Journey

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.

The CT scan & markings (aka tattoos) for the radiation treatments are scheduled for Wednesday September 16. A phone consult for more information on the treatments on September 28th and treatments tentatively starting on October 1st. Number of treatments still TBD.

We had the call with the radiologist today and received the best news possible in the current situation. The doctor indicated that radiation is a viable and effective treatment for me.

The area to be treated will be the entire area where there is some residual activity showing on the PET scan and all the residual tumor mass. The doctor categorized the area as “very, very small” and the effectiveness of the radiation should be “very good” and greatly reduce the chances of a reoccurrence.

The risks of damage to the heart & lung are “minimal” and the side effects of the radiation were termed as “much less than chemotherapy”. Possible issues are difficulty swallowing, nausea, and tiredness all which are temporary and will resolve post-therapy.

The treatment plan is typically daily, Monday to Friday for three weeks. However, “because of Covid” they are considering 5-6 days. The same overall radiation dose would be delivered in higher daily doses. This schedule is TBD and the doctor is evaluating and will let us know shortly. The next immediate step is a CT scan likely within a week. Radiation treatments will likely start in three weeks from now, so around October 5th.

Shirley and I are grateful to all of you for your support and encouragement and see this as a direct answer to prayer that this option is available to us. God is good, all the time!

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I really didn’t want to write this post, but it’s all part of the journey, so here goes.

Today’s meeting with the oncologist who managed the bone marrow transplant (aka stem cell transplant) procedure to review the results of the August 25th PET scan revealed that there is still some active lymphoma.

This result is not what we believed or hoped for and is quite an emotional disappointment that we’re coming to terms with.

The active area of concern is small and the activity is catgorized by a Standard Uptake Value (SUV) of 3.8 versus an SUV of 19.1 on the March 25th PET scan. Overall my situation is categorized by a Deauville score of 3. Basically 1 is good, 5 is bad and 3 is obviously middle of the road.

Because it’s a middle of the road Deauville score there are two basic options:

1. Do nothing and re-scan in 2-3 months to see what’s happening. The good outcome is that my immune system kills it off. The bad outcome is that it continues to grow.
2. Proceed with additional treatment. The recommended treatment is radiation. Radiation viability is yet to be confirmed but highly likely. The good outcome is that radiation kills off the remaining cancer. The bad outcome is it doesn’t work or can’t be done and we proceed to more aggressive treatment options with higher risks. 🙁

Current plan is to meet with the radiologists in the next 1-2 weeks. If they concur that radiation is an option the treatments are likely to begin within another 1-2 weeks. Treatments are estimated to be 5-10 days of daily radiation on an out patient basis.

We are continuing to believe for complete healing and so much appreciate your concern, support and prayers.

I received a call this morning from the PET scan folks, and my scan is tomorrow August 25th at 10:45 a.m. Shortly after that the oncologist’s office called and cancelled tomorrows visit since the PET scan results won’t be available that quickly and re-scheduled for September 1.

Received a call this morning to inform me that the PET scanner is broken and I won’t be getting my scan as planned for tomorrow, August 20th. 🙁

This is both frustrating and upsetting as this means that I won’t officially know the status of the cancer and the meeting on August 25th with the oncologist will only be about my immunization schedule and not a review of the planned PET scan.

There is no ETA for a fix of the PET scanner and I’m now waiting for a phone call to get the scan re-scheduled.

I had a touch base with CancerCare today and while I continue to feel well and get stronger I was disappointed by the numbers.

Blood testing was scheduled for 8:45 and for what ever reason I had to wait quite a while before I was called in. Once in the chair the blood draw only took a few minutes and then I checked in to see the doctor.

After waiting over 1 hour I checked with the desk again. I think I some how got lost in the process but was called in very shortly after I asked about what was happening. I had been expecting to see the oncologist physician assistant but my assigned nurse handled the visit. Blood pressure and a few “how are you doing” question and she’s done. She explains the blood testing results and this is the disappointing part.

These numbers are supposed to be going up! They are currently quite a bit lower than “normal” and I had expected better progress 🙁

The nurse says they can bounce up and down. Next time they better bounce “up” if they know what’s good for them!

Well, it’s been 30 days since my “escape” from the hospital post stem cell transplant procedure and things are going really well IMHO. 🙂

On Day 2 a walk around the block did me in and yesterday I did a fairly fast 30km group ride with the Rat Portage Cycling Club in Kenora, which included a long hill with 8% grade and I survived! Not last up the hill and about mid-pack of 24 riders overall on the ride. Of course I socially distanced 😉 and stayed in the back of the traditional mid-ride photo op.

I’m taking less naps and feeling much more energetic and numerous other things have improved since getting out. Still no hair but that’s OK, less work and it’s cooler in the summer anyway.

Next up is a Dr. visit for some blood work and touch base on August 7th.

Its been 20 days since hospital discharge and today was the second in person follow-up with the doctor.

I’m continuing to improve and several bodily functions are returning to a more normal status. A couple of days ago I noticed a real positive change in my energy level and went out for a 56km ride which went quite well.

Today’s visit with the doctor was for blood work and a “how are you doing?” visit. The blood testing results continue to improve in most areas which most likely accounts for my increased energy levels. Platelets dipped a bit but, hemoglobin is up which is good for energy and bike riding and I’m sure a host of other things too. Normal hemoglobin is 140 – 180 and platelets in the range of 140 – 440, so still well below the guidelines.

The white blood cells are recovering and up from the last doctor visit and from an all time low of 0 in the hospital. Still a ways to go as the “normal” range is 4.5 -11.0. Key takeaway is that as the WBC improves I’ll be more able to fight off infections, viruses etc. This could come in handy these days.

Next doctor visit is August 7th. Then it will be a PET scan on August 20th and a review of the PET scan results on August 25th.

I’m still taking it pretty easy but I do have a group ride planned for this Wednesday. I hope they take it easy on me, or I’m up to the challenge of a faster and longer ride.