Hello friends…I waited a day to write this as the last test result was still coming in…Here’s the news.
Friday morning, my daughter Kalissa and I left at about 7:20 am. We were headed to my three-month check-up. I was to have MRIs and CT scans along with bloodwork. We live 2 1/2 hours away, so we try to do it all in one day…tests in the morning, doctor in the afternoon.
We were already a little anxious after the results from my scalp biopsy came back positive for cancer in early March. We knew there would be lots to discuss with my doctor.
I got dropped off for scans…I was in the MRI machine without contrast, was immediately taken to CT and then sent back over to MRI. Apparently, I have to wait in between MRI scans so the rods in my back don’t heat up too much. Hmm. When I checked in, the gal at the reception desk said, “I don’t think anyone has ever had such a long list of stickers”. Yes honey, I know I’m a bad case. There were 4 CT scans…and 4 MRI scans. UGH. That’s a lot of lying still.
After 2 1/2 hours I was done and Kalissa and I were off to kill time.
Mexican food it was…I love Mexican. Put in seafood form, and I’m all in!!
We had about 4 hours to kill. I am not a shopper, but I told Kalissa I wanted an Iowa Hawkeye T-shirt… preferably women’s basketball. Other than that…I didn’t need or want anything.
So we went to Sheels. I ended up finding a shirt. I almost choked at the $38 price tag. But…this was a one-day thing, and I really wanted a T-shirt. I splurged and got it.
From there, it was Target and then Costco. I had never been to Costco, so that was an experience. Kalissa was so happy to be there…me being single buying in that size of bulk is a lot!! It was fine…it was fun to see Kalissa happily shopping, but I didn’t get much.
Then we were out of things to kill time, so we headed to the appointment to find out about my scans. During the day, we had gotten results via MyChart, but it’s always hard to know how to interpret them. We were excited that there were no findings of cancer in my brain via the CT scan. The other scans…we weren’t quite as excited about.
We checked in at 4 pm for my 4:20 appointment. At the time, I asked how far behind my doctor was. She checked and said one hour. We sat in the waiting room and were called back at 4:30 or so. I told the gal who took me back that we heard my doctor was running late. She said, “Ya…I’m guessing it will likely be an hour wait.” We were in the room…about 30 minutes later, a nurse came by. She said, “You aren’t forgotten. Your doctor is running late. I’m sorry to say, it might be an hour before you see him.” My doctor is always late.
I don’t want anyone to say anything about it. He is worth the wait. He is kind and so knowledgeable. We know he will be late and plan for it.
The doctor finally came in. He checked my scalp. He looked at the scans with us.
I could write a whole bunch here…but I’m going to it point blank. My news wasn’t good. The scans showed spots that were smaller had grown. Scans showed new things. It’s time for the medicine with the harsh side effects. This med covers it all. There will be no surgery for the spots on my scalp. The meds will cover that.
The medicine is called lenvatinib. Here is a list of the side effects when it is used for thyroid cancer patients. My doctor warned of the following side effects.
-severe fatigue
-diarrhea
-mouth sores
-lack of appetite and weight loss
-elevated blood pressure
Most people get these…there are other side effects that aren’t universal.
There was one test number that wasn’t back yet. That was my thyroglobulin tumor marker. My doctor was worried about it. He was worried that being my cancer had suddenly turned aggressive, I might have switched strains of thyroid cancer. Right now, mine was the follicular kind. He was afraid that mine morphed to anaplastic. This kind is REALLY bad. Typically, death within a year.
That test result would take a bit…ugh.
In the meantime, he wanted to redo the genetic testing on my cancer. He was hoping some other mutations might show up that weren’t in the previous genetic study, thus offering more treatment options. So we got that going.
He prescribed my icky meds. That will be a fight with insurance that I will win, but it will happen over the next week or two. Apparently, a pharmacy will overnight the meds to me once they are approved. I have to be home to receive them. Then I contact my doctor and start taking them.
Two weeks from that day, I have to go back to the doctor. I will continue to go back to the doctor every two weeks for two months.
I have to take my blood pressure in the morning and at night. It is certain to get out of whack. It does for everyone.
All of this is contingent on how the final tumor marker test result came back. That result wasn’t expected until Monday or Tuesday. If the number went up, it meant the spread of cancer. If the number went down, I likely had morphed into the anaplastic form of thyroid cancer. That would mean the year of life expectancy. If I had that, more meds would be added…more with other harsh side effects. So we left, hoping that my cancer number was high. It so weird…we WANTED more cancer.
I will be on these meds for the rest of my life. These are the same meds that I told my kids I would try. If the side effects outweigh my quality of life, I will quit them.
