I thought we were done. We’ve hung out for 7 years. You’ve tried to extend your stay several times, but I hope you understand that by undergoing 4 surgeries and radiation, that we didn’t really want you around permanently.
You really tricked us this last surgery – we really thought we were done with you. Everything felt different. I had an excellent surgeon who even found your third friend that we hadn’t seen before on the scans.
But this is what you do…you give false hope, and then another punch…and this time it was right in the gut. I am so over you.
Get.the.hell.out…you have 8 weeks before we blast you with radioactive material again. Let’s leave on good terms before that happens.
It’s true…I still have cancer…we’re not done. Do I sound like a broken record? It feels that way. It’s because I am in the exact same place I have been in before. And we are all tired of it. But it’s reality – and also why we are again asking for mega prayers these next 8 weeks.
Last Wednesday we had my check up at UNMC. It has been six weeks since my surgery and the crucial tumor-marker number would show if there was still residual cancer or not. The goal would be to have this number as close to zero as possible.
It was 1.6
This may seem close enough to zero, and it did go down since my last blood draw before surgery, but because it isn’t down enough, it most likely means there’s microscopic disease left. Cancer that my surgeon could not have seen. Going over the pathology reports also showed some extension into the tissue from the areas where they removed the tumors. This also indicates that microscopic disease could have been left behind.
She drew a picture for me – of a circle representing the tumor that was removed with little dots around it. Then a rectangle around that representing the whole area that was removed around the tumor. Since the little dots went outside the circle (the dots are the microscopic disease), there could be little dots, or disease, left behind outside the rectangle, or left in my neck.
Literally. This is the exact drawing she drew at my VERY FIRST APPOINTMENT seven years ago. How am I in the exact same spot I was at the very beginning?
At this point, you may be questioning the care I am receiving. I would be, too. But this happens sometimes. We were also in this exact same place 5 years ago when we went to the Mayo Clinic for a second opinion, and they recommended the exact set of steps UNMC was recommending. The doctor up there said sometimes thyroid cancer acts like this – and people every few years need surgery or treatment to keep knocking it out.
And it feels like a super, sordid game of whack-a-mole.
We were crushed at this appointment. Although I did not go in expecting to pop the champagne bottle, I was NOT expecting this. As she is drawing this picture for me, I knew what she was going to say next. Because it’s exactly what she recommended 7 years ago.
RADIOACTIVE IODINE TREATMENT (RAI).
Now, as far as cancer treatments go, this isn’t the worst thing – and I need to remember that. But this treatment does have risks, and even higher risks now facing it a second time. Secondary cancers, permanent dry mouth, dry eyes, losing your sense of taste, salivary gland damage, and not having children for at least a year…ugh…plus a special diet preparing for the radiation, possibly going off my thyroid hormone to go completely hypo-thyroid to prepare for the treatment, and then being isolated for 10 days while the radiation wears off.
Isn’t there a bright side? Angela, you always show us the bright side…
I’m trying guys…I really am…the bright side I suppose is we have 8 weeks to pray like crazy that my tumor markers go down on their own. My doctor was prepared if we wanted to do RAI right away (like miss Christmas?? no thanks…) but said that we could re-draw my labs in 8 weeks and see what the markers are then, plus then be able to scan my neck and see if there’s any disease that shows up there. She said typically your tumor markers 6-weeks post-surgery is what it will stay, but some people do take longer to go down.
Also, by waiting 8 weeks to re-check and doing a neck ultrasound then, we can see if there’s any disease or tumors that show up on there – and if so, it would mean surgery. We couldn’t do a scan at this appointment because there was still too much scar tissue from surgery. If thyroid cancer is big enough to be seen on a scan, RAI is not usually strong enough to knock it out, and is why surgery is the best treatment. Seriously…facing a fifth surgery?
So in 8-weeks at my next appointment we will have a lot more of the pieces to make a decision. And the choice is ours – we can decide to forego RAI, keep my thyroid level suppressed, and continue to be checked every six months…pretty much keep doing what we’ve been doing for the past 7 years. But I would never be cancer free. And as much as I love my docs, I am ready to not see them anymore.
So please, say a prayer that my tumor markers will continue to go down on their own so we don’t have to undergo RAI treatment again. I seem to usually be in the small percentage of cases for everything, so this time I would love to be in the small percentage of patients where my tumor-markers take longer to reach zero.
I know looking back on this I will see the reason for the continued trial – there is always a reason I have learned. But for right now, I am going to try to not let cancer steal the next 8-weeks from me and hope for the very best. I know whatever happens, I have the best family and friends surrounding me, and we will be okay.
PS: I had fun finding sarcastic, snarky cancer memes and images for this post. I’ll go back to my cute kids for the next one.