“It can knock me down but I’m gonna be back Strong, down for whatever exceptional and I don’t know how to quit…” Lupe Fiasco Mission

What have I learned this week:

* you can always learn something from talking to a new doc
* reality sucks, but often you need a dose to help you make decisions
* crying is okay as long as you start tomorrow without tears
* decisions require a lot of effort and a delicate balance
* focus on what you know now, today

Now most of these lessons I have learned over the course of 4 years, but I had to be reminded again.

Tuesday was a day of frustration and tears. Wednesday, I filled my minutes of freedom outside my house for re-check of CBC to get some opinions from nurses and pharmacists. Each of these professionals took the time to listen and told me truthfully their opinion based on their experience. There is no sugar coating the truth, the reality. This new protocol is in uncharted area. My counts have bottomed out once again and hibernation is key to avoid getting any illness since my precious body cannot fight anything without any white blood cells. The tumor marker continues to rise.

My week started with an adventure to USC. This was to see if I qualify for a trial and get some ideas from anything in the pipeline that would match my needs. After 5 hours plus hours driving, there was nothing for me. I did meet a doc gynonc who was amazed as are most docs with how I look compared to what I have taken and been through. Unfortunately, reviewing my lengthy history brought to the surface a dose of reality that I mostly choose not to face. Besides her comments on having a dangerous broken immune system, I am reminded that a cold could kill. Of course, we gained perspective on phase 1 trials which was helpful. Some phase 1 trials for ovarian are simply phase 1 because they haven’t tried the drug for ovarian, but were successful in other cancers. Some phase 1 trials are just a newer form of an older drug without all the side effects like the now available abraxane vs taxol and xeloda vs 5 FU. (Yes it is called 5FU and has a long name I don’t know how to spell). The last part of this learning curve is cancer stability or living with cancer. This has been something my doc has been attempting to reach me but always listens to me regarding my goal of cancer disappearance and chemo break for more than weeks. Since I have no real options that we know would work, why not stay on this until it really doesn’t work at all. Living on the edge. I do hate the roller coaster ride, but since I am without constant pain then living on the edge is what I must do.

Something can be gained from each meeting of 2nd or third opinions, but coupled with the dose of reality is often a prescription you choose to not take. This led me to my day of tears, but also led me to the conclusion about what I know now. I know now that I am not in constant pain, so I can deal with this ride. I know that I am eating, drinking, and attempting exercise when I can. I know I am not like other patients. I know that I don’t look like other patients. I cannot think about tomorrow, but I can think about what I can do today and be thankful for being alive even if it is in isolation once again. I can also find my sunshine. Watching live stream of Disney24 fireworks and shows as if I am in the park, listening to Alex’s musical concerts, tweeting awareness from worldwide messages, and reminding myself again of what I know are the sunshine for the moment.


Gotta spread the news about Lupe Fiasco’s song Mission for Stand Up 2 Cancer-explicit lyrics


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