In my previous entry, I wrote about how I was determined to spend November counting my many blessings. It has taken me years to understand that blessings are not always big changes or events (although sometimes they are). The little things matter, too. In an attempt to demonstrate this, I thought I would share some excerpts from my own gratitude journal with you.
November 8th, 2018
Today, I am grateful for:
Progress in physical therapy
Finding old pictures (even though they made me tear up)
Glimpsing a flock of white birds flying across the dark-gray sky. The neighbor’s maple tree turning a brilliant shade of canary yellow.
Please note, that some of the entries in my gratitude journal are images from the day. Listed images are usually quite beautiful—something that I simply want to remember or use in a subsequent piece of writing. The birds and the sky, for instance, created a stunning contrast. It took my breath away.
Although it didn’t make the day’s gratitude list (which was an oversight on my part), check out our solar mobile. It stopped working mid-summer, but now it is illuminating the back porch once again:
I thought it would be educational (for me) to compare 2017 to 2018…so I leafed through my gratitude journal to find the closest date, which happened to be November 6th, 2017. On that day, I was grateful for:
Seth (my fiancé)
What did my fiancé do on that day? I have no clue, but considering that #2 reads, “good food”, I would wager that he cooked something tasty for me to eat. He is a man of many talents and, fortunately for me, cooking is one of them.
Why did “walks” make the list? Going for a walk may seem like such an ordinary activity—but for someone that had had a tumor in her lumbar spine—going for a walk, around the block, with a cane, was quite an accomplishment.
I have been in physical therapy since April 2018 and I am now at the point (see gratitude list for 11-8-2018) wherein my physical therapist is helping me put the “finishing touches” on my gait and my balance. Stairs beware! I’m coming for you!
Thank you, Dear Readers, for your continued prayers, words of encouragement, and light. Please feel free to share your own blessings in the comments or by private message. I would love to read about them!
The wind was fierce—and cold—the morning that I wrote this blog post. It shook the wind chimes hanging on the front porch; their melody not the slow and calming tune that I had grown accustomed to. Instead, it was rushed.
Still beautiful, but rushed.
In many ways, I have lived my life this way—rushed, and rushing myself. Alderaan is helping me to break this habit.
My fiancé and I didn’t have Alderaan (Aldie) for a great length of time before I relapsed with Acute Lymphoblastic Leukemia. I knew that cancer treatment would impair my immune system, so I sent both of our cats to my parents’ house where they would be cared for (and downright spoiled). We’ve been separated from Alderaan for so long that it’s almost as though we are welcoming a new cat into our lives.
For instance, who knew that he would turn out to be an actor? He rolls—yes, rolls—down the stairs, just to antagonize Luna (the puppy). Trust me, this is an act. He may have short, little legs, but he’s perfectly capable of walking down the stairs. I’ve seen him do it at least a dozen times.
Another revelation: Aldie is an early bird. He wants to be fed breakfast, promptly, at 5:30am. Then, once his stomach settles, he wants someone to play laser pointer with him. I’m usually quite busy in the morning—especially on mornings that I have appointments to prepare for—but there’s this quiet voice that tells me to slow down, to cherish time spent with Aldie. For this one moment, the most important thing in my life, is watching Alderaan chase a red dot across the floor.
It’s not going to be this way forever, so I have decided to enjoy the little moments whenever I can.
My fiancé and I recently attended a memorial service, “Celebrating the Life of Douglas R. Skopp, Ph.D.”. We both deeply respected (and continue to respect) Dr. Skopp. We miss him. There were a variety of speakers at the service: Dr. Skopp’s colleagues, members of the community, former students. Some of the words that were used to describe Dr. Skopp were:
Some of the speakers expressed the desire to have just one more cup of coffee, or one more dinner with him—and, it hit me then, that my fiancé and I were quite fortunate to have had that very opportunity in September of 2017.
Right before my bone marrow transplant, we had had the privilege of having dinner with Dr. Skopp and his wife, Evelyne. It was a wonderful, inspirational evening—and exactly what I needed before shipping off to Boston for the transplant.
Dr. Skopp had been a mentor and a source of light for me since the first time I had had cancer in 2010. He mentioned me in the “Afterword and Acknowledgements” of his novel, Shadows Walking. To paraphrase, he felt that I was teaching others how to appreciate every day.
He was wrong about that; he was the one that taught me how precious every moment was. I was young and I was angry the first time I had cancer; his positive outlook turned my negative one around on countless occasions. He gave me hope. He encouraged me to keep focusing on healing, to keep learning, to keep living. I wish I had had the foresight to say ‘thank you’ before it was too late.
