Category: misc

Health update:

I am still very chuffed, as was my doctor, with the improvement in tumor size in the primary tumor in my lung. It has reduced in size by nearly 2/3. It is the only tumor in my lung and no spread has shown on pelvic and abdominal scan or lung scan. There are two lymph nodes that are slightly enlarged. They have shrunk also,but were never a concern per docs. In a few weeks I will have an MRI of my brain to verify that the surgery, etc remains successful.

Death Reminder: I am still terminal. As are all of us. In my case though we are pretty certain short of me walking in front of a bus what it is that is going to kill me. Stage 4 lung cancer. The goals are to reduce and or eliminate the tumor in my lung so that it does not throw things at my brain. Really it’s the brain that holds the most area of concern. Medical interventions are designed to control and shrink the primary tumor to stop spread particularly to the brain. It is not unusual to have a really good results in the beginning. If you’ve been taking some immunotherapy and have awful side effects it usually means it did its job, in my case both are true.

The goal now becomes to continue the shrinking and or maintain exactly what’s going on now while enjoying the best quality of life that I can for the time left. That means continued maintenance chemo infusions every 3 weeks for a year or so minimum, evaluate, maybe a break from chemo for a bit. Two out of the three my style of cancer specific infusions have now been dropped off. The immunotherapy one because of the bad side effects means I can no longer have that one. Considering the way it wrecked me I am okay with that and exceedingly grateful for the work that it has done so far. The other one I had the last infusion of because that type of chemical therapy usually can only go for the four rounds and done. I still receive B12 anti-nausea and a steroid infusion prior to what will now be my maintenance infusion every 3 weeks.

Not going to lie here, chemo is rough rough stuff. I have never encountered this level of fuckery even with my Myriad of chronic illnesses. It is exhausting and it is debilitating and it accelerates with each infusion.

The last few weeks have been hell on my family because it has been hell on me. They have been exceedingly gracious considering how at times ungracious I have been. Chemo brain and steroid brain together are a terrible  combination for any style of relationship. I highly do not recommend LOL

And if not for chemo I wouldn’t get to enjoy the years ahead. Some of the hell should improve with. the reduction in number of meds right now. When it becomes intolerable or when this third one decides it doesn’t want to work anymore I still have many other options. All of these things I have been holding and juggling, wanting to post here. As your friend the deathworker I am also holding the knowing of the impact of medical news whether happy or sad. Waiting until I had some follow-up tests to gauge exactly how to break any news felt right. I am thrilled that I had good news to break!

I thank you all for your continued love, prayers, energy, and support. They mean so much to my heart and soul. Ever grateful I send love and gratitude back through the ether to all of you. Blessings all around.

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! 🙂 ❤️

I could not take staring at the same four walls of my house any longer. As we had to cancel our beach trip I found us a cabin in the woods of the Laurel Highlands. It is quite rustic with no Wi-Fi at all, no internet, have mobile data sporadically. I’ll check in when I can, but won’t be posting much. I didn’t want folks to wonder why I’d gone so silent.

🌳 and ♒ and resting my 🫁
Blessings all around! ❤️

Where we are staying. Beautiful. Creek in back yard. Can hear it from front screened in porch. Will try for video . Hoping to get the photos up while network is active.

Ventured out into the semi wild world with Dave. Felt like a regular person! Tried pro mode on phone canera, had no idea what I was doing. Here are your amateur barely beyond raw data photos.

Somerset County and Forbes State Park entrance.

Chose a healthy side salad in lieu of those delicious cookies in reach. Hahaha

(mixed greens on the bottom, pieces of cantaloupe, blueberries,  tomato, almonds, sprinkling of Parmesan, gluten-free croutons, and a drizzle of balsamic vinaigrette)

I have fantastic news!

My tumor is shrinking. No official measurements from radiology yet, but my doc (Dr. Malhotra) says it looks smaller and I saw it, too, on the imaging!!

My liver enzymes are back within normal range from the Keytruda damage. It was a hard slot of time recovering from that assault on my immune system, but the most recent studies show folks who have Keytruda side effects means it did what was intended and helped shrink the cancer! Now I get to do stepdown faster with the Prednisone. 🎉🎉🎉🎉

Much love to you all!

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