I have been meaning, ever since I started this blog, to write in the quote from The Secret Garden from which the blog title is taken. What I really want is to add it as a side bar, but until I figure out how to do that, I shall put it here as a post.
"At first each day which passed by for Mary Lennox was exactly like the others. Every morning she awoke in her tapestried room and found Martha kneeling upon the hearth building her fire; every morning she ate her breakfast in the nursery which had nothing amusing in it; and after each breakfast she gazed out of the window across to the huge moor which seemed to spread out on all sides and climb up to the sky, and after she had stared for a while she realized that if she did not go out she would have to stay in and do nothing—and so she went out. She did not know that this was the best thing she could have done, and she did not know that, when she began to walk quickly or even run along the paths and down the avenue, she was stirring her slow blood and making herself stronger by fighting with the wind which swept down from the moor. She ran only to make herself warm, and she hated the wind which rushed at her face and roared and held her back as if it were some giant she could not see. But the big breaths of rough fresh air blown over the heather filled her lungs with something which was good for her whole thin body and whipped some red color into her cheeks and brightened her dull eyes when she did not know anything about it."
Today the wind is buffeting me. It does not feel to be making me stronger. It feels as though it is beating me up. It feels as though it is winning. And although feelings are not necessarily reality, they can feel like it.
I have changed my mind. I have something I want to do for counting down. From day one of learning of my diagnosis I have referred to cancer as the monster in the room. It is bigger and scarier than an elephant. The mission is to declaw the monster and eventually annihilate it. So, I have decided that for these first five weeks of daily treatments before the BGC (Big Guns Chemo) starts, I am going to make or have grandchildren and friends make (small dessert-sized) paper plate monsters to hang on my wall. Every day I will throw one away (or more likely incinerate it in my chiminea!) Feel free to make one (or a few) and send them to me to add to my collection. I need 25 in all!
Monday - Friday commutes ☑︎ Monday Chemo ☑︎
Daily radiation ☑︎ Friday afternoon nap☑︎
Checking things off from week one. It is hard (impossible?) not to count down. I can't decide whether to try not counting or embrace the counting. I even looked at "Creative Ideas for Counting Down." Some seem cutesy. Some downright weird. Some just - meh. Maybe at some point I will connect with the idea of a visual countdown system. Until then, I guess I'll just keep doin' what I'm doin' until this five week round is done.
If you have not read my previous post written about what, at that time, was an upcoming surgery for the insertion of my medical port, you may want to do so. This journal entry has my post-surgical thoughts regarding the experience. One word. Weird. Wait! I changed my mind; I am giving myself license to add a few more. Bizarre. Freaky. Strange.
theSince many types of sedation make me nauseous, I opted for local anesthesia. For the most part it was not painful, just kinda creepy. My biggest challenge was to keep my mind off what all the sounds and sensations were about: instruments being lifted and set down, incisions (2) being made, pressure and pushing as the surgeon threaded a tube underneath my skin from my chest to my neck, accessed the jugular vein, and inserted the tube through the vein to just above the right atrium. Yup. Now you know why I did not want to lie there running a moment-by-moment cinematic rendering in my imagination. Music to the rescue! I had been given my choice of music to be played in the O.R. during the surgery! I was hoping for chants. Apparently, I was the first person ever to request chants. The staff seemed to have fun trying to meet the request, and after some persistent searching, triumphantly announced they had found Gregorian chants. I expressed my sincere appreciation (and even resisted the urge to launch into a discourse of the differences between Byzantine chant and Gregorian). And then the surgery and the music began.
The acoustics of the operating room seemed equal to that of many a church, the reverberations providing a marvelous echo causing the space to seem much larger than it really was. With my eyes closed I transported myself to a church, imaging the candles and icons (yes, I know, Western vs. Eastern music and all that!) and even the scent of incense. Celestial essences. Then it happened.
Chirp. Chirp. Chirp. Chirp. Chirp. Chirp. Chirp. Chirp. Chirp. Chirp. Chirp.
The sound of the heart monitor found its way through the anthem and into my brain. There it stayed, threatening to take center stage in my thoughts. For the most part it maintained an even pace. I tried sending it away. The pace quickened. I tried harder. It went faster. Deep, slow breaths. Slow it down. Where did the chanting go? Ah. There it was. I fought to find my way back to it, to keep it my focal point. "Kyrie Eleison!"
Chirp. Chirp. Chirp.
CHIRP. CHIRP. CHIRP.
How could such a seemingly small sound drown out the sacred majesty of the song? And so it went. Struggling throughout to keep the sacred and spiritual in front of me, and leave the other concerns and such off to the side. (Admittedly, I am thankful I had a heartbeat and there was a monitor to keep track of it. But it did not me fixating on it to keep it going. ) I think the juxtaposition of the chirps and chants (using the term a bit broadly perhaps) may be a good analogy to keep in mind on the road ahead.
And there it was again. "We did not see what we were hoping to see." And so starting in a few weeks, I will begin five weeks of radiation five days a week, in conjunction with chemo. This will be followed by three months of Big Guns Chemo.
