So It Begins…

Yesterday was the start of my test week with my thyroid cancer.  If you’ve been following along, you know that we found out in October that my thyroid cancer has spread to my lungs and we’re hoping to find a way to treat it.  Over the last month, I have been on oral chemo trying to weaken the tumor and aid it to be receptive to taking radioactive iodine.

This treatment is a bit of a “Hail Mary” effort.  There is only a 50% chance of it working but we’re giving it the old “college try”.  I’m very hopeful but also realistic.  Even if it does work the chances of it completely eradicating the cancer are not probable.  This is a treatment to buy me some time and maybe let me see my grandkids get a little older.  That would be awesome.

People get frustrated with me when I say this but right now, my goal is to make it 61.  My mom was 61 when she passed.  One time I said this to Kelli and she got made.  She told me I needed a higher number.  I smiled and told her that I was willing to set a new goal if I make it that far…and that’s the attitude I’m having with all of this.  This attitude helps me remember to take each day as a gift.  I don’t ever want to forget that.

For those wondering, I’m 56 now.  I just had my birthday in December and I’ve been dealing with follicular thyroid cancer for 6 years.  Outside of feeling crappy for a month when I was first treated, and feeling crappy here this last week, I’ve felt completely and totally normal through it all.  No one seeing me on the street would ever know I have cancer.  That has been a real blessing.

For that reason, many people have termed Thyroid Cancer as the “good” cancer to get.  That can be true for people who have Papillary Cancer.  Their cancer is the stories you hear about people who get one treatment and then they are done.  That’s not as likely to happen with people who have Follicular Thyroid cancer.  It can, and does, but the people who have complications like mine, don’t have Follicular or the other two more rare forms.   Happily, Papillary is much more common so most people don’t have the ongoing hiccups as I do.  I say this as a reminder to anyone who gets a cancer diagnosis to not automatically think, you will have to go through what I am doing.

Yesterday was my first trip to Rochester to the Mayo Clinic.  Many of you who have read the blog for a long time might remember that I was traveling to LaCrosse, WI for previous treatments.  Well, my case is past their abilities so I was shipped to Mayo in 2018, went back to LaCrosse, back to Mayo in 2019, and am now permanently here.  Previous to this I had doctors who specialized in Endrocinology but did not have the Oncology specialty to go with Endocrinology.  My current doctor does.  She is one of two at the Mayo Clinic.

This week I have a series of shots and scans.  I might end up having to take an evening blog post off as I don’t know if I’ll be back in time to write.  So, if I miss a blog post, no worrying one your part.  I’m okay.

A kind blog reader sent me a gift of money along with a note encouraging me to stay in Rochester at a hotel and not make the daily two-hour commute to Mayo.  It was so sweet and so kind but unless the weather is bad, I’m going to commute.  I thought about it long and hard, but I’m a homebody.  My home is such a comfort to me.  Being able to come home reminds me that I am more than just a medical condition. It reminds me that there is so much to live for.

There are some other considerations too…Rosie, my beagle.  She doesn’t do the best with anyone else but me.  Yes, she can do it, and will if need be, but she loves me best.  My kids will all tell you that too.  (This is a picture of Rosie from two years ago when she was just a pup)

There is the blog…it’s so much easier to manage from my home computer.  Yes, I can take a laptop, but I hate working on it that way.  I know you’d all be fine if I was gone a week but it brings normalcy to my life…and right now, normal feels REALLY good.

I can still see my family in the afternoons and evenings.  If I am able to take the Radioactive Iodine at the end of the week, I won’t be able to see anyone for a couple of weeks.  That’s no fun.  I want to soak up what I can of family time.  I won’t be able to see the grandkids until February.  I know that’s regular for some grandma’s but for me, that is A LONG TIME.

I love my own bed.  I love being about to get a couple of things done around here.  I love getting my own mail.  There is just so much to love at home that I would miss at the hotel.

Then there is my diet.  That is the biggest factor in this all.  Right now, I can’t eat anything with iodized salt in it.  That includes things with naturally occurring iodized salt.  No milk or dairy products…limited meat.  No fish. No processed meat for the most part.  I can’t eat at a restaurant as there is no way to know what type of salt they are using in the foods they serve.  Nothing with sea salt.  It’s very fruit and veggie-based.  I’m doing really good with it this time around but one of the reasons I’m doing good is that I have my home base to work from and have my safe food here.

