Friday, September 2, 2011

Going Out of My Mind -- Maintaining the Status Quo

(This entry relates to a series of events that took place in the spring of 2003.)
I’m planning a Passover Seder. However, when my family reads the story of Passover and The Four Questions are asked, my version will go something like this: “Why is this night of Passover different from all other nights?” In my household, I have to deal with “I don’t eat carbohydrates,” (Edward) and “I’m a vegan.” (Brian) During this holiday, where “eggs” are king of the dietary chart and “matzoh” the only “bread” allowed, I need to come up with a menu that meets everyone’s food preferences. Try making anything at Passover without “eggs” -- trust me, it’s not easy. For that matter, try creating dishes that don’t include matzoh or any variation of it. Oy! It’s not enough that I’m still coping with fatigue or that I’m still dealing with physical pain somewhere in the pain scale level of 7 or higher -- I’m attempting to create a Passover Seder, a family affair.  Visit  
Okay -- I’m not making a feast for hundreds. I’m only cooking enough for my immediate family -- Ed, Brian, Adrienne and myself, so it’s not impossible. But, given my “current” brain capacity for dealing with anything out of the ordinary, (Nothing about a cancer journey is ordinary.) I am super stressed. Cooking for my Seder in 2003 was more than challenging. It would be a “miracle” all its own. (Forget all the miracles we would read about that night.)
I don’t know how I did it, yet somehow, I managed to pull off a dinner that satisfied everyone from the “I don’t eat carbs” to “the vegan.” I created my own “tiny miracle” that night of Passover. I was happy with my creations and no one left the table hungry. Adrienne, by the way, was easy to please. She was more than eager to help me out in the kitchen, even making the delicious matzoh balls for our soup that night. (I never did make vegan matzoh balls. But, I managed to cook up a vegetable soup stocked with lots of goodies and plenty of other nutritious foods. Brian enjoyed his meal. And, he helped lead the Seder as well.)
Besides trying to make the holiday special, I was still coping with lots of “other stuff” that certainly made my life more complex. There was still the “unresolved” issue of my returning to work at the Disney Reservation Center. I wrote the following down in a diary: “I can’t talk for eight hours. I can’t type for eight hours. I can’t walk for eight hours. I can’t sit for eight hours. What the “fuck” kind of work can I do?” Obviously, based on my choice of language, it can safely be determined that I was not “coping” well at all with this important decision. Then I wrote: “My hands will be in splints. I’m on heavy drugs. But I’m supposed to return to work?” I continued with: “They’ll be thrilled and shocked to see me. I forget everything about the job. Maybe, I can sort stuff for a couple of hours, do some training for a couple of hours.” 
In mid-April 2003 I received wonderful news from Dr. Nikita Shah, my oncologist. My most recent bone scan showed no signs of cancer. My prayers had been answered. “Now, I was on the road to maintaining the status quo.”  My treatments with Herceptin and Zometa would continue and I would also continue taking Femara everyday. I added a new drug to the list -- Paxil. My depression had reached a new level. I was getting better physically while my mental health began to deteriorate.   Go to
I was seeing two mental health counselors, a psychiatrist and was still attending group sessions. Talk about intervention! I was heading downward faster than I could even imagine. I realized that “There was no way I could have undergone what I did a year ago and not be changed forever by it. That’s what I need to understand. I’m not the same person.  I have changed. And that’s okay. I need to get to know the new me.” 
“Just who am I?” I wondered. “What are my goals? My dreams? My plans? And when will my life come together? When will I be whole again? 

[I welcome comments. So, please take a moment and send me your thoughts about Marilyn's Byline and what I've been sharing. Keep in mind, this blog is a abbreviated version of my cancer story. Thus, I cannot reveal every aspect of my journey. That will be told in my book, "High Maintenance ... Surviving Cancer at All Costs." However, if you're a cancer survivor or caregiver, I would love to hear from you. Let me know how you're doing. Can you identify with my experience? Down the road, once I get my blog better organized, I hope to have a section where readers can share their own stories. Plus, I hope to welcome "guest" writers to my blog. Thanks for your support of Marilyn's Byline. It means a lot to me. Pink hugs to all!]

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