Perhaps the most significant moment at the memorial, for me, was when one of the speakers relayed some of the advice that Dr. Skopp had once given to him. It was, as follows:
“The most important promises to keep, are the ones [that] you make to yourself”.
This advice has stayed with me, every day, since the memorial. I ask myself, what promises have I made to me? Have I made any of them a priority?
The answer came to me with the click and the tap of a keyboard; continuing to write and, one day, publish some of my fiction—these are promises I have made to myself. The service rekindled my commitment to these promises.
Another important promise: to play laser pointer. Although it primarily benefits Alderaan, promising to play laser pointer is also a promise to me. It’s a promise to slow down, live this life, and love its little moments.
As always, Dear Readers, thank you for your prayers, your love, and your light. It has carried me through so much this past year. Thank you, thank you, thank you.
I do enjoy Autumn—picking apples and buying freshly made cider donuts from local orchards. There’s nothing quite as wonderful as a mug full of hot apple cider steeped with Mulling Spices. The Fall foliage, too, is breathtaking. I hope, as one reader (thank you bloomlover!) suggested, to take a ride through the Adirondacks, bring my camera with me, and try to capture some of that beauty.
When I was a child, my family would travel to Covey Hill in Quebec, Canada to pick apples. The orchard there seemed enormous! Year after year, it was busy with smiling, laughing families and couples. I remember bringing home more apples than we could eat before they spoiled—which meant Mom would bake pies and apple crisp just to use them up. The house would smell absolutely delicious.
Also delicious, was all of the Halloween candy we would score while trick-o-treating. Perhaps the most magical memory I have of Halloween involves my mom, one of my aunts, my brother, and two of my cousins. I was still in Elementary School at the time and I can’t remember what my costume was; my brother might have been batman. As we were going door-to-door asking for candy, we came across several black kittens. They were prowling the sidewalk in front of a little house.
I remember wanting one of those kittens more than another candy bar or lollipop. Of course, I didn’t get one. I couldn’t just scoop one up into my pumpkin candy bucket…but, just to be clear, it would have fit.
Someday, I’ll have a black cat. I think I’ll name him Simon.
As the weather grows colder, and the days shorter, it is important to remember those people, places, things that warm your heart. The very word “warmth” conjures memories of my parents’ wood stove. Nearly every Sunday afternoon, my mother would cook a pork roast in the crock-pot. Its savory scent would permeate the entire house. I think of curling up on a comfortable chair, wrapped in a blanket, and reading a new book.
This year, I’ll be doing that in front of our natural gas fireplace. I’ll probably have to share the recliner with Luna (which is not as easy as it used to be since she’s now 6-months old and pushing 45 pounds). She’s grown up so fast!
Hanging from the fireplace’s mantle, though, is something else that warms my heart—a wreath that my mother made for me.
I adore the scarecrow in the center of the wreath. The little guy brings a smile to my face.
I hope, Dear Readers, that you, too, are finding things to smile about as the seasons change. Take a moment to marvel at the beauty and the magic that still inhabit this world. Enjoy it. Store it up like squirrels and chipmunks hide acorns and pilfered bird food.
There’s a Boston appointment waiting for me this week. It includes 7 vaccinations (all inactive viruses, I believe). Please continue to send prayers, love and light. They are so very appreciated.
In the world of Bone Marrow Transplants, the anniversary of your transplant is considered to be your “New Birthday”. I just turned “One”.
I think I’m supposed to feel elated.
The truth is, all I feel and see are confused flashes of that hospital room.
I can’t remember much of my time as an inpatient. Preparation for a transplant is both physically and mentally demanding. The chemotherapy that I was given in Boston—just days before the actual transplant—was harsher than all of the chemotherapy that I received during cancer treatment. The Total Body Irradiation completely drained me.
I was also higher than a kite on pain meds, dreaming about being trapped in a basement…and something about cave trolls. What I do seem to remember are the challenging moments. My mind has a penchant for that. Don’t ask me to remember happy milestones or joy. I’m not wired to recall pleasant memories, although I wish that I was.
Breathing would be a lot easier if I could focus on positive details such as the pigeon that sat, every day, on my windowsill—as if it were watching over me. Was it an angel? Or just another city bird? I remember naming it, “Bird Butt”, because it always had its tail feathers pressed against my window. I couldn’t take a decent picture of it with my cellphone…so…if it was an angel, I can’t imagine that it was too impressed by me or my “creative” naming abilities.
