Treatment Appointments…

Here’s the latest update about treating my thyroid cancer that has metastasized to my lungs and spine.

I had told you all earlier that after our family went to the waterpark after Christmas I got notification that the oral chemo I needed to get the ball rolling for treatment was finally approved by my insurance. I thought that meant things would start moving along. It really didn’t.

I contacted the Mayo Clinic Specialty Pharmacy after that and that is when I encountered the rude lady…only to get meds signed off on the next day…less than 24 hours later. Well, the next step was to get the whole treatment plan set down into appointments. There are many that need to be made for all of this so it was not easy I’m sure.

After waiting for a week for someone to make the appointments, I messaged my doctor and asked what was going on. Why didn’t I have appointments yet? The next day I got a notification that my doctor had sent a message. I went online…then I read through everything. This was the gist of it.

You can see it says I start the oral chemo on Feb 4th…and the treatment goes on from there with the shots starting on the 25th of February. The message wasn’t super detailed so I went to the section where the appointments are listed as there I could find out the times I needed to be there too.

I ended up writing down the information on a notepad so I could take a picture and send it to my kids so they would know what it going on. Here is what the appointments said.

Um…wait. The dates didn’t line up. The appointments has me starting the shots on February 18th. This wasn’t what the message said. UGH.

So I needed clarification. It’s SUPER important that I take the oral chemo for 30 days. This moved-up time didn’t jive with that so I needed to know the date to start the oral chemo being the appointments didn’t jive.

So I messaged my doctor.

About an hour later I got a message that my appointments were scheduled. I went back to see…Oh, these line up with the original message from the doctor. Frustrating…well at least I knew and things were in place.

I felt frustrated but better.

I rewrote the note. More appointments had been added. That was okay. I took a picture of the note and sent it to my kids again…yep, I had sent the first note to them, and then now the second which I assumed was not correct.

That evening after work, I looked at the note again. I counted the days. I am supposed to be on the oral chemo for 30 days. I am supposed to take the last pill on the day of the treatment dose which is March 1st. I’m supposed to start the oral chemo on February 4th. Well, that doesn’t compute to 30 days. UGH.

So I’m back to messaging my doctor to see for sure what the start date to take the oral chemo is. This is all such a battle and the treatment hasn’t begun. UGH.

I’m just thankful I have my mind…how do people manage healthcare if they are only dependent on what is said? I’m sure I’m listed on my chart as “patient is very annoying”. It’s okay. If I’m doing all of this, I really want to do it right.

They also sent me a packet of info. I requested that I get a menu from the cafeteria as last time I was uncertain as what I could eat. There wasn’t a dietician I could talk to as it was the weekend so had nothing I could eat as I still have to be on the low iodine diet while I am hospitalized. They sent me this…

For breakfast here are my options:
Rice Chex
Rice Krispies

I can’t have dairy so no milk for any of them. GROSS!

Cream of Wheat

Again no milk…
I can have fresh or canned fruit.

Chicken breast
Plain pasta
Roast Turkey

Fruit plate
Asian Grilled chicken salad
mixed greens salad

The only dressing options are
Oil and vinegar

There is a listing of veggies as well. Thankfully I like them.

For drinks, my options are tea, diet pop, and distilled water.

I can have
Graham Crackers
Homemade gelatin

The last time I did this, I ended up being so nervous about eating anything that I simply ordered raw fruit and then ordered from Chipotle. If I order food with no cheese or sour cream, I can eat almost anything there as Chipotle the restaurant uses non-iodized salt. I guess my plan is to pack some of my own food. I found a coconut milk yogurt alternative that isn’t too bad. That will be breakfast…and I’ll bring some Uncrustables. Those are made with non-iodized salt as well. If you haven’t heard about them, they are PB&J sandwiches from the freezer section at your grocery store. I’m going to have to bring a styrofoam container with ice packs to keep it cool.

What a strange situation… It’s only three days in the hospital so it won’t be a big deal and at least I officially know I was right last time and there isn’t much I can eat.

So that’s the tentative plan for treatment. I’m still checking up on the day I’ll be starting oral chemo. I am guessing it will be a few days before the listed date…and the actual treatment, should this all work would be March 1st.

Many thanks to all of you who have been sending cards and cheering me on. It’s so appreciated. I’m so very blessed to have such an amazing support system. I wish all cancer patients and those dealing with other hard diagnoses had the support system I have. It means the world to me. THANKS!!

39 thoughts on “Treatment Appointments…”

  1. There are some nonmilk puddings and some dairy free margarine….fleishman unsalted and a few others. Also maple syrup on the hot cereals can do a whole lot and there is coconut milk. Prayers for a good outcome.

  2. You will continue to be in my thoughts and prayers as you make this journey. It’s been long and not easy but knowing you have the strong support of family and friends makes it bearable. Take heart knowing many are with you in spirit.

  3. You are doing great! You have to be your own advocate —guess you knew that .. know you’ll be prayer for..

  4. Oh my – what a confusing schedule and glad you are of sound mind and can navigate these messages. One would think that scheduling these steps would be something that wouldn’t be that difficult for those doing it unless they haven’t ever done it before. I am so thankful you have such a good support group too. That is so important. You continue to be in my prayers.

