Journey

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.

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

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! 😂

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.

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.

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.

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. ⭐️⭐️⭐️⭐️

No big theme for today so it will just be some random thoughts and updates.

I’m feeling pretty good and in talking to Shirley this morning she says I’m “sounding like your old self”, first time since last Wednesday. BP is starting to look more normal, no dizziness when standing and no fever. The doctor says I’m a typical, doing well Day 5 CAR-T patient. Also, the ICU team has stopped visiting. I take that as a good sign.

I’ve had some emails with my former roommate who was discharged last Saturday and he sent me a link to some nice photos of my former room, and the ward. You can see them here.

Ok, lets talk food. First of all I’ve got to give Princess Margaret props for their delivery. Cold stuff is cold, hot stuff is hot, really hot. For example, soup is about as hot as it is when I take it off the stove at home. I attribute this to their tray and cart system. The tray clearly has two sides with what might be a thermal break in the middle of the tray. When you touch the tray on one side its hot and the other side is stone cold. I’m assuming the cart has a battery heating system for the hot side. Good job. 👍

Accuracy? I’m not so sure. They have a sheet where you can request what you will have for the next day. This morning my breakfast arrived and the nurse says, “It looks a little light would you like me to get a milk for your cereal and a yogurt? (From the ward’s patient pantry next to my room). Ah, yes please. A bit later I mention to the nurse there was no coffee. She immediately offers to run down to the main floor Tim’s for me, such a sweetheart. I thank her and say I’ll be fine and lay down for a quick nap. When I wake up, my daily meds are on the tray and a Tim’s coffee with cream & sugar!

I’m passing all my 4x daily cognitive test and I’m pretty sure I‘m circling clearly the stuff I want but now I’m starting to be extra careful. I always request salt & pepper for every meal, didn’t show up all day today. I’ve asked for the boiled egg when it’s been on the menu. Have not seen one yet.

On the other hand I’ve learned you can “adjust” the menu choices. Chocolate milk is never on the menu. I write it in and it’s always shown up. I may start to push the envelope a bit. 😜

The real night view is quite spectacular compared to the above photo. I’ll see about producing something better.

Not quite the Ritz but I’m happy to be here.

Today is visitor day and Shirley will be arriving around 10:30am with many treats! New clothes, home-made food from the cousins, Thai takeout for dinner and of course her lovely self. 😍

At the 6am vitals check I ask the nurse if she’d get me some towels as I’d like to have a shower. Her response was “Sure, we’ll get a nurse to help you with that a little later this morning”. There may come a day in my life when that will happen. This is not that day!

In fairness they are still a little excited about yesterdays major dizziness / flopping on the bed episode, ancient history. ” In hospital lingo, fainting:”- Added by editor:)

Around 7am I’m in the bathroom, feeling pretty good and I notice some towels on a chair. I think I’ll start with washing my hair in the sink and see how that goes. No problem! The shower stall is right there, complete with a special chair that of course allows you to sit and still wash you “private” parts. 😜 The things you take for granted you so appreciate when you haven’t been able to, for even a short while! I enjoyed letting the hot water pour over me for quite a long time, I didn’t want to get out. But of course I did, with no dizziness, had a shave, got dressed and was totally presentable when my sweetheart arrived.

About that “special chair” in the shower. As I’m sitting there enjoying the nice hot water I suddenly remember the torture scene in the James Bond 2006 Casino Royale. My chair is sort of like that, except I’m not being tortured.

Daniel Craig is the best Bond ever, I’ll be sad to see him go. Can’t wait to see “No Time to Die” if they ever let it out of the can. Release date has been pushed back again until October 8, 2021.

Shortly after Shirley arrives and unpacks all the treats and show me all my new clothes, the nurse informs us that it’s moving day and I’m getting a new room! I was in a two bed room and they needed the space for two people which wasn’t going to happen because I am in isolation because of my cold. So Shirley flips all my stuff onto the bed, and they wheel the bed, the night table loaded with other stuff and my monitoring machine to a private single room with a south west view of downtown Toronto and Lake Ontario. And the internet is faster. The wi-if access point is right in the middle of my room. I’ve seen up to 45Mbps which I think is pretty good for a hospital.

Sometimes it pays to have a little cold.

I know you’ve been waiting for it. Not enough detailed medical info right? This is for you! This morning the Doctor dropped in and said because of the length of time I’ve had a fever (38°C and over, as high as 103F for those who wonder what that is) and probably some other things, my inflammatory markers in my blood work are getting to be an “issue”. As a result she says I’ll be getting Tocilizumab, again a standard thing to deal with the CRS from the CAR-T. The doctor also casually mentions that a single dose is $2,000 which is no big deal at Princess Margaret. Cancer drugs are expensive. Thanks to the marvels of these drugs, a few hours later my temperature is 37.4°C, no more fever.

Interestingly, it’s also used to treat COVID!

So at someone’s instinct (whose name starts with an S and ends with with a Y :), I happened to mention to the doctor yesterday that I had a bit of a cough and runny nose first thing in the morning. He is not concerned but commented that “protocols” would likely kick in. Oh yeah!

First up, another COVID swab, this one deeper than usual if that’s possible. Then I’m on room isolation and not allowed to cross the green curtain (bathroom included). People coming in now need to gown, mask, face shield, glove, pretty much the maximum protection.

Fatigue continues and my temperature is up & down like a rocket ship, mainly up, but a few drops here and there. It’s been as high as 39.3 for brief time.

The new excitement for today is extreme dizziness. During the 8am vitals my lying BP was quite low, so they wanted to do a standing BP. A few seconds in I had to sit down and then I involuntarily laid down on the bed. I’m getting some additional IV fluid, but apparently too much IV fluid is not good for the CAR-T cells. Can you say “more close monitoring”?

On the positive side at about 11am I’m feeling pretty good, sitting up in bed and perhaps I’ll move to the chair for a while for a little excitement. My roommate was just discharged and I’m making a play for the window bed, very exciting.

Oh, yeah I with all the testing about the cough, I have a Rhino Virus (aka common cold). I hardly notice it, but these days it’s keeping me on room isolation. 😕

Late breaking news! They won’t move my bed to the window but because of my ” special status” (I have a cold) the room has been designated as private and it’s all mine!

You’d have to be of a certain vintage to get this reference to the 1965 TV show Lost In Space. I really liked it! Then there was a 2018 re-boot which I also liked but after 2 seasons it seems to have died.

38.1

When your temperature hits 38 they get moderately excited. And at 0:29am that’s what happened.

After a phone consult with the doctor they feel this is one of the CAR-T side effects, Cytokine Release Syndrome (CRS). But, they are not totally sure as it may be an infection. To rule this out they draw several bottle of blood. Two from each of the PICC line lumens and two from a poke in the other arm. Sadly, blood cultures for this take 24-72hours so it’s all likely to be over by the time the results are back.

My temperature came down shortly after but I’m still running in the 37.5-37.9 range. Also, still very tired. I think another day of laying around is likely.

As another little tid bit after all this settled down, the fire alarm went off, “Code Red 15A”, I’m on 15B. That seems a little close. The nurse says some construction work triggered an electrical fire and it was contained rapidly. Other than that, a pretty uneventful night.

Thankful, nothing significant to report today. I slept well last night and we were up at 5m for vital stats, blood work etc. I’m running a bit of a temperature of 37.4 – 37.9 over the last few hours. Nobody is too excited about that but is it goes over 38 for very long there will be some action.

Also, I’m very tired as I’ve been sleeping most of the morning. Cleaning up my room and getting dressed for the day did me in. Quiet times ahead I think.