The sense of urgency has passed. The shock of being diagnosed with two primary cancers has worn off. I've told the story so many times, I'm numb to it. I'm so used to it, I sometimes forget how shocking my story really is to people hearing it for the first time. In German I would call this "Alltag": everyday living.
I am living with my cancer, or some reasonable facsimile thereof. "Living" is different. There are medications to be taken at certain times on an empty or full stomach, depending. There is the horrifically
dry skin that requires repeated applications of heavy duty lotions.Parts of my body are covered with a hard, itchy rash. Even my nostrils are dry. My hair is fragile...but has become curly. My eyelashes are long and curly, thanks to the Tarceva. So...it gave me acne, the rash, the dry skin, but my eyelashes could get me a gig with Maybelline. I won't go into detail about the quantity of Immodium I ingest on a daily basis.
People say I look "good". I do. There are no outward, blatently obvious changes...short thin hair is nothing new for me. If they hang around with me for a while, they'd hear the wheezy sound of my breathing, my shortness of breath and the constant coughing. They'd hear the hoarsness of my voice caused by the coughing. They might see me steady myself during a dizzy spell. They'd see me looking for a place to sit! I try to conserve my energy for important things. Doing simple things like laundry or unloading the dishwasher are causes for needing to rest and catch my breath.
Yes...it's much better than this summer.What a long way I've come since my surgery...even with the side effects of the new medications...the post-op period is almost like a bad dream at this point. I had the pneumonectomy on June 7th. What I remember most about this summmer is the HEAT. It was mostly in the 90s with very high humidity. Most days I was stuck inside the house in the air conditioning. Taking the dogs out during the day was a scary ordeal. Cell phone in pocket, I'd take them out to the island of grass near the kitchen door for the fastest "business" on record. The dogs didn't like the heat either; they didn't waste any time getting back into the A/C..
During that time I was also taking a lot of pain medications. It's amazing I was functional at all.
Then there are the nights.....insomnia. Insomnia and itching. Insomnia caused by itching....with or without cough. Tonight--I write this not to whine, but to document...to put the night into words so that people might understand.
Today I was tired. Bone tired. I had to force myself to get up, move around, take a shower. The shower was a must because I need the Nioxin stuff for my hair, and I need to exfoliate my skin so that the moisturizers are effective. I use a mild scrub, then go over it again with a super duper moisturizing Dove body wash.
The shower has worn me out. I go to the vanity stool and sit...pondering the disarray on the counter before me. More moisturizer, then sunscreen. No problem; my skin is so dry the sunscreen doesn't make my skin gooey.
I survey my facial skin in the 5x magnification lighted mirror.Since being on the Tarceva and using extra, super duty moisturizers, the wrinkles are greatly diminished. This would be a cause for huge excitement, except for that the Tarceva has also caused three spots of true acne (which I never had as a kid), with a sprinkling of whiteheads for good measure. I believe the correct term is "zits". At the ripe old age of 51 I have produced a bumper crop of zits. Surely there's some kind of award for that!
By the time I've got the rapidly thinning, increasingly curly hair dry, makup on----I am exhausted. I still have to get dressed. By the time I emerge from the bedroom I'm ready for bed....and on days like today, I wonder how I can go on at all.
During this whole time, I have been coughing. If you've read my other posts, you know that this cough is deep, strong...almost violent. It's incapacitating. Talking to someone is incredibly difficult. Practicing the harp or piano--interrupted. There are two significant sequelae: I am hoarse, which also interferes with communication. Second, my chest and abdominal muscles hurt from coughing. The area under my left front ribs which is numb/burning/aching as a result of nerve damage from my pneumonectomy, seems to be especially irritated by the cough.
Finally, the cough just wears me out. On top of everything else, the cough brought me right to the edge of despair today.I felt like plopping myself down in the middle of the aisle at Target and crying.Not one more step, not one more breath.
After this terrible day of exhaustion, you'd think I'd sleep like a baby. No such luck. In spite of the moisturizers, I'm itching. In spite of the Nioxin, my scalp is itching and crawling. My whole body feels like one big itchy mess. At the moment, the cough is there, but less because of the narcotics I took for the side pain. The narcs don't help me to sleep; the itching is too severe.
Benadryl interacts with some of the drugs I'm taking, so that's out as an option to help. So, I got out of bed, came to the couch and computer, armed with my "insomnia" Jelly Bellys to check on Facebook and write here. One by one I pick the jelly beans out of the crystal jelly jar till finally, the jar is empty.
I return to bed relieved to know that it really doesn't matter if I'm exhausted in the morning...no patients to see, nowhere to go....I don't have to function at a high level.
When you are in line at the grocery and the person in line in front of you seems slow, it might be me. Wherever you find yourself among people, remember that their fears, illnesses and struggles may not be visible on the outside.
This is what I love about Christ...love people. Period. Whatever your religion or what your beliefs are, it's never wrong to show grace and kindness to others. I have experienced this so often and it's helped me uncountable times.
So...it goes on.
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