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.
For those of you who have not seen me for a while, which is most of you thanks to Covid, my hair is returning. And like the first time it’s a little different than normal. It’s a little on the curly side.
After a haircut or two the curly hair will revert to my previously straight hair. In the meantime I’m getting called some interesting names like “lambykins”.
I’m feeling well and there won’t be any scans or testing until January 2021 so posts may be sporadic and eclectic for a while. In the mean time …
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.
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.
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:
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.