Hand-written thank you notes are the best. My grandma taught me that.
(COM = College of Medicine, and C10, I assume, means Cohort 10.)
Just before I had my port removed from underneath the skin on my chest after a year and a half of cancer-drug infusions, I asked the surgeon if I could keep it after he plucked it from my body. I did not want it because I am a collector of gross medical relics; I just wanted to add it to my box of breast cancer items so that I could share it with others headed for a port procedure. “Look, this is a port,” I would say. “This is how it works.” I practiced this same routine with my baggie of lost hair, my wigs, my lymphedema sleeve. It helps prepare people; it sometimes minimizes fear.
The surgeon told me I could not keep my port. My sedation was kicking in, and I did not have it in me to argue.
Yesterday, a different surgeon removed a stent from my ureter. He had placed it there 3 days earlier during kidney stone surgery. The stent helps with healing and allows urine and stone fragments to pass freely. It is a painful little bugger, and I was thrilled that the doctor yanked it out.
“Do you want to keep it?” the nurse asked me.
“Hmmm, I wasn’t allowed to keep my port,” I said.
“Why? my doctor asked. “You paid for it.”
I do not know why I was not permitted to take my port home, but I am now the proud owner of a ureter stent. See photo. If you ever must get one, this is how it looks. Don’t be scared. It does cause discomfort, but only for 3 days. And after those days, man, you will feel like a million bucks. Like I do.
This is how I looked today before I went back for surgery and again after surgery. Somewhere in the middle, I put on a gown with nothing under it, had two kidney stones blasted with a laser inside my ureter, and woke up from sedation with no idea who put me back in my clothing (and while shoving me into my bra, did they gawk at my bigger right boob and my littler breast-cancer boob?). Amnesia is a crazy ride. In other news, I survived. I have been in bed all day managing one puke, one fainting, lots of uncomfortable peeing, and endless cramping. THIS PART, I would like to forget. Many thanks to Nurse John and my crew of helpers and well-wishers!
Yesterday, I visited the University of Florida College of Medicine, where I spoke with a group of first-year med students about the psychological effects of a life-threatening diagnosis. I have done this before, and it is always invigorating. The feedback I received from my oncologist, who invited me to speak, is heartwarming: “Rob told me you were absolutely awesome and to thank you for coming. As always, my respect for you only grows. You continue to use your difficulties as a platform from which to serve and care for others. God bless and have a wonderful weekend.” The most breathtaking moment of the day, however, was the view I captured in the photo above. I have not seen these steps since my mom and I escaped for fresh air from Shands Hospital during my first chemo-induced hospitalization. We exited the closest doors we could find and landed at these steps, just outside the College of Medicine. We drug my IV pole down each step in search of a little bit of freedom from disease. That was 11 years ago.
Eleven years ago, I told the students yesterday, I watched my babies (ages 18 months and 3 years old at the time) sleep at night and imagined them growing up without a mom. Today, one of them is driving me around the streets of Gainesville, Florida, with his learner’s permit, and the other has no memory at all of my bald head or sick body.
“Thank you for sharing your story,” remarked several students yesterday.
It is my pleasure. TRULY my pleasure.
I am not sure why I feel compelled to share my medical stories. You may wonder the same thing. Maybe it is because I find the human body fascinating; perhaps it is because sharing my experience may one day inform someone else’s health journey. Regardless, I share. That is how I work.
I referenced in my previous post an ongoing investigation of recurrent UTIs, and today, the investigation is complete. After a kidney and bladder ultrasound and a CT scan that imaged from the bottom of my lungs to my pelvic area, I now know that I have, according to my urologist, “two good-sized stones.” The ureter (see arrow on the diagram to the right) holds these kidney stones, which are 5mm and 6mm in size. The ureter is just about 5mm in width—essentially, the little buggers are not coming out on their own, and all of the discomfort I have felt since November was not UTI pain but complications of kidney stones trapped in a tiny tube. My stones are down low, which explains the cramping, aching, and pressure that feels like a combo of menstrual cramps and contractions.
In the next week or so, my doctor will surgically laser away at my stones, and he will insert a stent into the ureter for 3 days to help with the healing. I do not know much about the length of recovery, but he did mention spasms and prescribed me anti-spasm meds and pain pills, too. The start time is 6:30 a.m. (Ugh!), I will receive anesthesia, the procedure will take about 30 minutes, and then I will go home, where I will await my medical mystery. When it arrives, I will be sure to share.
“What?” I replied.
