For those of you new here, I have an ongoing relationship with cancer. I was diagnosed with Follicular Thyroid Cancer in January of 2016. I had surgery and went through Radioactive Iodine Treatment at the time and for a year or so I was good. Then my thyroglobulin tumor markers started to increase so I was put on a watch list.
Being on a watchlist consists of appointments and tests every three months. Things continued to go bad with the numbers indicating that my cancer was back, but try as they might, the cancer has never been able to be found.
So they have drug me back in every three months to tell me that they can’t find it…they are sure it’s going to pop up…but they can’t find it now.
The numbers got higher in 2016 and my doctor sent me on to Mayo Clinic. Still, nothing was found. My numbers have continued to go up. Still, nothing has been found.
In June, I went to the doctor and my tumor marker went up a lot higher than anticipated. She wanted me back in three months for a PET scan. My insurance wouldn’t cover one…we did CT scans instead. Nothing much different was found on the CT scans but again, my tumor marker jumped much higher than expected. After a huge runaround, my doctor requested a PET scan, and this time my insurance approved it.
My doctor told me she is pretty confident that something is going to show up this time. Typically in cases like mine, once the number gets over 1000, mine is 1250 or so, she said something should show up in the scan. Sadly, thyroid cancer typically spreads to the bone or lungs.
For a long time, they have focused on my lungs but there is little to no change there…some nodes shrink, some grow. When I say grow that means they go from 5mm to 7mm.
This time, she’s suspicious that we might find something in my bones. I’ve been having some hip pain on my right side so I wouldn’t be surprised it that is where the cancer moved to.
Thursday was PET scan day. Friday was the day for me to meet with my doctor.
Here is what I learned…First off…I’m going to warn you, this is a LONG story. Grab some coffee or come back later when you have time to read it all. I’m telling you all exactly what I told my kids as I’m upfront about it all. One of my biggest pet peeves when dealing with my cancer is when people think they know what’s happening because they heard something from someone else. I promise, if there is something to know, I will be the one to tell it…and you’ll find that info here.
Our youngest daughter, Kalissa, went with me to the appointment.
Kalissa has a way of making even miserable days fun!!
Our appointment was at 7:45 am. To get there, we left my house at 5:45 pm. By 8:30 am the doctor still hadn’t been in to see us. My doctor is notorious for having me sit in the waiting room a long time but this was about the longest. She finally came at about 8:40 am. She brought a pharmacist with her. Hmm. I took that to be bad news.
We sat down, she pulled up the scan and told us no cancer was found in my bones. That was good. I had looked up the prognosis for that and only about 60% of people in that situation live past 4 years.
Kalissa and I were happy we dodged that…but cancer did show up in my lungs. Many of you are then going to think, oh, she has lung cancer now. That IS NOT TRUE. I have THYROID CANCER IN MY LUNGS. The same cells that made up my thyroid cancer jumped residence and set up shop in my lungs. It is very important in my case to remember this.
This is important to note because this will be treated with the same protocol as THYROID cancer NOT lung cancer. I will not get chemo. I will not get radiation. They do not help what I have.
Back when we knew this all was a possibility my doctor did genetic testing on me to learn what is the best way to treat this should it come to the point that I need treatment. Well, we’re here now.
The way thyroid cancer is treated is through radioactive iodine. It’s a pill I ingest. But…we have a problem. My cancer cells are no longer interested in taking up radioactive iodine leaving it pointless to treat me. BUT, they have a new drug that they are willing to try with me. There are four points of criteria to make patients eligible for this drug. I have three points and she’s willing to try it with me. The hard news is that it is about 50% effective in people in my situation…so if you want to shoot up some prayers that I’m one in the 50%, that would be great.
The treatment is fairly new. The team at Mayo has given it out about 30 times before…yes, I’m feeling a little like a guinea pig, but it’s okay. I’m willing.
My cancer is still slow growing so I was given the option to not treat at all and watch…but I opted to give it a try.
Here is how it all goes…
Being the drug is so new, it’s sometimes a fight with insurance companies. My doctor assured me that if my insurance won’t cover it, Mayo has a financial assistance fund. I was thankful for that as it sounds super expensive. With the work back and forth between getting it paid for, and it being a rare drug, it might take up to a month before I even get the meds. This is not a medicine that comes from any regular pharmacy. Mayo has a special pharmacy for this.
Once I have the meds, I have to contact Mayo Clinic and tell them I have them. Then scheduling needs to happen and they will tell me when I can start taking the meds.
