“I got the eye of the tiger, a fighter, dancing through the fire Cause I am a champion and you’re gonna hear me roar Louder, louder than a lion Cause I am a champion and you’re gonna hear me roar” Katy Perry

With all my “on the cancer job” worked I did to prevent a disaster in my new chemo order, things almost worked perfectly. Yes, there were calls to the Hoag cancer center and local doc and many follow up calls to confirm that they did receive the correct order and the correct order was sent. This was a day spent on my cancer job that I didn’t have the free time. With the weekly chemo, no one can fully understand this way of life. I have tried not to put my lack of free time onto my family to create an anxious situation.  Sometimes as much as I attempt to hide this, it creeps out. My one message in this cancer job hopefully is clear to you, you must take control of your health. If you don’t make the effort, the risks are too high.

When I checked in at the Hoag cancer center, I asked who my nurse was. Unfortunately, it was the same nurse who seemed to be “afraid” of me and lacked confidence. I requested another nurse. Of course, I saw the commotion that this caused. I also mentioned my new fast pass Disneyland program for getting chemo. This idea was ignored   and not understood because this was from a patient perspective. The first problem was that the cancer center did not acknowledge there was a problem. At least, I took my time to mention how lack of communication caused increased stress as a patient. I get a new nurse and all went well. Without the addition of the third drug, I was having nausea, but that was much better than allergic reaction. Surprisingly, my blood (now on the 4th week of chemo) had held up so I could get the chemo without no crisis call to the local doc. My tumor marker went down a teeny bit, so that third drug was definitely not worth taking. There seemed to be no extra synergistic effect by taking the third drug. My UCLA doc agreed. I’m still waiting for the outcome of my tissue sample to City of Hope trial. Maybe, there will be an answer next week, but I cannot think of that possibility because of the series of steps that would happen either way. This new drug duo (even though the trio was in the protocol we were following from Japan) required 3 weeks in a row and one week off. this coming week will be my forced week off. Even thought brings me a half of a week of freedom (still have blood test, still have vitamin C IV), the freedom thought comes with its own set of concerns. By not having chemo, will my cancer grow? Will I feel worse once I start the week cycle again? What if cannot be considered or I would drive myself crazy. I just half to look at the one day at a time as usual.
Life happens and often people either dont want to share or fear that their crisis is nothing compared to my every day dealing with my own mortality. I love life and I love all the happenings which include the good, the bad, and the ugly. (if you have a teen, there is a lot more ugly) If I am in one of my own crisis, I may just say, “cancer crisis day”, but it doesn’t mean that I forgot. There is no comparison to what you deal with and what I deal with on a daily basis. I may gently remind you that life is too short to waste energy on the emotional vampires, the things out of our control, or the control we want over our kids, while they struggle to be the people who they are meant to be.  Also, I have known people to have serious crisis moments involving their own health, the health of their child, or the health of their family members coupled by financial struggles, loss of house, loss of a job, and somehow they find their way. So, yes I may not have the patience that I used to have in dealing with your crisis of “the day”, but I am here for all the rest. There is a delicate balance between my daily goal of survival and trying to live a normal life. Jim and I watched a tv program on how terrible stress is. This program categorized stress and Jim and I added each year of age for each item. By the time this program ended, we were at least 60 stress years old. You just have to laugh because we would cry otherwise. The impact of the daily stress on myself, my Jim, and  my Alex  comes out in unlikely ways. We internally”suffer” and scream while Alex may overreact to simple things or just gather all his stress in a delightful bundle and decide to shut down. We usually find our way back to hours of fun by laughing a lot even at ourselves. As I continue to draw my eyebrows on, I was having one of those days where the wig hair was just to hot for me. I turned to Alex and asked him, “are my eyebrows still on?” His response, “mom, it is okay because you still have one on!” I would rather have 2 eyebrows instead of half of a face. This also goes along with my hurry to get out of my house. While ducking to exit my garage, my wig gets caught on the garage door. Just great, another reminder of how to shock your neighbors without even trying.
This week is my “off week” from chemo since I had the 4 weeks in a row. I am supposed to be 3 weeks on and one week off so I don’t really kill my immune system. Unfortunately, I still have Tues/Weds doc stuff and calls to nurses. Also, don’t get me started about the idiots who decided to abuse the disability (or cancer) card at Disneyland. They are now changing the program to be ridiculously non accommodating. Just what I need when I spend time at the Happiest Place on Earth to work harder than a normal visitor by walking back and forth to various kiosks to get a “special fast pass”…not sure how this new program is helping. I signed a petition online which was really about autistic kids, but I figured any negative publicity may make the new process stop. I called Disneyland, but they told me to call back and so the story goes. I have loads of time for this! Until tomorrow….
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