Author: Boneweaver (aka pjvj)

The wonderful thing about Pemetrexed is that it absolutely kills cancer cells. The awful thing about Pemetrexed is that it absolutely kills healthy cells. Every chemo treatment that I have leaves me a little bit more weak, and it takes a little bit longer to recover. I have no reason to believe that the chemo is not working and so I continue to believe that it is. My restaging scan is scheduled for mid January and I look forward to continued positive results. I will continue the chemo as long as my body is willing to put up with the bullshit and my blood work numbers remain stable enough for me to continue safely. I do not look far into the future because I really don’t want to miss where I am right now. One major improvement overall has been with having my port changed for a different one. Thus far it is working every time without extra meds and wait time. My whole body inflammation is less and my overall body pain has decreased, also. My supraclavicular lymph nodes don’t balloon up like mutants, either.

I have an amazing support of people around me. I have my kids who are willing to run my butt around to all my appointments and to come over and help with tasks that feel overwhelming at this point. OlderBoy came for cookie baking twice. I could not have done it without him. OlderBoy, and The Daughter are coming to finish either Thursday or Friday of this week. The holidays will be fun and delicious as they always are, and if the undercurrent of bittersweet catches our attention, we will acknowledge it and allow it to move on.

I continue to make plans even if it turns out that I have to cancel them at the last minute because I feel like hot garbage. I never want to stop making plans. I never want to feel that in the house away from people is better than out of the house with people who love me and support me. I do have people in this house who also love and support me, but the four wall syndrome happens.

One thing that the daughter and I are doing differently this week is instead of doing a medical appointment we’re going to a festival of lights and we are spending the night at the hotel. It’s going to be lovely and chill. We will drive through the outdoor lights after we’ve had a delicious dinner at one of their restaurants. We will go back to the room and chat and laugh or just fall asleep. It won’t matter what we end up doing, it will just be nice to not be doing something medical which has been our entire get-togethers since May. So yay!

I did get to go away on a retreat with my co-religionists, my initiates, who were former students in the Craft. It was a lovely cabin in the woods. It was a weekend full of ease and chatting and soul warming food. I was so happy I was able to attend. Some were unable to attend, but next year we shall be doing it again. I think that’s all for now. I will update again after the restaging scans. Have a blessed December and January and remember that you are loved.

Health update: Pain and fatigue 5 out of 10 at start of day, increased post pemetrexed. We were at our 9 week for the B12 injection. No clue how bad I’d feel without it! 😅 (laughing emoji with a drop of forehead sweat)

I’ve learned that the Keytruda and carboplatin were nice diluters for the toxicity of the pemetrexed.

Pemetrexed wipes me out fast and gifts full body pain when infused without its friends. It is the maintenance med for my style of cancer so I allow the infusion day to be what it is. Tomorrow should be a lesser version xxxfingersxxx.

I also need to start using my seasonal light. It’s very cloudy up here. I can feel the impact compared to being on Hatteras.

Death update: no change. 🙂 (smiley face emoji)

~love all around~

Here’s a checkin I haven’t been doing. Treatment day. Numbers improved enough to get it. 🎉

Health Update: Rough ride recently. The MCAS reaction to my port has only increased. I called the dept. that does the insertion of them and told them the brand and style that most likely will cause fewer issues. The reason I think that is because a local person who also has MCAS has gone through a bunch of ports, most caused issues. This particular brand has been the least triggering to MCAS. I also got a closer time slot for the replacement, moved up 5 days to the 15th.

I was supposed to have a CT with contrast today, but the contrast portion was eliminated. I’m guessing it was because I just had my chemo treatment yesterday. Had already had the ivy needle inserted of course, but that is just how this week has been going. I have a flush all through my chest, up my neck, and up to my hairline. It is very uncomfortable. Everything aches. I really cannot wait until this port is replaced and a bunch of this stuff settles back down. I do not know how long it will take for that to happen but I expect some relief within a couple of days.

I’ve dumping cromolyn on my port and taking extra doses. It helps some.

On the good news: all my bloodwork including liver numbers have improved. 🎉🎉🎉

Death update: still terminal. 🤷🏼‍♀️
Working on moving my updates to my blog so folks not on Facebook can read and I don’t have to post everywhere. I’ll post here and there.

Health update: Port replacement happened today. Here’s hoping the MCAS flare will dissipate in time. I suppose expecting that right now is unrealistic. Hmph.

Procedure went well. Was painful, should have asked for more lidocaine, bad call on my part. 🤷🏼‍♀️

Very sore at both incisions, that is different from the first time, but the first time they didn’t have to remove anything first. The part that hurt at the end were the stitches and they took longer because of the scar tissue from the first port. Look at how much I’m learning and how much I get to experience! LOL LOL

Resting today and fingers crossed for a noticeable improvement tomorrow.

Port replacement: the sensitive skin bandage was still too much for my mast cells. Yesterday, within 24 hours of having the bandage over the 2 incisions, the itching turned to pain and itching had me very disgruntled.

I couldn’t drop cromolyn on it like I had last time because this time they’d placed gauze under the clear window part of the bandage. I’m pretty sure they believed they were helping. I wish they’d been correct.

It took a long painful time to get the bandage off. The hubster ran to the drugstore for paper tape before they closed. Paper tape hurts, too, but it’s not in a place for coban and the bandage was supposed to stay on for 3 days. I had nonstick gauze pads here.

It hurt less than the night before. I removed the paper tape in the morning and added more in a different spot. Again midday. The incisions look fine.

Photo of the MCAS reaction in comment. It is not as bad as when they didn’t use a bandage for sensitive skin.

Health update.

Port wound is healing and the swollen lymph nodes from collarbone up that the other port put into an MCAS flare are slowly decreasing in size.

Things cancer has taught me:

I will never be who I was before I knew I had cancer. Like any big whatzit, this is true for everyone. I realized my efforts to “feel like myself again” were not only futile, but impossible. That person is gone.

Chemo is great for killing cancer cells. It is also great at killing every other cell.

Killing cells hurts. Everywhere. Every day. It’s also tires out every single cell.

Heat helps the pain. Except when it doesn’t.

Moving helps the pain. Except when I move too much.

Stretching helps the pain. Except when it doesn’t.

Rest helps the fatigue. Except when it doesn’t.

My skin is drier, thinner. My veins have shadows around them I’m so see through.

On and on. Resetting my mind to these new realities is a slow process.

Death update. Not much has changed. Still terminal, still doing the things to hang around for years to come.

This Sunday our community death collective named “Return to Stardust” presents our Lifting the Veil death salon 101 again. I’m able to participate this time!