  5. Give ’em hell Jo! Advocating for yourself is critical and yes, many fall through the cracks. My Mom said “you do what the doctor says”. She would not have questioned anything as you have done.

    Hugs to you as you await the beginning of treatment round 2.

  6. Christine Burch

    You know I often wonder myself how some people manage to navigate the medical system. Particularly if they can’t advocate for themselves or have no one to do it for them. It’s really a flaw in the system and I can see it from the doctors and nurses side of it. And sort of front the support staff side of it. But it really is such a flaw in the healthcare system. It’s like way too easy for stuff to slip through the cracks.
    Hopefully, they get this all situated and worked out. I get anxious and irritable when things aren’t the way they should be.

  7. My daughter and grandson have severe dairy allergies but fortunately now there are many plant based alternatives. We have to buy dairy free butter, sour cream, cream cheese, many varieties of cheese, soy, oat, almond and coconut milk, and dairy free yogurt. There are so many non dairy products now compared to ten years ago. Good luck with your treatments

  8. Again, go Jo ,go!! Your mind is incredible to cope with all this confusion.
    I had an appointment yesterday at Audiology, made a month ago for 11.45am, turned up to be told it was 12.15pm!! Really, is my hearing that bad?! Not my mistake, but so easy for this to happen. Came home with 2 ears so all is well.
    Good you can work out food allowed, stitching , reading etc. You are on the winning side.
    Cheers, Dot, NZ.

  9. Cynthia from Nebraska

    Oh dear, I think that would frustrate me to tears. You do such a good job of checking and re-checking things and advocating for yourself! And you are probably saving yourself – and the hospital – time by not having appointments that don’t fit the right time frame. You go, Jo!

  10. Jo thank heavens you mapped everything out for yourself. Then was not afraid to question the schedule. I too have a list of questions that I take when I have a doctors appt. Things I learn online I take with a grain of salt but it gives me a place to start asking questions I may have. Doctors have been impressed that I have a list. When I had my eye surgery I could not find information from my doctor visits. So when I had my last appointment I asked to have my visits printed out.
    They did it. Yeah!
    Prayers are with you and your family Jo

  11. Jo, praying for you- appointments, schedules, patience, and courage. At the cancer hospital here, they have patient advocates. Not sure if they are any help. Be persistent and polite regardless of rude ladies. It is your life, not theirs. It is a big step and so crucial for you.

  12. Jo, I am allergic to dairy and I use extra creamy oat milk, Chobani or Planet Oat. I have no idea if either one will meet your dietary needs but that’s my two cents worth.

  13. Jo, After reading the menu, I am concerned that spinach is on it…isn’t spinach high in iodine? You try to hard to do everything perfectly, I am surprised that a low iodine diet would include spinach. Maybe I’m wrong…I think it’s wonderful that you are on top of this appt stuff…so many aren’t able. You’ll be in my prayers!

  14. You got this! And it sounds like a LOT!

    I know it’s probably not tasty….but can you use non-dairy milk for cereal? Soy or oat? Better than dry cereal, maybe?

  15. Be annoying – it’s your medical care/treatment! Prayers for you that it all goes smoothly now. Your family, quilting and cross stitch friends love you and want only the best for you!

  16. Sheila Fernkopf

    Ugh computers… trying again…
    Be annoying – it’s your medical care/treatment! Prayers for you that it all goes smoothly now. Your family, quilting and cross stitch friends love you and want only the best for you!

  17. Your are doing such a great job, Jo! Have you decided on your cross stitching project for the time you are quarantined? I will be working on the “Kind Words ..”stitch along….thinking about you with every stitch! Hugs, Julie

  18. Just an FYI, Uncrustables won’t keep if they are only kept cold. They must be kept frozen. They’re designed to thaw out in about 1/2 hr and if left to sit the jelly will seep thru the bread. The ones that are defrosted in the cooler will end up with very hard bread, and I mean really hard. The same thing can happen if they thaw too much between the store and home. I buy them often.

  19. Hi Jo. I’m so sorry that you have to go through all of this. Unfortunately it is in our best interest to always check and double check our doctor’s orders and information passed on by staff members. I also had thyroid cancer and have had to eat a low iodine diet on a couple of occasions. We were able to find low iodine diet information and recipes online if that would be of any help to you. It seems to me there was a group associated with it. I know the diet is a pain to do. Mostly because you can’t be sure if any prepared or “outside” foods have iodine in them so you just have to eliminate them to be safe.
    Prayers to you as you navigate this journey!

  20. How frustrating to have to navigate this medical plan multiple times. I also wonder how some folks manage who have no help or struggle due to meds or mental fog. I will keep you in my prayers.

  21. Thank goodness you’re on the ball Jo, and can see where the mistakes are beforehand. Hopefully you’ll get the correct timetable soon and you can get planning. We’re all behind you!

  22. Continuing to pray for you, Jo and for getting the care you need.
    I sure wish our health care system was better at this kind of thing. There are probably a lot of different reason like understaffed, etc., but it doesn’t help those who need treatment.
    Love and prayers.

