Unless my transplant schedule changes again, Dear Readers, this may well be the last blog entry that you will see from me until March.
Simply reading the above paragraph strikes my heart with a bolt of fear—it seems like such a long journey! I don’t want to be hooked up to pumps 24/7. I could do without the oversized johnnies and their standard chest slits.
I crave independence.
Privacy (haven’t they seen enough of me? I’m taking paper tape with me and if they’re not using it, that chest slit is getting closed up).
Comfort.
A recording of Berkley snoring will rock me to sleep—which, for someone with medical-based PTSD—is nothing short of a miracle.
This transplant will not be easy. I intend, however, to make it better than the first one. If I feel well enough, I will attend online classes through the Leonard P. Zakim Center for Integrative Therapies and Healthy Living. The Zakim Center’s programs are offered through Dana-Farber and I am excited by the prospect of potentially participating!
Did someone say Qigong?
Meditation with Live Music?
Chair Yoga Flow?
There are other physical offerings that, with the approval of my doctor and physical therapist, I’ll be able to pursue. I’ll probably be limited to gentle movements…because this body isn’t getting any younger nor are the chemotherapies any kinder…. This gentler, more mindful approach will give me the opportunity to rest, and dare I say, heal?
Relaxation and giving myself permission to rest have always been quite difficult for me. I feel an overwhelming sense of guilt whenever I nap or sit on the couch, binge watching a new television series. The guilt has also chipped away at the time I spend reading.
Somehow, Man’s Search for Meaning by Viktor E. Frankl has released me from that feeling.
The book was suggested to me decades ago by a wonderful college professor. He has since passed away. When I first opened Frankl’s book, my immediate thought was, “I wish you were still here”. It was swiftly followed by, “why did I wait so long to get my hands on this book?”. It would have been amazing to listen to lectures about Frankl’s work and discuss it! Frankl’s book is both fascinating and heart-rending. It’s the sort of monograph that you can’t put down.
I can’t put down my own writing, although I will have to. With doctors and fellows rounding on me three times a day and vital checks every four hours, it’s impossible to accomplish much. Plus, on the transplant unit, EVERYTHING gets sanitized. I refuse to risk the longevity of my laptop and USB drives.
When I was in Middle School, I started writing my own fiction in the back of partially used notebooks. The time away from my laptop will, of course, limit my creativity, but I wrote in notebooks once, I can do it again. I have thus far packed one journal for my future goals (ideally noting reasonable steps to reach them), one journal for my experiences/thoughts regarding transplant, one large notebook for fiction as well as my daily prayer journal.
Keep praying.
Keep sending love and light.
“Jesus is Hope.”
This final statement, consisting of three light-up words, was perched atop the roof of a red-bricked building that I drove by on my way to the car dealership. Suby-Lou needed an oil change (can’t drive to Boston on old, insufficient oil!). The lighted message served as a reminder that hope, too, is as necessary in the journey forward as oil and four wheels are.
Thank you, Dear Readers, for your presence here today. I will miss you during this hiatus, but will continue sending prayers, love and light YOUR way. Take care and I will hopefully write to you again in March.
Well, Dear Readers, it turns out that the hurried pace of this last month has affected my writing skills. Please forgive me for any tangential paragraphs, grammatical and/or spelling errors. In my experience, writing requires constant practice…which I haven’t been doing as much as I would like.
My days have been filled with prepping for Christmas and answering phone calls from both Boston and Burlington. I was starting to feel as though I couldn’t breathe nor do anything between the hours of 8-5 on Mondays through Fridays.
Can’t miss a call.
Can’t miss a call.
Ugh. I missed a call.
These were the most prevalent thoughts racing through my mind. They put me on edge. They made my emotions ping-pong all the more. Neither did the game of ping-pong stop after Friday 12/17’s mandatory webinar.
As I have had one bone marrow transplant already, much of the webinar did not consist of new information. It simply confirmed my fears that my independence was being taken from me. Eating whatever I want? Painting? Cuddling with the dogs at night? It was all going to disappear on January 14th.
I sobbed after the webinar. Then, suddenly, I wanted to punch something. Or break something and turn it into a mosaic. Broken things can be fixed, right?
I couldn’t stand how disheartened I felt, so I called my mother and sobbed on the phone. Little known fact, while I was an inpatient in Burlington this past summer, I was also an insomniac. I refused sleep medications because I don’t like taking unknown drugs. I’m also the occasional sleepwalker with PTSD. And, as an inpatient, I was being forced to live out my PTSD. I was in the center it. No wonder I couldn’t sleep!
When my mom came to visit me, she sat in a nearby chair and read to me. I drifted off almost immediately. My Boston caregiver (writing about you, honey!) will most likely have to do the same.
There are other people who have been tremendous sources of hope and strength. I have a peer-to-peer contact through the Leukemia Lymphoma Society. Eric Drew has a TED talk that is both moving and informative. Please Google it and give it a listen when you have a spare moment.
It’s amazing, too, what coffee with a friend can do.
We claimed a table in the café by the windows. It had snowed the day before; sunshine bouncing off of our city’s fresh, mostly white coat. We had a wonderful time! Knowing I wouldn’t be available after my birthday, she brought an early birthday present with her. It included this guy:
Our conversation turned to dreaming about the future and writing down goals to research. Believe it or not, I want to learn more about birds. I want to be able to recognize them. It’s a goal made easier by the cute bird feeder that yet another friend has given to me.