I ended up going for coffee with a friend of mine on Saturday morning, and while we were having coffee, my phone dinged, and it was the test result. I have more cancer, and the number rose. WHEW. No anaplastic thyroid cancer for me (Yet, anyway)
So I have lots of new stuff to navigate. The kids are coming home next weekend for Easter. Even if I get the meds before then, I won’t start them until the Monday following. I want to monitor and watch things on my own.
I’ve gotten some get-well cards from blog readers…THANK YOU so much. I appreciate more than you know. I am so blessed to have so many wishing me the best.
So friends…this was not the news I wanted. It wasn’t the news any of us wanted, but here we are…and it’s time to make the best of it. My hope is to still keep the blog the same with just as many posts, but we will have to see how I feel. I won’t disappear, maybe just a few less posts. I know you will all understand if that has to happen.
I’m not mad or angry about any of this. With my cancer history, our whole family knew it was coming…we just hoped for a little more time. I’ve had a good ten-year run with thyroid cancer, and I think I might be able to sneak out a few more years.
P.S. We didn’t leave the doctor’s office until almost 7 pm. We didn’t get home until after 9 pm. It was a long day filled with a LOT of information. I was so tired and slept in on Saturday.
God bless Jo, we are all praying for you
God bless you. We will keep praying for you.
Love and well wishes to you, Jo. With all my heart.
Jo, you have a lot of prayer warrior readers and I hope you can feel the love.
Jo, my prayers continue to be with you each and every day. May God watch over you with His healing hand. Take care and know you are loved by so many.
You certainly are in my prayers! Chemo in any form is not fun. Hopefully your side effects will be mild. Fatigue we can take…the rest of the stuff not as easy to deal with. Just remember to take care of yourself, even if it means saying no to helping as much with the kids.
So much love and appreciation for all of your sharing with all of us. Prayers are lifted for you and your family and care givers. Post or don’t. We love and understand. You will always be in our hearts throughout this.
You are in my prayers! Your family also. How do I get your mailing address? I’d like to help with your future visits. Thank you. Hugs,
Thinking of you and praying for you and your family. You are a warrior and we all know that you will keep fighting this awful cancer. Just as a side note my mom had ovarian cancer which was diagnosed at stage 4 with a short lifetime predicted, the doctors were wrong she lived with it for 10 years taking many types of awful chemo. I pray that you beat her timeline with this new medicine.
We all love you.
Sending you big hugs and lots of prayers.
God bless Jo. You are absolutely being lifted up in prayer. You and your family. Please know that you really are an inspiration. Throughout everything you’ve been through you handle it all with grace. You are a very strong woman. You take care of yourself and don’t worry one bit about the blog. Love from California.
hard to hear. hard to share. hard to read. prayers to you and your family-
counting your small blessings.
You are my best friend I’ve never met. I’ve followed you for a long time. I cried when I read your news. I just want the best for you and pray the chemo helps without side effects too terrible. You are loved and wished the best. Always in my prayers.
You are my best friend also. I wait for your name to pop up on my screen every evening. And then I read your message and I feel like I just had a cup of tea with my Best Friend. You light up my life.
An exhausting day of blech! I’m sorry Jo. You’ve come through so much and your attitude/mental health has served you so well as it will continue to serve you whatever the outcome short/long term. (so much cancer in my family and 64yo me with none to date!).
I continue to be in awe of all your share. You educate so many readers every time you share. I know your RN daughters think the same thing.
Hugs to you and the family.
So sorry to read your news. I will send healing thoughts, and hope your side effects are mild.
I hate to hear this, Jo. There are exceptions to every case and only God knows the number of any of our days. Prayers for you.
So sorry to hear of this medical hurdle you will be facing soon. I just got off medicine with fatigue as a common side effect. It was really awful as I’m usually a very active person. So now you will be taking medicine with fatigue as a side effect and I want to encourage you to do what you can, but let go of your expectations. Take Care Jo.
May God hold you in the palm of his hand. Lots of prayers are being sent up for you and your family, You have been such a great inspiration to me and I admire your resiliency. I always look for your posts before opening any other mail. I know you will meet this next challenge with grace and steadfastness like you have always done. May God’s mercy and grace be your constant companion. Take care of yourself and let everything else slide. Laura Portale
I am so sad hearing your news. I will be praying for you and your family. I admire how strong you are going through all that is happening in your life. Please take good care of yourself and let the people around you take care of you too.
Jo Kramer
111 – 2nd Ave N.E.
Waucoma. IA.
52171
I’m grateful for the encouraging parts of your day, for your willingness to share, and for all the days before you. May God give you a multitude!
So sorry, Jo. Keeping you in my prayers. Don’t worry about the blog–we all understand.
