Month: April 2020

Here I am again, back in the chair and with Megan looking after me again. I think we’re becoming an item.

So, a little bit of back tracking. For sure most days are OK, but some are definitely not so good. Last Saturday and to a bigger extent Sunday were more challenging physically, mentally and emotionally. I was hyper aware of my abdominal area and while I was hungry, eating didn’t seem like a good idea, but I did it anyway. I felt quiet and fairly tired and totally unmotivated. At one point I forced myself to get out of bed and wash a couple of the bikes. It seems to be a combination of a number of things and probably most attributable to coming off the high dose of the steroid dexamethasone. But, as we say around our house, “and it came to pass” and pass it did and Monday was a much better day all around.

Monday was a nice sunny day and after a relaxed start to the day which included pajamas until noon, I readied the road bike for its first outdoor ride since March 18 and out I went. I kept a very relaxed pace and resisted the urge to chase down a 30 something guy who passed me on a 29’er mountain bike. Talk about self control 😜🚴‍♂️

Even at a very easy pace, this was pretty much my limit for the day. Legs and arms were pretty tired but it felt good.

We took dinner to Des & Eric’s and had a nice socially distanced backyard dinner with them and Parker & Dane. Its getting harder not touching and hugging people and I especially miss being physical with the Grandkids and roughhousing with them.

Great sleep last night after many days of being up every 2 hours dealing with the fluid retention issue. My weight has once again rocketed down to 208. This is a bit amazing since I had a bit of a sugar craving last night and ate half a box of Morden’s Russian Mints! Things should be relatively normal for the rest of the cycle.

So, it’s 11:45am and the premeds and IV hydration are in and the chemotherapy is under way. Things should wrap up around 2-2:30pm

Perhaps more later…..

Just paddling along in pretty good shape. I’m feeling well and rode the bike on the indoor trainer for an hour workout with no problems and am still feeling fairly energetic today. The rapid weight gain seen in Cycle 1 seems to be repeating and I’m assuming it will fall off just as fast. The low point in the middle below was about 209-210 which is a pretty good spot for me.

Similar side effects as in the previous cycle are happening such as hiccups. A little weird eh? They occur intermittently after eating and when lying down. When lying down there will be 1-3 fairly strong hiccups and then they stop, until you change positions or roll over etc., then there will be another set of 1-3 hiccups. Makes you think twice about rolling over at night.

On the hair front things seem to be changing a bit. I’ve noticed a bit more debris in the sink after combing. Not the rapid clump losses experienced in 2018 but I think there might be an imminent return to the “Kojak” look.

Well, this would solve the problem of getting a haircut for quite a few months. The clippers are on standby 🙂

So today was a visit to the hospital for some blood work and a meeting with the oncologist. I was in and out in about an hour. Blood work was quick and easy thanks to the port and was done in the CancerCare area rather then having to go to the central lab in the main part of the hospital.

The visit with the oncologist was fairly straight forward as we reviewed some very minor side effects from the first treatment session. We also discussed some other treatment options and I learned why they were not appropriate for my situation. Basically just getting a confirmation that the current treatment plan is the best for me at this time.

Tomorrow will be the start of Cycle 2 and it will be all day at St. Boniface Hospital. Shirley has already planned a fantastic lunch and an assortment of snacks plus I’l have the new iPad to keep me company. 🙂

On the good news front I asked for the results of my MUGA ( multigated acquisition) scan performed on March 16th. Some chemotherapy medications can cause damage to the heart, so that’s why the test was done in my case. The primary result of the test is a percentage number called an ejection fraction, basically how well the heart is pumping.

• June 2018, before any treatments: 67% which is pretty normal.
• March 4, 2019 after the first round of treatments: 50% – passable but not so good.
• March 16, 2020 before this current round of treatments: 58% !

The good news is I was told the ejection fraction typically doesn’t improve. Once the heart is damaged that’s that. Thank God, He has the final word and my heart is recovering and getting stronger.

I won’t lie, yesterday was a tough day emotionally and mentally, but today it’s a new day.

Yesterday was another treatment, plus a conference call with the specialist about the bone marrow transplant procedure.

Up front, the bone marrow transplant’s goal is cure, and the procedure has a “curative intent”.

The bone marrow transplant is a fair bit more intense than we’d expected. Up till now my current thinking is that there is a slow reveal about what the medical procedures are going to be. A bit at a time, to help you manage the information. This time it was a pretty big “dump” of information, with even more details to follow.

So, I’ll just outline the process at a high level with some tentative dates to give everyone some idea of the activities and timeframes. The doctor outlined it as a 3 part process.

Part 1:
Continue on with current treatments until some time after Cycle 2 (est. between April 22nd-May 10th). At that point there will be a CT scan. The purpose of the scan is to confirm that the tumour has reduced by 1/2.

Part 2:
Collect stem cells. In the “old” days this involved surgery, drilling into the hip bone area and sucking out the bone marrow. Less than appealing eh? But, in the current process, it’s all done via the blood in an about 4-6 hour event that was referred to as “uneventful”. Simplistically, it’s blood out one arm into a machine that does the extraction of stem cells and pumps what remains back into the other arm. Kind of like an oil change, sort of? This is likely to happen towards the end of Cycle 3, sometime in the end of May to mid-June. Of course as the dates get farther out there is less accuracy so things may slide one way or the other.

Part 3:
The Exciting Part. In the hospital at HSC for 3-4 weeks starting early June. One week of intensive chemotherapy treatments with the goal of wiping out the existing bone marrow / stem cells. One day to re-infuse the good stem cells extracted in Part 2. 12-14 days of recovery where they are monitoring closely. Then another couple of days to show that I’m good to go home.

Our next meeting with the bone marrow transplant team, face to face, will be around the end of Cycle 2, in approximately 5 weeks.

So, a lot to take in, a lot to process. Yesterday I felt pretty subdued, extremely tired and very challenged. However, today is a new day.

This morning, after an enormous amount of sleep and some reflections, I’ve made a change in the way I’m going to think about things going forward. Actually, just a few of the many changes that have been made in recent weeks.

I am no longer thinking about chemotherapy, chemicals, pill as just drugs, but as medicine and treatments that will only do good in my body and cause no harm. They will only do what they are supposed to do, which is to destroy the cancerous cells.

Also, every twinge, sensation, stomach gurgle, weight gain, weight loss and any other weird thing I feel inside me is the cancer tumour breaking up and leaving my body. Poof! Gone!

So thankful for family and friends reaching out in love, prayer and support for Shirley and I. Frequently at the exact moment one of us needs it. We are blessed.

Happy Birthday Shirley! Perhaps one of the weirdest birthdays given what is going on in the world, also perhaps one of the best so far. Love you so much.

Another first for me. Last time it was treatment on Day 1, wait and repeat 21 days later. Now it’s Day 1, perhaps a Day 2 and for sure a Day 8.

Day 8 is for another dose of Gemcitabine. Sounds delicious right? The process should be relatively short. Some pre-treatment anti nausea stuff (insert long complicated drug name here), wait 1/2hr for that to kick in and then the chemo med for another 1/2hr. Finish it up with a 10 minute flush and I’m done.

So, more or less expected and then the unexpected. On Days 7-14 I’ll be self injecting with GRASTOFIL® • Filgrastim (fill-GRASS-tim) is a drug that helps your bone marrow make new white. blood cells. White blood cells protect your body by fighting bacteria (germs) that cause infection. That sounds like a good thing right?