My coffee date encouraged me to keep dreaming and making plans. I love this idea—it gives me hope. I left the café with a smile on my face and the determination to visit the local Co-op.
The local Co-op is one of my favorite places to visit. I inhaled deeply as soon as I opened the door. I wish I knew what that scent was comprised of—I’d try to replicate it and bottle it for myself. It’s so homey, comfortable and pure magic.
On Tuesday of this past week, I was surprised by a small group of carolers from the school I was working at prior to relapse. I was so happy to see them all that I wanted to cry joyful tears! They certainly brought me holiday cheer, a smile, and the inspiration to have a “Merry Christmas”.
I made these red-and-white snowflakes for the lovely people at school.
Finally, I must share with you, Dear Readers, the song that is currently healing me. The album arrived in my mailbox as a gift from my dearest friend. I still have moments of panic, but I’m not terrified anymore. I’m not sad. I no longer require a punching bag. I am simply heartbroken, but this song conjures candlelit memories. It provides me with clues as to who I was before Acute Lymphoblastic Leukemia became a word in my personal lexicon.
I was a vocalist in the church choir. One holiday season, I had a solo in Amy Grant’s “Breath of Heaven (Mary’s Song)”. I don’t believe it’s coincidental, that this song is featured on the album that my friend gave to me.
I am waiting in a silent prayer
I am frightened by the load I bear
In a world cold as stone
Must I walk this path alone
Be with me now
Be with me now
Breath of heaven
Hold me together
Be forever near me
Breath of Heaven lighten my darkness,
Pour over me your holiness
For you are holy.
Although I don’t own any part of this song or the lyrics, I felt the nudge to share it with you. I repeat “Breath of Heaven, hold me together” on a daily basis. Sometimes, healing is more than vital signs and medications. Sometimes it’s more than the pretests I’ll be subjected to on 12/27. Sometimes, healing can be found in music. This is where I have found courage. This is my hope.
I have been blessed.
Thank you, Dear Readers, for your presence here today. May you have a Merry Christmas and a Happy New Year. I am sending prayers, love and light your way.
I’m not going to hide this. Waiting for a transplant date has been tremendously difficult. It’s given me too much time to think about my first bone marrow transplant—all of the parts of myself that I lost—and, yet, when the nurse coordinator called this week with dates, I felt lighter. Free. Dare I say, hopeful?
This change in perspective was made possible by various sources of positivity.
First, I had reached out to the Bone Marrow Transplant Information Network’s Caring Connection program for peer-to-peer assistance. I realized that I needed to talk to someone that’s been in this position, and seen the other side of it.
A second transplant is perhaps more frightening than the first. I remember too much of the pain. Too much of my independence being taken away. Now, however, I have a peer that’s survived two transplants. We haven’t had a chance to talk, but I’m looking forward to her guidance and the opportunity to learn how she soldiered through.
The Caring Connection staff member that spoke with me, was bright with hope and kind words. Her second birthday (the anniversary of her own transplant) was coming up. In fact, she was turning 8! Miracles. Everywhere.
My furry miracles
Her words, in regards to a transplant, were uplifting. She called it “a gift of life”. Until that conversation, I had viewed this upcoming transplant as the “gift of torture”. I didn’t want to do it again. I was crying every day, triggered by memories coming back to life. Then, this insightful individual gave me this gift.
I also started leaning on a recommended scripture, 1 Peter 5:10:
And the God of all grace, who had called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you, and make you strong, firm and steadfast.
1 Peter 5:10, the New International Version of the Holy Bible
Restore. Strong. Firm. Steadfast. These words are responsible for bolstering my hope and strength.
Thus, without further ado, I will be admitted to Brigham Women’s Hospital on January 14th and receive my new donor’s bone marrow on January 20th. I will, of course, be hospitalized longer than that—close to a month, actually.
This transplant, as hard as it will be, is the beginning of my third life. My third escape from cancer’s clutches. My third chance to build a healthy and fulfilling life.
Thank you, Dear Readers, for your presence here today. You are loved. Appreciated. I am sending prayers and light your way.
With Love & Gratitude,
Laura
Resources for the Curious:
1 Peter 5:10 was taken from the New International Version of the Holy Bible
I saw a sandy-colored moth flutter into the cedar hedge Saturday morning. Her speed and the work of her wings seemed to be slightly off, as if the poor thing was exhausted from the frost, the rain and the overcast skies. Was she trying to hide? I can’t say with any certainty that she was, but I do know that I have been hiding my own feelings, my growing weakness and my melancholy thoughts.
In fact, I’m pretty darn good at saying I’m “okay”, even though it’s a lie. I’m not okay. I’m struggling and exhausted beyond description. My mood is like a ping-pong ball, bouncing from happy to angry to sad.
It’s moments like these—when I am feeling hurt by God himself—that I summon Romans 8:28 to mind: “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”
God, please help me feel this purpose. Please help me feel your Love. Please give me strength.
I wanted to write fiction this afternoon, Dear Readers, but I couldn’t let another week slip by without sharing my journey with you.
What I can actually share is quite miniscule (and confusing because I have few answers and too many questions). I know that Dana-Farber Cancer Institute’s plan for me has changed. No longer is DLI (Donor Lymphocytic Infusion) the goal. For reasons I can’t fathom, I will receive a second bone marrow transplant.
Do I want to go through this procedure again? Absolutely not.
