Good morning!
And a belated Happy New Year to one and all.
What strange weather here, a week of -35 and colder, a week of -5 and now heading back to -25 tomorrow, falling snow and windy right now.
So some news to share.
The information that my torso is cancer free as I told you all previously is actually not 100% accurate. Something that I was always aware of but not always in the forefront of my mind and they never bother to tell you at the time is this little bit of information. As kick-as* and wonderful at CT scans may be, and PET scans are considered to be even better, they actually sort of suck. Well perhaps in my opinion anyway. The truth of the statement is that the PET/CT scan has indeed not found any tumors in your torso. Which of course is good news. What they often forget to follow up with is the additional statement that "PET/CT scans are not capable of detecting tumors until they are 1 cm in size! How is that for a kicker!! So my torse could be just chock full of sub 1 cm tumors but we don't know. Now I mean the fact that there are not any larger than 1 cm is certainly good news, don't get me wrong, but as a patient with cancer you can't come away thinking that it hasn't spread elsewhere, just that the tumors are not large enough to be picked up by the contrast fluid you've taken. So it is hard to be 100% happy with this information but them again at least as of the last scan, any tumors were small ones if at all.
OK, so what else is going on.
Well, two things for me to consider. There are, oddly, two teams that are sort of working on my case. One in Edmonton at the Cross Clinic and one in Calgary at the Tom Baker Clinic. Here are their stories.
Wednesday there is a group meeting between the two teams about my case.
1)Tom Baker wants me to consider something that is the ultimate cool sounding treatment. It is called "Isolated Limb Infusion" or ILI. Brace yourself for this. They cut off the blood supply going to my left arm. I'm not sure what they do but they must then hook it up to a machine that keeps my blood warm and oxygenated etc. Then they give my arm a chemo that they would ordinarily not be able to give me as it would kill me. After some period of time they they reconnect my arm's blood flow to my body! Doesn't that sound wild?! They claim they've had some good success with this. They can't do this for another two weeks I believe.
2)The Cross wants me to come down for treatment on Wednesday. They are proposing that we'll try the Interluken 2 (Il2) direct tumor injections which they claim is the protocol that is replacing the ILI treatment.
Either way I continue with the PEMBRO immunotherapy injections I've been having in Grande Prairie.
I'm not sure if they can do both ILI and Il2 at the same time either.
They also want me to come 30 minutes early on Wednesday for a photo shoot, they want to document exactly what my arm looks like before we try these other one or two treatments. I'm in favour of this as it will give us some before and after images to refer to.
Now some time between the 3rd and 4th PEMBRO treatment, like when my thyroid got fried, I ended up with what I thought was a rash on my left forearm. This has progressed to about 30 - 40 red marks of various sizes and shapes. Some of these I'm sure must be tumors but hopefully not all! I'll leave that to the melanoma specialist that will be doing the Il2 injections on Wednesday. I should bring a Sharpie marker with me to identify all the ones he has elected to do and those which he feels are not tumors. I hope for few new ones.
The lymphedema in my left arm has gotten worse, that is the arm swelled about 6 years ago for some reason, due to a compromised lymphatic system. Normally it is bigger but when I do things like drive for a while it gets worse but usually goes back down. Not as of the trip I took on the 20th and right now my hand looks like a mitt! It isn't painful for anything but I wish it would go down. Not sure what this signifies if anything.
Overall I'm in a good place I think, like mentally and emotionally. I mean I was sort of at peace with the amputation proceeding and I hope that the "hope" that these one or two treatments are giving my is not misplaced. I worry about postponing things and the possibility that the cancer does spread if it hasn't already. But I have to give the "experts" due credit that they know their jobs and that this is a risk that is worth my consideration with the goal of saving my arm.
I do some silly things from time to time. I try dressing myself with my right arm, putting on a watch one handed (haven't mastered this yet) and driving with only my right arm. A pain to signal and I've discovered that I prefer to drive with my left arm when I drive with only one hand on the steering wheel. I think this comes from my manual transmission experience where I keep my right hand for shifting and generally off the steering wheel. I've also got about 10 to 12 pairs of spare running shoes and I'm not sure how to tie the laces since I like my laces tighter than most people.
But minor details to be solved with being alive still as the outcome.
I'm positive enough still that I ordered my fertilizer for the 2018 seeding season last week.
And I'm still having fun while this goes on. I reached the point where I had three leaking taps in the house and that is sort of the point at which it is work it for me to shut the water off and drain the lines to change the washers. I had to go to three different places to get them all but also made my son help me so he learns about how to do this so he doesn't have to pay a plumber. And ditto I got a non-functioning snowblower and while I thought the problem was with the float needle and seal I found that on Alibaba I could order a brand new carburetor for $22 and that came on Thursday so I had Aidan again help me with that so he could see how that is done and again not have to take the machine to a shop. I tell my son that the easiest $$ to make is the $$ you don't have to spend. Primed the carb, hit the start switch and away it went! A bit of a surge at idle and mid range but it sounds fine at full throttle. Even changed the engine oil as it was easy to do and it appeared that a lot of gas had been running into the crankcase and who wants a blown engine after this - something I'll have to monitor??
So there you have it, my life update!
I'll let you know how things go when I get back home from the Il2 treatment. I'm not sure if there will be any good news but hopefully there are no surprises either.
Cheers,
Garry
