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…
Dear Jo, praying hard for you. I went through this appointment changing and delays with my husband. It’s awful to have to deal with people who are just working for a pay check and don’t really care for their clients. Keep praying on and trust the Lord to make things right. You’ be made it this far, hang on to God’s promises and things will straighten out.
One of the problems with lifting and it hurting, is it might not hurt till tomorrow! Hang in there!
I know Carolyn. That’s why I get so frustrated with that answer. On top of that I constantly have low underline back pain so it’s always hard to gauge if there is extra pain or just the normal. UGH.
I’m sorry you are having such trouble ! Ugh! I’ll be praying for total healing even before your appointments and that they can move you ahead of the line !! You are special to a lot of people ! So glad you have Kalissa ! ❤️
Thankfully you know to push to get answers. In the meantime try to get lost with needle and thread.
Praying for you Jo! You have no idea how much of an encouragement you have been when we were just starting our business down here in Florida!
–Rachael (and Becky) at Quilted Twins
Thanks so much Rachel!! You guys are the best!!
I will pray for you Jo. What a terrible situation to have to deal with when you know you need treatment. I’m so sorry this is happening to you.
Go, Kalissa! You have great kids, Jo. Glad you got some earlier appointments. Waiting sucks.
I’m so sorry for all this frustration!
And I would call and check on earlier appointments if I were you too. Prayers for you to get answers and to receive God’s peace.
I have been praying and will continue to pray for you Jo! I know this is all the harder because Kramer’s neck broke just sitting in the chair after the cancer ate his discs…you are just going to have to put this into God’s hands. Easy to say; hard to do! I’m so glad that your kids do everything they can to help you. Getting a part-time job may be a good distraction in the months to come…being busy is always best when you are in a stressful situation and you are in a terribly stressful situation. Lots of people are praying for you though!
Oh, Jo,
Words escape me.
I’m sure you probably do this, but I always ask to be put on their cancellation list, and if it means you have to get up extra early to get to an earlier appointment, it will be worth it. Good luck with everything!
Jo, Praying for you during this difficult time with the appointment scheduling. It is very nerve wracking having to place all of the calls and sunny all of the follow up, you are pleased to have Kalissa helping you asking the way. You have a wonderful family. Hugs!
I really feel for you Jo, as if the cancer isn’t enough to deal with, you don’t need the extra hassle of haggling over appointments as well. Take care of yourself, and remember to listen to your body. (Says the person who finds it hard to follow her own advice!)
Your appointment hassles are so unbelievable. It almost seems like they are not taking your cancer seriously. You are so patient and I’m not sure I’d be in the same situation. So glad you have Kalissa helping you with this. I will keep praying that these legions disappear while you are waiting for appointments. God is our great healer.
I’ve heard so many stories of lost samples and missed tumors. Are people just distracted or are they over worked so that they louse up reports. That frustrates me so much. I sincerely hope that they read your MIRs, etc correctly from here on out. I’m so glad you have Kalissa or someone else with you for appointments. Four ears are better than two when at doctors appointments. I suggest calling everyday, maybe there might be a cancelation. Prayers for you.
As if you don’t have enough on your mind, right? I’m so sorry you’re having to go thru any of this. It’s not fair & yes, I know life isn’t yadda yadda but it still isn’t fair! Love & positive vibes sent your way, sweetie!
I can’t imagine the frustration with the appointments. It is so good you have children in the medical field to help you. Sending prayers your way.
Aren’t daughters the best? My daughter pushed and pushed when I was diagnosed with breast cancer. We couldn’t get any recommendations from docs for surgeons, or anyone to pay attention. Finally she got exasperated and got an appointment with emory cancer clinic. Then everything – tests etc had to be sent and redone. I was diagnosed in Oct. It was January before I finally got to start treatment. Thank god for my kid! I was too tired to do even a quarter of everything she did. Fortunately the treatment is working – but I know it’s not the be all. Just enjoying each day I have. Appointments – that does take time doesn’t it? So glad your daughter is with you every step of your journey, it would be lonely without them. Take care.
Jo, just reading your post frustrates me; I can’t imagine how you must feel. I will be praying for you as you wait for answers. I hope that you will be able to trust in God’s care in the midst of the waiting. May His peace be real to you.
❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
How terrible for you to have to cope with all these unnecessary mix ups and delays. Praying that this will be resolved and you will receive the appropriate treatment.
The struggle for appointments and information is so unfair. Who deserves that? I hope one of your kids can go along with you as an advocate. That can help so much. Enjoy each day! We sure enjoy you!
I will certainly be praying for you. I am so sorry that the medical field and the insurance are adding to your stress. I am glad your family is helping you sort it out. It is way too much for one person to deal with the illness and the insurance and the doctor’s office or hospital, etc.
I am so sorry you have to go thru this, the medical world isn’t the same as it use to be! So glad Kalissa is a nurse and can and is very helpful in these situations. Please keep calling to see if you can get in earlier!!! You are in my prayers!
Thoughts and prayers for you and your family.
It’s all been said, and very well, so I’ll just add my prayers for God’s wisdom, comfort, healing, and that He smooths the road before you.