What kept me sane?
That is such a good question. Honestly two weeks ago, I was on CRAZY steroids & pissed that my cancer would not just SHUT UP AND DIE. So I was on these nice steroids going manic, angry, restless and sad. I was driving 1.5hrs to Fox Chase both ways for daily Radiation Therapy & easily could have driven myself to Trenton Psychiatric at any point of that trip. One day I said.. OK CAITLIN THIS WHOLE BEING ANGRY NEEDS TO STOP. I refused to give into my mental misery. I kept stating - "you are killing cancer, zap zap zap." During the drive I told myself - "with each zap you are killing cancer, zap zap die cancer." That helped, each day I felt better, and with each zap I was happy. Within 7 days I noticed I was genuinely happy, because I was getting radiated & killing cancer & I knew (for the first time in 7 mo) that hope was creeping back in. The mania, the anger, the sadness, the lack of hope... it melted away.
I made it through 10 sessions. 10 is such a small number compared to the 28 I had in 2011, but the side effects are less visible this time. The side effects are what you only HEAR cancer patients experience - fatigue, weight loss, fatigue, appetite changes, oh yea and fatigue.
10 radiation sessions to your vertebrae are no joke. Granted your skin holds up... but there are some cool side-effects that you do not expect. These side-effects grow during the 10 sessions and last for another 14days. What did I learn? Radiation is quick. I also learned to take it easy, stay hydrated and do not i repeat do not try to walk long distances alone. I learned that the hard way... which I am paying for today on my couch.
Although I am done with radiation, I am more tired today than I was on the last session. Radiation builds in your system, so the side effects well they are here to stay for a bit. I am taking things easy for a while.
So I am going to quickly go through how UPenn & Cooper Medical went considering that was like 2 weeks ago (so relevant now).
April 28 - UPenn Consult : they had no clinical trials for me. Fine. They agreed that my next standard Tx should be Xeloda and not Abraxane as I had no organ involvement. They said to keep them in mind if I ever needed another consult in the future.
April 29 - Cooper/MD Anderson Consult: Ultimately they said the same exact thing at Cornell & they also thought I should go on the same clinical trial. Also was confirmed that my metastatic disease is confined to my thoracic spine and a node in my chest wall.
I have yet to go to Sloan yet. The trial they offered me, was not something any of these doctors felt would benefit me, which I also believe was not something I felt I would do either. It was for anti-hormonal therapy & honestly my cancer laughs in the face of anti-hormonals these days. I am going to Sloan on 5/15 just so they can get a whole new genomic profile on my cancer to see if it will qualify for more drugs to target my DNA and more precise use of chemotherapies down the line. Thank you Sloan for using science to save me. (granted my Doctor or Weil Cornell could do this, Sloan has some special lab that does this better)
The Next Step
- I met with my Oncologist on the 29. We decided as a team that I need to do the clinical trial at Cornell. Its a once in a lifetime chance & my doctor also agreed that after his readings of the scans & not taking the techs word... its really "like a percolator, so lets save the big guns for the future, which will always change in the world of cancer."
- My oncologist and I will still see each other every 30-60days for my Zometa infusions to keep my bones strong and cancer out of the rest of my skeleton. He does want me to keep all my care at Cornell & keep him in the wings. SIMPLIFY NOT COMPLICATE
- As of 5/7/15, I signed myself over to the Lucitanib Clinical trial at Weil Cornell with Dr. Linda Vahdat
Oh and my brain MRI came out clear. No cobwebs no crazy. Thank god.
SIDE NOTE - If you do have metastatic disease or have a new cancer diagnosis, get a Brain MRI. Cancer goes to the brain, no other scans (PET SCANS DO NOT SHOW BRAINS PEOPLE) will show early brain disease. Brain MRIs should be standard with diagnosis of early stage breast cancer, metastatic disease, and also at any point where a doctor suspects progression of your cancer. I have learned that symptoms are not always everything, which a lot of women I met in the cancer club have told me. Its best to have the evidence and not assume before its too late. SCAN THAT BRAIN
Next on my radar is a CT Scan and Bone Scan to see how radiation worked & also to get a baseline for when I start the trial.
I get to be in NYC 1-2x week over the next two months, which makes me a professional patient. This is on top of seeing my Radiation Oncologist, Regular Oncologist, Lymphedema Therapist and you know (so I do not end up in Trenton Psych) my own therapist. Most days are filled with at least one doctor appointment. My work has blessed me with the ability to get paid & take care of all of these medical appointments.
We stay on the drug for "cycles" one cycle is 8 weeks, which is 2 sets of labs & 1 set of CT Scans. Hopefully no progression & I am stable. Then my time in NYC is monthly and I have scans every 8 weeks... back to normal life.
I officially start swallowing my new medication on 5/14/15. Wish me luck.
