I know many of you are curious so I thought I would throw in a doctor update.
Number one and highest on the things I would like to update you about. I feel totally fine. I feel completely normal. Everyone has been asking how I feel. Absolutely nothing has changed in my health physically that I can note. I was walking with a friend the other day. We walked three miles. I didn’t feel winded…nothing different at all.
At times, I actually think that can be more scary than good. It would be so easy to deny that I have anything going on. The tumor in my lungs is minuscule compared to what my husband’s was. (for anyone new here, he died of lung cancer in June of 2019).
I had always wondered how his could have gotten so big and he didn’t notice it. I think that is actually a problem for those of us in our late 50s and early 60s. We come to the point we are aging. We can’t do everything as quickly as we once did. We get an ache or pain and say, “Oh, this must be what aging is”. We tire a little easier and say, “Oh, this must be what aging is”. It is so easy to take aging for what could actually be a medical condition. I think that’s what Kramer did.
Regardless…I truly feel normal. No shortness of breath. No extra tiredness. No nothing to speak of. I’m glad I saw the tumor on the PET scan or I might be in denial.
The next question I’ve been getting is about where I am at in the treatment process. Here’s the answer to that…
Insurance denied coverage for the drug I need. You might remember I need a drug that isn’t often used the way I need it used. Insurance typically denies it and the doctor has to submit extra paperwork before it is accepted. Sometimes even then insurance won’t cover it.
I was assured by my Mayo doctor not to worry about it as Mayo has a financial assistance program and I’ll likely qualify if insurance refused to cover. So…I’m not worrying.
The Mayo Specialist pharmacy called me and told me not to worry as most insurances refuse coverage the first time it is run through. So, I’m listening to advice and not worrying.
We did learn a little more about the drug I’ll be taking. It was a complete surprise to us but it is an oral chemotherapy drug. I’d previously been told I would never have chemo for thyroid cancer.
I guess there is a term called “off label use”. That means patients don’t use the drug for what it was originally designed for. I’ll be using it in that capacity. It won’t cure my cancer but it will help it to work with Radioactive Iodine which will treat my cancer. That’s why it’s a problem to get as it’s “off label use”.
That’s also why the side effects of it are so terrible. It’s a chemotherapy drug. I’m told I’m not supposed to lose all of my hair with it but it will likely thin. That’s actually the least of the side effects.
We ended up questioning whether I can do childcare during this period and were told that I can. It would depend more on how I felt than the drug itself. We know people who go through chemo and are so immune-compromised that they shouldn’t be out and about. I need to be careful but not paranoid.
In prep for it all, I’m back to wearing my mask in public. I figure any cold or and covid I can avoid, I really should try to avoid. I am still going out though. Not a lot. Mentally, I think it’s good for me.
So I told you physically how I’m doing. Now mentally…
I’m doing okay. I’m getting my head wrapped around it and getting the plans I can get in place, in place. I am a “work the plan” sort of girl and as the things fall in place, the better I feel.
I’m super excited that I’ll be stitching my new Floral Motif Sampler as a count down to the end of treatment… Everything arrived in the mail. If you heard some squealing from NE Iowa on Thursday of last week, it was me. I was squealing over the chart. It really will be perfect to track my cancer journey.
If you missed when I wrote about the chart, my plan is to stitch a flower every day while I’m taking meds and doing isolation for my cancer treatment.
I am currently missing three colors but am totally okay with subbing in DMC. I’ve looked around and the colors I’m missing seem to have sold out everywhere. The spots where the thread is used are so small that using DMC won’t be noticed.
I’m going to get my floss in bags and get this in a project bag. SQUEAL!! Can you tell I am really excited about this? I REALLY am.
Other things on the mental side of this all…I’ve vowed that this time around with my Low Iodine Diet, which I hate and whine about, I’ll do better. I have to do the diet as part of the treatment plan. In the past, I’ve given up on making decent food and this time, I won’t. I decided when the time comes for me to be on the diet, I’m going to embrace it.
People all the time tell me how they have learned things from the blog. Me, during the several times I’ve done this diet, have been so frustrated and wished there was a landing spot for some recipes and advice for me while I’m doing the diet. I got to thinking, why not me? Why don’t I be the landing place for people who are going through a low iodine diet? I can find and make enough recipes to help others through this. I can post them here on the blog. I know the recipes won’t be for everyone but even people who are trying to cut their salt intake could benefit from these recipes…so now I have a mission and I’m working on that.
