Day +14: First full day on the “outside”

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.

Day +13: A beautiful day for leaving the hospital!

A nice bright sunny morning and the last day I’ll see this view.

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”

I’m much happier than I look!

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!

First “home” meal in 14 days.

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

Day +12: Ready To Go

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.

Tonight’s Sunset – Last One

Day +11: A dark and stormy day

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.

Nitro’s Parents

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.

Some goof eating Tims

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.

Day +10: The Numbers

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.

Day +9: Food Review

Today was my first experience with the “Menu Alternatives” which are changes or additions you can make to the standard daily menu.

First up is the Deluxe Burger with bacon, lettuce, tomato and onion plus all the standard condiments.

Some assembly required.
Finished product, quite tasty!

As welcome as these new menu options are I get photo reminders that things are different on the outside.

Wine o’clock
Hmm, I’m seeing a theme evolving here.
Real food, at a real table with real other people.

Medically, nothing new to report. The low grade fever persists and is coming down. I’m off isolation so once again I can roam the halls for entertainment. It’s especially nice to be able to get ice water and towels etc. without bothering anyone.

Tomorrow, lets get technical and look at the numbers. I know you can’t wait! ?

Day +8: Moving Day (again!)

Shortly after 8am my nurse, another nurse and the housekeeper show up and “my door” and announce that I’m getting moved to a new room.

They say I’ll like it and refer to it as “the party room” and “the honeymoon suite”. In a matter of a few minutes they round up all my stuff, put it on the bed, and roll it on down to my new digs at the end of the hall. Same great view of SW Toronto but 2.5x the size of my last room. End of the hall is also the quietest place on the floor and apparently the room is the largest single patient room in the complex!

Later in the morning the doctor shows up and says I’m doing fine, no concerns. Yesterday he dropped by with a nurse practitioner from a different hospital and said to her “ this is how we want all our CAR-T patients to look on Day 7” As in (apparently) I’m lookin’ good. ?

Later in the afternoon I meet the dietician who informs me about the “Menu Alternatives”. Turns out there are many things that I can just write in addition to or a replacement for items in the standard daily menu. She’s going to override whatever I ordered for lunch tomorrow with a Deluxe Burger with bacon!

What Garry has neglected to mention is that he was FaceTiming with me when his nurse comes in. I met her yesterday and she’s joins the conversation as her and I have become buddies. She tells me I’ll love the honeyroom suite Garry is in and I ask if I can have overnight visiting privileges. Much laughter ensues and she says that might be pushing it:(

I then mention that Garry’s food trays have been very erratic and missing a significant number of items such as the morning’s oatmeal to go with the brown sugar he had ordered to go with it. One night dinner consisted of peas and soup.

It seems nothing is too much as far as what Garry needs or desires and she will have the dietician come see him. Hence the burger!

She also indicates that she’s caring for Garry on Sunday and is looking forward to seeing me again when I come for the twice weekly visit.

What wonderful, amazing care for my man, when I can’t be there to bring him daily rations of food and watch over him.

He is in good hands, as am I!

Today I went shopping to a local mall with Kathy where I purchased a new spring wardrobe, the first significant and only fun shopping experience in over a year. (The men won’t get this , but the rest of you know what I’m saying). And really it was essential, because I came with a winter wardrobe and today Oakville is 22C.

We are both doing extremely well are are so thankful for this treatment being available to us! Garry truly is worth a million dollars because I would not be surprised that this is what the final cost will be if not more.

Thank goodness we live in a country that has Medicare available to all it’s citizen’s and more thanks to all of you for your tax dollar contributions. I pray you will never to to collect but know that help is there when you need it.

We are blessed and so thankful for everything, again my heart is full to overflow!

I can hear Garry saying get your own blog, so I will sign off now. Love and miss all of you.

Day +7: It’s Visitor Day Again!

Pretty pumped about Shirley coming to visit today. More special treats on the way! This time it’s a deli Rueben with a pickle and home made chicken rice soup from the cousin. We eat lunch together and talk about a bunch of stuff and suddenly the four hours are up and it’s time for her to go. ?

