So many of you left kind words on my morning post about wishing me well on my tests and doctor appointment today. I ended up getting back just in time to beat the regularly scheduled blog post and thought I would give you an update and not make you wait until tomorrow. I know you all hate waiting as I do.
Kalissa drove me over to Lacrosse….and what’s a trip to the doctor in Lacrosse without a picture of the bridge over the Mississippi. It’s kind of my tradition to take one.
Here we are. Although Kalissa couldn’t go to my appointment with me, it was nice to have her with. She happened to have an orthodontist appointment on the same day.
She stopped at Once Upon a Child and bought Carver summer clothes to kill the time waiting for me.
My first stop was to get a Chest CT scan. That took about 10 minutes and then it was on to get my PET scan.
EXACTLY one year ago today I sat in the same waiting room in the same chair watching this very same clock as Kramer was getting his PET scan. I’ll admit…it was a tough moment. As that’s the day we learned he only had a short while to live as his PET scan showed he was full of cancer.
I couldn’t help but wonder a bit what my result would be. How ironic that I’d have a PET scan exactly one year later.
Having a PET scan done isn’t hard…fun no, but not hard. Don’t be afraid of them is it comes your time to get one. It’s a simple IV injection, a nap (yes seriously a 45 minute nap) and then the scan. 
The patient lies on this bed and the machine takes them into the tube. I got a strap around my head, chest and feet so I couldn’t move. I was in the tube for about 25 minutes.
After that, I went to the waiting room of my doctor to meet with her. I was early but she got me in right away.
Here are the results:
Nothing. I know that’s kind of frustrating…but seriously there was nothing.
In a previous Chest CT scan there was a tiny nodule in my lung they were following. It’s gone. People can get them from a cold..so it disappeared. I do have a new one in my right lower lung that is 1/2 cm. They aren’t concerned about it at all as it could easily disappear too.
The PET scan showed nothing. No cancer.
YET, my blood work shows cancer. So, what do we do? Here’s the plan:
I am being referred back to Mayo Clinic. They are going to see if they can do anything there. My insurance is an issue if I go there though as it’s “out of network”. We’ll see what they find out….likely nothing again…but we’ll see.
I will likely go through the icky diet and full body scan and will likely be treated blindy for thyroid cancer with another dose of radioactive iodine.
but…that’s all up in the air until Mayo has their turn at me.
I guess there is a name for a case like mine. It’s called Incomplete Biochemical Response. That means nothing shows up on imaging but I have an increasing thyroglobulin tumor marker.
So home I went with no real answers. It was all anticlimactic. I do have to say, as disappointing as it was to not know anything, I’ll take this news over the news I got with Kramer a year ago on this day. He was loaded with cancer…and feeling terrible.
I feel normal…I did talk to her about my medicine and we’re doing a little tweaking with that. I unexpectedly lost 12 pounds. If you’re diabetic, and you weren’t really trying to lose weight, that’s a whole thing. I do attribute much of it to change of lifestyle in general…but something we need to keep an eye on.
So on the way home I stopped at WalMart pharmacy. Remember all the trouble I had with getting my Jardiance three month ago….and it went from over $1100
to zero
to $260 for a 30 day supply
to $230 for a 90 day supply
to $150 for a 90 day supply….(read about that HERE)
Well today it cost me NOTHING. Go figure.
Once home I got a note from my doctor. I was to call to Mayo Clinic in Rochester and make an appointment. I went through a long process and finally got to the scheduler. She told me the first appointment was August 4th. Well that frustrated me to no end so I told her I wouldn’t accept that date. Instead I would call my doctor who referred me and have her office call to schedule the appointment for me and they would likely get a quicker appointment….and just like that, the a June 29th appointment opened up. AMAZING how that worked. I didn’t mean to be bitchy but seriously, I was put off by covid and my cancer more than doubled. What would the number do by waiting another 10 weeks. UGH.
From there it was a call to my insurance. Mayo Clinic is “out of my network” so there was a whole line of paperwork to get that approved too but it’s started.
So now we wait until the 29th….I now understand why my surgeon told me that thyroid cancer is a good one to get if you have to get a cancer but it really nickels and dimes a person to death.
I’m happy and feel well and think in the end…that’s really all that matters. I’ve waited to see doctors…I’ve waited for results….I can wait again.
Thanks for sending your update. I’ve been thinking about you all day. No news is good news, or so I’ve always heard. I’m going to claim that for you. It wasn’t bad news, but it wasn’t good news, so be thankful for the small things. I know you are. May God bless you!
Jo, at least something is finally happening and you have a date that isn’t too far away. I will pray for you.
Will pray for you. God is good
Good for you for speaking up and advocating for yourself. You need to be seen sooner rather than later. Makes me wonder how often that happens and we all just accept it.
Thanks for the update Jo. Waiting is the hardest.
I so enjoy reading your posts since I started following you a few months ago. May God watch over you each and every day. Sending prayers and hugs to you.
I was feeling anxious reading through your blog! Oh, no new findings! Bittersweet for sure! So glad you’re ok. But, also it has to be so unsettling. Sleep tight!
Thanks for the update, Jo! Happy to hear that you got referred to the Mayo Clinic. Hoping they will be able to figure out what’s going on!
