Journey

I’m back in the outpatient clinic this morning for another in person assessment and blood work.

It’s raining here but I understand Winnipeg has snow and a cold week ahead! Just when you think winter is over there is one more surprise.

Nothing too much to report here. I’m feeling well and a bit stronger every day. No complications and we should be cleared to return home after this Friday’s meeting with the CAR-T team.

On Saturday I went for the biggest walk so far. I have an app that showed a popular trail in the area, the Joshua Creek Trail. However Google maps said the trailhead was ~1hr away. OK, lets give that a go and see what the start of the trail looks like. Once at the trailhead it was “Well, I’m here I might as well walk down it a bit to see what it’s like”. A little while later I‘m telling myself “It’s just a bit further to Lake Ontario”, all the while trying to remember I’ll have to walk all the way back!

A few pictures along the walk.

So, after the blood work results are back they have decided that I need an injection of Grastofil.

From drugs.com here is the explanation of why Grastofil for me at this time. It’s actually the third injection since I was admitted to the hospital.

“to reduce the duration of neutropenia (low levels of neutrophils, a type of white blood cell) ”

In addition, they have re-started some other medications to help prevent any infections while my immune system recovers. Apparently, this is all standard stuff for a recovering CAR-T patient.

Just one more week and we should be heading home to Winterpeg Winnipeg.

Nothing to new to report as vital signs continue to stabilize into a more normal pattern. The blood pressure is more consistent between sitting and standing. However, various blood counts are still fairly low but slowly recovering, which is typical with this treatment.

Right now the blood work has been sent off to the lab and my PICC line dressing has been changed and I’m waiting to see if they are going to do anything else while I’m here.

Yesterday I was out for a fairly decent walk, the longest so far, and I felt pretty good. Lots of great trails to explore in the Oakville area.

The main part of the walk was to explore this trail.

I speak with the nurse practitioner and she is satisfied with my test results and nothing further is require today so I’m free to go!

Same stuff, different day.

Things for me are progressing well. Today, I’m at Princess Margaret Hospital (PMH) outpatient clinic for an in person assessment visit (Monday & Thursday) and my vitals are good except for the blood pressure which is a little low when I stand. It seems likely they will give me some IV fluids to help with that in spite of me drinking 3-4 litres of water a day.

The blog is likely to be fairly quiet for the next week or two as ongoing monitoring continues, SSDD. 😊

My current corner office chair view.

I’m up around 8am for a shower & shave (oooh, a big day!) and down for breakfast. But first there are those pesky vitals to record.

For blood pressure they want to record sitting and then standing pressures. My sitting pressure was pretty OK but my standing pressure was a little low even after doing it three times. So, the protocol says call the clinic. 😕 I’m feeling fine, no dizziness etc. but we call the clinic. There are numerous questions and we do the 2pm checking call stuff early since I’m on the phone. The advice is to wait one hour, repeat the BP and call back.

The next round of BP numbers are quite respectable and we call the results in. The advice now is to keep monitoring of course and call if anything weird happens. Saved! No trip downtown to PMH for IV fluids. 😊

Lunch, a nap, a walk, dinner and some TV will wrap up the day.

Today is the 1st of twice weekly drives down to Princess Margaret Hospital to the outpatient clinic for blood work and an in-person assessment.

We’re up at 6am! This is a bit of an adjustment as I was used to the 6am vitals check and then rolling over and going back to sleep. Today, it’s up, get dressed head down for a light breakfast and coffee plus the vitals check. We leave at about 7am and arrive at 7:45. I grab a Tim’s and head up to the 14th floor clinic.

First up is the blood draw to send it off t the lab ASAP. The 2nd thing is a bit of a surprise! My PICC line has been “leaking” and there is a fair amount of blood. The nurse cleans it all up and applies a new dressing. The blood seems to be clotting OK, I don’t remember pulling on the line and there is no pain at the sight so it’s a bit of a mystery.

At 10:30am they tell me there was a “problem” with a couple of tubes of blood so they need to re-draw to complete the testing. No big deal except this means another 1+hrs in the clinic. Around noon the report comes back and they are happy with the test results and I’m free to go.

Kathy picks me up and we’re back home for some lunch and a nap. Later in the afternoon it’s time for another exploratory walk, this time a bit further that the 1st walk. 😊

Dinner and a little TV watching rounds out another day.

So enjoyed 2 cups of excellent coffee, toasted English muffin with peanut butter and being in a home, so nice.

A fair bit of lazing about and then I got ambitious and went for a walk outside.

A very nice walk on a paved path beside a creek.

We finished off the day with a very nice Thai take-out dinner and a birthday celebration in honour of Kathy who turned the number we are surprised by but celebrate..the day we collect OAS/CPP . A little TV and it’s off to bed. Early start tomorrow to get to the 1st outpatient clinic appointment at 8am.

