We Have a Plan: Cancer Update

Here is the latest update on my cancer journey.  As most of you know all fall I’ve been working on finding out what is making my thyroglobulin tumor marker rise.  It was suspected that my thyroid cancer moved to my lungs and at the beginning of October, it was confirmed that I do have a tumor in my lungs.

On Thursday of last week, I got a call from the company that makes the chemotherapy oral pill.   They decided that they would send me the medication for free.  YAHOO!!!  (Please if any of you have medication that you can’t afford, contact the manufacturer.  There are often programs to help you afford your medication)  They overnighted the medicine to me and I got it on Friday…Here is how it came…

All of that for one bottle of pills.

My doctor warned me I couldn’t start taking it yet.  My appointments had to be scheduled first.

So Thursday afternoon over naptime I messaged my doctor and said the medicine was coming.  They started putting my appointments together.  At pick-up time, my phone rang but thinking it was one of my kids and a grandparent was here to pick up, so I ignored the call.  There was a message from Mayo Clinic.  They had scheduled my appointments.

I went to look and my appointments didn’t make sense at all.  I messaged them and asked for clarification.  The next day I got a message that more appointments were scheduled and I got a call from the nurse managing my case.

Here is what is going to happen…Dec 8th I start taking the chemo meds
Dec 22nd I start the diet
Jan 2nd drive to get shot
Jan 3rd drive to get shot
Jan 4th drive to get tracer dose of Radioactive Iodine
Jan 5th do a full-body scan

If the tumor shows on the scan we all celebrate!
I get a shot
Jan 6th I drive to get a shot
Jan 7th I am hospitalized and get a treatment dose of Radioactive Iodine.  I stay in the hospital for 48-72 hours.  They test me with a Geiger Counter and release me when I am okay to go in the general public at a 6′ distance away from people.
Jan 11th another full-body scan.
After that, it’s isolation for me through the entire month of January.  I can see adults but they would need to stay 6′ away from me.

If the tumor doesn’t show up on the Jan 5th full-body scan, I go home and make the best of my life in the time I have.  There are other drugs down the line that might prolong life.  I will decide when it comes to that what I want to do about it.  For now, I’m not going to worry about that.  This is not a sure thing and I’m putting my eggs in the other basket for now.

My family and I are all happy that we have a plan and now we can work it.  I’m trying to get some things done around here anticipating not feeling well for the month of December.  I am going to try to still do childcare.  We’ll see how that goes.  My families all know this and know that I might need extra time off if I’m not feeling well.  Thankfully at least part of the time will be Christmas break so parents will be home or teenagers will be available to babysit kids.

My nurse gave me a few hints on trying to feel better.  She said that the chemo will dehydrate me.  She said on top of that with no salt while on the diet, I’ll be even worse.  She said many people crash.  To avoid that she suggested making sure I use kosher salt.  Apparently, it is a safe salt and doesn’t have iodine in it so it’s okay to use…YAHOO!!

So…we have a plan!!  I’m so excited.  I’ve had people who have sent me some freeze-dried fruit.  I’m so happy and am really feeling the love.  I never dreamed when I mentioned that I liked it that people would send me some.  How sweet!!

In the comments, several of you suggested that if there was something I was looking for to let you all know.  Maybe you could think of something.  So, here is what I’m looking for.  I would be thrilled if I could find something to replace butter.  It can’t have milk…can’t have salt or eggs in it.  I’ve looked and can’t find anything…a mayo or margarine-type product might work.  I just haven’t found anything yet.  Everything I’ve found either has eggs, salt or milk in it.

Another product I am trying to find is a salad dressing to put over a lettuce salad.  Again, it can’t have salt, eggs, or milk.  Most everything does.  If someone had a homemade recipe that would be awesome.  I’ve not really found anything yet.

I was really happy that during my last trip to the grocery store I was able to find salt-free chicken broth.  Over the weekend I made a batch of chicken noodle soup and froze that in individual containers.  I also found coconut milk that was vanilla flavored.  In the past, many people have said they have eaten oatmeal on the diet.  That sounded fabulous to me but then I made oatmeal only to realize I couldn’t have milk on it and plain oatmeal didn’t have much appeal to me.  I’m hoping the coconut milk is a hit!

