Windchime created by Amber Roth of Art by Amber Roth. Bones, shells, and sea glass! It is beautiful and I love it!
And from Branden Kadunce… My wee carved and painted guy complete with jumbo coffee cup and stabbity things!!
And finally, the wonderful silly winter hat, also from Amber Roth. I haven’t named it yet.
Sadie has made herself a right proper nest. Stopped at ramp 27 to have a peek at the ocean. Thought I’d get close, but nope. Lol no. Photos anyway.
Also, radiation oncology called and said everything looked really good, especially the fact that there are no new growths [in my brain]. 3 months another MRI.
The first art I’ve done since regaining the use of my arm and hand, all thanks to Dr. Abdullah the surgeon.
“The water before the storm”
2025
Had an appointment to get a revision on my port as it has not been usable even once without a very expensive med. Revision didn’t work. My “10 year” port didn’t even make 4 months. If you count the access problems it made zero days. 🎉🎉🎉
(╯°□°)╯︵ ┻━┻
****Comments will be deleted. Today is rest after infusion day. ****
Second infusion was yesterday. Protocol has changed as to opening the port with heparin now to opening the port with saline. Saline doesn’t work with this MCAS body. When I asked for Heparin they said no. I understand that because protocol has changed and they can’t reverse it. What it turned out was though they have something they call a TPA where they put a little Heparin in the port and let it sit for half an hour and then see if they can get the blood draw that they desire that means the infusion is safe.
The downside was workers who wanted to prove they could get it with saline and didn’t tell me that there was another option until we were almost an hour in. That was exactly what I was trying to avoid on this round.
We had an anti-nausea and steroid infusion first while we were waiting for the TPA to work. These had to be done in the infusion area of course. We had to go get a blood draw with the 1 phlebotomist that knows me vessels and it’s a quick easy draw. She was quite busy so I had a wait.
Then I’d requested extra blood be drawn to name my bleeding disorder so that would be in my record instead a 5 minute verbal explanation each time. My doctor (who is on the Hillman team) is a hematologist and oncologist so she was very on board with getting a name. This required 5-6 extra tubes for total of I believe 10. Donna the phlebotomist was a little worried. I wasn’t. It was fine.
Results were a go for the infusion. Bleeding disorder results in about a week.
ETA: the infusions are only
1st 30 minutes
2nd 10 minutes
3rd 1 hour
Thus my frustration with unnecessary extra time foisted on us. We left later than 3 weeks ago.
**Comments welcome**
Pinpoint radiation fatigue has faded. In coming weeks I hope my thinned out hair begins to recover. But look! I look a lot more like I used to about a year ago. 
Update (comments and questions are okay):
As my med list shortens I now take all the pill form meds once a day except 1 dissolving tab later in the morning, 1 brownie bite middle of the night. Still taking the cromolyn (they doubled the dose when I was in Nuero ICU). Still a ot more than I used to and less than it was.
When I was released from the anti-seizure med prescribed after the tumour removal I was also released from a 24/7 babysitter plus I can drive, In theory, driving will wait.
I have a lot more energy than a week ago. PT Rob even commented on it. I can shower by myself (with the shower chair because not yet running around). I made dinner for us 1st time in months.
Dinner was gluten free spaghetti with a cheese white sauce and meatballs. First time making a roux with tapioca flour. It takes awhile to thicken, but once it starts, hoo baby, it never stops. I even used whole milk instead of half-n-half, Irish sharp cheddar was a qood choice. Also a good choice would be a box grater at this house. Green herbs to season with salt and pepper.
I didn’t salt the gluten free pasta water and that was a mistake. Salt needed to added at serving.
Meatballs were not too lean ground beef so I’d have fat for the roux. A gooc amount of paprika and salt plus pepper GF ripped up bread (next time will toast and grind to smaller bits) and an egg tc bind it.
I used a counter height stool for the Iong parts.
It was delicious. 💜
This week I was released from the PT nurse telehealth checkins and released from PT. PT Rob said I was doing great, so woo! 🙂 ❤️
***Comments are fine, as are questions***
I suppose it had to happen. Big side effects presumably from the Keytruda. Mainly intense joint and muscle pain, like when you have a high fever, except I have no fever. Some shortness of breath with standing and doing for 30-45 minutes, not presumed to be an advancement of the lone lung tumor.
Heart and lungs sounded great. Bloodwork took a hit from the Keytruda also. That was temp dropped from the infusions this cycle and I’ve been prescribed a hefty amount of steroids for the week to knock this pain back thru reduction of inflammation.
I have a CT with contrast scheduled for tomorrow of the abdomen and pelvis for them to verify that my elevated liver levels or simply from the inflammation front keytruda and not from a blockage. They believe there’s no blockage because my bilirubin was fine and dandy.
One piece that I wasn’t aware of, actually there’s a shit ton of things that I’m not aware of and it’s a learn as you go experience, is that what I thought was muscle pain from PT was the beginning of side effects from the Keytruda more than the PT moves that I was doing. That is part of the learning curve for me. I attribute anything and everything to something that I already know and don’t even consider that it could be the massive amounts of Medicine poured into my body every 3 weeks.
I finally thought of the fact that maybe it was from the chemotherapy and I did a search yesterday and learned oh yeah this is very much a side effect of some chemotherapy. Keytruda is immunotherapy and that’s the one that is very hard on your organs but also very effective in fighting this illness. Well, I’m extra tired so I’m going to post this. I will answer questions as I’m able, thanks for reading. Love all around! 
August 8 ·
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Phoebe opted to stay down here with me tonight. It is rare for me to remain on the couch all night, but I have steroid brain so I am wide awake and full of words. Also still full of pain, but expecting tomorrow to be better. It’s almost time for my Brownie Bite. I also used CBD salve all over. Hoping the PPI they gave me to counteract stomach issues from the high doses of Prednisone that start tomorrow will also allow me to take Tylenol arthritis. It is an interesting ride y’all. Love all around. Look at that adorable cat.
LEAN IN TO JOY with BONEWEAVER 