Tuesday, August 30, 2016

I want my body back from a week ago before I started this new drug. I feel like crap. My heart is beating so fast that I swear I'm gonna be picking it up off the floor. I've had headaches daily, my stomach and pelvic pains are so bad that I've had to give in to the pain and take a pain pill about 3 times in the same amount of days. My joints are all aching and out of nowhere there's new pain in places I probably didn't even realize I have cancer. Did I honestly forget in just 3 months how awful and depressed and out of it these drugs make me feel? What kind of life is this? And holy crap. I haven't even started the second drug to wash the first one down with.

I don't know why I thought that DFCI's drugs, the ones I already took and felt like crap taking, were going to be some candy coated miracle pill with zero side effects.  It's probably because I want to live longer. Probably because they told me that I look "amazing", and it's "remarkable", "Who is the patient" one of them asked as they looked at me then at my sister, then back at me again. I totally thought he was joking. He told me he wasn't.

If that was the case then why did I have to fly almost 3000 miles to be given a straight answer and take the same drugs I was taking before? I am so glad I did because they are the experts in their field and  incredible doctors who are compassionate and smart and want to help patients but they truly want to research more to help others after me. They care at Dana Farber. I have finally felt like someone other than me is managing me. Now I wanna live and not worry. Count me in.

After being home a week following 2 months in Boston, I'm still trying to digest the fact that I was given the unfortunate news that if I didn't take another cancer drug or have another chemo infusion then I would probably not be around in a year or so.

How can 2 (make it 3) doctors have such varying opinions on the same patients case?  I did not go to Boston to find a miracle cure. Let me make that clear. Before I got there I hadn't been on any chemo or estrogen blocker or anything to help stop my cancer from spreading since late May. Nada. Within a month or so of stopping all treatment I finally felt alive again. Ironic? Not really.

I had just started a new strain of what's referred to as FECO. Full extract cannabis oil. This is what makes me look healthy, feel fantastically energetic and keeps me from being a completely depressed, angry person. It's what has saved me throughout this entire bullshit "cancer journey" that I've been on again since 2013.

I'm one of the lucky ones I suppose. I've known 7 people personally or through friends, who have passed on just in the last 3 years since I was diagnosed. Many were diagnosed much after me. Side bar: I had to change that number 3 times as type this. One gal just passed on today. I cried so hard I hurt myself from my own pain.
This is all raw emotion I'm putting down right now. They say it helps.




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