  23. I’m sorry you have to be such a strong “self advocate.” I’m afraid that’s where healthcare is and will be but keep up the great work in holding the offices, hospitals, and pharmacies accountable.
    You have a marvelous family and so many followers here who are praying for you. We all appreciate your updates about your progress with the treatment.

  24. You’re correct being your own advocate, how do others navigate if they can’t check online and don’t push?
    Remember your Prayer Army is behind you all through this!!
    And your family is the BEST!!

  25. Oh Jo…it’s just so long!! It’s stressing me out that you were not rushed thru the systems. I pray things are not getting out of control while you are trying to teach them to count to 30!! Hang in there, you have an army standing with you

    1. I am frustrated by the time that is passing. It will be a full three months since I was originally told I needed to this. People say wonderful thing about Mayo Clinic. I have honestly felt like a number.

  26. I’m proud of you, Jo, for being the independent woman you are. My grandma aways told me that God helps those who help themselves, and that is absolutely necessary when dealing with our health. Thank you for keeping us updated. Prayers are plenty. Keep that pretty smile on your face.

  27. Rosie Westerhold

    Oh, my, Jo!! Having worked in healthcare for over 30 years, I can see things from BOTH sides. I’m a “little” older than you are, and feel like I’m still with it as far as navigating online things. Some days it is EASIER than others. It’s always great when things work, but when things don’t work, I just want to throw the computer or reach through a screen and grab someone by the throat!! Obviously, that’s impossible, but you sure feel like it sometimes.

    Keep advocating for yourself as no one else will do it. As some above have said, sometimes there is a patient advocate or nurse advocate that can help with these things. We had one when my husband was diagnosed with pancreatic cancer. The only “issue” with her I had was that she had the same name as my sister-in-law so I was always confused when she called me. Didn’t know which woman I was talking to. And she never identified herself as the NURSE advocate!!

    I worked in Dr offices as well as hospitals for almost 30 years. One of my responsibilities was contacting patients with test results and follow-up appts. This was back in the dark ages, before things could be done online. So, I was very familiar with attempting to contact patients and following through with phone calls, messages, etc. About 15+ years ago, I had my own medical issue, ended up in the ER trying to figure out what was wrong. Saw COUNTLESS different specialists within about 3 weeks, every one of them thought it was this or that or something else. I’m not an MD, but I AM very educated, know about medical issues, etc, and none of what they were saying made sense. I followed recs, which didn’t work, and tried to contact the ortho that I had seen via telephone. Couldn’t get past the front desk. Had left NUMEROUS messages for the nurse or someone to call me. No dice. Every time I called, I got the same run around. I couldn’t work for THREE+ weeks because I couldn’t hold anything in my left (dominant) hand, and had numbness and some paralysis in my fingers. What would you do? Had a follow-up with the ortho who said it was “carpal tunnel syndrome.” Yeah, right. And it came on SUDDENLY?!? I don’t think so. Did I ever let him have it when he finally came in the room. Told him I had been trying to get in touch with him for over 2 weeks, and could NOT get anyone to talk to me via phone. OR in person!! He looked shocked and CHAGRINED because I was being a PITA in his office. Called in the person who “had called me.” She said no one who answered that number knew who I was!!!! What the?!? I worked in a medical office with only EIGHT people, and I had been there almost 20 years!! And she said she never got an answer on my landline or on my cell!! Nope. SHE screwed up and tried to cover her tracks. The office manager was called in, too. She gave me her personal number to call if I ever needed assistance in the future. I was in tears which totally flummoxed the Dr. They can’t usually handle patients who cry. I NEVER went back to that office again. And, it was definitely NOT carpal tunnel syndrome. It took a PT to diagnose my issue, NOT a physician. I still have numbness in my left index finger after more than 15 years. No thanks to an incompetent ortho who didn’t know his way around MY symptoms. UGH. Still makes my blood boil.

    All this to say you DEFINITELY need to be your own advocate. And, SOMETIMES, you need to have someone with you who can speak up MORE than you can. You are a GREAT advocate for yourself, and can be “difficult” because you have gone through this before, and know what it’s all about. Hang in there. Keep being a PITA!! You know what’s going on, but the people on the other end of the phone or the computer sometimes do NOT. Customer service in the medical field is DEFINITELY lacking now. I HATE it. Hope I am still around and can keep advocating for myself when I need to. Much love and many prayers heading your way. Keep us posted as you can. You KNOW you have an army of support out “in the world!!”

      1. Rosie Westerhold

        You are right that this never should have happened. Thankfully, it wasn’t a life and death situation. Just a case of someone incompetent handling phone calls. UGH.

        Stay safe and warm during this upcoming “weather event.” That’s what they call snow storms here now. And below zero temps with windchill POSSIBLY down to -45 over the weekend. Have I ever mentioned how much I HATE winter?!?

        Happy stitching/quilting. Keep the faith, and give ‘em he**. You are your BEST advocate. You go, Jo!!!

  28. You are Kramer Strong and you will come through this to have much more time with your loved ones. Prayers being sent daily. God is good!

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