On the medical front, not too much happening today. The fever is going up and down through the early morning and into the evening. Once again the doctor says it’s typical for this stage in the treatment. I’m still a little tired, minor headache and some shoulder muscle aches. Other than that I’m doing well.

Not a lot to talk about today so it’s a little short. We’ll see what tomorrow brings.

Day +6: The Heart

Thy Word have I hidden in my heart,
That I might not sin against you.
Psalm 119:11 NKJ

I’ve been thinking about this for a couple of days now and last night between 2-4:30am I had a lot more time to think about it.

The fact that I had a fever again was a little frustrating and concerning. Am I going downhill, will things get much worse? Then, immediately after that, one of the first things that came to me was:

“On Christ the solid Rock I stand
All other ground is sinking sand “

My Hope Is Built on Nothing Less
Solid Rock

Back in the day when my parents were taking/dragging me to church in my pre-teen and early teen years I’m sure I sang these songs, oldies but goodies. Probably driven home more recently (2012) with Hillsongs Cornerstone. Not the same lyrics but themed off the older songs. All these songs have the central theme that “my hope is built on nothing less than Jesus’ love and righteousness.” .

Then, it was Waymaker:



“You are
Waymaker
Miracle worker
Promise keeper
Light in the darkness
My God that is who you are”

After the lyrics I thought about the scriptures that back all those words up.

Why an I saying this? It’s the middle of the night. I’m a little shaken. And, because I have done the, “ Thy Word have I hidden in my heart”, God’s Word came flooding back to my mind and I’m back at peace.

I know a fever is not a big deal, but cancer is a big deal, and CAR-T therapy at this point is a big hairy deal and Shirley and I have both had many freak out moments through this cancer. But sooner or later, and these days sooner, we’re turning it over to God, pressing in, leaning on the Word and His faithful promises for all who believe in Jesus Christ.

Also we know quite a few friends and family who are going through serious life challenges. Some who know God and several who don’t have Him to turn to for comfort, shelter from the storm, faithful promises for good and so much more.

Without a firm foundation in God, before life’s difficulties hit, and they will, Shirley and I know it would have been so very much more difficult for us.

How did this happen? Well, a few years back when things were pretty “normal” I decided to read The Bible, start to finish, in order, every word over 365 day, every single day for a year, never missed a day. Amongst other wonderful things that made a habit. So what’s next? I started reading one or more devotions with accompanying scripture, every day. Our mornings now start with a cup of coffee and devotions, right out of bed, in pajamas. We use the youVersion app, highly recommended!

I know I should have done it sooner. I’ve heard plenty of teaching on the importance of learning God’s Word. Anybody who has attended a Christian church should know it, as many read The Word to you every Sunday. But there is a big difference between being read to and reading and learning for yourself and yes it takes some effort but, so rewarding!

Thanks for reading.

Day +6: The Facts

I’m tired. Not much sleep last night.

I started trying to sleep around 10:30 after the 10pm vitals were done. But the cough, when laying down, kept me awake for about 90 minutes before it gave up. I slept well from then until to 2am vitals.

At 2am I’m 38.0°C. This is now a fever, again, and considered a “new” fever and there is a mandatory call to the doctor. The nurse returns quite quickly and the doctor has ordered a change to a different IV antibiotic, and blood cultures. That mean 4 large tubes of blood from the PICC line and thankfully they skip the needle poke in the other arm and 2 more tubes. I keep my eyes closed and am feeling calm, thinking I’ll quickly go to sleep again. The door was closed when the nurse came in but, it was left open. I get up and close the door. A minute later the I’ve alarm goes off (quite loud beeping). “Air in the Line”, the nurses comes back and fixes it and again leaves the door open. After getting up to close it this time I’m really awake now and can’t get back to sleep until about 4:30am.

At the 6am vitals I’m still 38.0°C. More attempted sleep but that’s challenged by a bathroom call at 7am, One of the many last night. I stay up in the chair, eat breakfast, talk to Shirley,then wait for the 10am vitals. I’m now 37.5°C and I go back to bed until the bathroom calls. I think this will repeat all day long so I won’t bore you further.

About the food, the breakfast and lunch orders were perfect. I saw my first boiled egg at breakfast and the lunch Mac & Cheese was very good. ????????