So my friends…the PET Scan didn’t happen.
If you have read the blog last week you know that my cancer is growing again. Where? Who knows. It took off growing and acting like it was on a 100-yard dash race. It grew astronomically faster than anyone expected. It’s to the point it’s concerning.
The test that indicated the growth is called a thyroglobulin tumor marker. It’s a simple blood test they do on all thyroid cancer patients. If it’s under 2 the patient is considered to be okay…above 2 means cancer is growing. When it’s at moves higher, the cancer is considered to be growing.
I had mine treated in January 2021. At the time, the number was around 1300. It plummeted to 11. Six months later is was 19. Now, it’s over 2800. No good.
I told you in an earlier post that they scheduled me for a PET Scan that was supposed to happen today. It did not.
My insurance has to approve the PET Scan…We purposely scheduled the appointment out 10 days from the initial appointment hoping it might have time to be approved. I hadn’t heard anything so Tuesday night I messaged my daughter Kalissa and asked her to call Mayo Clinic and make sure it was approved. I would be at work and couldn’t call during business hours. She was great with that.
I told you that I got a job and am working at the vet clinic. When I got hired, I had no idea my cancer was growing again. Days after I was hired, I went to the doctor and found out it was growing. I haven’t told anyone at work yet. I will but want to know what my treatment is before I bother telling them.
One of the hardest things for me in all of this is people treating me differently because I have cancer. I don’t want to be treated like a CANCEROUS person. I want to be treated like a person, who happens to have cancer. There’s a difference. So I don’t want to say much until I know what the treatment is.
Kalissa calling for me would help me keep it quiet just a bit longer.
So…guess what? Mayo didn’t submit the request until 7 days after my appointment. 7 days. So no. The scan wasn’t approved yet.
That is the very short version of it all. While I was at work, Kalissa made three phone calls. None were happy. None were apologetic. Kalissa was so frustrated and then had to tell me.
I don’t see my phone at work except for noon time. I did see she was having trouble but was hopeful that it wouldn’t be trouble big enough to cancel my appointment. It was…well not really.
Kalissa was assured they would follow up and would call her back “later in the afternoon”. They never did so at 4:40 pm Kalissa followed up with a call and they said my appointment can’t be canceled because the schedulers in that department had already left for the day. UGH.
They did tell Kalissa that I could keep the appointment as long as I was willing to sign a waiver that I would pay the $15000 if insurance wouldn’t cover it. UGH. I wasn’t doing that because one time when we requested, they wouldn’t cover it.
So…I have ZERO news. I don’t know when it will be approved. I have a feeling it will, just don’t know when. Then I don’t know when they will have a PET scan appointment open…and on top of that, because we live 2 hours away, we have to have a follow-up doctor appointment the same day and the appointment has to be six hours apart.
In the meantime…My cancer grows.
…and that’s what I know at this point. Right now it’s Mayo Clinic that dropped the ball.
Thankfully I’ve been through this before and know better than to trust that things will just happen smoothly so I’m not terribly disappointed. It’s not worth the energy.
I am also thankful that Kalissa called and checked. I feel the worst about the bother to Kalissa as she had to change her entire work schedule so she could go with me. We had planned to go and stay overnight in Rochester because the scan was supposed to be at 6 am and we have a two-hour drive. Those plans had to be canceled. Kalissa had juggled things around to get a babysitter for when we’d be gone. Those plans had to change too. So many plans simply because my case wasn’t given the priority it needed to have.
When I left my doctor’s office she told me to get the soonest appointment. So much for trying to follow doctor’s orders.
I know many of you have been praying or sending good vibes my way. I figured you all deserved an update on the latest medical drama. UGH. Hopefully next time I’ll have better news or at least news that the scan happened.
This afternoon I got a call from my doctor’s nurse wondering why I wasn’t there for the appointment. I explained the Wednesday fiasco and how everyone was passing the buck and blaming other people. I told her we weren’t given any instructions from anyone on a follow-up. She said she would do what she could and call back.
Before she hung up I asked if the PET scan appointment could be at 8 am or after because we live 2 hours away and don’t want to pay for a hotel room. Then I reminded her that we were told that we would have to make my doctor’s appointment 6 hours after the PET scan as we were previously told would have to happen.
10 minutes later I got a call. It was the nurse. My appointment for the PET is on August 25th at 9:15 am and my appointment with the doctor will immediately follow. I told her we were told that it had to be 6 hours apart. She said, my doctor will take care of it and the results will be sent immediately. WHAT?? WOW.
This all sounds fabulous but we still don’t know for sure if insurance will approve the scan. I think they will…but who knows. I’ll know more in a week.
Again, thanks for the thoughts, prayers, and good vibes going out on behalf of me and that family. I also want to thank a couple of blog readers who sent a gas card or money. It is so appreciated!!