Advocating and Clarifying

 Chuck and I both feel like we've been in a whirling tunnel of diagnostic tests, the actual diagnosis, treatment plans, research and questions....so many questions pop up. 

For those of you that really know me, you know I want to know all the information I can - I am a shoot-it-straight kind of person when it comes to receiving medical info. I like to know the plan, and then I can deal with it better - it's the "knowing" that is best for me and my mental state. 

Then comes the "why is this the plan?" questions.  We keep a book called Chill the Fuck Out Cancer (sorry, not sorry for cussing), and I write the questions that come up for me from my own research, testimony's from other MBC patients, studying symptoms and signs - they are different.  SYMPTOMS are things I feel, and SIGNS are things they find (like liver/kidney tests, something on a scan, etc.) 

I am in a MBC Facebook group with 12,000 (mostly) women that are going through the many twists and turns of MBC  and it is a wealth of information and especially SIDE EFFECTS that seem to be widespread with some of the meds. There's a lot of inspiring stories, too....it really helps me to read about women who are thriving and having a full life 5 years, 10 years in.  It's helped Chuck to read these posts, too. 

So, here is the recap of what the treatment plan looked like 1 week ago:

-Anastrozole pill daily

-Ibrance pill daily for 21 days, off 7 days, repeat

-Radiation that will help pain - type TBD

-Zometa or Xgera bone strengthening injections or IV

At every turn, I was reading or learning more about Zometa and Xgera, and even 3 people I know mentioned these drugs and the experiences their loved one had with it. It is hard on your body and can even cause the jaw bone to erode away, and you could lose your teeth. Now, that doesn't happen frequently, but y'all...I already have implants and a family history of horrible dental issues so this scared me big time. 

Here's the thing - they wanted to give it to me because I have mild osteopenia, which is a step down from osteoporosis.  I mean, I am 60 years old, that is normal and to be expected - I was a bit of an athlete back in the day and I also have some arthritis in my ribs, neck, shoulders. 

These bone strengthening injections can help to keep the bones stronger while using meds and radiations that can break the bones down. The bones are an organ, and the only organ that is constantly breaking down and rebuilding - that is the natural state. 

So, I reached out to my oncology team who I ADORE AND TRUST, and asked....can I skip the bone strengthening meds or only do injections every 6 months rather than monthly?  And you know what my Dr. said?

He said YES I CAN SKIP IT, no problem!  We'll see how I do and if ever I need to do this therapy, I can reconsider later, but...it has no effect on helping to put my cancer back to sleep. So, YAY!! 

I have NEVER broken a bone in my life, and I will need to be careful to not do that now. 

The point is...I've asked MANY questions and no, the oncology team doesn't mind. I don't feel like they are annoyed by me at all.  I write them all down, so Chuck and I can read them when we are in person with the doctor and team, or I send them through MyChart. I try to be prepared with questions and send them in an easily understood format and I think they appreciate that. After all, I am a business person, so I can appreciate their time is valuable, too. 

You must be an advocate for yourself, or let others that are good at that in your circle be that advocate for you. Like my sweet and knowledgeable friend, Rachel Vaughters, she is a Certified Patient Advocate and yes....she is AWESOME at it.  See....everyone can benefit medically with advocacy. 

As a side note, many of my communications to my medical team have been about my emotional/mental state and I have a social worker for that - she's great. I've been very down and very up - it mostly relates to pain, but I think my body is getting used to the the new med (Anastrozole) so my joint pain from that is a a bit better, but....I do feel the hot flashes coming on at night especially. I'm digesting all of the news and that gives me the highs and lows right now. I know better than anyone the power of a positive attitude....I am working hard to have it. I promise! I do have pain in the MBC site on my hip/pelvis....it's pretty constant, but they should me some ways to get down the stairs better, and get in the car easier...that will help and the radiation will ease the pain, too. 

Happy Saturday my friends and family...I sure do love ya.


Jill





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