Evidence

 

My navigation nurse sent me an email to “see how I’m doing”. She had been away at a conference. I’m sure she regretted asking, because I had a lot to say…

My mammaprint results should have been back after a couple of weeks. I called the office and left a message after 3 weeks had passed. I called again 2 days later (after I discovered that the EKG that they ordered in October indicated that I’ve had a heart attack at some point), but I still did not hear back. Monday, someone finally called and left a message that said  they were still waiting on the mammaprint results. She did not mention the EKG.

Tuesday, my primary care doctor ordered a repeat EKG. This time, the results were labeled as “borderline”, which means that it was technically normal, but at the edge of the normal range. It said “possible left atrial enlargement”. If true, it’s not as bad as having had a heart attack, but it’s definitely problematic. This means that I’ve had 2 questionable EKG’s, but with completely different results! I still have no idea if I actually have an underlying heart problem, or not. 

Meanwhile, I still did not hear back from the oncology office. So yeah, my navigation nurse got a lot more than she bargained for…

After my nurse got involved, they actually did some investigating, and it turns out that they DID have my mammaprint results…. Unfortunately, the determination is that I have a high risk of distal recurrence. That means that it high risk of  recurring  far away from the original source of the cancer, which would be metastatic, which would be bad. So… I have to have chemo.

I meet with the oncologist Tuesday, but from what I can tell from the mammaprint website, “high risk” of distal recurrence is around 29% after 10 years. Nobody wants to hear the words “high risk”, but it’s not, like, 90% or something-or at least I don’t think that’s the case. It’s just high enough that we need to make sure to hit it from every angle. I’m pretty sure that, if I do chemo, radiation, and hormone suppression therapy, my 5- year survival rate is over 90%? I think?? I will have more specifics after Tuesday. It is still disheartening, though,  to think I had an “early stage cancer” that was “very treatable”, and I had all of the tissue cut out of my body thinking that would reduce my risk even more, and yet I still have a high risk of it metastasizing! And I STILL have to do the 2 other types of treatments after the chemo- both with their own risks and shit tons of side effects!! It’s mind-boggling. Nothing will ever be the same.

I was correct about some of the chemo drugs being particularly dangerous for people with underlying heart issues, so they will be administering an echocardiogram (and possibly a stress test) to positively confirm or deny whether or not I have something going on with my heart.

I’m still hopeful that the 4 dose regimen is an option, vs the more aggressive (and cardio-toxic) 8 dose regimen, but we will also discuss that on Tuesday. If the difference in effectiveness is fairly small, then I will really push for the shorter version.

All I know for certain right now is that I DO have to have chemo and I WILL be having more thorough cardiovascular testing. I also know that, without cold capping. I will absolutely lose my hair. This is not a “maybe” situation. I really considered the cold capping, but since I would have to find a way to get 45 pounds of dry ice every session, and lug around a cooler, and follow a bunch of very specific and complicated rules for the duration of chemo and for several months after, I feel like it would just be too overwhelming. So, bald it is… eyebrows, eyelashes, body hair, everything. The 4 dose regimen has a higher risk of hair loss being permanent, but I guess I’ll deal with that if it happens.

Brant is having oral surgery Monday. My oncology appointment is Tuesday. Some people are coming out (also on Tuesday) to (hopefully) fix the lift. It’s broken again, and the great guy who was doing our lift repairs was killed in an accident last spring so… we’re back to questionable repair people. We’ve been trying to get them to come out for 7 weeks, so it looks like we’re back to that again… I have another appointment with the plastic surgeon in Indy Wednesday, and a virtual appointment Thursday. We  just switched to a new home health agency (same nurse!) after 11 years. We also tried to make some adjustments to my anxiety meds, and that experiment went horribly wrong. Luckily, I seem to be leveling out again- and just in time! But to say that things are overwhelming would be quite an understatement.

One last note before I finish up- Patton got his booster shot today! (See pic at the top of the page.) He did great, and continues to seem fine several hours later. Cases have been exploding, even in our county, which usually has lower numbers. Patton having his booster fully “kicked in” before he returns to school is a huge relief. And we will all have to be extremely careful once I start chemo. It will really clobber my immune system.