way mark in the planned treatment program and we’re back in the chair for another chemo treatment.

Strangly, it’s getting harder to do. Physically, things are pretty good but psychologically I’m less and less “up” for the process. Perhaps the seriousness of the situation is sinking in. Last night’s sleep was restless and I think with all the benedryl I’ll get today it’s likely that I’ll be taking it easy for the afternoon. Either that or because I’ll be jacked up on Prednisone I’ll be washing the car and doing all kinds of stuff around the house. 😳💪

The IV is hooked up and the pre-treatment stuff is flowing in.

The retuximab injection is next.

You know the chemicals are serious stuff when the nurse is fully gowned and wearing gloves just to carry the drugs from wherever they mix up the concoction to my chair side.

I napping in the chair for a good part of the treatment and before you know it, I’m done.

Cycle 2 Day 1: Back in the chair

Here is where I’ll be spending the morning at St Boniface hospital getting my cycle 2 chemo treatment. Thanks to Mandy for the ride in. It was nice to see the grandkids who were banished to the 3rd row seating because they might have been exposed to something from some other kids. Apparently, I’m supposed to be careful about things like this as getting an infection would be a  BIG deal. Better safe that sorry in this case.

Just when you think your getting the hang of the routine there is something new. The “R” drug that was a 3 hour slow IV process is now a 5 minute injection since there was no problem with reactions to the 1st round. The nurse and I chat as she squeezes in the drug subcutaneously into my stomach area. Again, no adverse reaction, so all is good.

9:40 am and the “R” (rituximab) is done. Starting to feel a little sleepy from the benadryl and it’s on with the other drugs in the CHOP-R protocol.

The rest of the procedure is as expected, and the time seems to fly by. We’re done by 11:45 and Mandy picked us up for the ride home. Cycle 4 is scheduled for July 31, 2018.

While I don’t have a lot of experience with the group interactions in the chemo therapy room, today is proving quite interesting. One of the ladies across form me is quite talkative with all the nurses and with the lady in the chair next to her. They are both in their 40s and are sharing their beast cancer experience. The most hilarious discussion so far was that she went to high school with the surgeon that did her lumpectomy. Upon meeting her surgeon pre-op she told him that when in high school he likely wanted to see her breasts and that he now has “full access” to them 😄. I think the stories will continue all morning long.