We got a load of news on Thurs, none of it good, and still not complete. The cancer is widespread throughout my liver. I don't know if it is also back in the bones because my doctor is apparently in Uganda and I'm waiting for them to send the scans to my dad so he can tell me the complete results.
And oh, that miracle clinical trial that was sold to me like a shiny new car at a dealership is apparently not for sale. The trial "just" closed, I have regrettably been informed. I have been wait-listed to be on another trial scheduled to start in 1-2 months, but no guarantee I'll be on that one because it is very popular too.
So we boarded a plane early Friday morning to head back to Hawaii. We stayed in Oahu overnight because I couldn't stand to wait for 5 hours in Honolulu to fly back to Hilo. The pain has returned in full force. I can barely walk or stand without feeling like my back is broken. Well hey, at least no one can tell me these pains are "manifested in my mind", and that "it is sometimes a case of having too much information that can cause over-worry". Yes, those exact words were said to me by medical professionals 3 weeks ago when I first complained of the pains in (surprisingly) the general area my LIVER is in. Weird.
I have a scheduled chemo on Tuesday of the stuff that was working before. Tuesday can't come soon enough. I'll lose my hair again, but it's just hair and I am still amused when I see my reflection with it...I never expected to keep it.
Yes, I'm severely disappointed. If I were in charge I would have ordered this PET/CT 3 weeks ago when all of these pains started. But I'm not a doctor, I don't have a medical license, I don't have years of experience treating cancer patients. I only have my heart that speaks to me and tells me when I'm in trouble. The trouble is, I didn't put up enough of a fight as I let the people with certificates on a wall tell me that the likelihood of cancer didn't seem probable. Cancers don't typically come back this fast, so these pains must be something else. I have been everything but typical from the start. Shame on me for not throwing a tantrum and threatening...whatever I can threaten, which isn't much I suppose. None of this matters now since I have their attention again. I just hope that I'll be around long enough to actually make this clinical trial that has been dangled just out of reach twice now.
love,
Denise
About Us
- Nise and Brian
- Hilo, HI, United States
- Denise found a lump in her breast in Aug 2008, and was diagnosed with Triple Negative Breast Cancer on 9/11/08. She went through 16 cycles of chemo, a lumpectomy, and radiation ending in June 2009. In July 2009 Denise was given the news that the cancer had metastasized to her bones and liver. New chemo was started Aug 2009, then radiation Dec 2009, but the cancer continues to spread through the liver and bones. Today Denise and Brian live in Denise's hometown of Hilo on the Big Island of Hawaii and live each day as it is the best day ever.