Thursday, October 13, 2011

Living in La La Land ... Losing Time in the Process

(This blog contains information from books I kept in June 2005. I realize my last blog was approximately one year ago, leaving a gap from May 2004 until this entry. However, in my own defense (if that makes any sense) my life was totally dysfunctional at all levels. I was heavily drugged (all legal) and felt like “crap” 95 percent of the time. Time itself became another issue. I apparently did not keep very good records during some periods of time within my cancer journey. I know my chemobrain (if I can call it that) certainly took its toll. I stopped writing for many years -- using books only to chart my medications and sometimes, an occasional thought. It is from these medication journals and my own memory, that these entries will come from. I hope they make sense. At times, I really wondered if when I spoke I said anything logical. Forget writing. I was “wordless.”)
I found a medication journal I kept. Date: June 6, 2005. It was my 30th wedding anniversary. For me, there would be no party to celebrate. No cruise or extra special trip. If anything, I had to believe that my “gift” was living. I no longer took that for granted. And, while I would have loved to have taken a Caribbean cruise or a trip to Hawaii to celebrate this milestone, I found myself apparently “content” to be at home starting a regimen of potassium supplements per my cardiologist. I had to remember to drink plenty of fluids while on potassium and it was advised that the large tablets be taken with food as well. There would be follow up lab work to be done in about a week. 
I also had this horrific rash. For the purposes of this blog, I will refer to it as GA. There is a big name (GA is the letters) but I can never remember how to spell the damn thing. Plus, very few have even heard of it. When I did my research, there was not much about GA. I had a topical cream to use and my dermatologist would see me in a week. 
My life had not really changed all that much in a year. I still had way too many doctor appointments and now, I had added a skin doctor to the list. The rash was itchy and that drove me crazy. I did not want to scratch it, but my resistance to the itchiness was low. It was all over my arms and upper legs. It was on my hands and fingers, almost like jewelry since the rash wrapped itself around my fingers and wrists. Although it was not contagious, per the doctor and my research, Edward was not thrilled about having to actually touch it. I wasn’t exactly thrilled by having to see it the mirror. It just looked awful even if if wasn’t anything “serious.” The rash would come and go in cycles but I was never able to figure out the actual cycle itself. My specialist really had very little info to share with me about GA, so I was pretty much in the dark about my skin condition. I knew it wasn’t normal and I also knew that while it was not contagious nor could anyone else near me contract it -- I still had times when I felt uncomfortable by it and I know that Ed felt uneasy too. When it did not itch, I actually did not even realize I had it unless, of course, I looked at my skin -- hard not to do since obviously it was summertime and I could see my fingers, hands and arms all the time. 
I needed to use my emergency inhaler the next day while traveling about with my Mom and brothers. The car was hot since the air conditioning system did not work, so I began having difficulties breathing. I grabbed my Albuterol and took two puffs. During this week, while temperatures climbed into the high digits, I had to reach for the inhaler almost everyday. Yet, I still wanted to take walks. We would drive to the air conditioned malls to walk. My breaks would be to stop for a bite to eat, to have a quick drink or visit the restroom. I walked around Festival Bay and the Oviedo Marketplace. Wherever Gary drove me, I found a place to walk and put into action my game plan - to feel better. 
On June 8, 2005 I had my bilateral mammogram and ultrasound at Vin Con in Oviedo. The doctor assured me that the results were benign. No tumors were found and I was remaining cancer free. I slept for most the day afterwards. I was still exhausted all the time. I was taking heavy duty narcotics for my pain at regular intervals. I did manage to go out for dinner that evening with Ed and Adrienne. 
My breathing attacks were quite troublesome. I needed to keep grabbing my emergency inhaler at all hours of the day and night for relief. I was having trouble breathing while coughing and wheezing. I was also very thirsty and had dry mouth. Even when I took a drink to quench my thirst, my mouth remained dry like sandpaper. I had bouts of nausea as well and threw up some mucus. I put myself onto the oxygen concentrator early the night of June 10. I realized I was having difficulties and felt this was the most logical solution. 
Life in la la land was far from fun. I lived day to day taking my medications, taking walks whenever possible and then, feeling totally exhausted. This was not a life; it was not even an existence. It was a living hell.

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