I don’t want to lose my independence. I am dreading a year of isolation—away from the people I love and from my fur babies. Because, yes, without an immune system, it’s not safe to be around any of them. This Dana-Farber’s opinion; research has shown that Sloan Kettering allows its patients to have contact with pets. Still, as a DFCI patient, my heart breaks over the fact that we will be separated for so long.
Still, despite hiding my true emotions and my level of discouragement, there’s a ray of beautiful hope that visits me. God is good, even when I am plagued with doubt and anguish.
Rainbow on the way home
Sometimes, I imagine the future version of myself. Her smile is wide and real. She’s braver than I am. Her stash of hope and inner strength are infinite. Her language is kindness. She gets to volunteer, adopt animals and garden!
Until she manifests, I’m going to somehow hold onto every Christmas light that I see. I’m going to count stars and pine cones. I’m going to cherish those moments that are imbued with love and hope.
I *should* have an appointment at Dana-Farber in the beginning of December. I’m impatiently waiting for answers, but my specialist wanted me to enjoy Christmas at home.
So, I will.
I will craft ornaments and acrylic paintings for the holiday.
I will sing hymns loudly and off-key—and I’m going to feel great about doing so.
I will continue to write and do Restorative Yoga.
Although there are many things that I don’t know, I firmly believe that I can’t do this second transplant without Him. I can’t do this without YOU. Please continue praying. Please keep sending love and light. I will do the same for you, Dear Readers. You are truly wonderful souls that I am grateful for.
With Love & Gratitude,
Laura
Resources for the Curious:
Romans 8:28 was taken from the New International Bible.
The sun was shining gently on October 6th, 2021. Little birds and bugs were waking up under its golden touch. A blue-winged moth was in the driveway, flitting from stone to crushed stone, catching my attention.
I am forever fascinated by moths, butterflies, birds—their presence is a reminder of His Wonderful and Varied Creation.
In many ways, I feel as though my life has shrunk into the size of the Blue Box pictured above. I’ve lost so much during the course of this cancer treatment. Energy. Strength. Clothes that used to fit. The smidge of self-confidence that I had left. I lost over an hour of my time this morning receiving a surprise unit of Platelets (which is why this post is a bit late).
There are, however, beautiful, broken pieces, within the Blue Box. They’re trying really hard to reunite, to heal, and form some semblance of normalcy.
Normalcy is difficult to hold on to, especially when your husband is facing yet another bariatric surgery. He had his first bariatric surgery in 2012 at 486 pounds. This procedure resulted in a weight loss that took him down to 248 pounds. Unfortunately, due to an internal hernia, another bariatric surgery is required to detangle his twisted intestines.
His goal, moving forward, is to “clean up” his diet, exercise and reach 225 pounds. It’s a healthy goal that I fully support, especially if it prevents future surgeries.
It is rare that I’m on the caregiver’s side of the bed instead of in it as the patient. I’d be lying if I said that this role change didn’t make me nervous. I worry about whether or not I have the skills to help with any discomfort, with knowing how to assist him post-procedure.
Early on in our relationship, I was warned that “big dogs don’t live long”. It was certainly a discouraging remark, but a reminder, all the same, that life is short.
We shouldn’t take a single moment of it for granted.
I struggle with moments of utter despair, PTSD nightmares, and more recently, dreams of my grandmother. I was receiving the Bone Marrow Transplant of 2017 when she passed away. I never had the opportunity to say good-bye. Maybe that loss—as well as that missed opportunity—is the source stirring up images of her. Thinking about her now, while awake, I want to cry. Yet, these memories might be intended as a source of comfort. Of love remembered. Of hope.
When I’m not paying attention to the present moment (which is often because I’ve been writing fiction—and it’s fun), something beautiful will sneak up on me. For instance, I will not be receiving any further Lumbar Punctures! Unless there are symptoms of yet another relapse, I am Lumbar Puncture free. Both my lumbar spine and my mental health are thankful for this blessing.
I’m grateful, too, for the last of the flowers. There’s something romantic about this final bouquet:
Not pictured, but destined to appear in Birchwood, are the Michaelmas Daisies growing in the Pool Hole. I originally thought that these blooms were thistle. But, no, these purple-petaled flowers are as magical as the white Toadstools growing alongside the edge of the pit.
The pups and I indulge in the magic of Halloween movies every year. There’s something comforting about watching children’s movies with my Luna and Berkley. They snuggled up tight to me as Marnie (a young witch) visited HalloweenTown during the infamous Gray Spell.
The space between them was my spot!
Even if our pups nap during the film, their interest in what has become our Halloween tradition, fills me with hope—as did the Blue Box from Be the Match. A journal, a pen, as well as some research information, filled the small package. What more could a writer ask for?
Maybe some volunteer readers? If you have the time to read, please share your email address with me and I will crowd your inbox with the first 10-pages of Greenwood. Imagine you’re an editor and suggest cuts and grammar corrections. It has taken decades to create this piece, to edit it, but I’m finally ready to share it more widely. Although I am aware that it still needs work, I’m proud of it, on some level.
Thank you, Dear Readers, for your presence here today. You ARE HOPE, LOVE and COMFORT to me. I am sending love and light your way.
With Gratitude & Love,
Laura
Resources for the Curious:
Originally available in 1998, the first installment of HalloweenTown can presently be found on Disney+. If you need to laugh, but want to watch something that corresponds to the season, look no further than HalloweenTown.
