Well my last update told you I was being sent to Mayo Clinic in Rochester MN.
Last week after being somewhat assertive I didn’t accept the August 4th appointment as “their soonest” appointment and got a June 29th one instead. The next day they called. Doctor Castro, the Mayo doctor, looked at my chart and said she wants me to go through the dreaded diet, shots and full body scan before she sees me….and they moved my appointment up to see her to June 25th. (Proof my case was “urgent” enough to warrant a before August 4th appointment)
Anyway, they then gave me a June 1st- 7:45am telephone appointment with the nurse to discuss everything I had to do before the now June 25th appointment.
BUT WAIT. I ended up getting a call from billing and they were sorry but they wouldn’t see me as my insurance designates Mayo as being “out of network”. A bunch of paperwork has to be done before my insurance will cover anything through Mayo and that typically takes at least two weeks so they were sorry but I likely couldn’t keep that phone appointment. I ended up asking how much the phone appointment would cost, I was $250. I ended up just paying the amount via my debit card so I could keep the appointment. Insurance can be filed on that later but there is no guarantee it will covered as even if I am approved to be seen by Mayo (which I should be able to) I was not approved for that before it happened.
I’m not rolling in dollars, but I don’t want these appointments held up anymore. $250 is worth keeping this ball rolling.
This is what I found out from the phone appointment….
I start my diet on the 11th. The Mayo version of the diet was really vague and wasn’t as strict as what I typically have to do. I’m actually frustrated by the whole thing. I’ve asked a couple times about specific things but again, the answers were vague. I made the personal decision to eat according to the diet I’ve done in the past as it seems easier to follow as the guidelines are more strict. I don’t want to miss any chance of screwing up the diet and now getting accurate results from the test.
The diet is no fun. The long and short of it is, I can safely eat all the fruit and veggies I want. I can’t have butter or salt and dairy products, and everything with iodine is a no-no. If something says “salt” on the label, I can’t eat it. I can eat 6 ounces of meat a day. No fish. No processed meat. All has to like a steak or chicken breast type food…no chicken strips with breading. I can eat bread but must be homemade. I cannot eat out at all ever. I can eat fresh ground peanut butter. Egg whites, no yolks. In the past I’ve had to go to several grocery stores to get food but this time around, I’m just doing the best I can with what’s available at our main store.
Several known medical facilities have put together diets that are consider low iodine. The diets all vary…some say limited rice. Some say rice. Some say no rice. So to be safe, I just don’t eat rice. The same for any kind of dried bean. Canned goods only if it says, NO SALT ADDED. If googling a food and I find a diet says, “some recommend not eating this…” I don’t eat it. I’m a rule follower and I don’t want to mess this up.
The purpose of the diet is to starve my body of iodine. Thyroids like iodine. After the diet, they inject me with a low dose of radioactive iodine. That moves around my body and attaches to any thyroid cells that might be there. Then I do a full body scan and if the radioactive iodine found any thyroid cells, they will light up. That would show us if or where the cancer is.
Again, this all sounds good in theory but in the past, nothing has shown up when I’ve done this test….yet my blood tumor marker tests indicate I have returned thyroid cancer. So the hope, I guess, is that something lights up and we find whatever it is.
In the meantime, there is lots to do before the test.
-The diet starts on June 11th
-On 22nd I drive to Rochester- blood work and get a shot to suppress my thyroid.
-On 23rd I again drive to Rochester to get a shot to suppress my thyroid.
-On 24th I drive to Rochester and get my low dose of Radioactive Iodine and get a neck ultrasound
-On 25th I drive to Rochester, bloodwork, get the scan and see my doctor. At this time I’m making the guess that I will then be given the Radioactive Iodine treatment dose to kill whatever it is I have going on. I’m not certain that will happen but I am starting to believe that by what the doctors have been hinting towards. I have an appointment scheduled for that to happen but if they decided I don’t need it, I won’t get it.
So…after that..If I get the radioactive iodine treatment dose, I have restrictions. I can’t see babies for 21 days. Well I could go on a walk if they were in a stroller at a social distance away after 15 days or so. I can be around Karl but should keep the 6 feet away. I have to use paper plates and plastic silverware for awhile. There are tons of other things I have to be careful about like flushing the toilet twice. After 21 days I’m in the clear.
The reason, I would be radioactive. I won’t feel a bit different…but I can pass radiation on to others. So I am careful as I don’t want to harm anyone. So I basically go back to stepped up quarantine life. I counted it out on the calendar and July 17th, I’ll be in the clear…but who knows. They might find cancer. They might decided it needs to be surgically removed first. There is just no way of knowing for sure.
ALSO…a possible surgery is on the table. If something does light up and it’s operable, I would likely have surgery. Then after I’ve recovered from the surgery, I would have to go back on the diet and go through the whole process of shots and appointments and then get the radioactive iodine. So for now, I guess life for me is up in the air.
I know that Buck and Lora are planning a birthday party for Scotty on the 25th of July. I’m hoping whatever I have going on, is settled enough so that I can go.
All I know is that I’m three weeks closer to having this round of testing done. I apologize in advance for the crabby person I will likely be while I’m on the diet. It always frustrates me when I think I’m in the clear to eat something and I’m not. Analyzing everything that goes into my mouth is such a chore. I do know one thing for sure, we will be eating out tomorrow night for sure. It will be my last chance to for a couple weeks.
Thanks so much for all the well wishes and support.