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.