So…little by little I am making my way on this journey.  I have my floral motif sampler all kitted up and ready to go on December 8th.  I’m just tickled to be starting it.  I’m so happy I have stitching on it to look forward to.

For those of you that missed my post, I’m going to stitch one flower every day.  As the sampler grows I will be closer and closer to the finish line of this treatment.  I’m been debating about starting it on December 1st as I’m really already in the middle of it all trying to keep track of appointments and prepping food.  We’ll see, either way, I’m really looking forward to it!!

So now you know everything I know.  I am curious if anyone has taken oral chemo and what your experience was.  What kind of side effects did you have and how quickly did they kick in.  I know everyone is different but the nurse makes it sound pretty icky…I keep hoping she’s exaggerating.

Many thanks for the kind thoughts, cards, and prayers that have been coming my way.  It is so appreciated.  I definitely do not feel alone.

92 thoughts on “We Have a Plan: Cancer Update”

  1. Jo: one of my friends gave me a recipe for oatmeal. Substitute chicken broth instead of milk or water. It is super tasty. This is a very popular Asian recipe.
    I hope it works for you. Best of luck. You are in my prayers

  2. I’m wondering if you could add apple pieces, raisins and cinnamon to your oatmeal. I’ve discovered that I love it that way and don’t want milk on it. Sending you lots of good energy. Take care

    1. I made a salad dressing for my dad when he could not have salt.
      It was equal parts of brown sugar, white sugar, and vinegar.
      A good trial is about 1/4 cup of each.
      You stir it together and bring to a boil. Then cool. Keeps in the fridge.
      Very tasty, I still use it now and then.

    2. I have eaten oatmeal, raisins and cinnamon for years, all added together the night before and then cooked lightly or microwaved in the am after soaking all night. The raisins plump and sweeten the mix.

  3. Wishing you the very best of luck Jo. You’re a very strong woman w/a ton of support & that hopefully will get you through this. Maybe just a balsamic & olive oil dressing will work for you. That’s mainly what I use.

  4. Every chemo drug is different, including the oral ones. And every person’s experience is different. You may have nausea, diarrhea, constipation, headaches, muscle aches, insomnia, lethargy, itching, and more, or NONE. Don’t go by others’ experiences, just wait and see what happens to you. And know that we are here rooting for you every step of the way.

  5. Glad to hear you have a plan. This may be of some help. My grandson is 9 and has been allergic to all dairy and eggs since he was born. It is amazing how many food products are available with no eggs and dairy. We found a mayo that is egg free and our entire family drinks almond,oat,soy and coconut milk. The coconut milk is thicker and oat is much better than soy. The brand “Simply Milk” is the best but harder to find in our area. There is also a very good dark chocolate milk made by Silk. Walmart carries chocolate chips that are dairy free and a lot of different dairy free butter. He is so allergic that he has to carry an eppypen with hip in case of accidental cross contamination. I’m not sure if the “butter” has salt, so you would have to check ingredients on label. Google foods safe for dairy and egg allergies. Hope this is of some help and best of luck in your treatment

  6. Many Vegan products are probably a safe bet, there is a butter substitute called Earth Balance, they even make one without soy. It tastes pretty god, and I have even cooked with it successfully.

  7. Jo I’m so happy you finally have a plan you can follow. Being able to take action is so much easier than just sitting waiting! I love your positive attitude. No wonder so many are ready to help by sending snacks, You make it easy to want to help. Bless you and rest assured we will continue to pray for you and send all the positive energy we can your way.

  8. I also wanted to say good luck with your chemo treatment. I haven’t had experience with oral chemo but my husband tried several types of intravenous chemo over the course of several years. The side effects varied and severity varied. It did tend to get worse as time went on; the first couple of treatments he felt ok but he felt more side effects as time went on. Fatigue was always the biggest one for him, sometimes nausea but mostly he was tired. I hope it passes quickly and easily for you.

  9. Jo, look up oat milk. We’ve used it on cereal and in coffee.. you can make your own. Minimalist Baker is the website. Many positive thoughts to you. Thank you for writing the blog.