I’m working on making some freezer meals and am super excited about it. I discovered I could make my yard sauce only make it “legal” for the diet.
I’ll tell you all about it once the time gets closer. For now, know that I’m doing about the best I ever have mentally. That’s great!!
So…all and all I’m on schedule. Everything is going as expected…well, not really. My mental attitude about all of this is really great… In previous times it was so much scarier and I was more worried. This time, I’m doing much better.
Your attitude will take you far, Jo. And all the prayers being sent up as well. Love and hugs!!!
Jo, you’re doing better than “better”! You are a pure-bred winner!
Jo, you said it right- your attitude will definitely either pull you thru or sink you. I’m sure it’s all very frightening. And for that I’m sorry for you. But you’re an over comer and I can see you Blessing others thru your faith.
Jo,
Insurance is an endurance game. They try to wear you
out and hope you go away. Never give up, hang in there!
Roz
So, are you now on the low iodine diet ? When you explained earlier what THE PLAN was I may have done the usual and did not want to believe and blotted that part out.
When you were explaining how we decide things must be part of the aging process and miss important signs I could hear my endocrinologist telling me there will be signs along the way with thyroid disease that professionals may even dismiss as part of aging DO NOT LET THEM it will most likely be your thyroid.
See how clever you are !!!!!
I am praying for you, your family, and those caring for your medical needs.
On a less serious note, what is the name of the game your family enjoys so much ? We know a family who needs a new interesting game for under their tree this year.
I’m not on the diet yet. About 15 days into my treatment I have to do on it. Here is a link to the game. https://amzn.to/3mVQNuo Ticket to Ride
Jo, go to 123stitch.com and they have your chart and looks like all the thread needed. Or let me know what colors you need as I’m going to a shop where the woman has been in business for 41 years and I’ve was just blown away…anyway I can pick them up for you. This shop likely has most anything you want!
Thank you for the update. I am glad to hear that you have gotten a positive attitude and will conquer this. I know it is even hard for positive people to stay positive all the time. It seems to me that sometimes the insurance can be the worst part of an illness. It just shouldn’t be that way. I am sure your health team knows how to jump through the hoops for you.
You are in my thoughts and prayers here in CT daily. I have raised your name up (first name only) during church service when we pray for someone and will continue to do so. Everyone can use a little extra prayers. You will deal with this in your own way. You are doing great and have a wonderful family to support you. We love you!
Yes, let us know what you need during this time. Also, you talk about project bags all the time. Do you make them or buy them, and where.
Thank you for the update. Your attitude is just so awesome! I’m glad that your cross stitch project arrived in time! It’s those little things that help get us through. Hang in there!
I am immuno compromised because of a blood disorder. I was diagnosed at the beginning of Covid, and I asked the hematologist how I could improve my immune response.
The only thing he recommended was that I take extra vitamin C, and he stressed that it was not proven. So I take 1 500mg chewable tablet and 2 500 mg caplets every morning, about an hour before I eat anything.
I have not even had a cold in the last 20 months, and I am around lots of small kids, and my husband has been sick. Of course, there has not been as much going around, either!
I will pray for you!
Jo, you continually amaze me when you stop to think of others – like recipes for others going through the low iodine diet.
You have a wonderful attitude – a positive one. This will mean many more “perfect weekends” for you I think.
Much love and many many prayers
So happy you got your chart you wanted!!
It’s just like you Jo thinking and wanting to help others as you go through your diet, I’m sure it will help many!! Know there are armies of people praying and wishing you healing thoughts!!!
I am so proud of you for asking the positive side of your situation. What a blessing to read your blogs.
I am one of those that have to be careful of salt intake. So I’ll be happy to see low salt recipes to fix and eat. Adding my prayers to everyone else’s God is so good to provide each of us with people who love to pray. Keep on going Kramer Strong.
You got this Jo, and I will look forward to your sharing of foods that are low salt. I have made your yard sauce a few times and it is so versatile. I really like adding it to my chili and lasagna meals. I love the idea of a flower a day while doing treatment, you make such pretty stitchery items. We are with you on this journey, Kramer Strong!
Thank you for the update! Your attitude is wonderful and will carry you through this . I love the idea of trying to put together some tasty foods for your low iodine diet. Reaching out to help others is a great way of dealing with your own problems. God bless you!
