Day -7: End of Day

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 πŸ˜‰

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.

Day -7: Chemotherapy gets under way

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.

My pole dancing partner

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!

Two lines at once. The red line or the blue line? https://www.wired.com/story/matrix-red-pill-vs-blue-pill/

Day -8: The Countdown Begins

We’re up at 6am, and I spend some time with devotions and praying before a quick breakfast and some last minute packing and we’re off to HSC.

At our 8:15am appointment the PICC line is installed and it was an easy procedure (for me) but quite an amazing process performed by two excellent nurses. First they use an ultrasound device to evaluate your veins, and apparently mine are excellent and they pick their preferred target and mark the location. Then they measure how long to make the tubing which runs from your arm (my left arm) to just above my heart, 47cm. Then the arm is draped, the area sterilized and a sensor is placed on my chest. The sensor lets them know when the tip of the PICC tubing reaches the correct location near my heart. Next I’m injected with some local freezing and then a needle is guided into the vein. A guide wire is inserted into the needle and threaded down the vein to its destination. Once that’s in place the PICC tubing is fed over top of the guide wire and then the guide wire is removed. The external end of the PICC line is attached to my arm with a StatLock which holds the tubing and seals the entry point. A gauze bandage wraps around the whole thing and I’m off for an x-ray to confirm the placement of the tip of the line. Once the placement is confirmed, I’m free to go and the whole thing takes about 90 minutes.

Check-in time at my new digs is 1pm, so we head off to Stella’s on Sherbrook for some brunch followed by a brief drop in visit with Mandy, Easton & Clark and then its back to HSC.

My Mexican Breakfast brunch at Stella’s

We’re COVID screened at the HSC front door, processed by admissions and then up to the ward on the 6th floor. At this point there is a locked door with a phone where we are screened again with a bunch of different questions before being buzzed in, basically it’s like Fort Knox. Once in we’re greeted by Shannon, my nurse for today, who shows us around the floor and directs us to my room.

My view for the next 21+days

After getting unpacked Shannon returns and I get weighed, measured, various body parts are listened to, poked and prodded and I answer a lot of questions about all kinds of medical things. We’re introduced to the Physician Assistant, Sung, who repeats the process with a few additional questions. Between the two of them they explain what will be taking place during my stay and answer all our questions. They are very nice and kind to us both and make us feel quite comfortable and reassured.

So, what does it look like, this place where I’ll be hanging out? Let me give you a tour, it won’t take long, I promise. πŸ˜‰

Welcome to my room: 643
The TV and behind Shirley is my workstation.
My bed & chair
Bathroom
Tub/Shower

And of course no day would be complete without the hospital tray dinner of a yummy grilled chicken thigh, plain rice, and broccoli. Milk, tea and a coconut dessert. I eat it all.

Dinner #1

Doctor Touch base

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…

DateDayActivity
June 9-8PICC, Admission, Blood work and other tests
June 10-7Chemotherapy
June 11-6Chemotherapy
June 12-5Chemotherapy
June 13-4Chemotherapy
June 14-3Chemotherapy
June 15-2Chemotherapy
June 16-1Chemotherapy
June 170Stem cells are re-introduced into my body
June 18 –
July 1
1 – 14Recovery
July 215Possible discharge and go home!

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.

Stem Cell Collection or “Harvesting”

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:

Stem cells from the peripheral blood

Blood does not normally have many stem cells. Growth factors, such as G-CSF or plerixafor, may be given for a few days to stimulate stem cells to grow faster and move into the blood from the bone marrow. (Five days of at home self-injection to make this happen πŸ™‚ )

Removing stem cells from the blood is done through an IV (intravenous) line. An IV is placed in a large vein in the donor’s arm. The IV tubing is attached to a machine that separates and collects stem cells from the blood. After the stem cells are removed, the blood is returned to the donor. The process takes several hours and may need to be repeated once a day for a few days to collect enough stem cells for a transplant.

The collected stem cells are filtered, stored in bags and frozen until they are needed for a transplant.

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.

Cycle 3 Day 8: Farewell to St Boniface Hospital ( for a while)

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

Early Morning Reflections

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. 😊

Cycle 3 Day 1

In by 9:00am, out at 3:30pm and the treatment went smoothy. Back at home it will be a quiet night and I’m preparing for some serious weight gain, followed by a serious weight drop, trips to the bathroom every 2-3 hours for several days, and some extra energy and reduced sleep thanks to the Dexamethasone .

This will be the 2nd last visit to St. Boniface Hospital for some time. After the Cycle 3 Day 8 treatment on Tuesday May 19th, the Health Sciences Centre takes over for the Bone Marrow (Stem Cell) Transplant(BMT). This will include several pre-BMT tests, the collection of the stem cells, the hospitalization for additional chemotherapy (the “countdown”), stem cell infusion (Day 0), and then recovery.

CT Scan Results & The Bone Marrow Transplant (BMT) meeting

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.

Tumor size by date

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

DateActivity
May 11Blood test at St. Boniface
May 12Cycle 3 Day 1 Treatment at St. Boniface
May 19Cycle 3 Day 8 Treatment at St. Boniface
May 20Pulmonary function tests
May 25Blood test at Health Sciences to confirm stem cells adequate
May 26Stem Cell Collection at Health Sciences
June 4Meeting with the BMT Dr. to confirm the procedure
June 9Tentative date for admission to hospital for BMT procedure

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.

Sand Castles on Coney Island, Lake of the Woods

Cycle 2 Day 8:

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 πŸ˜œπŸš΄β€β™‚οΈ

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…..

Cycle 2 Day 4: Things are Good

Bunn’s Creek Duck

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.

The weight roller coaster

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.

Telly Savalas as Kojack

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