  10. So glad you have a treatment plan and will be keeping you in my thoughts. As for a dressing I use a base of olive oil and just add mustard, chille sauce or lime to the oil and shake or beat well, you can use fresh herbs or any other flavours you want depending on your taste or dietary needs.

  11. How about a homemade Italian style vinaigrette made with vinegar, oil a little sugar, spices and perhaps some mustard one of your cook books must have one in just leave out the salt. My mom always made something like this and never spent the money on bottled dressing.

  12. Thanks for the update, Jo. You are definitely not alone! My Floral Sampler is kitted up, although I wasn’t happy with the fabric I ordered so I tea dyed today for the first time. Ready when you are!

      1. Judith Fairchild

        Jo, for salad dressing how about olive oil, ,wine vinegar and your preferred spices? I think it’s 3 parts wine vinigar to 1 part I’ve oil and 2 parts water. I’m using parts as I don’t make a big bottle of it. I make it fresh for every salad. As to butter substitutes. I suggest googling for sites to buy from or recipes.
        So glad you have a plan. Praying for you as you go through this treatment. The hard part I’d not being able to see your grandbabies during the Christmas holidays. Praying about that too.

      2. Jo – I’m going to stitch with you too! Just ordered my chart, floss, linen, and needles. Haven’t stitched on linen yet but decided this is the time to start. Will be sending good energy your way as we stitch every day of your treatment. God bless!

  13. I have made non dairy, non egg mayo….it was ok. Can you use salt substitute? All my dairy, egg free products have salt in them…I was surprised to see that. This diet is going to take a lot of work. I will keep looking and send anything I find. Good luck. Oh, look at the VitaCost site….I get a lot of food delivered from them.

  14. Jo, I never put milk in my oatmeal. I use about a third of a cup of dry oatmeal and about three quarters cup of water. I microwave it and then cover it so it thickens up. I add fresh or frozen fruit. Then I sprinkle on cinnamon. Maybe you could use dried fruit. Is cinnamon on the diet? Or use the vanilla coconut milk to flavor the oatmeal.

  15. So glad that you now have a plan. We will be praying along with you during this time!! Oh, I finished “The Book of Lost Names” last night, just wonderful!!! Thank you for the suggestion!

  16. You can’t do mayo it is made with eggs. I looked at the margarine (Nucoa) I used for my son because it is dairy free but it does have salt. Have you considered a balsamic vinegar for a salad. I happen to love balsamic and oil. The vinegar does not have salt in it. I just mix a little vinegar and oil together. Shake it up pore it one. Nothing less needed.

  17. I took oral chemo daily for 8 months… I can say every day was different and I found the best thing to do was NOT FIGHT IT… if i was tired I took a nap… the chemo i was on said to drink water (a gallon a day) so i started with the 1st round of meds.. was on a bunch.. and got that gallon in every day … every trip to the bathroom was a refill of the water glass… I had many changes while on the chemo but was on MANY other meds and not sure which caused what changes.. but I know that in the 8 months I only went back to bed to try again twice.. those days were just bad.. and I figured trying over couldn’t hurt.. and usually was better when i woke up again and started over. If you have specific questions feel free to email me… I’ll try to help.

  18. is there nanny type of flavored coffee creamers who can use on the oatmeal? I have done that when nI had no milk.

    Instead of driving to Mayo daily for the shots, have you checked to see if they have any help with overnight lodging. Someplace do and not just for families with kids.
    Best of luck.

  19. Try to gain a little weight before this starts. It will help you when you start losing weight on the plan. Isn’t that the best advice you’ve ever heard?

    Ask your doctor or nurse, of course.

  20. jo many prayers for such a beautiful person. my friend has taken oral chemo for a very long time and she said it never effected her and she is going strong 20 yrs after her diagnosis. my dad also did well with oral chemo. my co worker also. you’ve got this. you have a whole choir of guardian angels with you. i am totally amazed by you. God bless you on your journey to wellness. big hugs. love your blog. we share a journey of similar loss. He is watching over you like my Jim watches over me

  21. Jo in My oatmeal I put dried cranberries, walnuts and a touch of cinnamon. I make it with water and add these to it. It tastes pretty good. Hope it helps!