I take the medicine for 30 days. I was told to expect nausea, diarrhea, and a rash. There are other side effects but these are standard. Most everyone gets them. They said to expect the rash on my chest, face, and in my hairline. I am to expect to need steroids and antibiotics for the rash. It may take five weeks for it to heal after I’m done taking the 30-day dose.
About halfway through taking that med, I am put on a low iodine diet. I have done this before. It’s a very miserable diet. I complain about it every time I have to do it and I’m warning you…I’ll likely complain about this next time too. But, what’s a little complaining between friends, right??
I’m on the diet for two weeks and then the treatment week starts:
Sunday I drive to Rochester for a shot and back home.
Monday I drive to Rochester for a shot and back home.
Tuesday I drive to Rochester for a shot and back home.
Wednesday I drive to Rochester and get the full-body scan. This is the critical test that will determine what happens as here is where the fork in the road is.
IF THE TUMOR SHOWS UP on the scan, the drug that I suffered through for the 30 days worked. I will:
get a shot and be allowed to go home.
Thursday I drive to Rochester for a shot and back home.
Friday one of the kids, Buck already volunteered, will drive me to Rochester and drop me off at the hospital. I will be given a large dose of radioactive iodine. This dose will likely be about double what I received previously. This dose is large enough that I can’t be in the public. I will have to be in the hospital for a day or two. Do you remember learning about half-life in Chemistry in high school? Do you remember not knowing when you’d ever use that info again? Today is the day!!
The radioactive iodine breaks down as time passes. I will be periodically tested and once I am within the levels, I will be able to go home. I will not be able to be around children for 21 days. I need to keep to myself a few more days, then I can be around adults but I should maintain a distance-no touching. There are lots of other regulations but I won’t bother getting into them at this point…because, I might not even get there.
They did tell me that in the hospital I am not allowed to take a phone, tablet, or laptop. OH MY. I am not allowed to take cross-stitching. Anything that I touch or is in the room with me will have to be left there and destroyed. will They suggested a paperback book or a word find book. Thank goodness it usually isn’t more than 48 hours.
Remember I said that there is a fork in the road? I told you about one of the forks but I didn’t tell you about the other yet. There is a 50% chance that nothing will show up on this full-body scan. IF NOTHING SHOWS UP ON THE FULL-BODY SCAN, I will get the consolation prize and be sent home. I will not be able to get treated. The cancer will be allowed to grow. We’ll watch it with continued testing. At some point, I will have enough cancer in my lungs that breathing will become an issue. That might be in two years… it might be in 10 years. At that point, I will have the option to go on some meds with some pretty crappy side effects.
I’ve already told my kids, and I’ll tell you too. If the side effects are terrible, I might opt not to take it. It prolongs life but doesn’t cure anything. It matters where I’d be at this point and if I get the side effects as much as suggested on whether I decide to take it. I don’t want to live miserably. I am totally willing to extend my life…but I have no interest in prolonging my life in a miserable fashion.
So…when does this all start?? Who knows. The plan is for:
-my doctor has put in the request for the 30-day meds that will give me the rash.
-Once I get them I call my doctor and tell her I have them.
-They set up the appointments for all of the shots
-They make sure the radioactive iodine does is available
-They reserve a bed at the hospital.
-They let me know the plan and when I can start taking the 30-day meds.
Here is a glitch. Hospitals are still FULL in our area. There aren’t many beds available due to Covid. I can’t do this unless they can guarantee a bed and nurses to take care of me.
My doctor said that all of this planning, organizing, getting the meds, and reserving the hospital bed might take a couple of months. My doctor flipped the calendar and said, “Oh you might want to wait until after the holidays.” I caboshed that immediately. I can be on a diet over Thanksgiving. I can miss Christmas. I’m totally okay with that. I am just ready to take a step forward in treating this.
I do want to tell you…I am only considered treatable. I will live the rest of my life with thyroid cancer in some capacity. Even if everything goes as I hope and the 30-day drug helps my body be open to receiving radioactive iodine and I go through the treatment, this will buy me a big chunk of time, but it will not cure my cancer. My last treatment bought me almost six years of good living. I’m hopeful that we’ll be able to treat and I’ll get six or more years more.
Kalissa and I both left the hospital very hopeful and excited for the next chapter in dealing with my cancer. It was a long day on Thursday talking to our other kids, family, and friends…and now, it’s evening Thursday night as I write this and tell all of you.
