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As I reflect on 2023, I’ve decided it was a complete dumpster fire and needs to be left in the rearview mirror. I was fully aware of the seriousness of my diagnosis on 12/28/2022, but even so, I did not anticipate the rollercoaster of the last year. 4 lines of treatment, 3 hospitalizations, 2 ER visits, supplemental oxygen and a hip replacement. How does that happen so fast? I was literally still hiking in October 2022!

2024 is going to be a better year. I will find stable and get off the oxygen. Hopefully I can stay out of the hospital with having a doctor focused on my lungs and being diligent with what I’m supposed to be doing to take care of myself. No more hospitals!!

Overall, I’m feeling pretty good. I can’t remember if he last time I took pain medicine and think it was for the hip. It really is the breathing that is the biggest problem and that’s not even caused by the disease. Unfortunately breathing is a big deal and keeps me grounded. Thank goodness Dan watches out for my overall wellbeing and makes sure I have things to do, even if it is just a ride in a car.

NEAD stands for no evidence of active disease and is the ultimate goal. Let’s go Sassy!! There are adventures to be had. Bring on 2024!

Merry Christmas Eve

Things didn’t go exactly as planned yesterday. I was supposed to be watching the boys and their cousins ice skate at the Empire State Rink, but instead…. Epic Nosebleed!!

I’ve been experiencing a slow nosebleed for months. Literally, my nose is bleeding all the time. Well, that plus a blood thinner, oxygen and the dry air of the Adirondacks came together for an epic nosebleed that I couldn’t get under control. 

We’re talking bucket under my face and blood everywhere… poor Dan!! There was blood all over me, the walls, the sink, the floor…it was a crime scene!!

We weren’t home so off we went to find an emergency room as things weren’t slowing down after 2 hours. Luckily we found an ER where they were able to clamp my nose after using afrin and slow things down. Then they came at me with something called a rhino rocket which is like a tampon they shove up your nose and leave there for 5 days. That didn’t sound pleasant at all so I asked if we could try clamping again before taking that step. The 2nd clamp slowed things down enough that we could set the rhino rocket aside. Phew!! 

I was able to go home with strict instructions not to blow my nose or put pressure on it in any way. Do you know how hard that is?? The good news is that it has been over 24 hours and the bleeding is more residual than anything else. I hope it stays that way. I also have 1 nostril clear for breathing.

I’m re-committed to using my oxygen with humidity, even if it drowns me (although I think Dan figured out how to get it away from the machine which heats up the water and gets condensation in the line so that issue may be resolved). I’m also continuing to use the moisture medicine the pulmonologist gave me plus using a humidifier in my bedroom. So much work just to keep a nose functioning as it should!

At least it was Christmas Eve and not Christmas Day!!

I wonder what is coming next…this is such a rollercoaster. I certainly can’t say this experience is boring.

Pulmonology

I have another doctor on my team and I like him. He’s focused on my lungs…the biggest issue right now!! And, I lucked out again as I really like him. He seems to know his stuff and can explain it in a way that I can follow. Plus he didn’t disagree that maybe I can hike next summer? I may be a bit of a bully patient. But he said that walking is really good for the lungs so I was encouraged to do it.

Essentially, he told me the following:

1. I may have developed asthma and/or seasonal allergies so he’s going to test for that. He’d also like all the rug removed from the house. Dan is pleased. Ha ha! I’ve been dragging my feet on the rug for 20 years trying to wear it out so maybe this is the final straw? Oh, and I have to check to be sure my coats don’t have real down. I know my pillows and comforters are alternative down so all good there.

2. He’s taking over my steroid regimen. We’re going to stay at 40mg for 4 weeks and then drop to 20, but he wants to see me during week 2 of the drop to assess my reaction. If all is well, I’ll drop to 10mg for 4 weeks after the 4 weeks on 20 so I have another 12 weeks of steroids and moon face ahead of me. Another scan and pulmonary function test in 3 months will also help assess my status.

3. He said it can take 6 months for improvement after stopping the treatment that was negatively impacting my lungs. And I was on treatments that impacted my lungs for 10 months so it will take time. But, my good/bad cycle indicates this is an acute issue and not permanent so lots of hope there.

4. He’s putting me on a proactive inhaler to get steroids directly into my lungs. I had to text myself directions on how to use it. 

It was a lot to take in, but all good stuff.

The bad news this week is that I’ve lost the covering of hair that had been growing while on Enhertu. It makes me sad, but I’ll take it if treatment is working.

And, Tyler comes home tomorrow. We’ll have him through 12/27 and then again briefly 1/7-1/9. Busy boy!!

Good News

Dan and I went to Roswell bright and early this morning. I was dreading the visit as I’m not feeling great and was afraid it was disease progression so I was prepared to hear the worst after my CT scan last night.

But, the scan looks good. Better than good…for the first time I was told lesions are shrinking!! Woot woot!! And my tumor markers dropped another 5 points to 63. This is a great feeling. Thank you Troveldy.

So why am I feeling so fatigued with my oxygen tanking with any activity? They’re not sure, but we’re going to figure it out. I’m going back on steroids as I started feeling this way when my wean was complete. And, I’m going to see the pulmonologist on Thursday. My onc told me that my lungs are rigid like a dried sponge instead of a new sponge. That’s making it hard for my lungs to hold on to oxygen. And, he still believes this is damage done by prior treatments and not disease. I see that as more good news. 

This means I need to be a good patient, take it easy and follow doctors instructions. Mid-day naps are the best!! And, I’ll look forward to a better 2024 with more shrinkage.

Side Effects

Did you know that constipation and diarrhea are related? They seem to play off each other in a weird dance that’s keeping me uncomfortable no matter which is on deck that day. So frustrating!! 

The second infusion of the first cycle went fine, but I really need to get the GI issues under control! This is no fun and I feel like I’ve tried everything. But, I may be throwing myself from one extreme to the other so I’m going to try one thing for multiple days this next round, and less each day to see if slow and steady wins this race.

I go for a CT scan Monday night and should get those results Tuesday morning before the first infusion of my second round. I’m hoping for some insight on what is going on with my lungs as I’m still very dependent on oxygen. I really want to ditch my leash! But, my numbers tank every time I try to take a break so I’m not ready yet. The wean off the steroids ended a week ago so shouldn’t I be in better shape by now? Grr!! But, it’s not stopping me. I don’t want to miss the treats of the season…maybe that’s part of the problem?  

Today I’m going to Forest Lawn Cemetery with a friend to see ‘It was a wonderful life’ where we’ll get to hear the stories of prominent Buffalonians who are buried there. A little weird, but I like weird. I’m drawn to that cemetery. It is beautiful. And alive. They have an option to be cremated and put into a rock. That sounds like a great option to me… you have a place so you don’t end up in a closet, but don’t take up a lot of room. And, you can be moved. I wonder if you are allowed to put the rock in your landscaping at your home. I know that’s weird, but once again, I like weird. Poor Dan. You should have seen his face when I broke out my new hat this week. He called it a bold choice! Ha ha! Double Pom Poms are the best. Go and be bold! If it makes you smile, it is good, right?

So, here we go… Tuesday is a big day!