Hope

Things happen for a reason.  And I am grateful.

I know I’ve been quiet lately and that’s mostly because I’m exhausted. The side effects of the treatment I’ve been on for two plus years have built up and have become intolerable. But, you can’t leave a treatment behind that is working so it’s been a challenge.

I had my quarterly scans a couple of weeks ago and it showed my liver is not being compliant. That is a reason to change treatment which makes me happy. We’re doing 2 things.

I’m finally getting the space invaders I asked for last year to attack my liver. Remember when I was told you can pull the weeds you can see but there are always more? Hrmpf. I knew an attack was necessary!! So I’ll be going in Monday for liver mapping and then assuming all goes well, I’ll have radiation seeds 2 weeks later. 

They did another blood biopsy for additional information and I just got those results back today. I am also eligible for a targeted treatment called truqap that is a pill and a monthly injection after more frequent injections in the beginning. It didn’t have FDA approval on 2023 when I started my most recent treatment and all signs point to trying it now with the liver radiation. That means no more IV chemo!! Assuming the treatment is effective. And my hair could grow back which means I have hope of nose hair… I miss nose hair the most!

So no chemo Thursday and I guess I can’t be upset that I didn’t have chemo last week because of a delayed insurance approval as that might have messed this new plan up.

I have hope that my quality of life will improve and hope is a powerful thing.

Change

Change is coming and I think it is necessary. I’ve been on this treatment for over 2 years and already reduced my dose because the side effects had become toxic. Unfortunately I think the toxicity has built up again.

I’m grateful for treatment and the opportunity to live. Truly, I am. But this is awful. Aliens have taken over my insides, stirred them all up and are spitting me out. I can’t even keep water down. I tell myself that it is only a few days every 3 weeks, but that’s not working anymore. There has to be another option.

I want to eat and have energy. Maybe it is time for a week of vacation just to sleep.

My 2 Favorite Words

I had scans on 11/17/25 and the results posted the next day. My own interpretation of what I read is that nothing had changed since the last scans, but I decided to be patient and wait on the opinion of someone with a medical degree. That happened yesterday and I’m excited to still be stable as well as unremarkable!!

I’ve now been on Trodelvy for 2 full years which is excellent to be on the same line of treatment that long. It knocks me down and the stomach issues continue, but nothing I can’t handle to keep enjoying all of my minutes.

I talked to the Boston team and am increasing cellcept again tomorrow which is the drug intended to replace the steroid. If my labs are good Monday, I’ll start stepping the steroid down. So I’m going to be good…sleep well, eat well and wear my mask. Stack the deck towards healthy.

And now, to focus on a fantastic meal with family on Thursday and an even better dessert! I might need to break into the pie a day early.

IVIG

One thing that the Boston doctor found with those 13 vials of blood is that my immunoglobulins are low. So she suggested IVIG which is basically an infusion of antibodies which will help me avoid getting sick or make any sickness less severe. Unfortunately I can’t get the infusion at the same time as chemo which meant I was there last Tuesday during my off week. Bummer. And they always drip the first infusion of anything new really slow so I was there for 6 hours. I got a lot of work done, but it isn’t fun sitting in that chair that long. The next one should be a lot shorter.

I increased the dosage of the cellcept intended to replace the steroid a couple of weeks ago and so far that is going fine. I haven’t started to step down the steroid yet. Hopefully that will start soon so I can start the process of returning to myself in the mirror.

There isn’t much else to share right now. I have a virtual appointment with the Boston steam on the 12th so I’m hoping they might have another suggestion for me. 

Other than that. Things are boring. And that’s a good thing.

Boston

It has been a really long day. I was on the road from mom & dad’s at 4:35am this morning to drive to Boston to pick Dan up from the airport. He was up at the same time as me for his flight. We then proceeded to the hospital to meet with the lung specialist. All I can say is I don’t understand why someone would choose to live in a place with all that traffic.

I was so afraid we were doing this for nothing, but the doctor was really thorough and I have hope even though today was mostly history/fact gathering. Minimally, she’s got a plan for another medication that will have the same effect on my lungs as prednisone without the side effects. That would be awesome. I can’t stand how the steroids make me feel and the weight gain is awful. I don’t feel like myself. So I’m really hoping this works.

She sent me for bloodwork and they took 13 vials!! Unfortunately some of the tests she ran won’t come back for a couple weeks and during that time she’s planning on presenting my case to the team of doctors focused on ILD. Then we’ll have a virtual appointment where I hope she’ll have some new ideas. 

We then headed back home. 14 hours of travel for both of us!! Long day, but maybe the start of a new plan?

Bad Assumptions

Before reading this, please know that all is well. I’m still ‘stable and unremarkable’ so no cause for concern. But I learned some interesting stuff yesterday so I’m sharing.

I had my quarterly scans on 8/19 and the results I saw on the portal concerned me as it read like I have extensive active disease, but then ended with ‘no change since the may scans’ so how is it so bad now? I decided to stay quiet and wait until my appointment on Monday. 

Normally I speak to the doctor after a scan, but this time I met with the PA who walked in the room and said ‘ your scans were good’ in a chipper voice. I told her I didn’t think so and started asking questions. The doctor told me that often scar tissue looks the same as disease and that there was 1 active tumor they were watching in my liver. The response of the PA was that active is defined differently. They consider a tumor active if it is doing something like growing. That is not my definition of active. If it is not active, it should be dead in my world. So that was sobering. I need to be more assertive to make sure I really understand the results of my scans.

Then I handed her my ‘do not resuscitate’ form. Again, no worries… this is just to have on file. She said she agreed with my decision not to be intubated because they typically do not extubate someone in my situation. Yikes!! So intubation equals vegetable until death? No thanks. That might explain why the doctor was so concerned with my first hospitalization when my oxygen levels were so low. I didn’t understand the issue at the time. So now I’m really glad I refused intubation then and now I’ll never be intubated.

This whole situation is as much mental as it is physical. I really need to keep my head in check and not think about it. I try to fill my mind with visions of hiking and sitting on the beach. 

2nd Cataract Surgery

I finally had my 2nd cataract surgery on Friday. All went well. A month of wonky eyes was too much. At least now they are the same, although I’ve got to figure out the reader situation. I think I need glasses where there is no script on top so I can just wear them all the time. On and off all day long is annoying. No more contacts or glasses that make my eyes look small!

I also got an appointment at a hospital in Boston with a doctor who specializes in lungs. Originally the appointment wasn’t until March, but they called this week with an appointment in September. Woot woot. I need to hear from an expert that there is really nothing more that can be done to improve my breathing. I don’t have a lot of faith in my current pulmonologist. But I did with the last one and he said the same thing…I have scar tissue from previous treatments and it is there to stay.  I really don’t want to accept that as it is what impacts my quality of life the most. So I’ll push a little harder to be confident I’ve done all I can.

We decided we needed a relaxing day yesterday so Dan drove me to the finger lakes to check out a couple of wineries. What a beautiful day it was with my favorite person. Take advantage of all the minutes.