This is not bad news…
I was getting tired of all of this hanging over my head. At least now we are doing something. I’m a gal who loves a plan and I always feel better with one, so this is good.
This does put a lot of stress on my childcare families. Finding childcare is always hard…plus I don’t know what days I’m going to need off making it doubly hard…and the tumor might not show up in the full-body scan and I won’t need the 21 days off. They have assured me that they will do whatever is needed. They are really a wonderful group.
My kids are all hopeful and already super supportive…I love them like crazy.
If you’re a prayer or a “good vibes” person, feel free to send some on my behalf. It would be so good if the 30-day meds would do their trick and we could treat this again.
I promise to keep you up to date. I know many of you worry and wonder about me. Please know, right now, I am good.
Oh, my goodness, 100 comments so far!! A wonderful support group. Thank you for sharing with us.
One foot in front of the other…we carry on xoxoox
Jo, I’m rejoicing with you that you’ve received some a course of direction for next steps. I like your thought process; and have expressed similar opinions. I am asking Jesus to keep providing you and your family peace, praying for ongoing wisdom and discernment for your medical team, for absolutely clear directions, strong health, and multiplied blessings.
Praying for you and your family!
Prayers for you, Jo!
Will be steadfastly praying for you. We would all wish for trials to be over and done but many times we have to stand firm. Joshua was told, “Be strong and courageous ” and I will pray this for you. We love you dearly ❤
Thank you for sharing. Adding my prayers to all the others. We faithful readers are behind you 100% of the way of your journey.
Prayers for you Jo. Prayers also for your family as they support you in many different ways.
I wish you well .
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Glad you are going to Mayo, they are amazing there.
You’ve been through alot and I just know your family and all of us followers are praying for the best turnout.
Sending prayers right now and in the days ahead, for you and your kids, too. Setting the intention for rapid implementation of the treatment plan and positive results that exceed expectations. Take care, Jo! ❤️
You are a persevering woman Jo and I admire that and your strong convictions and strength. I am sure you are somewhat emotionally drained. As a group, many prayers are being said on your behalf and as you walk with Jesus, may He support and strenghten you more each day. He is your Rock and you need His support and love. I pray for you to lean on Jesus for his wonderful power of love and unfailing grace. There are many stories of healing all around us and you can be one of those stories. Stay strong!! Keep your Bible near and lean not on your own understanding. I also pray for your doctors to have the correct knowledge and wisdom to find the right direction to take in all avenues of your care and decision making. Love to you and your family.
Lots of prayers for the treatment plan to proceed as you hope and in a speedy manner.
Sending prayers for you, your families and your doctors.
From the heart, Marilyn
Good vibes, prayers and thoughts are coming your way to get you through this. Your positive attitude will help so much and Mayo is the right place to get the treatment you need. I’m so glad you are open to sharing all of treatment with your family, friends and readers. I think it helps take some of the stress away and allows you to focus on getting better.
Well, Jo, I’m sending “good vibes”. I hope it all goes swimmingly and you don’t get real sick on your way to better health. You have too many little ones around that you need to see grow up. Best of luck!
You are such a look on the bright side person,with a very loving family I feel you will do great! I Love reading your blog,you are so open and honest and I feel like I know your whole family.I wish you thee very best!
Thank you for taking time to share what you found out in your recent doctor visit. You have done so much for call of us. Now it is our turn to support you and pray for you. Count me in as one of your prayer warriors. ❤
Prayers are being sent! You share so much and so openly. God bless you, your kids, family and friends. Know you have your blog friends backing you and praying for ya. Rest this weekend – stitch, stitch and stitch some more!
Thanks so much for the indepth update! Prayers going up for from Ohio
Jo no matter what happens I know you will get through this with your usual grace and charm. You have what is needed to face things head on with the support system you have with your family, friends and all of us blog friends. U of M also has the special pharmacy, they wrote for a grant for me to be able to get a special med after my back surgery. Even with my insurance paying for it my copay for the 3 months was the $1000 grant and $600 I paid. My thoughts and prayers are heading your way.
Appreciate the indepth update Jo! Prayers going up from Ohio for speedy approval and implementation of the 30 day drug!
You’re a fighter and you have the strongest possible support group of family and friends praying and pulling for you. You have a fight ahead of you but if anyone can handle it with grace and strength, it’s you. Prayers coming your way from CT.
Others have covered it pretty well. You have moved to my everyday list. Blessings Jo.
