It hasn’t been the week I expected.
After Sunday morning’s start with neck pain, the Dr. and nurse told me to go to the ER if the pain got a lot worse, or if I had shortness of breath, pain in my arms, etc.
Tuesday morning as I was getting ready, my left arm started hurting from my wrist up to the middle of my bicep. Since I never asked the Dr. what type of arm pain to be concerned about, I called the office. After talking with the nurse for 20 minutes, she said I should go to the ER…not because it was really an emergency, but because things seem to be progressing quickly and if I went to the ER, they would do the CT scan immediately and I wouldn’t have to wait.
I called my neighbor Jen and she drove me up to the ER. Tom met me there. It was a long day of waiting and playing games on our phones. I am totally addicted to playing Yatzee (thanks Else for getting me started on that on Christmas).
My oncologist came to the ER and both Tom and I could tell immediately that he was concerned. The look on Tom’s face changed as soon as he saw Dr. Lung’s concern. No words were needed. I will never forget that moment.
At that point I wasn’t in much pain and I was starting to wonder if I had over reacted and was wasting everyone’s time.
I had a CT scan and the ER Dr. told us it was good news…nothing was broken and no surgery or anything immediate needed to be done. He read the results as an ER Dr. – nothing he could do to help me. He got a phone call in the middle of our conversation and had to step out.
Tom read through the complicated results from the radiologist and it didn’t seem like good news to us. While I didn’t need any help from the ER Dr., it was pretty clear to us that there were more spots and definitely something wrong with C2 in my neck – the reason for the neck pain.
We thanked the Dr. and nurses and headed home, knowing we would follow up with my oncologist that night and verify what we had read.
Our knowledge of medical terms relating to cancer and bones is pretty good and unfortunately we were correct. The cancer has progressed while on treatment, meaning the medication is not working. 🙁 Tom and I really thought I would get at least one good scan showing it had shrunk and the meds were working. This was pretty hard news to hear.
Since I started active treatment again, we have received results of my liquid biopsy test, giving us more details of the type of cancer I have. We now know the specific mutation – PIK3CA – and there is a new drug that came out in 2019 that targets that specific mutation. It’s called Alpelisib. While regular chemo drugs attack all fast growing cells, this targets the specific cells with this mutation. It is used along with the Faslodex shot I am already getting. This is the treatment we have decided to go with next.
It’s a pill which I will take at home. Lots of side effects – who knows which ones I will get. The thought of starting a new drug again makes me scared, sad and very discouraged.
All of this makes me so sad. It seems to be progressing so quickly. I’m having to take pain meds regularly. My neck is stiff. My skin is tender to the tough on most of my back and my left arm and I am itching like crazy. All narcotic pain meds make me itch, even with Benadryl.
Part of me wants to hide under the covers on my bed and not see anyone. Part of me wants to escape somewhere warm with just Tom and try to pretend everything is fine. Part of me wants to grab my girls and never let go. Part of me wants to send movers to our parents houses and pack them up and move them up here tomorrow. Part of me just wants to be done and be in heaven – no more pain, no sadness, no crying, no itching…
It’s hard to not think this is the beginning of the end. I fight off that thought constantly.
One moment at a time…one moment at a time….praying constantly for help to not worry about tomorrow because today has enough worries of it’s own.