I feel like Pooh in the Pooh Corner flood, struggling to stay afloat. Just when I think I have found my balance and am staying upright, along comes the wind or a wave (or even a ripple on some days) and splash! there I am again grabbing for a floatation device of any description. Now for me the first and foremost source of rescue is found in God, and I am aware that I have yet to write about the foundations of faith on which my life has been and is being lived out. I think that is such a colossal topic and one that is still quite complicated for me in the midst of life with cancer that I just have not been ready to put it to paper. It will come. In the meanwhile, I have a myriad of photos that are records of the love being shown to me by family and friends; they have arrived as angels bringing light and beauty, counterbalancing the darkness and the ugliness of cancer. And lest any of you are thinking now that that all sounds so dramatic, perhaps even overly so, it is not. It is the reality of my experience these last seven weeks. The love, sacrificial giving, and kindness surrounding me has been astounding and humbling. It leaves me speechless. And so I will let the photos tell the story. And my apologies to those whom I was not able to capture on camera. These are indeed simply a sampling!
So this is a photo of my evening cocktail at this point. So many different shapes and colors! Such a potpourri of delightful variation and creativity on the part of their creators! And to accompany it, a poem of course. (It may be lacking in some of the finer points of the poetic arts; it was written in my head at 4:30 this morning as I lay restlessly attempting to find Elusive Sleep.)
An Ode to Pills at 4:30 A.M.
by Elizabeth Crispina Johnson
Twinkle twinkle little pills
How I wonder what you kills!
Down into my gut so low
Vanquish ills where e’re you go!
Swallow, swallow; it's the drill,
Finish script and then refill.
When the blazing sun is gone,
In my hand I gaze upon,
a potpourri of colors bright,
Medicinal cocktail for the night.
Swallow, swallow; 'til no more,
Glide and slide I do implore!
Lying here now in the dark
On your journey you embark;
And I do mine, of diff'rent kind.
In my body you're confined,
But I? Off to anywhere,
borne by poetry and a prayer.
I am discovering there are innumerable facets to the cancer experience. Waiting is one of them and thus far (six weeks in), it seems to be a defining part of the experience, as well as inescapable.
Soon, my phone is going to ring and once again my world will shift. I will learn what the surgeon has learned about my cancer: if it has spread and to where, the treatments needed, the prognosis. I am impatient to hear the news. I wonder if there will be an audible sigh of relief as I learn that all signs of it have been eradicated by the surgery, or if there will be a silent internal moan of dismay as I am presented with distressing news that “further treatment” is needed. I have heard the words, “I am sorry; we did not get the results we hoped for” too many times for my liking.
I looked up quotes about waiting, in hopes of finding something wise or witty that would bring interest or a dash of pizazz to this post. All I found were saccharine sayings, predictable platitudes, tiresome twaddle, and endless gobbledygook. Maybe it was the mood I was in. But I wonder, are there any clever or sage or even humorous statements about waiting?
In the comments, send any along that you like. If they are from you all (my friends and readers) , I am certain to like them.
This is my third attempt at writing a first sentence. Even as I write it, I recognize that I could delete it a myriad of times, rewrite it innumerable more times, and still question whether or not it was the right way to begin this narrative. Interesting thought, “the right way to begin this narrative.” As though there is one. I think journal entries of one’s cancer journey (why do people call it that?) should probably not be written, scrutinized, re-written, and edited, as would a manuscript for submission to a publisher.
Writing a journal/blog is new to me; I usually write for young children. I seem to be able to parse meaning from life more effectively if I do it from the viewpoint of a six year-old. I think I need to keep that in mind as I move forward. I should also remember that in its broadest sense, what I am now going through is a part of the human experience; at its heart it is not unique at all. Although not as the result of any scientific methodologies or statistically-based studies, I can be certain that 100% of the significant aspects of my present situation have been or are being experienced by others at one time or another: ill health, fatigue, shock, fear, anger, disbelief, pain, emotional and spiritual wobbliness, and so forth and so on.
Enough procrastinating. It is time to type the words. Maybe reading them will make this rather surreal feeling I have dissipate and make it more real. (In retrospect, perhaps this should have been the opening sentence.) I have cancer. There it is. Wait. In all caps; it feels that big. Also, it deserves a line of its own. It has earned center page alignment; for the last week, it has become the center of each moment of each day.
I HAVE CANCER.
It is my hope that by beginning this journal, I can shrink it down to a manageable size, and get it to live alongside all the other parts of my life instead of being my life. Of course, what I really want is to delete it altogether, but I have no cancer-delete key. I have professionals working on it (a team of 3 oncologists), but whether they will be successful remains to be seen. Ah. There is part of the heart of the matter for this moment at least. "...but whether they will be successful remains to be seen.” Indeed, the "remains to be seen” part. The waiting. But that is another blog post. You will have to wait.
Note from Elizabeth
Although I am determinedly declaring that I will not allow being a cancer patient to define me, I recognize that in truth, for the next several months, it will in many ways do just that, This blog, Fighting with the Wind, is where my medical updates, philosophical musings, humorous anecdotes, heart-warming stories, spiritual contemplations, angry rantings, and joyous celebrations can be found.