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:
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.
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.
Well, it’s been a little over 9 days since I was discharged from the hospital and it’s great to be at home.
We’ve had our first post-hospital meeting with the doctor which went well with no concerns. On the good news front he indicated that swimming in the lake would be “OK”. I didn’t tell him I was going to do it anyway, but now I’ll take less flack, which is good. The usual blood work was done and things are recovering slowly. My white blood cell count and hemoglobin are still very low which accounts for the fatigue.
On the 2nd day at home a 1km walk around the block did me in. A few days later a slow and easy 9.5km bike ride was the max. A few days later a 20km ride followed by a 22km ride. Still going slow and wondering when 30km/hr will be the normal minimal pace.
I can usually manage doing some stuff in the morning and early afternoon and then spending the rest of the day recovering. Yesterday, I took the car in for servicing and walked a lot wandering around Lowes waiting for it to be completed. Then in the afternoon I managed to clean the inside of the car and then it was nap time.
All in all I’m doing very well and looking forward to heading out to the lake tomorrow to be with all the family.
While I’m very thankful for my treatment, the HSC, and the staff of D6 who took such excellent care of me for 21 days I am glad to be “free” and back at home. And, truly thankful to God Almighty for my healing.
For a couple of days I have been thinking of using the last lines from Martin Luther King Jr.’s speech. I’d never read the entire speech before today. And while I hope that civilization has made some progress in the last 57 years it’s clear that we have a long ways to go yet.
First, this is the best I’ve felt since treatments started at HSC. I still tire quite easily with any physical exertion but other that that the body is feeling very good.
The next thing that is “up” are the numbers. Results from this mornings blood work show that the white blood cell (WBC) count has taken a big jump. From 0.6 to 4.0 which is quite close to the pre-treatment value
Also, platelets (12 -> 17) and hemoglobin (71 -> 74) are starting their upward trend as well.
The other big “looking up” thing for the day is that my tentative discharge date is set for Tuesday June 30th at noon! Super pumped to be going home!
About noon today we met with my primary Stem Cell Transplant oncologist who gave us the good news and answered all our questions about going home and any restrictions etc.
Of course, first on the list was going to the lake which he approved of as long as I don’t roll around in the dirt (blastomycosis) or go bush wacking. He recommended hanging around the city for a week to ten days to get used to being out of the hospital and acclimatized to more physical activity.
Seeing friends and family, also a yes with the current COVID guidelines.
Travel, also yes in about 3 months. We’re planning a road trip to Vancouver Island in the fall, so that works out perfectly.
Biking, also yes, starting with going around the block first and working up to longer rides as my fitness allows.
Pretty exciting day for Shirley & I. Thanks to all of you for your prayers and support on the journey, especially over the last 3 weeks. Love all of you!
Another very positive day in the way I’m feeling. It’s starting to feel like the difficult part of this journey is coming to an end. Discharge day is now in sight !
Of course the day wouldn’t be complete without something new happening and today that was a transfusion of whole blood. Hemoglobin dropped from 71 yesterday to 64 today and that crossed some threshold that says “Hey! you need blood!”.
Again a no problem procedure with no negative reactions. Being a blood donor for many years it’s interesting to be on the receiving end this time. If you can, please consider donating, you will be saving a life.
Hospital food is getting harder and harder to handle. I think the treatments have made me quite sensitive to some smells and tastes. So, things that used to be sort of OK are now yuck. Thankfully, Shirley delivered another great lunch of homemade chicken noodle soup and a salmon salad sandwich which were awesome.
Great visit with Shirley in the morning and Pastor Ernest in the afternoon. Also, a good discussion with the Doctor who answered all my questions about the test results and why some of my vital signs are what they are right now. Short answer is that it’s all normal stuff to be expected at this stage in the process and the blood work numbers should start to rebound in the next couple of days. The hair will take longer. 😉