Category: Health

Today, we had a phone consult with the oncology nurse. The main purpose was to check in and for us to get the results of last weeks blood work.

My input to the checkup is that I’m feeling fine and still riding the bike regularly. I also reported on my weight (classified) and temperature – normal at 36.2 so no fevers etc.

Shirley was on the call to so the two ladies quickly move on to talking about cooking, Christmas, COVID and other non-me related stuff. I almost dropped off the call.

I did get a couple of questions in:

1. What are you thoughts on me getting the upcoming COVID vaccine?
   
   CancerCare currently has no guidance on this but is likely to have some information by the time I’m likely to get a shot at “the shot”, which in my best guess will be late in 2021.
   
2. When will my immune system be considered “back to normal?
   
   Sadly, 1+ years post stem cell transplant which would put it out to July 2021 at the earliest.
   

Blood testing results continue to be sort of holding steady, dropping a bit or small slow improvements. Still waiting patiently (sort of) for the big breakthrough improvement. I’ve updated the charts with what the “normal” targets are for your viewing pleasure.

The LDH numbers are good as higher numbers indicate inflammation in the body, aka “something is going wrong”.

Speaking of numbers, the journey has been a lot longer that I’d ever imagined. How long you ask? Well, here are the “highlights”.

Day	Event
0	Initial Detection – 2018/05/10
8	Biopsy
35	First meeting with the Oncologist
41	Chemotherapy starts
57	Port installed
165	Chemotherapy ends
175	PET scan post chemotherapy
179	Cancer Free
223	Port removed
663	In the ER – X-Rays, CT scan – re-occurance – 2020-03-03
669	Oncologist meeting – Round 2
680	Port Insertion (again)
690	Chemotherapy starts (outpatient at St. Boniface Hospital
697	Bone Marrow Transplant / Stem Cell Transplant Consult phone call
761	PICC line installed & HSC Admission
762	Seven consecutive days of chemotherapy start
769	Bone Marrow Transplant / Stem Cell Transplant – 2020/06/07
782	HSC discharge
838	PET Scan
845	PET Scan results – not good
875	Radiation Starts (Daily for 5 days except weekend)
881	Radiation Ends
971	Final PET Scan 2021/01/05

I guess I have too much time on my hands thanks to COVID.

Looking back it seems both long and short all at the same time. Time really does fly, Tempus Fugit. I’ve learned a lot along the way. The value of friends and family. The trust, hope and confidence in the Word of God. My secure salvation in Jesus Christ, His amazing grace and faithful promises. He was always with me in what has happened and will always with me in whatever might come.

Be safe, be well, be blessed.

Now that I’ve been bald twice, it has changed my relationship with my hair.

Getting older is so much fun! At one time I was a little concerned about thinning hair and a receding hair line. Now, I’m just thankful to have some.

After getting over the initial shock of being bald the first time, it wasn’t all that bad and certainly low maintenance.

The one thing that people generally focus on with hair loss due to chemotherapy is the hair on your head. However, it’s more that that, it’s hair everywhere! Now some of that has some surprising benefits. For example, I didn’t need to shave for months. Other hair loss on my body is a little more shall we say “weird”, and we’ll leave it at that.

Yesterday was one of those kind of mystery checkups with the oncologist. A nurse, a resident and a doctor ask you how you’re feeling. I’m feeling fine but I’d really like some concrete evidence that the cancer is gone. They can’t tell you that, at least not yet.

Basically I’m in a holding pattern until 3 months post-radiation when they will do another PET scan, some time in January 2021. I’m told that any testing sooner than this may produce incorrect results due to the residual effects of the radiation, so it’s waiting time.

Now I’m fully believing that I’m healed but who wouldn’t like a little measurable confirmation, after all that’s what testing is all about.

With the checkup comes a blood test which is slowly showing improvements. Last month there was a big dip in the white blood cell count. The doctor wasn’t worried, but I didn’t like it .

OK, here comes the technical part. The normal WBC number is 4.5-11. Good news this month is that it’s coming back up!

Other key indicators in the blood testing are holding steady or dipping a bit.

Normal HgB is 140-180 and normal Platelets are 140-440, so still a ways to go. I’d like to see some steady improvement which will come. I guess I’m just a little impatient. 🙂

LDH is supposed to be in the 120-230 range so things are looking good here.

My oncologist says “You’re doing really well”. She said that most of her patients that have had this type of cancer and gone through the treatments I have are not feeling as well as I am and are not out riding a bike or exercising the way I am at this point in their recovery. This is very encouraging. I told her that my goal is to recover all my fitness to my pre-cancer state and more. Seems like a reasonable goal to me. Ps 103:1-5

As I write this it’s snowing outside but it wasn’t that long ago we were enjoying the fall colours at the lake. A few photos for your enjoyment as we head into snow season.

Here I am, eight days after the last radiation treatment and generally feeling pretty good. Some side-effect symptoms have shown up but are quite manageable. The 1st was a couple of days ago when I noticed some discomfort while swallowing. Then yesterday it was joined with some feelings of heartburn/acid reflux from time to time. Additionally, there is an occasional sensation of “something going on” in my upper chest area. All of these things are apparently “normal” and will resolve over time. My energy is still pretty good and I’m riding the bike fairly regularly and started up my indoor training plan for both biking and weight lifting. OK, so weight lifting has just had one day so far, but hoping to keep it up. 🙂

When you have a cancer diagnosis, you tend to spend a fair amount of time thinking about it, at least I do. Not fearful, but it’s always rattling around in my brain, sometimes it’s pretty front and center and other times it’s just a deep background awareness, but generally lurking somewhere.

