Did You Read that on Some Blog? Medical Update

After my second opinion I had to go back to my primary oncologist and advocate for some changes in my care.  I think Dr C. gets frustrated that I ask so many questions.  Sometimes I think about not asking them so that I am an "easy' patient. But then I tell myself, NO. No one else is going to fight for me. I want to be here as long as possible for my kids! SO I will be a pain in her butt! I am worth it!

My appointment did not go as well as U of M.  At U of M they seemed excited and proud that I had so many good questions. I felt completely validated throughout the entire appointment. Dr. C., not so much. I first tried to advocate for myself and make my request without mentioning U of M. I was afraid she was going to be mad at me for seeking another opinion.  I am such a people pleaser.

Being a few weeks later I can't even remember the first question I asked Dr C. BUT, I do remember the response. She said, "What? Did you read that on some blog?"

UUUUMMMM nope, I have a master's degree and I can read peer reviewed research articles, thank you very much.....of course I did not say that; but I was stunned. I finally said, look I went to U of M and talk to a leading Oncologist in HER 2 breast cancer. Based on our conversation these are some of her recommendations from our appointment.

Dr. C checked her computer and the U of M oncologist had sent a note. Praise God. I wanted 3 things. I got two out of three.  1.) brain MRI & 2.) injection every 6 weeks vs. 4.

She did not want to switch from tamoxifen to an AI.  She promised me she would do the research herself and we would talk about it at our next appointment.  I pray she keeps her word.

I stood my ground. It was uncomfortable but I continue to advocate for myself. While Dr. C was looking in my file on the computer, I had a conversation with the medical student that was observing  that day. I discussed my breast cancer and then started a conversation about muscle spasms and the possibility of magnesium depletion. Dr. C was listening and actually agreed with me for a change! She ordered labs to check my magnesium and vitamin D level. So even if it feels yucky.  You got to continue to speak up!


The last thing that I can remember about the appointment that got me HOT was she said, YET again, "No curative intent."  Holy Mother of all things Holy!!!! YEAH, I got that the first time you drew a line through the word cure. I DO NOT NEED REMINDING that I am TERMINAL. I did NOT forget!!!! I can't remember now to what part of the conversation that she was referring to and why she felt she had to throw that statement out there again.  I just remember the CRUSHING feeling of hearing those words, yet again.  AND I ponder weeks later as I sit here typing this...... IS she fighting for me?? IS she working less hard for me because of my prognosis??  MY LIFE MATTERS. I deserve the same care, same treatment, same level of service as an early stager.

I am not sure if this is a good fit. The location is convenient; but I have got to trust that my oncologist has my back. This will be a long relationship because I am going to beat the statistics.....What to do, what to do.........

In the mean time I already had my brain MRI and it is clean!! No tumors
I have also had my yearly mammogram and it is also clear!!!! Praise God!!
I have had my PET Scan and it is unremarkable. No new progression. Still NEAD. Best news!!!

Next Thursday is my follow up with Dr. C. One more hurdle to jump. I have a new list of questions to ask her. They tend to build up in the 6 weeks in between appointment. I pray that this appointment goes well; better than the last. I won't stop asking questions. I won't stop researching the best treatment for me.  I won't stop advocating for myself.

I am worth it!