I had an appointment in Boston on Wednesday, 9/1/2021 at 2:30 for labs and 3pm for a consult. My husband and I were both dreading what their advice might be. There we were, speaking with one of the experts on Acute Lymphoblastic Leukemia and Bone Marrow Transplants (as we had in 2017), but this relapse—this third one—has felt more dire. More critical. Mere inches from Death’s drafty doorstep.
Fortunately, we also walked into that consult with full bellies and full hearts from our brief stay in New Haven, Connecticut. I’m in love with New Haven! When I was in college, Augustana’s “Boston” was one of my favorite songs. I have no legal rights to these lyrics, but they would compel me to look further than my own front door toward a very different future:
“She said I think I’ll go to Boston
I think I’ll start a new life
I think I’ll start over
Where no one knows my name….”
Thing is, my name is known in Boston now (Bone Marrow Transplant 2017 and subsequent follow-up care). I guess, if I continue to treasure these lyrics, I’ll have to make a ‘a new life’ somewhere else.
New Haven, Connecticut seems like a strong candidate. It had this relaxing, yet adventurous vibration while we were there. The ability to walk wherever we needed to go was a lovely change. As the sun disappeared, the twilight sky shifted to rose-gold. Outdoor eateries bustled with people and tall planters to both aesthetically and safely separate patrons. Several establishments required us to show our COVID Vaccine cards.
The sidewalks were also busy with restaurant music, and the sound of loud engines (namely a black Impreza) and motorcycles echoing off of brick buildings. Couples strolled around the sidewalks, too, stepping over the cement imprints of maple and oak leaves found there.
Autumn, as well as the college students, was moving into the neighborhood.
Our night-time excursion ended with a Bubble Ice Cream Cone. It was sweet and chilly—staining my hands a happy shade of turquoise-blue.
The next morning, we visited Atticus’. Doubling as a book store and a coffee shop; I was immediately delighted by the atmosphere. It was sprinkling outside, and the shop’s windows were fogged up with moisture, but added a degree of mystery, enchantment to the colorful shop. We sat near the fiction section, which is where I devoured the perfectly chia pudding. I tried to re-plicate the recipe at home…I have some more experimentation to do….
While my husband finished his breakfast, I took a peek at the books. I didn’t recognize many of them; a clear indication that I need to find my way back to the literary world.
Upon closer inspection, however, I realized that I already owned several of the tomes. I had marked some of them as donations to a local, used bookstore. Some of the books, however, were still on my shelves. Should I keep them? I mean, after all, they were good enough for Yale’s students to read. Maybe I should give these books that, after ten years or so of waiting, another chance?
It only took a couple of hours to make it to Dana-Faber Cancer Institute (DFCI). Although I had been outfitted with a PICC-line in my left arm, DFCI didn’t have the correct documentation to use it. SEVEN vials of blood were drawn from my last good vein, “Old Faithful”. I was so proud of this seemingly little accomplishment.
During the consult, a tentative plan was laid out before us. I would receive up to 6 more cycles of Immunotherapy in Vermont. Eventually, my original donor (the most wonderful woman in the world) will add her Lymphocytes to this consolidative/preventive approach. It’s graded; every 6 weeks or so I will need to go to Boston for Donor Lymphocyte Infusion.
To have a plan is beautiful. It’s progress. It’s also excruciating waiting for it to be enacted.
What do you do in such circumstance? You do as the card at the beginning of this post instructs, “surround yourself with all happy things”.
We spent that night at Westin, a modern hotel fitted with two escalators and its own bar. The dining room hosted an incredible breakfast. I choose to feast on the Challah French toast (mostly because it was something that would be difficult to find where we live).
We drove to north Boston, where we walked a bit of the Freedom Trail, stopping to admire the Old North Church and Paul Revere’s Monument:
The Old North ChurchUnsure of what kind of flower this is, but it was in the same courtyard as Paul Revere’s Monument“The British are coming!”
We visited Little Italy, purchasing cannoli from pastry rivals, Mike’s and then from Modern Pastry.
Our next stop on our return home was Ocean House Hotel at Bass Rocks. Still located in Massachusetts, we strolled along a sandy beach. I should have gathered some of the pearlescent, purple and white seashells.
I believe, however, that the happy memories that we created are more priceless…and needed for cloudy days than seashells, which, once collected, are destined for dust on a shelf.
We had our own 2nd floor balcony and an incomparable view of the ocean at Ocean House.
Due to the hurricane off-shore, giant white-capped waves hit the rocks continuously. There was a paved path the along road and we walked down it a couple times to see what there was to see. Rose of Sharon, in both fuchsia and white, filled in the cracks between the great stones. Little birds perched in the tall grasses and sumac.
There is the sea, vast and spacious, teeming with creatures beyond number—living things both large and small.
Psalm 105: 25 (NIV)
With a pinch of bravery and stupidity, we climbed out on stones to get better views of the ocean. What an adventure! Seagulls, of the white and fledgling-brown variety were our constant companions, appearing out of nowhere, or so it seemed.
We went to breakfast at a charming greasy spoon diner. Dark roast coffee, after a few mornings of hotel room medium blends, was delightful! I was so enchanted by the coffee, that I can’t recall what I ate for breakfast….
Whale-watching commenced at 8:30am. As instructed by the crew, we could see the whales’ green fins rising in the waters.
