Thankfully, I haven’t had much to report health-wise. I’m continuing to feel well, and now only use oxygen while flying. I did have a major skirmish with insurance because I noticed that the oxygen supply company said I owed over $550 in unpaid bills, instead of the usual $16/month. After hours of sleuthing and contacting PSU’s Highmark concierge, I learned that the oxygen company somehow neglected to submit the in-network renewal paperwork, so I was being charged out-of-network prices for 5 months. Earlier this month, I spent nearly an hour on the phone filing an appeal. I learned this week that it was approved…but I still wasted probably 3-4 hours of time and a lot of mental energy because of someone else's incompetence.
I had my
pulmonary function test today, the first since May 2024. One indicator
increased, another decreased slightly, and the third decreased from 86% to 75%
(% of expected value for women my age). (see below) My pulmonologist thinks
this may be a function of the test, not my lungs, since I’ve had no shortness
of breath, coughing, or other symptoms, and he said my lungs sound great. So, I
have to do another PFT in 6 weeks. Not gonna lie, this is freaking me out a bit,
especially since I don’t have a CT scan and oncology appointment until the end
of March.
The median time
to resistance for Tagrisso is 19 months. Resistance is when cancer cells become
resistant to the medication. At that point you have to go to plan B: another
medication (targeted therapy for the new genetic mutation, immunotherapy, etc.), chemo, and/or radiation. Coincidentally, today marks
2 years, 7 months (31 months) on Tagrisso – 1 year past the median. I’m profoundly
grateful for this miraculous, life-saving drug. At the same time, the thought
of resistance is always lurking.
Leland and Lily
gave me a subscription to People magazine for Christmas (don’t judge!). A quote
in a story about a young woman with cancer resonated with me. “You think when
you have cancer, you’re going to wake up every day and think, ‘Oh, I have
cancer.’ At some point you wake up, and you just live. You don’t even think
about it.” I can attest that this is true.
Pulmonary function
test results
FEV1 (forced
expiratory volume) measures the air you exhale in 1 second.
Jan. 2025: 105%
May 2024: 98%
(34% improvement since 10/22)
Nov. 2023: 95%
May 2023: 91%
Oct. 2022: 73%
TLC (total lung
capacity) is the total volume of air in the lungs after inhaling as much as
possible.
Jan. 2025: 93%
May 2024: 102%
!! (48% improvement since 6/22)
Nov. 2023: 95%
May 2023: 83%
Oct. 2022: 72%
Jun. 2022: 69%
DLCO (diffusing
capacity of lung for carbon monoxide, aka diffusion) is the extent to which
oxygen passes from the lungs into the blood. It indicates the extent of lung
damage.
Jan. 2025: 75%
May 2024: 86%
Nov. 2023: 82%
May 2023: 68%
Oct. 2022: 49%
Jun. 2022: 41%
Enjoy those magazines! I am amazed by you everyday ! Keep rocking it
ReplyDeleteThank you!
DeleteThanks for keeping us updated Esther. Having that lurker sucks! Believing that the medicine will continue working the same way. You are amazing!
ReplyDeleteThanks, Henson. Hoping for normal results again for the next test.
Delete