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.
Maybe this time it will all be resolved and life will get better for you.
Take care and Stay safe.
Jo do what you have to do. It is a small price for an answer. God bless and keep safe.
I am so sorry for what you are going through. I do not have cancer but can empathize with the thyroid issues from the testing aspects and a wacky one that cannot seem to figure out what mayhem it wishes to fet up to. for something so small it surely can be a trial. I will certainly be saying prayers for you Jo. Not knowing and therefore not having a plan of action is such a challenge as well.
This time of trial with the anniversary of your Kramer’s passing and little Gannon’s challenges and this thrown on your shoulders has to be frustrating. God;s Blessings.
Remind me (and others) how to help you make a little money through your blog. I’m remembering something about clicking on ads. Is it just closing them? Or, must we open them and view?
I know you are usually the one donating but remember some hospitals, churches & organizations have funds to help community members with medical expenses. Good luck with this struggling.
How do you find Chicken or meat that doesn’t have salt? Most have some? I hope you get answers and solutions so you can put all this behind you. Will keep you in my prayers!
The diet in LOW iodine. I am allowed 6 ounces of meat a day…It’s restricted because meat naturally has some iodine in it.
I hope and pray this will be beneficial to finding the end results. The diet does not sound easy, but you are so good at following rules/guidelines because you know the importance of it. I wish I still lived in Rochester and you could just come stay with me and not need to drive back and forth.
Continuing to keep you in prayer. This has been such a hard time for you with everything going on.
Love and prayers
Ugh!! Terribly sorry the you have to go through all this AGAIN, Jo!! Hopng for answers and a good outcome of any treatment deemed necessary.
Continuing to keep you in my prayers that this time you find some answers this time. I’m so sorry you have that long drive back and for to Rochester so many days. I wonder if they have someplace like the place you stayed when Kramer was in the hospital. God bless you! You’ll have lots of time for cross stitch!
Praying for you and your medical team.
I had my thyroid removed with the radio active iodine in 1990 – and am truly feeling for you with all the diet and all the testing.
Oh, I’m sorry that you have to go through all of this again, but I guess it’s the only way to find answers. Prayers and hugs for success on this journey. Enjoy your dinner out tomorrow.
Sorry you have to go thru this. Keep you chin up. You can do it ! You are strong and have the back bone . I had cancer 4 years ago. And I know what you are goingthru. Just take each day at a time . Keep yourself busy , your good at that.
Your in my prayers
I’m so sorry that you have to do that diet plan again, no iodine. It did not sound that easy to follow with all those restrictions. I hope they can give you some answers this time. I know its the one anniversary of Kramer passing and I know you are missing him, someone to talk it all threw with. I’m glad you have been having huge family gatherings with lots of visitors, it can be helpful. Hugs and thinking of you
Thanks for the update! I don’t think you sounded crabby at all, but no one would blame you if you were! I think it’s got to be so hard for you…you know what to expect since you’ve done this rodeo before! You know it’s not fun! I keep you in my prayers! I hope they find something this time so it can be taken care of!
You are in my prayers, take care.
Praying for the next few weeks.
I hope you get answers. Your journey with this has been going on way too long
As frustrating as it is you are at least moving forward to getting answers. With my medical issues I can sympathize. I hope all goes well for you, you get answers and treatment. Hugs
oh my goodness Jo! I’m glad you are assertive and moved up your care….We each must advocate for ourselves. Wishing you the best in this next step of beating your cancer!!! Hugs to you.
Praying for you as you go through this diet again. So hard when the directions are vague and hard to follow but so good that you do the research and figure it all out. Thanks for keeping us in the loop so we can pray for the whole procedure. Just the word isolation brings dread to my mind. Sending love your way.
Be as crabby as you like. We’re here for you. Prayers being said.
Jo, I have only positive thoughts for you.
This is going to work out for the best. It is just all the run-around to get there that drives everyone CRAZY!
Keep the faith and all the quilting girls are praying for you.
Love from Pocatello!
Roberta
You’re not crabby. You’re slightly upset as what you have to do to get ready for your tests. Praying all does well and whatever is causing your markers to jump is found.
This is your space and we are your guests. Be yourself. I think we can all relate on some level with how you are feeling. Some days we just get so many lemons and there is no pitcher in which to make lemonade. That’s my life right now. Best thing we can do is try our best to let go of it all and let God carry it (and us).
Sending and saying Prayers for you. I know it must be terribly hard – not knowing and wanting to know – wanting something to show but not wanting anything to show. I pray for strength for you. That the doctors will be able to determine why your test keeps showing this way. Praying you’ll be able to spend time with your family quicker than you expect. And for an easy time as you prepare for this appointment.
Prayers are with you Jo and that the doctors will be able to give you answers. Stay Kramer Strong!
Prayers are with you Jo and that the doctors will be able to give you answers as you travel this journey to good health. Stay Kramer Strong!
Praying for you and that you have a good outcome.
Wishing you the best of luck. This has got to be so difficult but from reading you for so long, I want to think you’re going to get through this with flying colors!
I am sorry that you are having to go through this once again. I will be praying for you that you get the answers this time.
Prayers for, your family and the health care team. Is there a way you can stay in Rochester in June, for the back to back appointment, that will not break the bank and the diet?
Glad you have a plan of action but wish it were going to be easier for you. Praying that everything goes the best it can and smooth sailing throughout.
Adding my prayers to the group. Praying that there will be answers and solutions after this trying time. Knowing anything is better than knowing nothing and having to wait. Wait is such a sorry word!! For anyone for any reason. Hang in there. Hugs to you long distance.
Is there any way that Kalissa could give you the shot on the 23rd so you wouldn’t have to keep doing that drive?? Just a thought to take one trip off the table!! Praying for you…having to watch everything you eat is definitely not fun!!!
Hope all goes well for you with the testing, Jo. Hope the scans show something that can be treated or surgically removed and you can move on with life. Uncertainty is stressful. Good luck with the diet. I know you will be wanting all the things you can’t have. At least I would. LOL
Keeping you in my thoughts and prayers and hoping that you finally learn something definite in your diagnosis.