I’ve found I love this…

Thankfully it’s portable and I’ll be bringing some with me as I travel.  Yep, I have to pack anything I eat with me as I commute.  That will keep me out of the fast food and convenience stores.

I’m so appreciative of the gift the blog reader sent to help cover hotel expenses…but for now, I plan on coming home.  I am planning on taking an overnight bag, putting it in the car with enough food for a day, and if I’m tired or my mood changes, I’ll stay a night.  The kids have all been helpful and have offered that they would come to get Rosie and take care of things if I change my mind and stay.

I have audiobooks downloaded and podcasts set.  It will make the drive go easier.

My Sunday drive was great!!  Here I am up and at ’em ready for the drive.  The rash on my face is so much better.  This is the best it’s looked in three weeks.  I’m so thankful for the steroids…

I stopped for a bathroom break along the way and pulled into the parking ramp with perfect timing so I’d make my appointment.  I could have parked on the first floor.  but I went up a level so I could park next to the elevator.

I crossed the street through the subway like always.  The elevator doors opened and the entire building was locked.  Remember this was an 8 am Sunday appointment.  UGH.  What was I supposed to do??

I went down the hallway in a different direction only to find more locked doors.  There I found an intercom to security.  I explained that I had an appointment.  The guard said that I was to go to the lobby and could access from there.

I turned around.  I retraced my steps but was stumped on how to get to the lobby.  There were no stairs.  UGH.  I ended up outside back at the ramp, crossed the street and the doors to the building were locked there too.  UGH.

I went back across the street.  I took the elevator back to that security button as that was the only “person” I could figure out who to ask.  There was literally NO ONE around.  UGH.

Now I was late.

I got to the security intercom and said again why I was there.  The guy said, “Wait here.  I will give you access through this door.”

The door opened.  I got to the lobby.  I did the screening.  I got in the elevator, got to my check-in.  This was the waiting room…

This was the reception desk.  Oh no.  Did I get the right spot??  Just then a nurse came around the corner and said, “Name and birthdate?”.  I replied and she smiled.  It was only me and her in the entire place.  No activity down the halls. NOTHING.  If you’ve ever been to Mayo Clinic, you know this is REALLY weird.

After chatting with her I found out she is an on-call nurse.  She comes in when there is a treatment like mine.  I was the only person who was coming in on this day.  I felt so bad making her come in.

I tell you this as I want you to know, the protocol that I’m doing with all of this is not typical.

I was in and out in 10 minutes and headed back towards home.  I was home by 10:30 am and had the day to be home and do my thing…so much better than being bored in a hotel room trying to cross stitch with bad lighting in an uncomfortable chair.

On Tuesday, I have extra doctor visits so Kelli and Kalissa are coming with me.  Then we’ll have some extra ears along to listen to whatever is next.

I’ll know on Wednesday if they will be able to treat my cancer and if the 50% chance of it working went my way.  I’m anxious to know.  I’m a girl that loves a plan…no matter what the plan is.  Plans make me more focused and comfortable.

A huge thanks to all of you who have traveled this path with me.  As of your reading this, I’ve already been to Rochester back and forth twice.  So far, so good.  Many thanks for your thoughts, prayers, and kind wishes to both me and my family along the way.

Many thanks to those who have expressed concern about me driving, but truly, I’m totally happy to be doing it.

Like me, I know you too are anxious to hear how things go and I promise to keep letting you know when I know.

66 thoughts on “So It Begins…”

  1. You have the same attitude I have when facing a dilemma. I too just had thyroid removed. Carcinoma with clear margins. Awaiting approval to go to Loma Linda. Radioactive iodine is treatment of choice. I had that 40+ years ago when my thyroid went overactive. So Thyroid meds are not unknown to me. I pray that you are “the one” that the treatment chosen works for. Prayers will be on the wing for your success!! Many hugs and blessings from me to you.

    1. Keeping you in my prayers that this treatment is successful for you and that you are safe while traveling back and forth.

  2. Best of luck, your positive attitude is amazing and I so admire you for it! I’m sure it helps you get through the darkest hours. My thoughts and prayers are with you!