“The human body,” he responded.
I suspect that his revelation stems from a recent science lesson about chromosomes and genetic disorders and a report he wrote about hemophilia. He went on to share how unbelievable it is that HUMANS CAN CREATE OTHER HUMANS. I agreed with him and added my two cents: It is also amazing how often the human body plugs along despite the potential for breakdowns. The body is a machine, much like an automobile, and the possibility of glitches, accidents, crashes, and burns is ever present. We are wise to keep our bodies running with nutritious fuel, purposeful activity, smart maneuvers, maintenance, and tune-ups. Still, wrong turns can occur.
Danny easily transitioned from our brief chat; bodies are now completely off his radar, replaced with gaming and binge watching with his dad (for the second time) episodes of “Lost.” My radar, however, is still hovering on the topic.
Bodies—mine specifically—have been on my mind since the day I realized that my femaleness in this world generated attention. For me, it started in first grade with glasses that I hid in my bedroom closet (sorry, mom) because I felt embarrassed to show up at school looking different. Then came boobs—BIG BOOBS—that made me a body-conscious girl and a frequent buyer of large, oversized shirts. I had some acne. I had braces. Weight crept into the mix at some point, and although I have never been overweight or underweight by number alone, I have obsessed at times about looking better. Until this year.
This year, I turned 45, and I feel confident, secure, and happy with my human body and all of its imperfections and simultaneous awesomeness. I believe that my age delivered me to my current contentedness, but the list Danny inspired me to write about everything my body has encountered—the glitches, accidents, crashes, and burns—cemented my peace of mind.
I asked Danny to work his magic on my words and turn them into a sparkly poem. (He recently did some killer work in language arts.) He declined. Therefore, what follows are the notes I scribbled yesterday while waiting for the dudes at the Ford dealership to service my car.
Boobs too big
Breast reduction of 4 pounds
Baby not thriving
Stopped growing at 6 weeks
D&C at 10 weeks
Baby Boy No. 1
Gained 50 pounds
Vaginal delivery at 10 pounds, 9 ounces
Baby Boy No. 2
Gained 42 pounds
Vaginal delivery at 10 pounds, 2 ounces
Pea-sized hard lump on left side
Lumpectomy chemo, radiation, and more at Stage 1
Tummy skin hanging
Abdominoplasty at 5 years post-last-baby
Ran ½ marathon
Because I could
2:12 at 6 years after cancer
Diagnosed pelvic floor disfunction + IBS
Testing ended at 2 years
Antibiotics four times in 6 weeks
(Also, the freezing, burning, and excision of skin cancer that has spanned the years.)
You know what is amazing?
MY HUMAN BODY.
It has been nearly 11 years since my diagnosis—so long that I do not have much about my disease to report anymore, which makes me super happy but does not lend itself to populating this blog with cancer content. But here’s something: My baby boys were 3 years old and 18 months old when I was diagnosed, and now, at ages 14 and 12, they are WOWing me with their accomplishments. I am fantastically thankful that I am here to witness their wonder.
Brothers Joey (14) and Danny (12) and their cousins Jordan (11) and Tori (8) received a video challenge from John Donaldson (their dad/uncle) for Summer 2015. The challenge was this: Jordan must play the piano, Joey and Tori must act, and Danny must produce the video and publish it on YouTube. John offered a cash incentive, and all parties jumped on board (although somewhat reluctantly because, well, it was summer, and the assignment resembled something close to homework). After a summer’s worth of work (and fostering sweet baby kittens) and a few months of procrastination, the video is complete. Please enjoy and share!
In a contest of dogs and cats, I have always picked dogs. I think it is because I grew up with miniature schnauzers, and my mom, who lives nearby, still has two of these little gray canines. Leo and Benny have quirks—one incessantly barks at all people, even family members, who enter the house, and the other is obsessed with the roving pool cleaner and any squirrel he spots running outdoors; he also runs away from the leash when it is time for a walk, a little game he plays that drives my mom nutty. Despite their drawbacks, pups are all I have known; therefore, I have always voted for them. Never cats.
Until 12 days ago.
I do not know exactly how it happened, how I agreed to taking home from the Alachua County Humane Society three foster kittens—Owen (OMG, he is so small and cuddly and orange); Olive (she is the spunky, spirited one marked with black and white); and Ofelia (she is the shy, reserved one with a black and brown coat and beige paws). I had no idea how to care for kittens, but my boys, who have long begged for a pet, were so happy that I agreed to foster three sweet babies after learning about fostering opportunities at our Humane Society orientation that it seemed OK that I was clueless. The day after orientation, we headed home with three furry 6-week-old bundles in a travel crate with a litter box, litter, and dry and wet food.