I pray that God blesses you and your family ! I know God is in control but it’s hard to let go of the reins sometimes .. prayers for all ! I’ve loved reading your blog for several years now ! I pray little side effects !
Definitely not the news you want to share, but you handle everything with such grace, Jo. I continue to pray for a peaceful walk as you continue your journey. I pray you can handle those darned side effects. You are blessed with the support of such a great family. You will do this.
God bless and keep you.
Cancer sucks. It has harmed my family too.
I will pray for you and your family. You have snubbed cancer before and I think you can do it again :)
Agree with every thought already expressed here. You are so loved by your readers, and I hope all that love brings you courage to face treatment and its side effects.
Prayers for you my friend! And for your family!
As always, continuing to keep with you in my thoughts and prayers.
“You are loved with an everlasting love”.
Much love and prayers
Prayers continue. You and your blog are a blessing to so many. Virtual hugs to you and your family.
Dear Jo, This is hard news but, even so, we know the other options were harder. I’m grateful your hard news has a “good” side to it and that your positive spirit is undaunted. I will be praying for maximum results and minimum side-effects from those new meds! You are loved and cared for deeply by many and will have lots of support through this next phase of your journey. Hugs, Suzanne in Michigan
So sorry to hear this news. Prayers will continue for your recovery. I start my day with your blog. This makes me very sad. Love…
Sorry to read this, Jo. Praying for grace as you go through this and the medication will be effective and the limited side effects.
I have only commented one other time, but I love you blog and read it every day. I love you and your family, too. This was very hard news, Jo, but I guess it could have been worse. You are in my thoughts and prayers.
You are in my prayers and have been for a long time. You are an amazing warrior. Not the hawk kind, but the angelic kind. You amaze me with your will to keep going. You never seem to feel sorry for yourself! You keep going despite all the hardships you have endured. That is why I think of you as a warrior. I am so very proud of you. I have bragged about you to others! Keep going!
Sending prayers. Can you say which kind of gas cards you’d prefer to help with your travels every 2 weeks? Hugs for you.
Thanks for thinking of me. Kwik Star is the gas station in our area that we often stop at. Caseys is okay too.
Oh Jo. Well…. you are the strongest cancer fighting lady I know. You got through the anxiety and anticipation of Friday, and you’ve come out the other side. That was a huge hurdle, and you completed that task. It’s behind you. Now you have some facts to go on, and you’ll continue to go foreword one day at a time with good doctors, a fantastic family and many many MANY fans who consider you a friend! We lift you up with prayers, happy thought and encouragement. Please let us know what we can do to help.
Oh Jo. Well…. you are the strongest cancer fighting lady I know. You got through the anxiety and anticipation of Friday, and you’ve come out the other side. That was a huge hurdle, and you completed that task. It’s behind you. Now you have some facts to go on, and you’ll continue to go foreword one day at a time with good doctors, a fantastic family and many many MANY fans who consider you a friend! We lift you up with prayers, happy thought and encouragement. Please let us know what we can do to help.
Prayers for you and your family. I am sure you remember having some of those side effects before and it wasn’t easy, but you are strong and always keep going. You can be so thankful for all the love and prayers from your readers, but especially love of those wonderful children who are always there for you.
I hate seeing anyone go through the cancer experience but you certainly have a good attitude that will hopefully help you as you continue this journey. Prayers that you don’t suffer horribly with the new meds and you get many more years to spend with your loved ones.
Jo, you have NO IDEA how many people are praying for you and your family and your doctors. Prayers for strength, prayers for wisdom, prayers for patience, prayers for healing, all kinds of prayers lifted up for you all. I hope you can feel them. Take care.
You have such an indomitable spirit. I’m amazed and so impressed by your strength and courage. Your love for your family shines through always. We are all praying for you.
Jo, I’m so glad that Kalissa was able to go with you to those appointments. What a long day you both had. I feel that your doctor is one that you like and trusts, what a gift for you and your family. I shall continue prayers for healing and comfort as you continue on this journey. We are here for you.
Your strength and grace in facing yet another round of health reports is admirable. Sending prayers for minimal side effects and continued joyful moments with your family.
Prayers continue for you Jo and your family. Your family and many productive interests keep your life balanced. God Bless.
All the prayer storming heaven for you! Mine will also be for lesser side effects. Do not worry about your blog, I for one would rather hear from you less if it is too hard for you or causes you worry. Once a week update would probably fine for most.
I’m continuing my prayers for you. Prayers for healing for you and that the side effects from the medicine are minor. Prayers for peace, for you and your family. Prayers for wisdom for the doctors. And prayers for patience for all involved.
It is so nice that you have your children as a wonderful support system.