Boston on the horizon…
Whenever one of the great mammals surfaced, it was breathtaking and an opportunity to take note of their unique under-the-tail markings. These white and black patterns help conservationists and researchers identify our larger brethren from each other.
Our final stop was BAM (Books-A-Million). I’ve had my eye on BAM since 2017 when I was receiving my Bone Marrow Transplant in Boston but couldn’t go adventuring. Everything I’d hoped to see was there! I took note of the trends, drooled over the hard covers and noted how cute the pocket books were. And the mugs! I have an addiction to coffee mugs. It’s almost as strong as my addiction to caffeine itself.
I know I’ve written about cardinals in the past, but maybe not the two females I observed this morning. Amid the ruin of the Pool Hole, these two gracefully attired ladies gathered their breakfasts. Their muted scarlet frocks accentuated the bouquet of dark purple thistle that has taken root there.
It may seem pointless to gather glimpses of birds and newly cut fields at twilight, but then, there are these days that require me to summon strength:
Post-Port Procedure. Thank God for my non-biological sister who took me to the appointment.
Now, there has been some puppy-dreaming going on between these four walls. I’m not in a position to take on the challenge of a puppy, but I long for the opportunity to scoop someone up and shower him or her with pets. I long to be someone’s favorite again.
We have two beautiful pups that could never be replaced:
I miss my Alderaan, though. I miss him forcing me to share computer chairs and yoga mats. If I knew when I could take him back, I would create a countdown on a calendar.
After living with two other felines since June, I’d also look for a big, fat companion for him. Or a kitten…time will tell if he gets a younger or older sister.
Thank you, Dear Readers, for your presence here today…for your continued kind thoughts and prayers. You, too, strengthen me on the tough days. Until the next time I post, take good care and know that you are loved.
With Gratitude and Love,
Laura
Resources for the Curious:
The card pictured in this entry is from Hallmark: good mail card. It sparkles, featuring artwork by Marenthe Otten, Courtesy of Little Rogers Studio. Studio INK was also involved in its production.
Augustana, the band, to the best of my knowledge, dissolved in 2011.
Psalm 105:25 was extracted from the New International Version of the Bible.
Watching Bob’s Burgers like they’re sitting in a movie theater…
I’ve had a real hankering for Kodiak’s Instant Oatmeal cups. I could simply place a couple of them in my next Hannaford-to-Go order, or throw some in my cart whenever I’m able to stop by the grocery store when it opens. I prefer to shop in empty stores; I’m trying to stay healthy, which means staying away from anyone that might be carrying a virus or be infected with something equally contagious.
Times like these, call for creativity.
I microwaved some instant oatmeal in one of my bowl-sized cups:
A tablespoon of peanut butter was added and then thoroughly mixed.
Next, came a small packet of milk chocolate M&M’s. Stir it altogether and you get something similar to Kodiak’s oatmeal…but not nearly as tasty.
I’ll eat it though; it’s one of the food items that doesn’t upset my fussy stomach.
Creativity is helping me in so many other ways, too. I’m having some difficultly discovering immersive television shows, but hand me a paint brush and there’s suddenly joy in my veins.
It replaces the fear of both the known and the unknown.
These guys make me smile – they look like they’re singing “Joy to the World”.
Another source of encouragement came in the form of a book from a reader (and friend)! The reader generously sent me a copy of, Every Day Spirit: A Daybook of Wisdom, Joy and Peace, by Mary Davis. Within these inspiring pages is a prescription for “Gratitude in Advance”.
What is “Gratitude in Advance”? Simplified, it involves keeping a list of future items to be grateful for, such as accomplishments. The process begins by writing the list in a journal or notebook and, then, on the following day, rewriting the same list on the next blank page. These hopes and dreams will eventually manifest and can be knocked off of the list. Be ready to replace them with something even better!
Although I do keep a gratitude journal, there are days when finding something to be grateful for is quite difficult, especially when I’m overtired or in pain. THIS, “Gratitude in Advance” THOUGH—is IMAGINATIVE. It gives me the opportunity to dream about a future. An excellent, HAPPY future.
Confession: I stole the book’s first “Gratitude in Advance” item. I mean, who doesn’t want to be able to say, “Thank you for the blessings of this day! I am in radiant health”.
So, yeah. It’s shameful, but thievery occurred.
I have at least fifteen future gratitude statements in my new journal. Two months ago, I didn’t know whether or not I was going to survive this relapse. I still don’t know the answer to that question, but I have plans. Future accomplishments to be excited about, for instance: “I am a published fiction author”.
Will I get to knock that item off of my “Gratitude in Advance” list? Someday. Hopefully.
At the moment, Dear Readers, I need to write about Post-Traumatic Stress Disorder (PTSD). It has worsened over the last few weeks. It now includes walking into Interventional Radiology (IR), which is where I must go for Lumbar Punctures.
Little known fact: my spine is slightly curved. The specialized equipment housed in IR helps circumvent this issue. It avoids the repeat of this memory that I found in a journal from my treatment in 2011:
“At some point [my doctor] said, ‘Did you feel that? I just popped through a tendon.’ My Back had terrible bruises on it.”
PTSD is something that I live with on a daily basis—not just in dusty journals or on USB drives that I’m attempting to transcribe into my memoirs. In fact, the most recent episode occurred on Tuesday, August 25, 2021 in one of the Cancer Center’s bathrooms.
