Long day

I left the house before 8am today and didn’t get home until after 5:30pm. Long day!! But, a good day.

This line of treatment is 2 weeks on with 1 week off. Today was my 2nd round of chemo for this cycle and it went smoothly this morning. I’ll have my off week next week which I’m not looking forward to as that seems to be when the GI issues really hit me. That is no fun. I’m going to try a different medicine combination as I’m still looking for the magic solution.

After chemo, I had a few hours before I needed to leave for my pulmonology appointment so I decided to go to the office. It was nice to see people in person. I need to find a way to do that without getting stuck there all day as the portable oxygen concentrator isn’t the best. I start to feel light headed after a while, but I was on real oxygen at chemo and again with the pulmonologist so I knew I’d be ok for a few hours in between.

My appointment with the pulmonologist was also uneventful. He is pleased with the improvement he’s seeing on my scan, happy I’m down to 2 liters of oxygen and that I didn’t have a decline when I stepped the steroids down from 40mg to 20mg a couple weeks ago. He wants me to step down to 10mg in 2 weeks and then 5mg for four weeks to keep this wean really slow. Ugh. 5mg wasn’t part of the original plan. I guess that means I’ll keep eating, gaining weight and puffing my cheeks out.

I wanted more from that appointment, but he told me that I need to be patient. I’m still really struggling with inclines and stairs. He says the improvement I’m looking for will come. So, I decided to give him a bit of a hard time. I was nice about, but I asked if he thought I was fooling myself into thinking I can stick around for a long time after seeing my scan. He said it is realistic as I am stable. I then asked if it was realistic to climb bald mountain on Labor Day weekend which is 1 mile up. He said we’d make that the goal. 

He agreed I need to keep moving. I can’t risk a fall so that probably means malls for now. Let me know if anyone wants to shop!! It is a medical need :)

CT Scan

I went for a CT scan last Thursday evening, which was early as my tumor markers went up 8 points at my last appointment. My doctor says that isn’t significant and tumor markers are only a guideline, but he could see I was concerned so he moved my scan up.

The scan results were positive, although I wanted it to be more positive as patience is not a virtue I possess. I was hoping for a reduction in disease, but I need to be happy with stable. Stable is good.

There is improvement in my lungs which is very good. I’m also pleased to hear that there is more improvement needed because I am still very much dependent on oxygen and was feeling like I should better than I am. He showed me the scan so I could see the improvement and that there were still opacities ready for improvement. Once again…patience!! I am down to 2 liters so that is progress. He also reminded me that previously we weren’t sure if it was disease or pneumonitis causing the lung issues and now we know it’s pneumonitis so we can focus on that. 

He also confirmed that sclerotic, which was in my scan report, means hardening of the bones where there was disease. So, my bones have scar tissue which means healing, right?  A year ago I was in significant pain and taking pain medication 24/7. Today, I can’t remember the last time I took anything for pain. That’s improvement.

He also said that my bloodwork shows that my organs are functioning normally. So overall, I’m ok. Even though my tumor markers went up again by 7 points. The scan is more telling as is how I feel which is generally good.

4 Good Days

Well, I made it 4 days into 2024 until I landed in the ER on the 5th with another crazy nosebleed!!  I guess all the things I did to keep moisturized wasn’t enough so I’ll be calling an ENT on Monday. That cannot happen again. This time it was a 5.5 hour bleed that did eventually stop with huge clots that were incredibly uncomfortable. Guess when it stopped?? As we were waiting to get called back to a room in the ER. Then the rest of the time was spent trying to get me to blow out or cough out the clots. All that did was make me sore.

I did manage to convince them again that a rhino rocket wasn’t necessary. 

The clots came out this morning with a nice hot shower. So gross. But, the good news is that I didn’t start bleeding again and now I can breathe through my nose again which should make for a better night of sleep.

Let’s hope the ENT has some magic.