So glad you found out where the cancer is. I’not happy at all that the cancer came back. But I know the not knowing was worrying you even though you didn’t talk much about it.
Praying for you and your family always. Keep on trusting the Lord Jesus to bring you through.
Praying.
Jo, we will be keeping you in our prayers. God has a plan for you. He will be there every step of your journey. God sped your journey and heal your body along the way.
Prayers being sent.
You will be in my prayers.
Chiming in to let you know I will be including you in my prayers and sending up healing thoughts. “All will be well, all will be well…” so went the prayer of St. Julian–I’m not Catholic but I find this so comforting.
Dearest Jo, you are such a strong and caring woman. Let all the prayers of your family and your blog readers give you added strength and know God does hear prayers.
Sending love and prayers for all the steps to be in order as you start this process again. God bless you and your family as you travel back and forth for appts and procedures. For sure, take a couple of books and perhaps you will sleep part of the way thru those 48 hrs.
I believe in the power of positive thinking! I’ll be one of the many people rooting for you to beat this. I agree with you that having a plan is so much better than the waiting.
Hugs
Everyone says it all so well, Jo. You are loved and prayed for! I do want to add another thought….if you do progress to the isolation in the hospital perhaps you could take a prepaid phone so you would have contact with your family. They can have data loaded on them too (or it could access hospitals WiFi perhaps) and this would provide you with contact with others (FaceTime?) as well as entertainment reading blogs, etc….
I suggested a prepaid phone because they have inexpensive models and thus could be destroyed after use.
Jo, I echo the comments of all who have committed to uphold you in prayer. May the Lord bless and strengthen you and your family; may He give wisdom to all those who oversee your care and treatment. Your positive outlook is an absolute gift and YOU are an inspiration in so many ways.
Sorry to hear you’re going through this but I can relate. I’ve been deaaling with metastasized breast cancer for 20 Yers!! Yes, 20. My cancer spread to my lungs and bones. While over the years I’ve had to have hip replacement and a few other surgeries to deal with the bone weaking from treatment, they keep finding new treatments to keep my cancer under control. So, my point is, don’t think this is a death sentence because it may very well just be a chronic condition you have to deal with for many years. Also, can’t you get better insurance? I guess I’m lucky to live in NJ where the laws are strict and insurance is mandated to cover treatment.
You are in my prayers…. you are an inspiration to all of us!!!!
Prayers, good vibes, hugs, you got it all going to you.
And this is why folks need to get COVID-19 vaccinations. Silly people are messing up the medical system for people needing services and care. You are now a statistic. God bless you and your family. There are medical miracles every single day!
Prayers for you and your family Jo.
You and your family have been and will continue to be in my prayers. I am so grateful in so many ways that you have shared your journeys with the world. It has been so helpful to me in my life.
I will definitely pray for you Jo! You are so strong and so open (I am the same way)…that stoic Minnesota upbringing (I was raised there also) is showing! I so agree with you about quality of life. I did want to suggest that maybe your childcare parents could make arrangements with each one taking a day off to take care of all the kids…if they rotated, it wouldn’t be such a burden on one…of course, if they can find someone to babysit all the kids, that would be best. I know you have a great support system with your kids and that is something to be so thankful for! You’ve done a great job raising those kids!
I have been and will continue to pray for healing, strength, wisdom, and comfort.
You are so strong and courageous. I will pray that you are able to receive the full treatment so you can continue to be a blessing to your family and friends for many more years. I am so encouraged by your attitude. You are a strong faith-filled woman.
I am glad you finally know where the cancer is and that there is a plan in place. I am adding you to my prayer list. Love following your blog.
I’m praying for you Jo. You have always been an inspiration for me.
Jo – I read this post over the weekend and I’m having a hard time finding the words to say! I know you’ve wanted answers. I’m just sorry that this was your answer. I’m always so appreciative that you share this with us. I know other people are in the same situs as you are. I know your information helps them. Thank you for sharing. Please know that I keep you in my prayers!
Will keep you in my prayers. Be strong.
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Jo, You are one of the bravest gals I know of! I wish your news would have been different. I am cheered by your attitude and hopeful for your treatment and prognosis. I will add you to my prayer list and keep at it during the coming days and months. I know your family and friends will keep you wrapped in lots of love and support; please know your loyal blog readers will do the same! Sending lots of love, hugs and prayers, Cynthia
Jo, I have been praying for you and will continue to do so.