I started crying, unable to stop myself from thinking about the afternoon’s Lumbar Puncture and how I didn’t have the strength to do it. I was afraid. I knew that it didn’t matter how skilled the specialist was, it was going to be painful.
It’s true that having lumbar punctures twice a week, and now once a week, saved me from having another Ommaya Reservoir placed:
However, I overestimated my own pain tolerance, my steel. I can’t do this anymore, not without help. Alligator tears drenched my mask. Sobs had to be stifled. It was the kind of sob that had the potential to crescendo into a scream.
For me, this is a classic PTSD episode. Dissimilarly, my past panic attacks involved extreme chest pain as if I was having a heart attack, difficulty breathing and talking, numbness in at least one arm.
PTSD, other than the tears, is more cerebral for me.
How did I get out of that bathroom? By the Grace of God.
After washing my hands, I decided that I needed to talk to someone. A Medical Assistant saw my tear-soaked mask and asked me how she could help. I requested to speak with my transplant nurse, my lead hematologist-oncologist as well as my neuro-oncologist. I gave all three names, in hopes of alerting one of them to this episode.
My lead hematologist-oncologist came to sit by me in my infusion chair. We talked about PTSD, about the pain that I was dreading, how he might help in this situation. Thus far, the plan includes light sedation. He’ll be notifying Dana-Farber about it. He has several colleagues more versed in mental health issues and will pursue their advice—all so I am more comfortable with this treatment plan.
That afternoon, my mental health was more important than the Lumbar Puncture, and so it was skipped.
Skipping punctures does, unfortunately, come with consequences. It is an opportunity for the ALL to grow in my head and spine.
It’s a gamble I had to take.
Enough pain and tears. Let’s focus on being an advocate for my own mental health. Those of you who know me in real-life know that I rarely, if ever, stand up for myself. Let’s ponder the positive reaction to my confession. I’m not crazy. I’m not broken. I simply carry invisible scars.
As previously mentioned, I have been attempting to write my memoirs. I’m using old journals for Cancer Experience No. 1, blog posts for Cancer Experience No. 2, and I haven’t had the time nor the energy to contemplate how to share this third relapse. I have some notes…which are mostly descriptions that I’ve scribbled down of anything other than treatment. Cardinals, flowers, our pups.
I am especially enchanted by these Abyssinian Gladiolus (Acidanthera):
Due to my immune system, I haven’t been able to garden as I would like. Affectionately dubbed my ‘fake gladiolas’ due to erroneous packaging, I must say that I am delighted that these flowers have survived—and thrived.
I found that writing my memoirs—potentially sharing all of that pain—can only be accomplished in short spurts. I transcribe for a little while and then I need to unwind. Sometimes I relax with a cup of tea and Diamond Dotz. Other times it’s coloring (I recently ‘discovered’ the Gond Style of Painting on Pinterest). Occasionally, my escape is blasting music in the living room.
A few years ago—okay—it was the last weekend in 2016—I participated in a yoga workshop that culminated in a collage of magazine clippings glued to a canvas board. These clippings were meant to capture our goals and gratitude for the coming new year.
I relapsed with ALL in 2017. It manifested as a tumor in my Lumbar Spine. It’s another reason why my present Lumbar Punctures hurt so badly.
Still, the collage was powerful. Many of the magazine clippings that I chose for my canvas on that last day in 2016, involved pictures and words of protection, gratitude and blessings. The blessing I received that year? A bone marrow graft from one of the kindest women I know. She gave me almost four years of remission.
I may include some magazine clippings in my new journal. It’s a great way to visualize a bright future filled with love, health and laughter.
Thank you, Dear Readers, for your presence here today. It means so very much to me. Sending prayers, hope and light your way.
I found a monarch butterfly by the mailbox on Saturday. Its crushed orange wings broke my heart.
My wings have been crushed, too.
It turns out, Dear Readers, that summoning the courage and the tenacity to fight cancer and go through treatment is a never-ending and absolutely grueling job.
While writing my memoirs (which I have started to do again), I have discovered just how similar younger me and present-day me feel about specific subjects. In August of 2011, younger me wrote in her journal:
Over a quarter of all Acute Lymphoblastic Leukemia (ALL) cases relapse. I am deathly afraid that I will be among that number. I do not want to go through Course I again. I do not want to have a bone marrow transplant.
It’s probably a good thing that younger me didn’t know that she would relapse twice and have a bone marrow transplant at least once. The odds of having a second bone marrow transplant seem to increase with every appointment.
As many of you know, I am responding well to treatment. My bone marrow is clear of the ALL, as is my Central Spinal Fluid (CSF). At the onset of this relapse, Car-T Therapy seemed to be the ultimate goal…except, that, Boston may not want to include me in a Car-T Therapy study because I had CSF involvement once-upon-a-time.
It’s cruel. Unfair. If Car-T isn’t a choice, then another bone marrow transplant becomes the favored option. And, even if it’s my best chance at survival and will buy me several years of a ‘normal’ life, I don’t think I have the fight in me for another one.
I am exhausted…held here by mere sutures.
Those of you, Dear Readers, that were with me in 2017, may remember some of the details of transplant. You may remember that my donor was not a relative, that the preparation leading up to transplant included high dose chemotherapies that left me bent over buckets and Total Body Irradiation that annihilated my reproductive system.
Transplant, the first time, cost me an entire organ system and a whole bunch of dreams. What will it cost this time?