And now, I know how to care for kittens. I also now how to love kittens. When my boys ask me, “Do you like puppies or kittens better?” I do not have an easy answer. The vote is close.
Because one of us has allergies to adult cats (not to kittens, just cats), we say that we will become a foster family; we will continue taking in kittens who need a place to stay and love in their hearts, and we will return them when they are ready for a forever home.
Today, I returned Owen, Olive, and Ofelia to the Humane Society. Twelve days, they lived with us. We fed them, hugged them, played with them, comforted them, introduced them to our friends, and now, we love them. We think they love us, too.
I am heartbroken. I am sad that our houseguests will live in a cage until they are adopted. I am crushed that they will likely be adopted one by one until only one of them remains. I fear that they will miss us like we will miss them. I worry that I will not be able to foster again and again, as planned, because it is too emotionally hard.
In a contest of dogs and cats, I am torn.
Because itty-bitty kittens have touched my heart.
A few little tears filled my eyes when a photo of a luminary (see middle image) arrived via text yesterday from my friend Sharon, who was up all night at the Relay for Life event in Newberry, Florida. (Because cancer never sleeps.) I had no idea this luminary would help light the high school track last night. I am touched. Truly. Thank you for thinking of me, Sharon.
Today, I sat in a chair with a microphone in hand in the front of a classroom filled with 100-plus first-year University of Florida medical students. Dr. Averbuch sat in the other chair, sort of facing me and sort of facing the students whose eyes focused on both of us. Dr. Lynch, my oncologist and professor of the class, sat in the crowd and watched, nodded, caught my eye, and sent non-verbal support in my direction. Dr. Lynch has been in my corner, soothing my soul, for 10 years.
Dr. Lynch’s warmth and compassion are part of what I discussed this afternoon with the med students. My task for the class was to answer questions from Dr. Averbuch, a UF psychiatrist, who aimed to draw from my story the mental health implications of a cancer experience. For 1 hour, he did just that. We talked fear, anxiety, depression, therapy, medication, and the weepiness that consumed many of my treatment days. I choked up when I recalled the terrifying nighttimes just after diagnosis when I watched my sleeping babies and convinced myself that they would grow up without a mom. Those memories always get me, even though my babies are now 11 and 14 years old.
I also chatted about rebounding, recovering, coming back to life, and helping others through this blog, the wigs I loan out, and the gifts I drop on doorsteps and in mailboxes. Dr. Lynch says my visits with medical students help, too.
My message was just what they needed to hear, he said.
I do hope he is right.
Hi. I am a journalist from Mumbai (formerly Bombay), India. I have followed your blog for years. It wasn’t by chance that I saw it. Since my sister was first diagnosed and passed away three years after complications from breast cancer in 2000, I have been reading about it. It was during one such search that I came across your blog. I have been reading it since then. In fact, you inspired me to start my own blog, called thinkpinkforindia.blogspot.in
I work for an English newspaper called Mid-Day and would like to interview you about your blog and your journey from diagnosis to being cancer free. The interview will, of course, be on email though I would have loved to meet you. Please let me know if I could send you the questions for the same on this address.
I told her that YES, she could send me the questions. And she did. And I answered them. And this just published:
‘I needed to dry my tears’
Thank you, Ashlesha Athavale, for the opportunity to share—and for committing to the breast cancer cause in honor of your sister.
I could not get enough of the TV show “Breaking Bad.” I loved everything about it. (Well, not the reminder that meth and murder are real problems in real life.) I was captivated by the characters, the stories within stories, the edge-of-my-seat moments, the humor. Yo. I binge watched that show whenever I could, although I never did cheat and watch without my husband, who was also hooked. I was sad after the last episode. Lonely. I longed for more. Sometimes, I still crave more. But mostly, I have rebounded.
I could not get enough of the book “Berlin Dancer.” You may not be as familiar with this novel as you are with Walter White and Jesse Pinkman, but this gem should most definitely grace your bookshelf because it is gripping. And here is the thing—I would not have picked up this book all by myself because I typically put everything in my life before reading. I need to change that. But my badass breast cancer friend Cindy Hurst wrote “Berlin Dancer.” She poured her heart and soul and many years into her masterpiece, and I wanted to witness what she created. I am so glad I did. No spoilers here because that would rob you of the fascinating journey of reading Cindy’s beautifully and powerfully crafted words, but I am pretty convinced that you will devour the twists and turns of this story of a young girl growing up in post-war East Berlin. This 368-page book weaves together mystery, history, hardship, war, love, loss, revenge, and more. I am sad that I have read the last word. Lonely. I long for more. I have not yet rebounded.