  22. One of my staff RN’s took oral chemo for 5 years. She never missed a day of work.

    Salad dressing: vinegar and a good extra virgin olive oil. Put in the spices you love (basil, thyme, oregano, rosemary?) Mix it up now and put in the fridge so it’s got a beautiful flavor when you need it. If you like spicy/hot you could put in a few chopped chilis instead.

    Butter substitute (vegan website): Blend until smooth
    1 cup peeled bananas, seeded apple, or pumpkin puree
    2 tbsp peanut butter, sunbutter, or cashews
    1 tbsp plant-based milk or water
    Pinch of kosher salt

  23. We’ve got a plan! A plan is what we’ve all been waiting for. Now, as you work your plan, feel all the devout love of all of us.

  24. Praying for the very best outcome for you, Jo! If you need to stay near Mayo Clinic, call the patient navigators Jeri or Angie 507-266-9288. They will email you proof that you are a patient. We have a room at the Hyatt next week for $89, free breakfast, free parking and free shuttle to Mayo. I’m glad you finally have a plan. I like fresh blueberries on my oatmeal.

  25. Prayers for you journey Jo. If you like oil and vinegar dressings, you can do a 3/1 part of the oil/vinegar and then add some herbs that you like. Maybe a little lemon juice as well. My youngest son loves oatmeal, I make it without salt and add some sugar free applesauce and pinch of cinnamon. Good luck finding/making these things you want to eat!

  26. Praying all goes well on this new unknown adventure, and you’re through this treatment in no time and it’s successful! You’re in my thoughts and prayers, best wishes!

  27. Yay for the medicine and a plan!! I’m another who eats oatmeal with water, cinnamon, and fruit (love blueberries!) and I add walnuts too. Being able to use kosher salt is a game changer! So many salad dressings though even without…oil, vinegar (all kinds to choose from), and herbs….instead of vinegar you can use lemon juice or lime juice. Continued prayers!

  28. Thinking about your chemo gave me an idea. Actually, a couple:). Since all medicines have different side effects, maybe considering sharing the name of it on here. You may have, but I didn’t see it. The drug company may have some information for patients, too. I pray that your treatment will go well with minimal side effects, and that you’ll get good news on your scans regarding the tumor presence.

  29. Oil and vinegar is a classic salad dressing. Traditionally, the salad is dressed by drizzling your preferred amount of each on the salad and tossing along with a pinch of salt and pepper. I’m wondering if you could substitute a dash of garlic powder for the salt, or just leave it out. When I was in Mexico for several weeks, we dressed our salads with a generous squeeze of lemon or lime juice and it was quite tasty. Not sure if any of those things are permissible. Best of luck to you as you take these next steps.

  30. My friend’s mom was in her 80’s and started the oral chemo. No side effects other than being more tired each day so she took a nap. She is a feisty gal and survived a year of the chemo. You will be OK.

  31. Hi Jo, it’s great to have a plan, isn’t it? Just knowing where you stand, and what the protocol will be is huge.
    My father-in-law used to just mix a bit of vinegar and a small amount of sugar as a salad dressing, it’s yummy.
    For milk substitute I love vanilla unsweetened almond milk, even though I don’t have a dairy allergy. It’s just good.
    Dash has lots of seasonings for table use. I’ve liked them all. Not sure if the ingredients pass the test, but perhaps. I think they used to be named Mrs. Dash?
    Nothing but the best to you and your family.

  32. I like my salad “dry” so no help from me with a dressing recipe. I was going to suggest Silk Coconut milk but a quick look online show “sea salt” as an ingredient for both kinds I like. I’m lactose intolerant and sometimes when out of my “milk” I add water, sugar and a bit of cinnamon to oatmeal. And read something to distract myself as I eat it. I have Dash seasonings and I think they may not have salt. (I’m on a salt restricted diet. It’s amazing how much salt is in products!) Praying for you and your family (and medical personnel) as this season of your life progresses.