After the chemo, the radiation, the vomiting, the loss of eyebrows and eyelashes—the transplant itself was super simple. In fact, it’s quite similar to a blood transfusion. Except, that it’s not irradiated blood to bump my hemoglobin—it’s someone’s actual marrow (also known as a graft) to replace the marrow from my first transplant.
It could, potentially, kill me.
Following the transplant is a year of strict isolation. No restaurant food until Day 100, when you can have a pizza. No shopping. Doctors’ appointments require masks and surgical gloves. No cats.
It is quite possible, that I won’t see my beloved Alderaan until 2023. He’ll be nine years old. How does a writer function without her muse? The answer, in case you’re wondering, is not well.
He loves hanging out on the mantel….
She misses him and catches herself looking for him in his usual haunts.
I may not be able to garden until 2023 either, but I can fill my dreams with plants like these (as well as ones that I would love to try growing—lilacs, rose bushes, hydrangea):
Complicating my current situation is the uptick in COVID cases EVERYWHERE. With the increased number of positive cases, Boston may restrict visitation because of the virus. Put simply, even my husband may not be allowed to visit me.
Yeah, being alone while walking through hell sounds amazing.
Deep, centering breath.
I need to shift gears, Dear Readers. This has become too dark. Let’s discuss the one reason that surpasses all others for continuing to fight: faith.
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. – Romans 8:28
He has saved me from death multiple times now. I truly believe that He has work for me to do. I can’t say with any certainty what my purpose in this life is, but I know it’s important. I know it matters. I know it will have a positive impact.
There are small moments that lift my spirits, too. Also on Saturday, while walking the sidewalk in our back yard, I saw a handsome, male cardinal. I like to think of cardinals as love letters from God.
Lovely gift from my nonbiological twin
Among the sutures holding me here, is my family, whom I love. My hard-working, loving husband is another significant reason to dig my heels in and summon the courage to keep-on-keeping on.
I want to stay here because of her:
And, him:
They are my furry children.
I have incredible friends that I want more time with. I have goals to accomplish. Namely, memoirs and novels to write. Paintings to create. When I am strong enough, I want to volunteer and fill the needs of local non-profits. I want to visit Farmers’ Markets and Renaissance fairs. I want to go places and see things!
Even when I’m frightened…even when I’m feeling disheartened…even when my heart is broken—I want to live. For me. For you. For all the lovely people that have been praying so very earnestly for me.
Thank you, Dear Readers, for making it this far in this blog entry. I am sure that this wasn’t an easy read. I usually don’t share when I’m feeling discouraged, but it’s something that needs to be discussed. I can’t be the only cancer patient feeling this way….
Thank you, too, for your presence here today. I am sending prayers, love and light your way. You are blessings to me.
With Love & Gratitude,
Laura
Resources for the Curious:
Romans 8:28 was taken from the New International Version of the Holy Bible.
I apologize; I have forgotten where younger me found this statistic: “Over a quarter of all Acute Lymphoblastic Leukemia (ALL) cases relapse”.
It requires more than a smidge of courage for me to wear brightly colored clothes—especially now—when all that I really want to do is hide from everyone. I don’t like what I see reflected in the mirror…and it takes reciting Psalm 139 at least three times to release myself from my negative thoughts.
Why?
Because this, Dear Readers, the changes that I am going through are hard. Reminding myself that “…I am fearfully and wonderfully made” is salve to a blistering burn.
No, not all of my clothes are currently fitting and I’m certainly not sporting the guns (or pipes, if you prefer) that I had in college, but this body, THIS body, has been through 2 cancer treatments and is in the midst of a third one.
I may feel hideous, and weak, but I have been blessed with a body that’s capable of enduring a whole host of poisons and pain. Thus, it is with some degree of gratitude that I wore this shirt on Thursday morning:
Rosie the Riveter
Yes, I will persist.
Yes, I will count every blessing that I can.
It’s the small things that get me through each day.
For instance, observing the Mama Robin on our front porch fills me with joy. She meticulously delivers food to her hatchlings, braving both the sun and the rain to make sure that her babies are well-nourished. She is, by far, the best bird mama that I’ve ever witnessed.
My raised garden bed is overgrown with California Golden Poppies, blue perennials that I’ve forgotten the name of, and some rather attractive “weeds”. It doesn’t stop the mourning doves from sweeping through the wilderness and creating paths between the gone-to-seed lettuce and kale. Their sad tune enchants me, their diligence makes me feel whole, as they tend to the garden that I’m not allowed to touch.
A quick peek out of our side window, fills me with wonder! Our neighbors have such a beautiful patio, framed by lilies of every color and size. Did you know that they invited me to visit whenever I want to? To sit in the sun and read a book? I don’t have that kind of courage, but gosh, they’re generous people!
I am grateful, too, for the man that I married. Even when we don’t see eye-to-eye (which is impossible since he has a foot and an inch on me), I do appreciate all that he does. Working odd-ball shifts—all so he can provide for our household and take me to my Lumbar Puncture appointments—is an act of love. We’re not perfect people. We’re not living in the perfect scenario right now, but we’re trying to figure this out together.
His smile, whenever he sees me, warms my heart.
There are countless other friends and family members—as well as individuals I don’t know—that I am grateful for. They fill my cup with positive comments and kindness. A sentence on social media or a short message with nothing but hearts in it, may not seem like a lot, but to me, it’s a reminder that I can do this again.
That you’re here with me.
That it’s going to be okay.
