Journey

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?

Post Day One Recap: No side effects and feeling good all round. Ate a wonder full dinner, thanks to my supper cook Shirley ❤️. Slept well and woke up around 6am feeling quite peaceful and my body was totally at rest.

Starting the day off with a few drugs at home and now I’m at St.B back in the chair. They wanted to put me in a bed, but I declined, that’s for sick people. By 9:15 I’m well on my way to the main chemo drug event with the pre-requisites, Tylenol, Dexamethasone (the killer steroid!), some flush something or other, then Benadryl (aka DIPHENHYDRANINE, simple name right?)

Starting the day off with a few drugs at home and now I’m at St.B back in the chair. They wanted to put me in a bed, but I declined, that’s for sick people. By 9:15 I’m well on my way to the main chemo drug event with the pre-requisites, Tylenol, Dexamethasone (the killer steroid!), some flush something or other, then Benadryl (aka DIPHENHYDRANINE, simple name right?)

9:45 and the main event is underway with the Rituximab. I’m starting to feel a little sleepy, an effect from the Benadryl.

10:30 and things are progressing normally. Enjoying my coffee break muffins.

The rest of the day is pretty uneventful for which I’m thankful. I did experience one of the drug side effects, mild hiccups. I think I can handle that, no problem.

At around 12:30 I enjoy another gourmet lunch thanks to Shirley and a few more hours later I’m home by 3:00pm and Cycle One, Day 2 is a wrap. Probably no more posts until April 6 which is when we will learn more about the bone marrow transplant and have Day 8 chemo.

Shirley and I would like to thank all of you who phoned, texted, emailed, and FaceTimed us over the last two days for your support, encouragement and especially your prayers, they were all deeply appreciated.

Just when you think you know what’s going to happen, things change.

I thought I’d be spending the day in a reclining chair in an area with five other stations, I’m placed in my own private room complete with TV

The next surprise is the schedule going forward. It’s changed from one treatment every 21 days to treatments on Day 1 and 8 of the 21 day cycle. As previously mentioned, for this first cycle Day 1 is split up over two days. Going forward Day 1 of the Cycle is just one day. Clear, right?

First order of business is to get the IV going. This will be the 1st use of the port and it takes a little pursuing but my nurse is unperturbed and after a bit of messing around things are flowing fine. Step 1 is 2 hours of saline to get me good and hydrated.

At about 10:30 I get what I’ll call the “terror talk”. The nurses explain the chemo drugs I’ll be getting today and all the possible side effects and what to do about said side effects. There are quite a few options, none of them too appealing. For both of today’s drugs, nausea and vomiting are at the top of the list. That explains why 4 of the 5 prescriptions I’ve been given are about nausea control.

Well the last time the possible side effect list was pretty similar. I didn’t have any of the bad ones then and I’m believing that I won’t have them now either.

I’ve also been given a rundown on my at home meds and it’s a good thing! This one on these days, that one on other days, some in the morning, some in the evening, some be sure to have with food, some it doesn’t matter. I have a chart now 😊

Well, it’s noon and the main event is about to get underway with Gemcitabine, 2,318mg over the next 1/2hr.

Not exactly suffering here. Shirley sent a wonderful care package of food and beverages. I came supplied with water, coffee, muffins (thanks Elaine), a ham mixture on a fancy cheese bun, fruit and GF cheese scones. I’m having a hard time eating it all but giving it a good go.

At 12:45pm they started cisPlatin, 173mg over 1 hour, then it was back to the saline hydration solution for 2 hours. ETE (Estimated Time of Escape) is 4pm.

That’s probably all for today. I’m feeling good and I think a quiet evening ahead is in order.

So today is the day before the new round of chemotherapy starts. Seems a bit hard to believe I’m here again. And as one might expect, it’s been occupying my thoughts a fair bit . Generally, I think I’m doing pretty well except for a few days where it all seems a bit overwhelming and impossible to ignore. Those days when there is a meeting with the oncologist, a test or a procedure, all seem to make it just a bit more real, a bit more imminent .

Physically I’m feeling pretty fine. Well, not totally fine otherwise I would not have gone to get checked out. There is no pain generally. Some days there are moderate twinges in the chest from time to time that make me aware that something is going on. Other days seem totally normal and I wonder if perhaps nothing is going on. My gauge through this is how well I feel on the bike, especially when I’m on the trainer indoors and doing a workout that drives some serious effort. Again, some days it feels pretty normal and other days I wonder “Are you breathing harder that usual?”, “Is that heart rate higher than is typical” or “Seems like that last interval was harder that it should have been”. I’m glad I’m still on the bike, able to ride hard, and keeping a routine. Certainly good for my fitness, weight and it keeps my mind off other things.

Mentally, it’s been an interesting time. Certainly cancer is serious stuff and nothing to be made light of, but the first time round everything was new, exciting, terrifying and totally unknown. In a way it was like an adventure. Certainly an adventure nobody wants to go on, but in a weird way it made it a bit more tolerable. That newness and adventure certainly wore off as the six cycles of 21 days each seemed to be an eternity towards the end.

This time is different. Many things will be the same but with a different twist. The process is familiar, but the drugs are different. And then there is the looming bone marrow transplant a total unknown and I’m glad to keep it that way for a little longer. There is anxiety about the unknown and I certainly feel it. How will I react to the new chemotherapy regime? I’m believing for the same or better than the last time where I almost felt guilty that I felt pretty OK through the whole process and somehow got off easy. Very thankful for that! Many have to endure far more that I did.

Spiritually I’m in a good place. Perhaps the best I’ve been in my life so far. Since retirement in 2017, the health challenges for Shirley and I in 2018, and on into the present I’ve managed to establish some good habits for me. Habits of regularly reading God’s Word, meditation, and journaling. These three things are what I now think of as the trifecta of well being or flourishing. Thankfully, retirement has afforded me the time to develop these habits, and circumstances have drilled some of them home. Reflecting now, after seeing and experiencing the benefits, I’m wistful that I didn’t carve out the time for them earlier in my life.

I’ve had some amazing encounters with God in my devotion and prayer time especially since the diagnosis of the recurrence of the lymphoma. His is my strength and refuge in times of trouble. My confidence is in Him. One of my “go to” bible passages is Psalm 91 especially verse 16 “with long life He will satisfy me”. I’m not satisfied yet so there is a long life ahead for me.

In a nutshell, feeling strong, confident, peaceful, upbeat and optimistic.