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:
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.
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
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!!