So that you can see that I am telling you the total and complete truth here, I assign you this homework:
Read “Berlin Dancer.”
Throw a paperback or Kindle edition in your Amazon shopping cart, visit your favorite brick and mortar bookstore and have the folks there order you a copy AND/OR leave a comment sharing the name of your most favorite book to date, and Cindy will gift TWO of you with your very own delivered-to-your-mailbox copy. Giveaway rules are as follows:
- Leave a comment on this post sharing the name of your most favorite book to date.
- Leave your comment no later than 5:00 p.m. EST on Thursday, December 11, 2014.
- You may enter only once.
- Open to legal residents of the 50 United States and the District of Columbia who are 18 and older.
- Two winners will be selected in a random drawing via random.org.
- Two winners will receive one copy of “Berlin Dancer.” Book is currently listed at $13.95, with the suggested retail price of $16.95.
- Winners will be notified by email, so make sure to check next week to find out if you have won!
WROTE A BOOK.
(Which, in Kindle version, happens to cost just .99 cents right now.)
My true test of a good book is making it through the first few pages without putting it down. Cindy Hurst—your book has passed my test, and I cannot wait to keep reading.
Amazon Book Description:
In New York City, 1989, after a man is murdered in cold blood, world-renowned prima ballerina Andrea Brandt is accused. She admits to her attorney that the devil got what he deserves, but tells him that she cannot remember what happened. As her attorney presses her for more information, Andrea begins to tell him her story, taking him back in time to WWII, in what would eventually become known as East Berlin. Step into the past, in an unforgettable journey spanning two generations, in a story of survival, love, revenge, mystery, and murder. See what readers are calling “great historical fiction,” “well-crafted,” and “hard to put down.” Berlin Dancer is guaranteed to keep you guessing until the very end.
That girl. In the pink wig. And the tutu. And the date 8-19-14 written on her shirt. That is my friend Jenn. She received her breast cancer diagnosis just after she returned home from dropping her fifth- and eighth-grader kids for their very first day of school. She rang me shortly after her devastating call arrived. Still in shock following a previous opinion indicating that it was highly unlikely she had cancer, she asked me, “How did you stay calm?”
I did not stay calm, I told her as I worried that her unraveling emotions may get the best of her. I knew the crushing blow of a cancer diagnosis, the fear of leaving children behind, the weeping and waiting and wondering. I knew that her insides were in turmoil and probably would be for some time. What I did not know was that this girl would emerge an ass-kicker. Now, more than 2 months post-diagnosis and after one lumpectomy, two chemotherapy infusions, and one buzz cut, Jenn is rolling with the punches—the after-chemo bone pain, headaches, sore scalp, baldness, fatigue—and is, on the outside, one truly spunky and spirited survivor.
[See photo exhibit above.]
“You are the toughest cancer girl I know.,” I told Jenn the other day. “Way tougher than I was.”
“I find that hard to believe,” she replied. “But thank you.”
Believe it, girl.
And believe this: You are going to CRUSH cancer. Actually, I think you already have.
My voice is on the Internet. I am not quite sure how I feel about that, but if you have 45 minutes to spare and want to hear me babble on about breast cancer, well, then, here you go.
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Today, I passed on my wig and a bundle of gifty items to a friend who will embark this week on chemotherapy for breast cancer. I do not know if my almost-40-year-old pal will use the wig because she has already chosen one that makes her look like a young college kid. But I do hope that she can use the goodies I packaged together for her in a brown paper gift bag. I selected each item for its significance in the chemo game: A REAL SIMPLE magazine for passing her minutes in the infusion room, a bottle of water as a reminder to hydrate, some Club crackers to soothe a maybe-queasy tummy, cozy socks because they were my favorite chemo gift, a small journal and pen so that she can jot down notes and questions and concerns, and a bling-y little bell she can ring for assistance when she least wants to exert herself. I wish I could give her total peace of mind that she will be OK and that this will be her one and only encounter with a life-threatening disease. But I cannot even give myself that gift; I can give her presents, though. And I can tell her that I am confident she will crush this stupid cancer. Because I do believe she will.