Every day when I awaken, I have to raise a rhetorical finger just to gauge the wind of my pain; how much will there be and how far will it push me around as the morning and afternoon progress. It varies from day to day, depending on many variables. I can logically understand two of those variables but many factors elude me and I think I will have to leave it to voodoo, faery dust or the position of the stars.
The two logical variables I can always rely on, whether I want to or not, depend on medication and the activities I have performed the day or two before. I’ve been on the chemotherapy drug, methotrexate for many years for my rheumatoid conditions and inject myself with it once every week. I know the day before I take it, I usually feel rotten. After I take it, I can count on that day being a bit of a bummer, also, while all the forces within me wait for the medication to do its thing. That leaves me with five days out of each week when I can feel moderately better than the two rotten days. That’s my life. Out of those five days, three are better and I usually try to schedule appointments, soirees and trips around the world on those days. I wish. Coming down to earth I’d have to say I’m usually scheduling some type of medical testing, a trip to the oncology office for two injections an IV or a doctor’s appointment with someone. Trips to the market are squeezed in there somewhere as my dear man, my husband Jim and I now go together because we both get hungry. His retirement last spring has unfortunately but somehow fortunately collided with my failing body.
Neither of us expected cancer. When I was discovered to have breast cancer in late March of 2014, we were both stunned. My first thought was “Oh come on, God, is this some kind of joke? Don’t I already have more than one human being should have?” My answer was a biopsy report followed by a unilateral mastectomy on April Fool’s day. Very funny, Lord. It seems most people didn’t want to be scheduled on that day whereas I just wanted that uninvited invader to leave my body as quickly as surgically possible. After a couple of weeks of recovery, I went through 6 weeks of radiation treatment to fry my chest and hopefully the surrounding lymph nodes. I was no Jane Russell or Madonna, but like most women, I wanted to have two, you know, for balance and clothing.
Since we live a hundred miles from the hospital where my treatments and physicians and surgeon are located, we lived in a motel with our little Yorkie during those weekdays, coming home on the weekends. A daily trip was out of the question because of my sacroiliitis which is, for those of you who don’t know, one of those rheumatoid conditions that makes sitting a miserable experience. A two-hundred-mile round trip is simply too much to bear once, and especially not five days consecutively. Therefore, we took Georgie, our Yorkie’s pee rug…don’t ask…with us and did what had to be done. Half of the six weeks were filled in by my wonderful grown children. They were reared by wonderful parents, I’m sure they must have been, because they sure are great. Both of them have a profession in an area of medicine, they also have compassion and a lot of love for their parents, and we are we grateful to be theirs.
Halfway through my radiation treatments, my husband saw our dermatologist at that same hospital and two large growths were found on his chest. The biopsy showed malignant melanoma and he had to have them removed. Since he is a nurse like me, he takes these things in great stride and joked all the way through pre-op and recovery. We actually had the same surgeon because she not only excels in breast cancer surgery but specialized in malignant melanoma as well. Somebody up above is always looking out for us and this time it wasn’t voodoo or faery dust. Oh, lest I forget, in there somewhere, due to osteoporosis, I fractured one vertebrae and crushed another. Those trips became even more difficult.
Now, three years later, we are older, thankfully or we’d be kaput. Jim still has a clean bill of health but my cancer is metastasizing. We have forestalled it for now with monthly injections in each hip and IV’s. Oddly enough, because I have seldom if ever been what is called “ordinary,” the mets went to my skin causing me to have tiny tumors of breast cancer all over my body. No, they don’t look like tiny breasts. Seems like they should. They just look like grains of rice with some as large as marbles. My oncologist explained to me most mets to the skin accompany a spread to another part of the body therefore I had CT scans and bone scans. Yep, he was correct. I have metastatic disease in most of my large bones. They appear as tiny dots and have been delayed from growing thus far, by the medications.
Beyond doing all we can medically, I have to keep asking myself each day who am I? My time, like yours, is valuable to me and to my family. How do I cope? Oh my, you surely know the answers to that by now if you have been reading my blog over these last 11 years. Google me at “Sue Falkner Wood” and you will find many subjects, methods and approaches but today I would like to share my favorites by sharing a bit of prose I wrote several years ago.
ON FINDING MYSELF

Living each day with pain and chronic illness
I find it helpful to keep it simple.
I like to think like a child,
Which I must admit comes easily for me,
Because it helps me
Find my way home, when I feel lost.

Some days I become a turtle,
Hiding beneath my shell
For safety, for shelter, for hiding out
From the rest of the world.
I don’t even answer the doorbell
On those days. It’s okay,
Turtles can’t reach the doorknob.

Other days I am darkness personified,
Cruella de Ville, watch out.
I am pugnacious, mean-spirited,
Ready to kick life in the teeth.
Is it revenge, anger or just some part of me
Reaching out to survive?
Knuckles white from hanging on?

So often, after darkly blue days
Life takes on a special meaning
And I feel like a seagull,
Flying high, soaring on the winds
Of life, as if pain free.

On those blessed days,
Life has a special sweetness,
A brighter light,
A melodic harmony,
A richer hue.

On those days, I rise,
I find the real me.
I am the me that soars
And transcends the pain
If only for a moment, an hour,
And if I’m blessed,
A day.

Who will I be today? Who will you be today? This day, today, is all I have. Today is all you have so cherish it, live it, love it, laugh at it and don’t forget to laugh at yourself. Watch a humorous movie, read a poem, laugh with a child or play ball with your dog. Get lost in a mystery, play a game online with a friend or paint a picture. It’s all about the actions, creating, producing or just doing a chore that will improve your life or home.
It’s far too easy to slide into maudlin melancholia when one lives with pain and illness. Try being a turtle on the days you must hide. Don’t be afraid to give Cruella de Ville some competition on those bad days. Get that cauldron of bad vapors released in a healthy way by howling at the moon, arguing with an understanding God, throwing darts at a copy of your latest lab work or writing a letter you never mail. Coping and dealing is often activity based. Action brings us that feeling of accomplishment that rewards the human spirit that is bruised from a body that is always or often in pain. I know you and I usually feel like lying down, resting or sleeping but we need to move, aspire, accomplish, give and be willing to receive.