Jo, you are so encouraging to everyone who follows your blog and for those who know you personally. It’s special for you to share with us when most people would keep quiet about it. We all love you and care about what happens to you. Prayers are going up from Tampa Florida just for you!
Just go with the flow, Jo. 3/15/22 will my 36th year of surviving brain cancer 1/22/22 will be the 35th anniversary of 1st reoccurence brain cancer and 12/18/21 the 28th anniversary of the 2nd reoccurence. I’ve had 2 ovarian cysts removed in 2007 and a thyroidectomy three years ago. I’ve
learned on my journey to say to myself “that’s what you think but not I and certianly not God. ” my verbal reply to any Dr “Just because you say it doesn’t make it the truth.” Remember that, okay? They are not God. “For I know the plans for to prosper you and not to harm you; plans to give you hope and a future. Met. 29:11
JUST BECAUSE THEY SAY IT DOESNT MAKE IT THE TRUTH. Only God knows the truth; the whole truth; and nothing but the truth. Amen. Much ❤ & laughter
Ps thyroid diet avoid green veggies and gluten. I was in denial too but I’m Irish Scottish German and insist on learning life’s lessons the hard way!
I love your great attitude, Jo! You seem to take it all in stride. I’m so glad to hear that you feel well. That is half the battle, I think. I pray it continues. Thanks for taking us along your journey. Hugs!!!
WORK the plan and BE the change. Go, Jo!!
My DH had a glioblastoma (grade 4 brain cancer) and the ‘gold standard’ treatment for that was radiation and an oral chemo pill. That treatment rarely worked for anyone so we started off pretty much from the get go with quite a few different ‘off label’ drugs (one was for acne). The chemo pill really didn’t affect DH much and he never lost his hair from that (of course, they had shaved it all off with his first brain surgery). With a glio diagnosis, usually a patient is told a year or less. Here’s hoping your off label drugs will work wonders on your cancer and you will feel great.
Thank you for the update, Jo. Love your positive attitude. Prayers will continue… prayers for grace and strength to meet each day, especially for those days when it might get hard.
Great to hear you feel well and are ready for what lies ahead. I admire you so much for your honesty and grace in the challenges you’ve had and what you’re currently facing. It’s so easy to self-focus at times like this and yet here you are thinking of others too with the idea of compiling recipes and putting them in one place. I will be continually praying for you and the family and cheering you on through this detour.
I received my chart and fabric in the mail yesterday to stitch along with you. So wise of you to mark off your days while going through treatment by doing something you love. Sending prayers
Jo, you are such an inspiration to us all! We love you and will continue prayers for complete healing. You attitude is amazing and will play a large part in the days ahead. God bless you and your sweet family! Helen
Jo, you are such an inspiration to us all! We love you and will continue prayers for complete healing. Your attitude is amazing and will play a large part in the days ahead. God bless you and your sweet family! Helen
Jo, I’ve been following for years and you are such an inspiration. And what blessings your children and grandchildren are. Sending prayers for good results from your treatment. You are amazing – we can (are) all learning from you so thanks very much for sharing so openly with all of us!
Bless you, Jo. Your being so open with your medical issues inspires the rest of us to share and reap the support our friends give. I look forward to the recipes you share. Hang in there, my friend. Your positive attitude will pull you through. Thanks for all you give to me.
Maybe this site will help you plan. https://lidlifecommunity.org/wp-content/uploads/2017/08/TWO-WEEK-LOW-IODINE-DIET-MEAL-PLAN.pdf If you’ll list your missing floss colors, I’m sure we can help you out. If there is anything else we can help you with, please don’t hesitate to let us know. You have given us so much enjoyment, I’m sure all of your readers would be overjoyed to assist you. Prayers are being offered on your behalf.
You are amazing and stronger than you think. Positive thoughts and prayers to you and your family.
Jo,
Are you using non-iodized salt when on the thyroid diet restrictions? I don’t remember seeing that mentioned in your previous posts about the diet.
The start of your Yard Sauce looks yummy! If I was close-by, I’d help you eat it . . .
YES. The diet has changed a bit. Non iodized is okay in limited amounts this time around.
Continued prayers for you and your family!
Several years ago my mom was diagnosed with rheumatoid arthritis and one of the meds she was prescribed is a mild chemo pill. She has definitely lost some hair and tires easier, but then she is in her mid-80s.
Hang in there, we are all praying that your prescribed treatment will keep you hale and hearty for many more years.
Praying for your continued good attitude!!