I will pray for you, Jo. I am sorry they found nothing. I know how that feels as I am in the same boat with Chron’s disease testing. The waiting, the uncertainty and the frustration is very difficult to deal with. Please hang in there and try to find something to keep busy and distracted. If quilting doesn’t work try reading, watching a movie or just talking to your friends. God is with you, you are not alone.
Thanks for keeping us updated on what is happening. I I’ll continue to pray until you get a good report.
I like your attitude about it all. Especially not taking a late appointment and getting in earlier! Prayers continue for you!
Glad to hear it wasn’t bad news. My husband uses a drug that is rather expense using insurance. Doesn’t use the insurance, he goes through Good RX.com. much cheaper.
My thoughts and prayers continue to be with you and your family.
Thanks for the update. Prayers continue. ❤
Good news on nothing showing on the PET scan but frustrating to be sure that you still have no answers. Great that you stood your ground on the appointment date. No way you should have to wait until August! Hoping all goes well and you get some answers and guidance for treatment.
Thank you for the update! I know I’m not the only one who was praying for you today! Good job standing up for yourself, unfortunately it is something that has to be done sometime with healthcare. Continued prayers for getting your insurance squared away and get to the bottom of what’s happening.
I’m glad you advocated for yourself and were able to get a much sooner appointment. I’m sorry they’re not definitively locating the source of the cancer. I hope they find it at Mayo and you can avoid the radioactive iodine treatment.
Glad to hear there was nothing on the Pet scan. Prayers ongoing for you and for answers soon.
Your news today was so much better then the news a year ago!! So glad you stood up to the scheduler and got in much sooner!! I’ll keep praying for you!
I’m glad nothing showed up on the scans, although the still unknown stuff is undoubtedly frustrating and worrisome. Good that you feel well. Glad you got the earlier appointment at Mayo.
Glad to have the update from you. I was wondering quite a bit about it. It’s pretty crazy what meds cost and always disappointing when it’s seems you can’t get in quicker. I’m still praying for you Jo – believing in a miracle. Sending hugs and Kramer was there too in spirit with you as you went thru your test. Mayo Clinic is supposed to be very good. I’m sorry for all you have gone thru.
So glad Kalissa went with you! I agree with many others, so glad you had better news than a year ago. I’ll have to remember what you told the scheduler, good job. Will continue to pray for you.
Kind of a tough day I am sure – prayers as you go in June and so happy that you are feeling well. I was thinking a needle biopsy was in the plans last March? Will see what the process involves but know we are with you all the way.
That’s frustrating but you didn’t get bad news! Hope you get some answers soon!
Thank you for clearly explaining all you are going through. I know it helps many of us. Wishing all the best outcomes for you. God Bless.
Thanks for the update. It is hard not getting answers when you want them but so glad that you are living your best life now. We tend to put things off and you are a shining example of living each day. Enjoy your family, your home and your activities. Godspeed and keeping you in thoughts and prayers.
Thanks for letting us know whats going on. I guess this a good news/not so great news. I love your attitude though. Praying for better results in June and complete healing.
Love and prayers
I’m sorry you had to relive such a difficult day. It just boggles the mind how inconclusive this all is for you. A reminder for us, however, that with God, nothing is an unknown. And the PET scan not being a big deal…I pray I never need any of those kind of tests. They would have to knock me out. Cleithrophobia….. fear of restraint. That’s mine. I can’t even wear certain kinds of clothes or I get panicky. Never knew it was a thing until 2 years ago lol. Thanks internet! Glad you are feeling well.
GOOD AND not so good news you are right it is nickel and dime you to death.
Hang in there, hopefully you can get answers at Mayo—we are praying for you!!
Continued prayers for you as you navigate these uncertain circumstances.
That is a full time job for you just keeping up with the medical information! Continued prayers for success.
I’m so sorry you are going through this. My husband is still here and he has had thyroid and prostate cancer. I like to joke with him that when choosing types of cancer to have, he chose wisely!!! He had treatment at Memorial Sloan Kettering and is followed closely, but so far so good. OF course the worry never ends but he is doing well and I hope you will as well. I am glad you are heading for the Mayo clinic. The more info you have, the better you can make a treatment and life plan!! Best of luck to you.
I cannot stand it when something is wrong but no one can tell me what is wrong. Several years ago, after a CT scan due to a car accident, they found very small nodules on my thyroid. My mother and her aunt both had cancerous thyroids removed, so it freaked me out. I went through the whole CT scan every 3 months process to see if they grew. The waiting to find out is the worse! I know there are blood born cancers, but to not be able to know how to treat what is going on with you has to be the worst!! Healing energy headed your way. Hugs.
I;m glad you had company for the trip over and back. I cant imagine sitting in the same chair, same spot as you did a year ago, how weird that must of been. I’m glad you got the test and yet its strange that there is no answer to why your numbers go up. Keeping you in my prayers and so grateful that you are feeling great and life goes on.
Continued prayers for you, Jo.
Glad your doc got you a better appointment date. I had a similar experience when I desperately needed to see a specialist; soonest date was nearly 6 months out, but my doctor’s nurse got me one just three days away.
Thanks for the update. Continue with prayers.