If you’ve been following along with my latest cancer saga you know that in early August I was told that my thyroid cancer was back and raging. I’ve been through several appointments and tests to be told I have a 3 x 2.6 x 2.1 cm lesion on the L5 vertebrae in my back. So, the cancer has moved from my thyroid to my lungs and now to my spine.
Before I get into the latest cancer news, I want to thank blog readers and friends for the cards that have been coming in the mail to me…
I very much appreciate the cheery notes and goodies you’ve been sending. Some people have been sneaky and have sent a card with no return address or have put my address as the return so I can’t write a thank you. Others I was able to write a thank you too. I sincerely appreciate the thoughtfulness of everyone.
I was told the next thing for me was thermo oblation. I had an appointment set up for Friday and on Wednesday I was called and told my insurance hadn’t approved the appointment. UGH. Not all this again. Seriously, everything has been a fight. I just ignored it all and hoped it would go through by Friday’s appointment.
So Thursday I got a call from the Mayo Clinic in Rochester where I am doctoring. I figured it was another call about insurance so picked up the phone when the gal said, “Has your doctor’s office called you yet?” I said no. She said, -the doctor from thermo oblation looked at your case and he doesn’t think you are a candidate for thermo oblation. Your doctor’s office will call you and talk with you. In the meantime, all of your appointments have been canceled for tomorrow.
Wait, what? This isn’t about insurance.
At that point, I tried to stop her as I was sure she was ready to hang up. I knew my brain was about two sentences behind where she was. I wasn’t ready for her to hang up. I seriously was still processing what she said.
I confirmed what I thought she said and I was right. No appointments for Friday. What in the heck am I supposed to do? In eight months the cancer went from non-existent to a lesion the size of 3 x 2.6 x 2.1 cm by August. It’s still growing as we wait for all these appointments. Vertebrae aren’t that large. Something has to be done!
So I put a message out to the family Messenger group and told the kids. This rollercoaster ride is fine for me. I can handle it but I just HATE putting the kids through it. The rollercoaster isn’t fun.
My daughter Kalissa was upset and asked if I minded if she called my doctor’s office. I said that was fine. She did and WHAT?? My doctor knew nothing about this. There was nothing in my file yet. WHAT?? At this point, I was sure I just dreamed the whole phone call. How could my doctor not know? How could nothing be in my file?
A more frustrated Kalissa called back to thermo oblation and happened to get the same nurse. She continued to say she was only a nurse but Kalissa said we at least need to know what I can lift-how careful do I have to be-can I go to work?
The nurse said I should do nothing that makes my back hurt. I’ll likely be sent to external beam radiation (traditional radiation)-down the road, I might have to go back to thermo radiation and have my back cemented. I quite possibly would end up with a back brace. She again assured her that my doctor’s office would be getting back to me.
Well, that was something more but only a tiny nugget. Man, I just need an appointment with my doctor. I hate that I feel like this cancer is eating me and no one seems to care.
Later in the afternoon yesterday the landline phone rang. It rarely rings. Rarely. When it does it’s typically a telemarketer. I decided to answer it anyway. It was Mayo Clinic. What? Why did they call this phone? I figured it was from someone in their fundraising department. No one calls about appointments on my landline. It turns out it was my doctor. She’ll be seeing me at 10:15 this morning. Whew. Well, that’s something.
So… I was up Friday morning trying to get a few things done before leaving. I had a couple of checks that were late on getting cashed. The bank opened at 8 am so thought I would stop at the bank on my way out of town. Kalissa, my daughter had arrived and she was coming with to the appointment. I was just telling her I needed to stop at the bank when the phone rang. It was Mayo Clinic. Could I possibly come to the appointment ASAP? Yes, but even if I did, it would still be 2 hours to get there if parking was good. So we left my bank stuff and headed to Rochester.
Well…we hurried to get to the moved-up appointment. Our original appointment was at 10:15 am. We got there and checked it at 9:55 am. We waited and waited and waited. I think she came into our room at 10:50 am. So much for needing to arrive early.
So how did the appointment go?? I’m not sure.
The lesion isn’t as big as we initially thought. It is in a place where the thermo oblation might affect my vertebrae. It is also encroaching on my epidural space so that’s why I’ll be going to external beam radiation. She’s hopeful this will do the trick but wants to do more MRIs of my spine to ensure there isn’t more cancer. It turns out that the lesion on L5 actually showed up on my CT scan but was missed.
She continually said that this is a setback but not an end-of-life situation. She said this treatment can definitely buy time. For some people they get a couple of years…others get a lifetime.
As far as lifting and moving I got the answer that everyone has been giving me that I absolutely HATE. Use your back. You can bend and lift but if it hurts, don’t do it. Life would be so much easier if they gave me a 10-pound limit and I just knew that. I’m not real good about listening to my body.
As we were leaving we were taken to the appointment desk. The gal there was busy and on hold so she asked if she could just call us when she had the appointments. We said sure. We asked that we not have appointments before 8 am as we had a 2-hour drive. If we had a choice Thursday and Fridays work best but would make any day work.
Late that afternoon I got a phone call. She scheduled the appointments for October 27th. What the heck?? The cancer was not noticeable in January….It has grown tremendously since then. How much more is it going to grow in another 7 weeks??
I told her to not schedule the appointments on the same day. I told her to disregard anything about appointment times or dates and to just get me the soonest appointments. So I see the doctor on September 29th and get the MRI on October 4th.
I’ll be honest, I’ll like call next week and see if there are any sooner appointments. I’m not very good at waiting and uncertainty.
In the meantime, I’m going to work on Monday and plan to make every effort to listen to my body and if the work bothers my back, I’ll make a different plan.
That’s what I know for now…