  33. I am so happy that you have a plan I have Leukemia and have been on oral chemo for 20 years. Have had every side effect in the book but the only ones that remain are fatigue and some bone pain. I feel very grateful that I have been in remission except for a couple of blips and thankful that Novartis donates it to me. I love reading your blog and am a quilter and do cross stitch too. Am praying that your journey will be successful

  34. I am thankful that you mow have a plan Jo. Not knowing what is next is stressful. If you suffer side effects from the chemotherapy contact your doctor. There are ways to ease some of them. Coconut oil is a good sustitute for many fats in a diet. Please know we all care about you. You and your family are in our prayers. Hugs.

  35. My favorite salad dressing is one teaspoon Dijon mustard and one teaspoon red wine vinegar (or any kind of vinegar you like). Whisk together then add 3 tablespoons of olive oil one at a time whisking after each one. It makes a lovely creamy emulsion. You can add a pinch of sugar if you like. Or no sugar and add a tiny smashed garlic clove. I mostly eat mine without anything added to it. Sending love and healing prayers.

  36. When making cookies for someone who could not have dairy, I used a vegan butter, Flora Plant Butter, that doesn’t have milk products or egg or salt in it. I used it along with Crisco shortening (half of each) to make dairy free chocolate chip cookies. They were better than regular chocolate chip cookies,if I do say so myself! (I was using the nestle’s recipe on the label of choc chips, subbing the plant based butter and crisco for regular butter…also used dairy free chocolate chips.) I think you could play around with the plant based butters….try some in your oatmeal, on a potato, etc. Great that you can use some kosher salt! Vegetables! Fruit!
    Prayers for you as you go through this journey!

  37. So glad for the plan – it’s so much better to have that than to sit and wait!
    Fingers crossed, prayers going up, virtual hugs – and all the suggestions in the comments… hope you can feel the love!

  38. I think you can have vegan butter. There are recipes to make your own. The only questionable ingredient would be either oat or almond milk. I would check it out. Good luck on your cancer journey. Take comfort that there are lots of us rooting and praying for you.

  39. Check in the grocery stores, I am seeing more and more vegan products in the regular grocery. I know I have for some time been seeing in Walmart. plant based butter, plant based eggs. Also, Misfit has plant based butter and eggs, I love Misfits. Good luck to you.

  40. Jo, my thoughts and prayers are with you as you travel on this journey towards good health. You can do this, stay strong and remember that Roger is watching over you and God is by your side. Take care.

  41. You are in my thoughts & prayers. You are so strong! You are absolutely amazing. I’m so thankful to be part of your “Blog Family”. Take care.

  42. Jo,
    A salad dressing I like is for small amt:
    1/4 cup olive oil
    Juice of 1/2 orange
    1 tabs. Apple cider vinegar
    Graded orange peel to taste.
    Mix put in frig.
    Might mix it up and see if you like itl

  43. My daughter is vegan and have used earth balance and coconut milk as substitutes. One of her favorite recipes is cockeyed cake or depression cake. It’s a very moist chocolate cake that doesn’t have eggs and can be dairy free by substituting almond milk.

  44. Jo, these ladies have given you so many wonderful recipes so I probably don’t need to add another but I will just let you know that I am praying for you everyday.
    Love and prayers

  45. So glad you have a plan now! My sis took oral chemo about two years and her best advice was roll with the punches. If you have a bad day, it’s ok to stay in your jammies and sip your favorite beverage and rest! Oral chemo as all chemo’s affect everyone differently but listen to your body and go with that one day at a time. Be good to yourself and allow yourself to take time to rest when needed! May the Lord strengthen you for the journey ahead! Blessings to you ❤️

  46. You have a plan and YOU are not alone! all of us are right there wishing you the best outcome and to be healthy once again. Prayers from me to you, each day as you travel this path. Hugs, Jo

  47. My DH had a grade 4 brain tumor (glioblastoma) and had a oral chemo pill which affected him slightly in the very beginning but not for long. The radiation was the tough part. The ‘gold standard’ for that cancer was the chemo and radiation which basically did nothing (most are lucky to get a year). We tried many off-label drugs (thanks to a great oncologist) but that’s just a cancer that’s truly hard to beat. Hopes and prayers that all will work wonders and that you come out stronger (although sounds like you’re already pretty darned tough) on the other side!!

