Sometimes it is the intensity of the struggle; other times it is the length of the struggle.
​ Just. Want. To. Feel. Well. Again. 
​Lord have mercy.

How hard it is to even begin to list the many kindnesses and the generosity of so many who are helping me on my way through my "fight against cancer" (so aptly described I now realize.) Each offering of love is precious in its own way: unexpected arrival of flowers from someone's garden, flowers brought to the door by a florist sent by friends from afar, meals provided, cards in the mail, and texts and emails from friends who understand if I am unable to answer promptly (with no expectation that I do so at all.) Visitors, drivers, those who sit with me during chemo and keep me company, all making my way smoother and more than bearable. 

There was one gift this week that brought me up short; I was unprepared for the effect it had on me. A dear friend has been coming in to help with some of the household chores I am unable to keep up on (that list is also very long.) While she was still working I had to leave for an appointment. Upon my return I marveled at how clean my floors were and smiled at my kitchen sink no longer piled high with dirty dishes. But it was when I walked into my bedroom to rest that I was brought to tears. It was not only that I had clean, fresh linens on my bed, it was the beauty of a bed with pillows fluffed, bedspread pulled taut and smoothed, corners arranged, and attention to detail that spoke of care taken, thought and love brought to the basic task of making a bed. It had been done perhaps even prayerfully, and most certainly with a grace-filled heart that found a way to make a mundane task into a labor of love that not only blessed my body as I lay down to nap, but also renewed my heart. Thank you, dear one. And thank you to all who are praying and sharing your gifts and kindness. I am blessed.

 I lost the heart for writing. The last week of radiation combined with chemo kicked my butt and every day I thought, "Just a quick blog post," and every day I said, "Tomorrow."  The nuts and bolts is this: having completed the 3 surgeries and five weeks of radiation and low-dose chemo (don't be deceived by the word low-dose; it packed a punch), I am now "on a break" to give my bone marrow time to recover a bit before starting the BGC, Big Guns Chemo, two weeks from today (August 23). All the techs and docs say," Enjoy your break!" Despite the fact I do feel a bit better physically and I am happy not spending half of every day in treatment, I find this the hardest time of all so far. I wish I could embrace the feeling almost normal. Mostly, knowing it is so very fleeting, it depresses me.  Four rounds of BGC over the next three months looms overhead like a colossal vicious cloud. Kinda takes the sense of relief out of the present. Here endeth the Nuts and Bolts. On to the Poetic (of sorts.)

In Between
By Elizabeth Crispina Johnson
 
The storm has passed; the wind grows still.
Gray drifts away and skies turn bright.
The sunflowers, though beaten down,
Lift their faces and embrace the light.
 
Yet, over the hilltop, black clouds amass,
While as tho’ lilies, the sunflowers quietly abide,
Gaining new faith for storms ahead.
Absorbing strength for whate’r betide.
 
Ah! For grace to be the sunflower.
Lord, have mercy.
​

So today my husband went to our local apothecary and brought home yet more meds pour moi. As he set the bag down on the kitchen counter, all I could think was, "and the list goes on, the list goes on."  And that was that. It was a matter of only a tiny hop, skip, and jump (figurative since a pokey walking pace is all I've got left these days) to an impromptu rendering of my newest musical composition (also about pills for those of you who still hold fond memories of the hit song, "Twinkle, Twinkle Little Pills!")  This one inspired by none other than Sonny and Cher's ,"The Beat Goes On."
 
The list goes on, the list goes on.
Heart still pumps medicament to the brain
La de da de de, la de da de da
 
Meds-free was once my rage, uh huh
History has turned the page, uh huh
The many pills, my current thing, uh huh
Pharmaceutics of thee I sing, uh huh
 
The list goes on, the list goes on
Heart still pumps medicament to the brain
La de da de de, la de da de da
 
The drugstore's my super mart, uh huh
From start to end, and end to start, uh huh
And when I’m done they bring me more, uh huh
‘Til they fill and overflow my drawer.
 
The list goes on, the list goes on
Heart still pumps medicament to the brain
La de da de de, la de da de da
 
Now sittin' in my chair to reminisce
Of past days when it just weren’t like this.
The costs keep going higher all the time
Paying out ‘til I haven’t got a dime.
 
The list goes on, the list goes on.
Heart still pumps medicament to the brain
La de da de de, la de da de da
 
The list goes on(Compazine), the list goes on (Zofran)
And the list goes on (Tylenol) yes, the list goes on (Magnesium)
And the list goes on (Calcium), and the list goes on (Benedryl)
The list goes on (Ibuprofen),  and the list goes on and on and on and...


​Strange things seem to be happening to my brain. I admit it. 

Upon my waking. Upon my sleeping. Through all the day. My strength. My grace. My All.
Lord Jesus Christ, Son of God, Have mercy on me. 
Our Father, Who art in heaven, hallowed be Thy Name. Thy kingdom come; Thy will be done on earth as it is in heaven. Give us this day our daily bread and forgive us our trespasses as we forgive those who trespass against us. And lead us not into temptation, but deliver us from evil. For Thine is the kingdom, and the power, and the glory, now and ever and unto ages of ages. Amen.

And beside my bed to keep my mind and heart staid:

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. 
"Kyrie Eleison!" 
 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. 

"Kyrie Eleison!"

​ t