I had a good night, the 1st full night off the IV and my morning vitals are looking good. After a leisurely breakfast and shower the nurse returns and informs me that I’m getting some IV fluids, surprise! It will take 2 hours and it’s 10am now. I ask about getting discharged. “You need to see the doctor 1st”.

I talk with the doctor and things are all good. I ask if I can leave now. “You need to see the pharmacist”. OK, no problem, especially because he shows up a few minutes later and reviews my meds going forward, what to stop, what to put on hold for a while, and a couple of new things to start.

It’s now noon and the nurse is back to disconnect the IV. I ask if I’m good to go now. “I need to finish up some paperwork and then you’re good to go”. Turns out this is the last hurdle and we get the paperwork, say good-bye to the ward staff an head on out to meet Kathy at her car waiting in the pickup loop.

After a short drive we’re “home”

After unpacking and a short nap it’s a lovely home cooked meal. So tasty and so nice to eat at a real table with other people, especially when they are two of my favourites!

The hospital and staff were great for getting my treatment done, but it’s so nice to be on the outside.

It all happened really fast. At about 11:45am a lady sticks her head in the door and asks if we can make a 3pm meeting today for caregiver training. I say yes, and then call Shirley to find out if that’s true. 😊

Then, almost immediately I’m getting a flood of meeting notifications on the myUHN patient portal for daily meetings from this Wednesday until April 17th. On Mondays and Thursdays the meetings are at the hospital for blood work and assessment. All the other days are for phone appointments where Shirley will report my status.

Shirley arrives just before 3pm and we’re guided one floor down to the immunotherapy day hospital area where Shirley receives her training for the 3 times a day assessment she gets to perform on me.

All good news, as this means I’ll get released from hospital tomorrow and that we’ll likely be returning to Winnipeg on April 19th.

Things must be getting medically uninteresting as todays topics are the weather, the fun, the food and the visitor!

Sort of hard to tell from the above photo, but it rained with varying intensity for most of the day and was quite windy in the afternoon and evening.

Thanks to Mandy, who sent me a list of things to do when you are bored in the hospital, meet my new friend Nitro. The hospital version of Wilson in the Tom Hanks movie Castaway.

On to today’s special food delivered hot & fresh by my special visitor, Shirley. I’d recommend the chilli cheese potato wedges from Tim’s, yummy.

And then there is the lovely Shirley, who brightened my day and made yet another heart connection with the weekend doctor. I’m now calling her the “people magnet”.

I’m feeling a little better every day and it’s been over 24 hours with a temperature less than 37°C, aka normal. It’s been 13 days post-chemo and as you can see the hair is hanging in there, another good thing.

I know you’ve been waiting for this one so let’s dive into the numbers!

Your mini-guide to blood.

Thanks to the myUHN patient portal it makes it easy to track all of the testing. First up are Neutrophils, 55-70% of White Blood cells are Neutrophils which “live” for about 1 day. Currently they are more interesting to me right now as the doctor hinted that they like to see 1.0 or greater before discharge. A ways to go here. Come on bone marrow, get to work! 😊

On the charts below the blue area represents the normal range. The white area at the top is the high zone and the white area at the bottom is the low zone. On the left axis the numbers represent the normal range. So, for the Neutrophils the normal range is 2.0 – 7.5.

E

Platelets, not too concerning here unless I cut myself as they are involved in the clotting process.

Red Blood Cells (RBC) make up 40-50% of blood volume and live for approximately 120 days. Therefore, production of RBCs is slower and recovery takes longer. Their purpose is to provide oxygen to the body’s cells. For me, this means harder breathing and quicker fatigue when riding the bike with my mates. 🚴🏻‍♂️

Another part of the White Blood Cells are Lymphocytes. This is where the T Lymphocytes live, now home to the CAR-T Lymphocytes, which attack and destroy infected cells and tumours.

Overall White Blood Cell (WBC) counts. Home to both Neutrophils and Lymphocytes.

Hemoglobin is a component of Red Blood Cells. Each molecule of hemoglobin can bind 4 molecules of oxygen thereby helping with one’s energy level. So, low RBC and low hemoglobin is a double whammy that means you can’t ride as hard as you’d like. 😕

C-Reactive Protein is a marker of inflammation in your body and basically, if anything is going wrong, the numbers climb. The first dot on the far left is 1. It starts going up when chemotherapy starts. The peak dot is 113 and the last dot is 60. In the last two days it was 11 and 7. For some reason I couldn’t make them show up on the chart.

The weight has been on a bit of a decline which is interesting since I’m still eating pretty well and just sitting/laying around.

Totally bored yet? Sorry. Tomorrow is Visitor Day so the report should much less technical.