  48. I have used almond milk on oatmeal for years. I also put blueberries or apples in it along with cinnamon and honey. God bless you on your cancer journey

  49. When I was a kid, my mom made a dressing for lettuce that was just vinegar and sugar. It was quite tasty. Wishing you well thru the treatment.

  50. Hi Jo, Other people have mentioned basalmic vinegar which I love, but there is also a basalmic vinegar glaze that is thicker and designed to be used by itself. I think it is wonderful. I drizzle it on avocado and fruit. I know you can’t have milk, but it is also good on vanilla ice cream. There are recipes online to make your own.
    So glad you have a plan to work. A plan always makes it feel like you have a little more control and that’s important. Best wishes with your treatment.

  51. Jo- Glad to hear you have a plan. I will be thinking of you and praying for you every day.
    Don’t try to do too much – give yourself rest when you need it. God Bless!

  52. Jo, you might check out almond milk or oat milk. I really like oat mild. It tastes just like oatmeal to me. I don’t understand the part that if the tumor doesn’t show that you just have to go home and wait. It will still be there so I don’t understand that nothing can be done at that time. Can someone enlighten me on this? pam

  53. Pingback: Support for Mom | Jo's Country Junction

  54. I have found several recipes for Salad dressing, but Most call for at least 1 TBSP of Milk. I think water might be a good substitute, as it is really only to make it looser. I think I will Email them to you. print them if you want….

  55. Jo, There is a very good oatmeal recipe at fixedonfresh.com for Instant Pot Apple Cinnamon Oatmeal. I make it for my husband and he eats it Monday through Friday (one recipe keeps 5 days). It is so darned easy and then you’re set for 5 days. I am so glad that you have a plan and I must say that you are a shining example of how a Christian handles a crisis. You have a LOT of people praying for you and I think you’ve got this! You need to stick around to help raise all those beautiful grandkids!

  56. I wish you the best and will continue to keep you in my prayers.  Here are some thoughts regarding your diet:
    1)  per healthline.com, “Cocoa butter is naturally free of dairy, eggs, honey, and other animal-derived ingredients, making it suitable for vegans”. Check out https://www.healthline.com/nutrition/is-cocoa-butter-vegan.
    2)  per the Minimalist Baker, you can make almond milk and freeze it.  Check out https://minimalistbaker.com/how-to-make-almond-milk/#wprm-recipe-container-35701.
    3)  I use kosher salt all of the time.  It is a staple in my kitchen and I love it!!!
    4)  Enjoy Life Chocolate chips are “dairy-free, nut-free and soy-free” per their website enjoylifefoods.com/products/semi-sweet-chocolate-mini-chips-1?variant=20209502879855.  Both Amazon and Target carry this brand.  I have used them for over 2 years now due to tree-nut and dairy allergies.  They taste great but do cost more.
    5)  Per Crisco.com, “In general, you can substitute Crisco shortening for butter or margarine in equal amounts (1 cup Crisco shortening = 1 cup butter or margarine). Not only does Crisco shortening have 50% less saturated fat than butter and 0g trans fat per serving, it gives you higher, lighter-textured baked goods.  A few exceptions in which you can’t substitute: No-bake cookie recipes.  Recipes, such as candies and fudge, where butter or margarine is heated/melted and sugar is added/dissolved”.

  57. Jo,
    Thankful you have a plan.
    I can’t do dairy or eggs.
    I use unsweetened original Almond milk, I am not sure if you can do yugort but So Delicious has a coconut one that us unsweetened. I love it.
    I make oatmeal by using a pint jar. 1 cup Almond Milk, 1/2 old fashioned oatmeal. I don’t care for anything in mine but it you do go ahead and add it. Stir put the lid on and put in frig. Microwave in the morning or when ever you want one. I try to make 4 or 5 at a time that way it is always ready.
    Praying all goes well for you.

  58. Always good to have a plan! You seem at peace , my friend. Love seeing the pictures of you kids and grandkids! Live each day. Know that God is with you! We are praying you that cancer to leave your body! Love you, Lori

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