Journey

The afternoon was was much quieter than the morning. I think all the staff are busy with paperwork or other high need patients. I’m enjoying my daily care packages from family and friends, certainly one of the highlights of the day. The other was Shirley with a Starbucks!

Nothing significant to report from a medical standpoint. All my vital stats continue to be good and I’m feeling fine. IV fluids continue all day and all night. There is a bag switch at about 1:30a.m. which I may or may not sleep through. However, I’m thinking sleeping through the night won’t be happening for some time now given the hourly bed checks and various hospital noises. Who knows, perhaps I’ll get used to the place and block most of it out.

I think I’m at the top of the leader board on walking hall way laps. Perhaps I’ll post about that tomorrow 😉

I’m starting to use the iPad more and learning more about the ins and outs of iPad OS and some apps that are quite a but different in the iPad vs. the Mac. specifically, this afternoon spent a fair bit of time with Logos trying to get the hang of the interface etc. Youtube to the rescue.

Tomorrow is a new day.

I’m up just before 6am and get my room tidied up, bed made etc., and shortly thereafter a nurse arrived to start my IV. Initially with just saline solution and later around 10:30 with some Benadryl. Now, at, 11:30 with the the chemo therapy choix du jour, Bendaustine.

Yesterday, I was worried about boredom, and I suspect that will come, but today it’s been quite busy so far.

1. Start the IV and take some anti-nausea medication.
2. Full set of vital stats, blood pressure, temperature, heart rate, listen to my chest, listen to my heart (checking for rhythm ), mouth check (for sores)
3. I’m weighed on a scale that is wheeled into my room
4. I walk some hall laps (2x) and meet one of my fellow “residents”. He is my competition for the most number of hallway laps in a day. Its game on!
5. The bathroom is cleaned and garbage emptied.
6. Normal medications are delivered.
7. An EKG is performed
8. All of my electrical cords (chargers, extension cord, and CPAP power cord) are inspected and approved by the maintenance department.
9. Actual physical mail gets delivered (thanks!)
10. Multiple texts from well wishers (thanks very much!)
11. Some pre-chemotherapy medications (pills) to prevent negative reactions to the chemotherapy are delivered and consumed
12. The chemotherapy medication is added to the IV pump
13. The nurse pops into the room quite frequently just to see if I’m doing OK

All this before noon!

Thursday we spoke with Dr C Speziali the oncologist in charge of my bone marrow/stem cell transplant. He reviewed the planned schedule (below) and answered all of our questions. As of today, the planned admission is still Tuesday June 9th.

On the 9th at 8:15 I’ll have a peripherally inserted central catheter (PICC) “installed” and then it’s off to the admissions department and then up to the ward on GD6 at HSC. The schedule is planned to go something like this…

The Stem Cell re-introduction is a major milestone and the days before are referred to as the “countdown” hence the -8 to -1 day numbering.

We also got the results of the MUGA and Pulmonary Function Test from May 20th, both of which are fine according to the doctor. However, the MUGA ejection fraction fell from 58 to 52 for reasons that are unclear to me. The current chemotherapy is not supposed to have a negative effect on heart or lung function. Oh well, it came back up before and it will be restored again.

After the phone call we head out to the lake for a few days of R&R, some family time and generally just taking it easy before heading back to town on Sunday to enjoy a barbecue with our sons and their families.

Today was “harvesting” day. We’re up early and over to HSC at 8am for the procedure. I’m ushered to an area with a couple of beds and and a number of interesting looking machines. I’m settled into place and given some “relaxing” medications.

I’m getting a lot of attention, with two nurses getting me set up for the procedure. I’m given two warm/hot packages to hold in each hand and another couple of hot packs are put on each arm. The reason is to relax the blood vessels in my arms to prepare for the IV insertion. These don’t appear to be your typical IV needles, they are quite large, about the size of a 2″ nail. With a nurse on each side of me they simultaneously insert the IVs into both arms. The theory is that one big poke is better that two separate pokes.

So what is stem cell collection all about anyway? There are several different ways and purposes for stem cell transplant. I’ve extracted the part that applies to me from the Canadian Cancer Society:

The machine that does all this work is quite amazing, blood out my left arm, stem cells collected via a centrifuge and the remaining blood products are pumped back in to my right arm.

During the 4 hour procedure all of my blood was cycled through this machine twice!

Other that getting stabbed twice for the IV lines, the procedure was quite painless and due to the medication, most of the time I was dozing in and out. The collection volume and concentration of stem cells was successful. The next step is a meeting with the Doctor on June 4th and then the hospitalization which is tentatively set for June 9th.

After today Health Sciences Centre takes over for all further testing and the Bone Marrow Transplant / Stem Cell Transplant procedure.

Well, the last couple of days have been pretty rough. I’ve been feeling quite weak/tired coupled with pretty intense dizziness and low blood pressure. The most likely cause is rapid dehydration / rapid weight loss as some of the at home medications come to an end.

I also think that unlike 2018, the cumulative effect of the therapy is taking a harder toll on my body. Couple that with the mood swings induced by the medications and let’s just say I’ve had better days.

Today, things are a fair bit better, still some dizziness, but better. I’m getting some IV hydration prior to the treatment so that should help too.

I can’t be too bad as I completed my household assignments this morning of vacuuming and cleaning both bathrooms 😊🚽

Tomorrow there are two testing procedures scheduled. 1) A Pulmonary Function Test ( a first for me) and 2) a MUGA scan, both at HSC.

Post-tests we’re heading to the lake, which I’m really looking forward to. The lake is always special, but given the amount of time we’ve spent at home, the change of scenery is going to be awesome!

Thanks to Scott, Mandy, Easton & Clark the cottage is up and running so there will be minimal work as we arrive, just unpack and enjoy!

Just so there is a project so I’m not too bored, another part of the septic system decided to call it quits this year. This time it’s the metal pipes that deliver air into the main holding tank to agitate the “material” and aerobically break it down. Well, after almost 40 years in a hostile environment, rust takes it’s toll.

Between Scott and I we’ve secured enough parts for a full rebuild and it should be a quick install and hookup and we’re good for another 40.

Over the years the electric motor, compressor, and the septic field itself have been repaired or replaced, some multiple times. The joys of cottage ownership where you are responsible for most things. 😊

Yesterday was a CT scan at St. Boniface which has become a routine event. Just writing that seems a little weird that I now consider such a significant test as “routine”. As I look back this was at least #4 or perhaps #5 for me. After a while you get the hang of the process.

Today, we met with the nurse and doctor that will be looking after me in the Bone Marrow Transplant (BMT) process. They are both very nice and explain everything and answer all our questions.

The good news from the CT scan is that the tumor has responded well to the chemotherapy treatments and has been reduced from 8.5 cm x 6.2 cm to 6.6 cm x 2.9 cm, a 63.6% reduction which is awesome and clears the way for proceeding with the BMT.

Just for reference, here is a graphic to scale of the tumor according to the CT scan reports for both 2018 and 2020.

Over the next few weeks there will be a fair bit of activity, here is the schedule as we know it.

It seems that I’ll be a resident in the hospital for most of June and escape in early July hopefully to the lake for some sun, rest & relaxation.

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 🙂