I have written about this many times and yet somehow it is kinda a surprise each time I go through it. Maybe I'm old and my memory is weak, maybe I'm trying hard to keep the thought at bay and therefor really not paying attention to details, or maybe there are so many elements that it's tough to keep track of them all.
Regardless, I think I am going to do myself a service and write something every day that I am on the cycle so I can be mindful of what is potentially coming my way. And hopefully, for those of you going through it I can give you a sense of what a 21 day immunotherapy journey may look like.
With my usual trepidation I took the three little pills today. And as usual I thought of Avnish when I took the pills as he gave me the guidance that I should address the pills and thank them for the work they were doing. Funny enough I felt a bit guilty about the trepidation. I had such a great break whilst at the cottage that I really wasn't ready to start up again. That being said, I am determined to do my best to get good results and am happy to be working hard again.
The indicators that really become most prevalent and affect me the most are things like my sore mouth, diarrhea, constipation, acid reflux, headaches, joint pain and sensitive skin. I am going to see if I can pinpoint where these physical changes may be going.
And as usual, when I start there are few real ailments. My tongue feels smooth, my mouth is pretty clear, my knees are a bit sore and my skin seems to be fairly good. All in all, feeling pretty darn awesome so nothing to report.
Went out last night, and since I was feeling really good I may have overdone it a bit. Ha, who's kidding who. I went out hard. After the first beer tasting good I went for a few more, then some wine and next thing you know I'm actually intoxicated. That hasn't happened in probably 6 months. So you can imagine my body is sore, but not for the usual reasons. I think the headache is one that is self induced.
Regardless I got out and played nine holes of golf, walked the course and felt just fine in spite of the hangover. Rest of the body was fine.
Had a great sleep, went to bed around 11pm, got up around 9:30 am. This holiday stuff is pretty much perfect for taking care of the body and soul. It's overcast and I'm looking forward to a chill day, maybe read a book, maybe play 9 holes with Jack. Not really sure, and not really stressed to do anything as I am in that sweet spot of minimal amount of toxins in my system. It usually takes about three days of being back on before I notice anything. And today I can sense a bit of a tingle on the back right part of my tongue.
So the diarrhea decided late night day three would be the right time to show up, was up a few times last night as a result. To be honest, and maybe a bit gross, I kinda don’t mind the stinky fella. Feels like I’m making progress in cleaning out the system…and it’s frankly way better than his friend constipation. He’s a real pain.
I have tons of energy still and am aware that the toxins are just starting to build up so it will be a bit before I start getting laggy. Yup, laggy, that’s my word for how I usually feel when deep into the session. The feeling your computer has when it’s doing too much and kinda chunking through the work.
Ok, I had a tougher day today because of my belly. Seems the skoots (can’t call itdiarrhea anymore, too medical and kinda rude) were with me all day and I’ve changed my thoughts about not minding it…my butt hurts now. Oh, and my belly continues to be my weak spot. It was off all day, and probably didn’t help that I had a chai latte today. I also tried to see what would happen if I had my pills first thing in the morning. That may also be a bad idea so I am going to go back to my routine of breakfast, wait two hours, pill then lunch.
Biggest change today was that I had what I call ‘nervous belly’. I liken it to being stressed or feeling anxious about something and you get that nervousness in your stomach.
Skoots continue, but not as bad. Arse is sore and needs TLC as it feels like acid burn on insides of butt cheeks. Starting to burp quite often. Sorry if it seems rude.
Comfortable with controlled farts (meaning no walking or lack of focus). Skoots slowing down quite a bit today. Probably helps out with the sore butt.
Skin is a bit more sensitive. Chopped firewood today but was smart enough to wear two gloves and hands are fine. But had a bath and it gave me the warning signs of sore skin so tomorrow may tell me more.
Metallic taste starting in the mouth. Can't bend over otherwise I feel quite a bit of burn in my throat/esophagus. Starting to get that pressure behind the eyes a bit. Getting a bit more winded or tired as I complete tasks. Stomach always rumbly, heading out to a movie as our family golf game was rained out. Hope my belly doesn’t disturb others.