So much has happened in the year between naming “Bird Butt” and the present day.
The field I admire—the one across the road—has been turned into square bales. I watched a farmer mow the field and bail it. I began to appreciate him as much as I did the field. He walked with a cane and, yet, somehow was able to climb up and down from the tractor’s seat. As someone that once relied on a cane to walk, I know that this was no easy task. This man was determined. A hard-worker. Someone to respect, to emulate.
Do I miss my former view? Yes.
The field, though, has not stopped giving me beautiful moments to ponder. Do I love what it has given me now, even more? The answer: a resounding yes!
Whenever the shadows are long, there is a rather large cat that prowls across the field. It has probably been doing this for longer than we’ve lived here—the tall grass kept it hidden from sight. Now, however, the feline is visible. I can’t tell if s/he wears dark stripes like my Wallace did, or if its coat is entirely sable in color. Either way, its presence gives me joy. Hope. Dare I say, happiness?
So, yes, I ate cake on my “First Birthday”. My fiancé bought it for me and it was rather tasty. There weren’t any candles to blow out, but I made a few wishes anyways.
I wished to become a positive-thinker (I would like to believe that I’ve made some progress in that department).
I wished to help others whenever possible.
And, finally, I wished to stockpile pleasant memories—and actually remember them.
Thank you, Dear Readers, for all of your prayers, kind words, and love over this past year. Please continue to send light. The recovery process has only just begun. I have three to six more months on steroids and my anti-rejection medication. They’re both immunosuppressants, so I will still have to be cautious about what I expose myself to.
The bright side? I’m “One” now…my legs are wobbly…but I’m starting to take my first steps toward health.
I constantly see memes that refer to patience and time. I am guilty of sharing those memes rather frequently. And, while I do believe that, “things happen for a reason”, that adage has never felt as real to me as it did this past Wednesday.
We had to travel to Boston for another transplant check-up. My check-ups usually consist of two parts: lab work and seeing a member of my transplant team.
Occasionally, there are additional tests or specialists to see. This was one of those times. In between bloodwork and seeing my transplant doctor, I needed to do a Pulmonary Function Test (PFT). Was I worried about my lungs? No. Was anyone worried about my lungs? No. I can breathe; the test was simply part of the after-transplant care plan, to see if chemotherapy and/or radiation had done any damage to my lungs.
Those of you who are friends with my fiancé on Facebook know that this trip to Boston was rather speedy. There was, of course, traffic as we drove into the city, but it didn’t come to a standstill. Unusual? Definitely. We just kept moving along, driving smoothly into Boston.
We were an hour early.
Another abnormality—the lab called me back to draw my blood almost immediately. This NEVER happens. Phlebotomy is usually 20-minutes behind schedule every time we go to Boston—this day, though, there was no wait. The nurse quickly and expertly accessed my power port, drew 14 vials of blood, and sent me off to my PFT.
The synchronicity—the perfect timing of the commute and the lab work, meant that I was an hour early for my PFT. I had barely sat down in the waiting room when I was called back to begin the test. The specialist conducting the test was kind, but also quite focused on time. In retrospect, that focus makes sense; PFT tests examine your breathing—how long you can exhale, how long you can hold your breath. At least that’s what I remember…my Post-Traumatic Stress Disorder was triggered shortly after we began the test.
For those of you that don’t know, the first time that I had cancer in 2010, I developed an infection that shut down my kidneys and liver. I woke up on a ventilator in the Intensive Care Unit (ICU). Eight whole years later, I still cannot be told to focus on my breathing without mentally going back to that ICU hospital bed. The medical apparatus used in the PFT exam is quite different from a ventilator—but it doesn’t matter. It was medical equipment, in my mouth, and it involved breathing.
I lost it.
If it hadn’t been for the respiratory specialist’s kindness, or her accent, I would have quit.
Her accent? Yes, her accent and her use of a particular word brought me back—first to a happy memory, and then to the present moment.
The word she used, translated into English, roughly means, “this and/or that”. In some ways, it’s the equivalent of the English, “well then”. I can’t tell you the word because I have no idea how to spell it, but I first heard it from a professor who guided me through a college internship in Canada. The professor was a light whenever homesickness tried to set in. She was from the Czech Republic and would use the word quite frequently.
Hearing that word again, in a vulnerable moment, freed me from the ICU room in my mind. Ironically, the word helped me to breathe.
When I finished the PFT, the specialist—who was from Russia—gave me a hug. I apologized for my break-down. She shook her head at me. “You’ve been through a lot. You can cry whenever you need to; cry wherever you need to.”