You get the diagnosis or doctor’s report and you think about that. You wait to meet with the oncologist, and you think about that. You hear about the treatment plan, and you think about that. You wait for treatment to start, and you think about that. You’re in treatment, and you think about that. But then treatment is over. There is a pause. There is nothing pending, nothing pressing and it’s easier not to think about “it” for a while. This is where I am now. There are some oncologist meetings coming up and a likely PET scan in mid-December, but there is a lull, a time where it’s easier to not let “it” occupy so much of my thoughts and emotional energy, a resting. Resting feels good. Time for some normal life, well as normal as it can be with that “other thing” going on.

And we’re done! Yahoo!

I’m feeling quite good with no side effects at this time. In fact, I celebrated with a 76km bike ride with my Wednesday cycling group after my treatment.

FROG is what we’ve named our group, Fast Retired Old Guys. I’m the youngster and the other two guys are 71 & 75!

To be fair the doctors and staff said that side effects could show up and “may increase to a maximum within 7-10 days following completion of treatment”. I’m telling them to not bother showing up at all 🙂

On another related topic I’ve received some additional blood work results. We were surprised in the decrease in WBC (not good, 4.7 – 11 is the normal range for the white cell count) but, in consultation with the oncologist they are “not worried” and results “can fluctuate”. I’m all for steady positive progress, but this is what it is.

At least these guys are holding steady or going in the right direction.

I probably won’t post much on the blog for a couple of weeks until after a follow-up visit (date TBD) with one of the oncologists. Thanks for reading and Happy Thanksgiving. We certainly have much to be thankful for!

Today was the start of radiation therapy, the first of a five day schedule. I’m not sure if I’ll post something every day as the treatments are all identical, but we’ll see what comes to mind over the next few days.

In and out in under 30 minutes! These guys run a tight ship and they were very friendly and nice explaining everything that would take place in advance. Things like when the machine and/or table would move, what sounds it would make and the fact that I’d feel absolutely nothing while it was happening.

I arrive and get changed into the standard hospital attire for getting x-rays, CT scans, MRIs, PET scans etc. all of which I’ve had several of over the last 2 years. A few minutes in the waiting room and then they usher me into the therapy room and introduce me to the team, and the machine.

The lights were up for this photo but when I arrive it’s dim mood lighting, a fairly relaxing vibe. You hop up on the table, which is draped with sheets ( not naked like in the photo ) and position your arms out of the way over your head in the purple-looking supports. They use a laser alignment system to line me up with the dot markings previously applied to the sides of my chest. Then they all leave the room. Hmmmmm….

The first thing that happens is a couple of arms come out of the machine and take an x-ray. The operators then use this to make some further refinements to my positioning by remotely adjusting the table. Then the process starts and the head of the machine comes closer and rotates around me. In about 5 minutes after entering the treatment room it’s all over. A little hard to describe but to get an idea, check out this video that one of the staff recommended when I was taking my photo.

My Radiation Treatment from Thomas Ashley on Vimeo.

The person in the video is receiving radiation to his head whereas mine is to the chest and no, I didn’t have to wear any sort of protective device on my chest.

As with all medical procedures they tell you about all the things that can happen, the “side-effects”. In general they are supposed to be quite minimal compared to chemotherapy. Things like skin irritation, think fairly significant sunburn. Coughing from irritating the lung because the tumor is close to the lung, difficulty swallowing again from irritating the esophagus, as its close by too. The radiation beam is focused and targeting the tumor but, there is some spill over. For the super techie my treatment is Intensity Modulated Radiation Therapy (IMRT).

Some fairly intense prayer while the process is taking place as so much is out of my control, actually everything about the treatment beyond saying “yes” or “no” is outside my control but God has got this, guiding the staff and the machine to do it’s job without damaging the rest of me. Thanks for all the messages of encouragement, prayer and support as we go through this last part of the journey.

Today was the CT scan to gather information for the radiation treatments. It went quite smoothly and was similar to previous CT scans with a couple of exceptions.

The first was that I won’t get a report of the CT scan findings. The information is given to the radiologist to plan the treatment. The simple explanation is that he looks at all the CT slices and indicates which areas to target. This input is merged with the scan data and will drive the radiation device to focus radiation to the areas to be treated, moving me on the table and the head of the radiation device to focus the beam to the correct spots. Computer “magic”!

The second exception was the “Markings”. I was expecting this and they are permanent tattoos used for aligning me to the machine. I thought there would be several + marks on my chest. However, what actually happened was two small dots, one on each side of my torso and unless you’re looking closely, you might miss them all together. I’m good with this.

Schedule is confirmed and starts on October 1st for 5 treatments so I’ll be all done on Wednesday October 7th! More awesome news!

For you techies the radiation treatment is external beam radiation. External beam radiation treatment is given with machines called linear accelerators to deliver precise and focused high-energy x-rays.  There are two options here and we’ll find out on Sept 28th which one will be used. Intensity Modulated Radiation Therapy (IMRT) or Stereotactic Body Radiation Therapy (SBRT), catchy names eh? Check the photos and descriptions here.