Writing a blogpost was not on my “to-do” list for the day. Yet, here we are, in the middle of a blog entry.
Please remember to announce your gratitude as if you’re speaking over an intercom system.
Wear bold colors.
Count your blessings, because even when you feel like you’re drowning, they are many.
Thank you, Dear Readers, for your presence here today. Thank you for your prayers, your love and your light. They are the fuel making my “persistence” possible.
I imagine that many of you—if not all of you—know that I have relapsed with Acute Lymphoblastic Leukemia (ALL). This is the third time that I have been diagnosed with this cancer. It was, honestly, a shock. All of my symptoms pointed to a neurological disorder, but no. It was ALL “gumming” up my nerves. Causing edema. Causing multiple falls that led me to the Emergency Room on June 13th.
My official diagnosis was issued on June 14th.
I spent three, long weeks in the hospital where an incredible nursing staff (including the best LNAs ever) took care of me. Dexamethasone, a steroid, “un-gummed” the nerves in my legs. I started treatment. Comparatively, it’s the most unstructured treatment plan I’ve ever had.
Once weekly, for three weeks, I receive an immunotherapy infusion known as Inotuzumab Ozogamicin. It sounds like the name of a demon (or, at least it does to the fiction writer in me), but it works. This stuff is toxic and so photo-sensitive that it must be administered in a dark room. The upside? It’s also extremely adept at destroying ALL.
Tuesday and Fridays—providing my platelets are above 50,000—I receive lumbar punctures in the Interventional Radiology Department (my spine is slightly curved and riddled with scar tissue requiring the medical technology and skill of the IR department). During these procedures, a sample of my Central Spinal Fluid (CSF) is drawn. This is then tested and the cancer blasts are counted. Methotrexate, a potent chemotherapy, is injected in its place. I’ll be honest with you, Dear Readers, they’re painful.
Despite Theo’s best efforts…
Meet Theodore
…and Berkley’s warmth, I can’t sleep the night before these procedures.
Berkley sleeping by my feet
I know, unfortunately, that it’s going to hurt…but I have to do it.
I want to live.
My prognosis is not great. There’s hope, though. Every time that I’ve had ALL, I’ve been an outlier. I should have died in July 2010. No one at Dana-Farber had seen ALL manifest as a solid tumor, as it did in my lumbar spine in 2017. In 2021, I have every intention of fighting this disease and kicking it to the curb for good.
Third time is the charm, right?
Once my CSF is “clear”, I will hopefully be allowed to participate in one of Dana-Farber’s Car-T Therapy programs. I write “hopefully”, because it’s not a given; Boston might not take me because, even after it’s clear, there was CSF involvement.
I cannot lie to you, Dear Readers. Staying positive in light of all the changes that treatment causes has been unbelievably difficult this time. I feel like I’m a thousand years old. When I look in the mirror, I see a Wookie, not me. I’m chronically neutropenic meaning that I don’t have a functioning immune system. I can’t floss. I can’t tweeze. I’ve gained weight.
I know…woe is me….
But I CAN recite Psalm 139, “…I am fearfully and wonderfully made…”. I’ve painted a wood slice ornament with these words; it hangs in the bathroom to remind me that my very human body is amazing beyond understanding.
I CAN drive. And, oh, Dear Readers, the freedom of it! To get in the car and drive myself to my 8:30am local blood work appointments, gives me a sense of independence and accomplishment that I’ve lost in other areas.
I CAN have safe adventures. Safe? What does that mean? A mask. An uncrowded place, preferably outdoors.
One such adventure occurred this last Saturday, wherein my brother and I went to Point Au Roche. AND I WALKED A SHORT TRAIL WEARING MY LEG BRACES AND USING MY CANE! I was tuckered out afterwards, but it felt so good to move, to be in nature and to laugh with my brother.
We listened to country music on the way there, singing loudly to an oldie that we know from our childhood. My brother was attentive, opening doors for me and making sure I could actually climb in and out of his jeep without injury. He didn’t complain when I stopped (frequently) to take pictures of flowers and the lake. Mom and Dad, you raised a gentleman.
One of the many flowers I stopped to snap a picture of
Our easy hike was followed by a stop at an “off-the-beaten-path” ice cream shop so that I wouldn’t be exposed to a crowd. The day concluded with binge-watching several episodes of “Agent Carter” on DisneyPlus. If you haven’t seen this Marvel creation, I recommend it!
Oh my gosh, Dear Readers! Days like this past Saturday are the days to treasure. To soak in and remember every possible detail of. These are the memories to summon when discouragement and irritability slip in. Unsavory emotions do and will visit. I have found that reflecting on pleasant memories and singing praise hymns dispels them.
To rest, to contemplate, to pray
Treatment continues tomorrow. In fact, it’s an all-day affair. My hard-working, handsome husband and I will see my Hematologist for the first time since diagnosis! There will be bloodwork (made painless via the PICC Line in my left arm – which I’m also terrified of because of the infection I had with the last one in 2010). Liver enzymes permitting, I will receive an immunotherapy infusion. And, yes, as long as my platelets are good, I will be receiving yet another lumbar puncture.
Please pray. Pray for good news and next-to-painless procedures. Please pray for strength and encouragement. Please pray for healing and hope.
Thank you, Dear Readers, for your presence here today. This wasn’t an easy entry to write. It was, however, necessary. Sending prayers, love and light your way. YOU are appreciated beyond words.
Of Pieridae & Perras 
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