My lungs, Dear Readers, work. Apparently, my ears do, too, because I was able to pick out a word that I haven’t heard for nearly a decade. This, my friends, is synchronicity—when events align as if a divine plan is unfolding. As is written in the Holy Bible: New International Version, in the book of Jeremiah 29:11: “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
If we hadn’t arrived in Boston early, if the lab had been running behind schedule like it usually does, would I have had that particular respiratory therapist for the PFT? Probably not. It might sound crazy, but I think I was meant to meet her—because someone upstairs knew I was going to need that accent, and that word, to pull me out of a PTSD episode and guide me through the remainder of the respiratory test.
Please continue to send prayers, light and love—they’re working. My transplant doctor estimates that I’ll be on immunosuppressants for another three to six months. In that time, my team will slowly, and carefully, be tapering me off of these medications as well as all of the accompanying medications (anti-viral medications, antibiotics). The timing of it all may not be what I would have liked, but there is a pattern. There is, clearly, a plan.
My last post was about telling the truth—my truth—how I really feel, how recovery from transplant is progressing, how the timeline is not what I expected it to be.
The adage, “the truth will set you free”, is, well, true.
Once I had committed my truth to paper, once I had shared it—I felt a tremendous sense of relief, like I could breathe again. The weight on my shoulders was a bit lighter.
It—how I felt—wasn’t a secret anymore.
I didn’t have to pretend that everything was wonderful or even okay.
Perhaps the most surprising change is that telling the truth created space in my heart. The space isn’t a hole. My heart isn’t empty or missing something. There’s just more room in it for feelings other than fear and defeat. It’s only been a week, but I’ve decided to redecorate that space with beautiful moments and images.
Among those images, is the view from our front door.
Our house is surrounded, on two sides, by thick cedar hedges. A few deciduous trees have tried to grow amidst the cedar, stretching taller and taller to reach the sun’s warm rays. Wild grape vines cling to the cedars for support.
The only clear view we have is out the front door and windows, which face the road and an unmown field beyond it. To me, there’s something magical about fields. I could probably attribute this affinity to the French-Canadian habitant in my bones and in my ancestry. The field’s grass is tall now, shining golden at mid-day (this photo doesn’t do it justice). Milkweed is interspersed, attracting butterflies of all colors and varieties. I smile whenever I see a winged pair fluttering between the wildflowers.
Bambi, and his friends, would say that they’re “twitterpated”.
This attempt to redecorate my heart with beautiful moments reminds me of a song that I used to listen to when I was younger. In fact, after my last chemotherapy infusion (the first time that I had cancer), I blasted the song on my brother’s stereo. Even back then, my brother, a talented musician, had plenty of speakers; I put them to good use that afternoon.
The song that this view, that this moment in my life, evokes is entitled, “Beauty from Pain”. It’s by the Christian rock band, Superchick. Some of the lyrics are as thus:
After all this has passed
I still will remain.
After I’ve cried my last,
There’ll be beauty from pain.
Though it won’t be today
Someday I’ll hope again.
And there’ll be beauty from pain.
You will bring beauty from my pain.
Although the song makes me tear up, I also find it to be empowering. Hopeful. In many ways, it’s a reminder that I can keep going…that God will use this experience for good, and that my current health situation will not be my situation forever. My transformation as a person isn’t complete yet.
As the proverb on my home page reads, “just when the caterpillar thought the world was over, it became a butterfly”. I’m still in the process of becoming a butterfly.
Thank you, Dear Readers, for your continued prayers, love, and light. They are so very appreciated. We’re Boston-bound later this week for a transplant check-up and a breathing test (it’s standard procedure; I am not worried about my lungs, nor are my doctors). Please continue to send positive thoughts, though; as some of you know, Massachusetts’ traffic can be daunting. Thank you, thank you, thank you.
I shield the people I care about—including you, Dear Readers—from a lot of what I feel and live with on a daily basis. I don’t like people worrying about me; I certainly don’t want pity. I just want my life back…which…having survived cancer when I was in my early twenties, I know is impossible.
You can’t go back.
The setting for ‘normal’ has changed. Forever.
Of course, this isn’t a rule that applies to everyone. There are survivors that accomplish amazing feats after treatment ends. Sometimes those achievements occur in the world of work. Sometimes it’s on the side of a mountain. Sometimes, they emerge from the cancer world happy, healthy, and stronger.
But not me. Not right now, anyways.
I only hinted at this in my last post, but my heart is currently broken. My transplant anniversary is quickly approaching and, by most standards and available literature, my immune system should be ready to go at that point.
