Storyline: Thinking in Autumn Colours
“Season of mist and mellow fruitfulness…” (J. Keats)
There are many reasons we started this storyline – “Thinking in Autumn Colours”. Aside from updating families and friends on our lives’ changes triggered by a mysterious illness at the beginning that was later attributed to Alex’s Chronic Lymphocytic Leukemia (CLL), the manifestation of the illness itself and the recovery development, we also want to contribute to the broader awareness of how what is considered a slow developing cancer can attest itself in different parts of one’s body, sometimes completely unexpectedly even for the oncologists, hematologists and neurologists.
But Thinking in Autumn Colours means a lot more to us. It is symbolic and metaphoric at the same time. Although we consider old age being still far away, we suddenly found ourselves in our autumnhood, where we have to balance the light of the day and the dark of the night; the falling leaves are beautifully colourful, but soon they will start decaying, bringing more tiredness and longer nights.
Although our favourite “attitude is the difference between ordeal and adventure”, didn’t hold well at times when Alex was in hospital, it is still by far the best motto in our lives. It is early autumn, but its signature began appearing.
A natural season of the year as is old age part of life, with its own music and colours. Do you remember the peaceful and content acceptance in “To Autumn” by John Keats? I can’t say it better.
“Season of mist and mellow fruitfulness…”
Not many having CLL will be affected in the way Alex was. It is very rare that CLL cells will jump the brain membrane and affect the Central Nervous System (CNS) but apparently it happens. And even then, it is extremely rare that the vocal cords and thus swallowing will be affected. But if the CNS is affected, it can manifest itself in many different ways such as brain damage, headaches, balancing problems, loss of vision, deafness, to mention a few.
I have written so far from the perspective of a caregiver. OK, not quite true, because an outside caregiver would be impartial. I’ve written it from my painful perspective watching him and his butchered body: arms full of IV needles, NG-tubes, G-tube and spinal taps. I had no time for attitude – positive or negative. I was running on adrenaline trying to keep it all together. Alex is writing his own story based on his experience in the hospital in which I was only a visitor. And based on his sense of recovery, where I am only the caregiver and a loving wife.
It all boils down to the fact that non-curable cancers, no matter the type, change one’s life and the lives of the people around that person. Driving him to emergency that September morning I could not get over the feeling that I am not getting him back the way he was. Something had happened. In the urgency of the situation, I didn’t have time to analyse, but there was this quick flash through my head– “He is not coming home the same”, just when North York General Hospital showed on the horizon. I knew it then that our lives were about to change.
After a month from hell, he is slowly recovering and enjoying life. We even took Doranya (the campervan) for a ride on a beautiful autumn day. We walked through the woods enjoying the last lavishing rays of the sun.
“Where are the songs of Spring?…
Think not of them, thou hast thy music too –
While barred clouds bloom the soft-dying day,
And touch the subtle-plains with rosy hue…”
(J. Keats)
And Alex was present that day. The fog and the clouds hanging over his head had disappeared a day before. Many years ago, I wrote a poem and never thought it will be so relevant in the autumn of our lives.
The bicyclist
(for those who were there or who understand)
Outside – colorful autumn;
Last lavish warmth of the sun;
An image somehow forgotten;
My memories suddenly run.
A bench in the park, sunset, a smile
your eyes into mine, a kiss and a song
of the birds, an innocent bicyclist passing by,
the trill of the happiness expected so long.
Wind – a deserved freedom after the cold.
Sun – a lovely moment dispersing the pain.
Spring – a hope rising from the depth of the souls.
Waltz – Yes, we are living and breathing again!
(Yes, I use to read a lot of poetry and occasionally write some too)
In this storyline we’ll follow the progression of Alex’s CLL, the treatment, the remission and possibly a complete wipe out of it with all the ups and downs associated with it. (But just to be clear, we know that it is chronic, i.e., there is no cure. The bone marrow will continue producing cancer cells and, we hope, the targeted chemotherapy will continue to take care of them for a long time to come – A.)
The word cancer was a taboo when I was a child (The “C” word was seldom mentioned when I was growing up, either – A). I never heard anyone having or dying from cancer until one day (I was in high school then) my mom and our neighbor next door (we lived in an apartment building then) were whispering something. It appeared to be that the neighbour a floor above had breast cancer. It was a bad word, no one would pronounce in public. Gossips would carry from whispering mouth to a willing listening ear. “Mimi (her daughter) thinks it is because of her father… He must have been arguing with her a lot…” Facts didn’t mater. If she had a cancer her husband was to blame. Eventually she died, Mimi then graduated from high school and left the house, and the family fell apart, drowned by the feeling of guilt. I don’t recall knowing any other person having cancer. It simply was not to be talked about. Until my ex-father-in-law died of liver cancer. But he was a drunk, so no one questioned the obvious reasons. Yet the fact that it can happen to anyone, no matter what, was neither accepted nor discussed.
The road to recovery for Alex is still long and winding but once he felt present that day, the following days have been good too. It is all relative, we are enjoying every moment of out lives together!
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