So, the trip. The drive down was great, excellent weather. The walk on Wednesday morning was one of the nicer ones I've had, at least this year. Calm, not too cold or windy and there were a lot of people out for exercise which always makes being out more enjoyable - misery loves company, right?! I hate the fasting for 6 hours part beforehand, not even any gum or anything. My mouth tends to get dry and sort of always reminds me of what the bottom of a bird cage must taste like. And while I can drink water you can only pack so much plus who wants to be looking for bathrooms or bushes all the time.
The PET scan went OK, I told the techs that they might be wise to put on sunglasses when they do my left arm. They found that funny. It seems like you are forever in there but they tellme it is only 15 minutes or so. Too much time alone in a dark place with my eyes closed and my thoughts going crazy.
Afterward to see my primary doctor. It doesn't mean much to me but we looked at the scans together and also the previous ones too for some perspective. Yeah, my arm goes sort of glow, especially that mother tumor close to the top of my shoulder that sort of looks like half a boiled egg stuck on there. But I was surprised when he used the words "significant clinical improvement". Wow, really I thought?? I sure don't see it that way but then again I'm only the patient. So we decided to carry on with another four PEMBRO treatments in Grande Prairie and then re PET scan in 3 months. Doctor #2 comes in (I had three doctors and three nurses in the room with me at one point, must be an interesting case?) and decides he wants to stop the imiquimod which in my opinion was the one that was doing the best. Now it was also the one that was ulcerating and blistering up my skin like crazy but there are scars from where there are no longer any tumors. But again what do I know.
So off to do some shopping, drive to Calgary and to bed, just exhausted.
The mental side of this sometimes catches up with me and just grinds me right down.
I sleep in! Like for 40 minutes. I can't remember how many years or decades back I'd have to go for when this last happened. Normally I am better than an atomic clock.
So out for about 50 minutes of walking and to the hospital for the next doctor. To start with he is on time and I tease him about how rare this is in my experience. So this is the doctor that did that Isolated Limb Infusion that I had on April 20th. One of the least emotional people I've ever met in my life, hard to get him to smile at all. Anyway, his adjective upon seeing my arm was that he was "encouraged by what" he saw. Again, really? What are they seeing that I am not? Of course I see it on a daily basis and maybe if you see the arm every 6 weeks the differences are more noticable??
So then the fun starts. Do NOT stop the imiquimod - "lets keep hitting it with everything we have". One problem, no prescription for the imiquimod from doctor#2!! Thankfully I still have two pumps left from when I had stopped during the ILI treatment. So I hope to talk to my primary, who will have talked to the doctor in Calgary and they can form a common opinion for me to move forward through. Primary doctor is suppose to call me this week.
Interestingly too, Calgary doctor wants me to have surgery to remove the mother tumor at the top of my shoulder. Not that in the grand scheme of things we'll kill it but just for quality of life and comfort for a period of time before it possibly grows back again. Maybe in six weeks in Edmonton. I'm in favor of this big time as it is a royal pain in my backside and the one that in the morning from just the slightest breeze starts to gush blood like Leduc #1!! Just not worth as much...................
So over all.............
Well I went into the trip with ZERO expectations, that they would say that the ILI ha not worked, things did not look any better, get ready to die.
I came back hope, not with hope necessarily, but perhaps more feeling hopeful?? Like a few steps below having actual hope. But to be sure feeling more optimistic about things. bring on more PEMBRO (can't hurt), lets keep imiquimoding and get that surgery scheduled.
Sorry to run but off for exercise but next post should be Davenport................
Cheers,
Garry
cooling air on the bum
