Category: Terminalcancer4me

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.

***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.

***Comments are fine***

Short update: had CT for abdomen and pelvis. It was to make sure the Keytruda wasn’t adding too much damage in return for (expected) tumor shrinking. It’s not. And CT was clear for any metastases from heart to pelvic bowl, so same as it was end of May.

Bloodwork was improved, but steroids will continue until it’s near normal. Lung CT is near end of August to see how well the treatment is working.

Love all around!

Checked in and waiting (8am) at the 3rd “surprise” appt out of 4. IV infusion of antibiotics to counteract possible opportunistic infections from prednisone I’m taking for Keytruda side effects. LOL

OlderBoy is making me “Magic Mineral Broth” from a recipe the Daughter came across. It has Japanese yams (unsparkly geode is what I thought) and other delightful veggies and such.

ETA: it is delicious! ❤️

Reclined on the covered balcony 15 floors up with my healing scarf and polarized sunglasses. ~bliss~

Comments will be deleted, no energy to answer

Yesterday was 1st round of curated for my genetic makeup and this particular type of undiffererntiated adenocarcinoma more commonly known as smoker’s cancer. It was far shorter time in the infusion chair. Both Samantha and I were moved off center by the rapidly changing meds and potential side effects we’d mentally prepped for. All changes were great changes and a bit disconcerting all the same.

New meds were shifting up until they entered the infusion port. It was wild. Good, but wild.

I wish I could talk sense about it, but that will be. I’ve been trusting Hillman Teams, built on cutting each research and results who’ve all kept their humanity and turns it towards you.

The port was a success. Some MCAS itching from adhesives because I believe MCAS wants to be a continual reminder that if not the med for it that has cleared up other things who knows when my brain would have found a way to get me to listen. I do not know how far into the future for other humans, but one my messages from the Ether has been that whatever they decide to name this style of mast cell fuckery that’s quickly responded to by cromolyn sodium, it is one of built-in DNA markers that can slow, stop, clear, and warn of certain types of cancer.

Life is weird y’all in the best of ways.

I don’t Google this type of cancer. I’m not anyone’s stat while I’m alive. Dr. Rhee and my lead doc Dr. Malhotra are fantastic.

I’m grateful to the lifetime of spiritual practices that taught me how to untie the hands of the Universe with my small expectations, and so much more that I’ll be happy to talk about later.

Fatigue from the pinpoint radiation is settling in. Many meds to allow this process to do its thing. Sleep hard, wake hard, eat 34000 small meals a day. That number is an exaggeration, but feels accurate.

Falling back to sleep. Take heart, friends, we’ll talk real talk soonish.

All is well, all is well, and all manner of things shall be well. ~Julian of Norwich

Again, all healing energies welcome, none are required. 🥰 💞