  3. Thanks for keeping us up to date on where you are with your treatments. We will wait impatiently with you for Wednesday to find out what the answer is! You’re in our thoughts and prayers!

  4. Thanks for being willing to share this additional ‘episode’ with your followers. Prayers that all goes well. I am interested in seeing what new crafts you will be doing at age 81.

  5. Cheryl in StvPaul

    Prayer warriors are armed and ready. We care so much for you and your family. We have you all covered with love and prayers.

  6. Continued prayers. If a positive attitude would be the cure, you would have this. I hope a combination of your attitude and the medical treatment will do the trick.

  7. Visiting mayo for an appointment on a weekend is so different than a weekday. when I had mine they gave me specific instructions as where to go to be let in. Still spooky though. I keep you in my daily prayers and I am so with you, I would rather be home! I hate hotels even for fun, lol

  8. Your comment about the locked doors reminded me of a continuing ed meeting I went to at Cleveland Clinic on a Saturday. My husband went along. He was told he could find a cafeteria in the main building. He had to walk a long distance around the building to find an open door. Those places lock up tight on the weekends. Thanks for sharing your story, and know there are many praying for you. I can understand your desire to be home when you can.

  9. Praying for you! I love your attitude. You must be a Christian and have the Peace of our Lord in your heart. God bless!

  10. Sandra A Lanter

    I pray for your health to turn good….you are in the best place, when you are at the Mayo Clinic. Bless you.

  11. Hi Jo,
    I’m praying for you- as we all are. I’m praying for awesome reports and for you to be well. Only God knows the number of days He wants to Bless us with.
    But it never hurts to have extra prayers going up for you. We travelled to a town called Marble Falls. I was so excited today. I looked in two stores for the magazine with your quilt on the cover and finally found one. Hidden in the center aisle at the grocery store. I did a happy dance and asked the cashier to gently put it in its own bag. I’m looking forward to seeing more of your quilts in magazines- so I’m praying for your swift and complete recovery.
    God Be with you and the drs.

  12. Keeping you in my thoughts and prayers. It’s great to have extra “ears” for appointments. Hope your weather cooperates for the driving!

  13. Thanks for letting us all “in”, Jo. I love hearing all that happens in your family and crafting so this is important too.
    I totally relate to the need to feel normal and have your own things around you. Our son has been hospitalized Many times and sometimes it was just good to go home and do dishes!
    My Mom died at 63 and I said I hoped to make that. I just turned 68!
    I will continue to pray for you and your family.

  14. Jackie Trembley

    Jo, best wishes for a positive outcome. I’ve been praying for you daily and will continue to do so. You’ve brought me much joy over the 12 years I’ve been reading your blog. I hope my prayers can do something for you.

  15. Beryl in Owatonna

    Praying for you, Jo. He will continue to give you His peace.
    I have been to Mayo once for an eye injection, it is overwhelming. I was so happy to have my brother with me. The rest of the injections will be done here in Owatonna, so I won’t have to go back over there.

  16. Carmen Montmarquet

    Thanks for keeping us posted, we do worry you know!!! Even now you are always trying to help others as you are explaining all you are going thru? You are one Amazing Lady!!

  17. You are so sweet to make the time to keep us all updated.

    Praying for your treatment to be the best possible! Hugs to you and your RN girls from an RN girl ;-)

  18. Diana in Des Moines

    There are so many of us praying for you, I can’t help but think you’ll have good news!
    We would totally understand if a blog post is left out. I had stage 4 malignant melanoma in 1986 so have a good idea of what you’re going through.
    Just remember we are all behind you and keep up your good attitude!

  19. You are in my prayers. Love your spirit regarding this whole thing. I hate the C word. My Grandmother passed at 68 and my mom and sister passed at 70…hate cancer. I know what you mean,,,if I can make it past this or that age. I’m playing that game myself. Bless you and I’ll continue to pray.

    1. You are going to the best place for care, you have a wonderful family for support, your positive attitude is amazing, and you have a worldwide prayer team. Continued prayers for you!

  20. Arrowhead Gramma

    Jo, My prayers are with you and know that God is by your side each and every step of your journey. May you feel His healing hand and be comforted and given peace. God never gives us more than we handle. Take care and remain Kramer Strong!