The hard truth is, my immune system won’t be ready.
I’m still on too many immunosuppressants for my system to come back on time. It is currently impossible for me to be taken off of these medications as my borrowed bone marrow and my body don’t get along like they should. To take away the anti-rejection drug or the steroids (both immunosuppressants), I would become infested with Graft vs. Host Disease (GVHD). It has happened nearly every time that my transplant team has tried to taper me off of these medications.
So, what does that mean?
My transplant anniversary, September 21st (also known as my “1st birthday”), is not going to be the magical day that I had so foolishly hoped for. All of this time—the entirety of 2017 and 2018—I’ve been lying to myself. I kept pushing through the appointments, repeating: September. September. Everything will be better in September.
September isn’t going to change anything for me. I won’t be freed from wearing a surgical mask and gloves in public. The strict dietary rules will continue to be applicable. Worst of all, I won’t be able to live with Alderaan (our cat) until my borrowed marrow and my body decide that they like each other.
All of this hard work, all 14 medications that I take every damn day, all of these appointments—and my immune system isn’t going to be ready.
If this post sounds a bit angry, it is. I can, and I will, blame it on the steroids. It probably also sounds a bit like a pity party—and maybe it is, because I don’t usually acknowledge these emotions—so, now, while I’m still waking up, these feelings are emerging without restraint. I feel defeated. I feel like I’ve lost myself. Who was I before all of this? I don’t know. I can’t remember her.
I suppose…if I have to look on the bright side…this is an opportunity to build a new me—from the ground up. My prayer for the remainder of August, and however many months it takes for my immune system to come back online, is that this extended recovery period ushers in something good. Maybe, just maybe, a fellow ‘slow healer’ will find this post, and won’t feel so alone. Maybe they won’t feel different like I do. Maybe they won’t feel like a failure.
Please send prayers, love, and light, Dear Readers. I have cranial and lumbar spine MRIs scheduled for August 21st. It’s precautionary, but there is always the fear that the scans will show something unwanted.
Please note that I will not be sharing a new blog post this coming week.
As some of you may already know, I will be in Boston for several appointments on Monday, June 25th—including a surgical procedure. If possible, please send light, love, and prayers my way. Thank you, thank you, thank you.
Thank you, Dear Readers, for reaching out to me with a wonderful list of book titles, podcasts, YouTube suggestions, movie recommendations, and songs. You truly lifted my spirits! Although I can’t say that I feel 100% recharged, I do feel as though I am free to find beauty in the world around me again.
I mean, come on, look at these irises! They were a complete surprise to me. I had no idea that they were even growing around our front porch until Luna led me to them.
I still do not have an immune system, so gardening is not an option for me. BUT I can enjoy observing what’s already growing here (I can also dead-head—while wearing gloves—which may be an experience that finds its way into a fiction project).
Speaking of fiction, I have been writing and submitting again. My novel, Greenwood (once known as Weather Witch), is now in the capable hands of Entangled Publishing. Hopefully, this time, it will exceed expectations, be on par with the trends of the literary market and find its way into a shareable format.
It would be a dream come true to see it published.
If that doesn’t happen, it’ll go back to hiding in my desk drawer…or excerpts will find their way to this blog. I always meant for Of Pieridae & Perras to include my fiction. Maybe it’s time to start sharing it….
Thank you, again, for sending me so much positivity. I am so grateful for each and every one of you. Your support has given me—and continues to give me—strength. Please continue to send light and love.
It doesn’t quite feel like home yet, but, given some time, it will. We will fill these rooms with laughter and happy memories. We’ll add new colors. We’ll play music and celebrate the holidays with family and friends.
Owning a home, for me, is so much more than signing a stack of papers. It’s more than a financial commitment spanning a handful of decades. I realized, while watching the wild bunny in our backyard, that buying a house is an immense leap toward rebuilding my life.
Buying a home is another step toward recovery.
It’s an act of hope—hope that I will not relapse again, that the bone marrow transplant will be 100% successful, and, ultimately, hope that I will live long enough to leave my mark on this house.
I know. It sounds a bit pessimistic, but this is how you think after surviving cancer. You are constantly looking over your shoulder to see if the disease is following you. Amidst this worry, you learn how to breathe again. You learn how to live. Or, at least, you try to.
Thank you, Dear Readers, for all of your support and encouragement. Please continue to send light and love. Alderaan is back at the vet’s office. Poor little guy had a urinary tract blockage. We’re hoping that he’ll be discharged today.