The initial "read" of the PET CT said no other major organs are involved. This was not entirely true. My onc passed this on to my neuro oncologist to tell me when we in for our consult on my C3 - to reassure me. What the PET CT really showed is that yes, it's in my bones ... but I've also got small spots on my liver and lung as well as in a sub-mammary lymph node on the right side and of course my cricoid cartilage. In my bones, it's my C3, my pelvis and my left femur. I feel riddled with "spots" ...
The last few doctors appointments have been with the radiation oncology team and a check-in with my oncologist. The plan right now is to radiate my C3, my cricoid and my left pelvis. The C3 to protect my spinal cord, the cricoid to protect my airway and my left pelvis because I'm feeling nerve pain when I sit on hard surfaces or put most of my weight on that side. I originally thought this pain in my hips was also associated with pregnancy ... It seems physical pregnancy woes and breast cancer symptoms are easily mixed up. Or just that one doesn't even fathom a breast cancer recurrence during pregnancy.
I'm OK I think with radiation. The efficacy is supposed to be good against preventing a recurrence in the same place. I'm a bit nervous about radiation to the cricoid purely because of the nature of the tissue there - being so soft. But my rads onc assures me that they treat this area commonly and results should be good. I'm also a bit nervous about radiation to my C3. I'm wondering about how strong it will be after the fact. The potential for needing a fusion surgery isn't off the table. It all depends on how my vertebrae scars and repairs itself. I'm praying it recovers well and is strong again after treatment. I'm actually praying that everything that's radiated recovers very well and heals and repairs itself. In the end, I'm just praying for everything ... everything to be better ... for time.
The appointment with my oncologist covered treatment after rads. His recommendation is to do anti-hormone therapy as the next step. Lupron for ovarian suppression and an aromatase inhibitor to suppress the adrenal gland production and fat tissue stores of estrogen. The treatment intends to starve the cancer of estrogen to shrink and kill them.
We've also met with a shaman and discussed alternative healing methods. Healing through diet and minerals and supplements. Healing through leveraging your body's own ability to cleanse itself. The conversation with the shaman was intense. It requires switching over to a complete raw food diet and making other big changes including what products we use as well as incorporating cannabis oil to fight back.
But I don't know if I agree with the hormone suppression. I understand the approach - remove the hormones that feeds the tumor. I get it. But to me I believe that an increase in estrogen was my problem, not just the existence of estrogen. That the increased level of hormones from being on birth control for a few consecutive years led to my first diagnosis and then two pregnancies in three years rekindled a fire ... this is what I believe to be the cause of my cancer. Am I trading one problem for potentially another by suppressing my hormones and putting myself into menopause early? I don't know. Do I have time to "experiment" with completing rads but delaying hormone suppression to try alternative medicine to see if that makes a difference? I don't know.
I don't know. I don't know. I don't know. This is where I'm at. I don't know which is the "right" move. I don't know how to move. I'm scared of everything I put in my body now. A simple question like "what do you want for breakfast" leaves me speechless because I don't know if eggs and wheat are my enemy or if fruits and their natural sugars are my enemy or if the coffee I have will create a better environment for the tumors to thrive. I don't know how much time I have. I don't know if I have time to "wait and see" what else might work. I feel like I tried chemo the first time and it essentially failed me because I have a recurrence. But I don't know if it failed me. Who's to say this wouldn't have come back sooner if I didn't do chemo.
So many unknowns. So much information to process. So many questions. No answers. In the midst of all of this I still have to remember that I have a regular life - my life - the life I'm fighting so hard to be in. I don't know how to integrate these two things together. I don't know if I should pull Cam from daycare and spend every moment I can with him. If I'm supposed to stop everything and wrap my arms around everything I love and not let go. I want to freeze everything ... to preserve it so I have it forever. So I'M in it forever. But I know that's not possible. I know that's not best. I know I need to learn how to integrate this knew life with my current life and keep on living. But all the unknowns around how to do that, what that entails, what that new life looks like, how long I have in this new life ... it's paralyzing. It's terrifying.