  21. I will continue to pray for you and your family. We are all in God’s hands and no one knows how long our journey is and when God will call us home. Besides praying for good health for you and your family I will continue to pray for you to enjoy a long and gratifying life.

  22. Being able to take Kelli and Kalissa along is great! I know someone with cancer who takes a daughter and a tape recorder with her to important visits like yours. She says studies suggest that people under stress only hear or remember a quarter of what is said so it is helpful to have a witness . And she can listen again later to hear exactly what the doctor said. I like your attitude and think its applies to all of us: Make the best of whatever time we have now. And I agree, being home is best if possible. I love being with my dogs and try to not be away from them if at all possible. Plus, as you say, there’s the diet and there’s so much more to do at home. Perhaps your kind blog reader would be okay with you using the gift towards gas instead?

  23. Hi Jo,
    Being as normal as possible is key! As normal as you can be Keep positive thoughts going. Keep family and friends near. Farmgirls are tough and you have tons of support! My prayers are with you and your family. Love, L

  24. Judith Fairchild

    Praying for you Jo, being able to drive yourself back and forth to Be Home. I get it totally. There is no bed or pillow as comfortable as your own. And being able to eat what you want when you want it. I’m with you 100%. As to anything else we all need to live for today and enjoy it. Keep going and trusting Jesus for everything.

  25. God bless you Jo! Prayers for a full recovery. I certainly appreciate you upbeat attitude. I’ll be praying for you.

  26. You’ve already shown us you are a superhero. That status means you get to decide what works best for you. May God bring you good news and continued strength.

  27. Thinking of you and hoping for the best; you deserve many more years. The world still needs you for all the things you do for others, and for the example of your great attitude.

  28. Thank you for taking time to keep us posted as you’re comfortable & able. You are a goodie, as my FIL used to say, & make the world a better place just by being in it. Continuing to channel virtual hugs and healing thoughts to you.

  29. I totally understand the plusses of being able to come home and do the normal things. It is wonderful that if you need to stay overnight in Rochester, it has been covered. Glad the first trip the roads were clear and it’s a simple drive. Wow, I’ve never seen the hospital so empty, kind of eerie. My prayers are with you as you travel this journey. I pray for health, healing and a long life.

  30. Thank you for the update. Praying for God to completely remove all bad cells in your entire body & praying for God to please restore & renew your health entirely & in every way. Praying for safe travels & your medical team as well. Praying for you & each member of your loving family. You are loved!

  31. I don’t even know what to say, but giving a hug from far away and an inspirational bible verse, “ Though a host should encamp against me, my heart shall not fear: though war should rise against me, in this Inwill be confident. “ Psalm 27:3

  32. I love your attitude! Seeing the picture of the Mayo Clinic waiting room brought back many memories since I worked there for many years. You are in my prayers for safety on the road and for the good outcome and healing.

  33. When I had breast cancer in 2018, I was lucky to only receive radiation and no chemo. However, a normal visit would be 5 min from my home. But the clinic was closed and I had to drive 45 min away for each treatment. Thankfully it was only 18 visits and I did it. It does take up your day. But lots of books to listen to and a plan to keep.

  34. Hi Jo, What a journey you are on. Your perspective is truly amazing and inspiring. Do take good care of yourself which seems to be what you’re doing. I look forward to tomorrow when you update us with the results. Prayers and love, ~Linnea

  35. Sandra Davidson

    Dear Jo you are such a brave and joyful person . If more people were like you the world would be in better shape. I have had breast cancer so I know how important a good attitude is to keep you going and also have the grandchildren card.. I certainly will pray that everything goes smoothly for you.
    God Bless from Sandra from Canads

  36. Wishing you all the best, Jo. That diet would be extremely difficult (in addition to other things). That was a very weird experience at the Clinic. I would have thought for sure I had the wrong day. So glad it worked out!

  37. Having my daughter go with me to oncology appts – so important. Have only been to one without her, and that was because of covid protocols in place. So glad your daughters are able to go to advocate and support you, Good thoughts your way.

  38. Celia E Ambrose

    Praying the treatment goes well and does what it is supposed to do. Prayers for safe travel and successfufl outcome. I agree, home is best. May God give you rest when it’s needed, and a few things for fun when you have the energy.

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