Certainly better than days 4 and 5. No real progress to report as of noon. Will get back to you later if anything changes.
Later: Nope, no changes, just a bit more tired
Days 8 – 10
Haven’t seen a lot of change. Skoots are happening less, but stomach is becoming more bloated. Seems like a tradeoff. Mouth is much more sensitive throughout, no sores yet but a general sensitivity that is noticed mostly when I eat or brush my teeth. Certainly more tired these days.
Seems my joints have really taken to the drugs. The right knee is extremely sore right now and the right forearm really hates picking things up right now. The left pinky is fat and swollen and needs to be massaged in order to bend. Tongue is certainly feeling worse today and a very small sore has opened up on the left side. Skoots are threatening to come back, but so far nothing major. Took some Tylenol, seems I have a headache.
In a cruel twist of bowels it seems I have made the switch from diarrhea to constipation. Or in my preferred tone, from the skoots to shitting cannonballs. Ended up staying in bed most of the day. Pushed it a bit hard by playing 18 holes of golf yesterday. My joints are really sore today. Right arm, right knee and hip flexors are very painful and as a result it is tough to keep moving.
Brain started feeling full today, and by that I mean towards the end of the session I start feeling like I’m kinda brain dead. It’s almost as if my senses are dulled and I find myself staring blankly at things. Frequency feels off, almost as if a buzzing going on but without the buzzing (yup, hard to explain)
More of the same. The joints seems to be the biggest focus of attention though. Mouth getting more sore but nothing major in any way. Slow moving in the mind still. Have a headache but not terrible, and mind is even more dull today. Decided the best idea was to go rollerblading – the movement is awesome vs sitting still for too long.
Dang, another tough day, didn’t expect this. Really sore knee today, tough to walk if I stop moving for too long. Secret is to keep moving. Last day on the pills, seems like I am doing really well with the sore mouth and skin. Crossing fingers this is the case but I find that the three days following the session are usually the worst as toxicity is at peak.
Aha, woke up to a few more sores in the mouth today. Pouring rain outside still, a good day to read a book and have an extra nap. Brain even more dull.
Rain stopped, but not the increase in the sore mouth, the joint pain and the dull mind. Took Amanda across the lake but waves were so high and the wind so powerful we got stuck on the other side of the lake for a couple of hours. Turns out there was a Tornado nearby. The danger, adventure and adrenaline were an awesome reminder that I need more adventure and distraction at this phase.
Mind is much clearer, mouth is worse than yesterday slightly. No change in knee pain. Following the reminder from yesterday I chopped a bunch of logs, took a boat ride and am playing 9 holes of golf today. Plan is to be done with this past session by tomorrow.
Flying back to Calgary today. Feeling much better with respect to most things. Still bunged up and the knee is still sore for sure but the brain seems to be coming back nicely. Sadly the mouth has gotten worse. I now have little dots on the end of my tongue that are very sensitive, the inside of bottom gum is quite raw. But all manageable cause much of the other symptoms are slowly abating.
Not so bunged up any more.Got a big white spot on my frenulum (had to google it, it’s that tongue string thing). This makes it very hard to push my tongue forward and makes me jump if I touch it with a toothbrush. This is the phase where my teeth don’t get brushed as well. Got Cat Scan today, gave blood at the lab. I have marks on both arms and feel like a heroine addict with all these bruised pin holes in my arms.
Heading out to see the Oncologist in half an hour. Had a hard time sleeping last night so as a result a few of the sensitivities are more prevalent, especially the bottoms of my feet are very sensitive. Going to sit a bit more today.
Was going to do a day 21 to round out the cycle, but figure going to hear my results will alter a few things going forward. Not going to lie, feeling a bit nervous this time, not sure why but harder to be positive and I cannot figure out why. Let’s hope it’s all in my tired head.