July 29th, 2013 §
A flash of red amidst the green summer grass:
a lone leaf, blazing in autumn clothing, a vivid premature announcement of a change of season.
Perfectly waxy, thick and juicy, it could not have been there long.
It is, I realize, the color of my mother’s lipstick. The color she has worn every day of my life. Perfectly fitting for the moment…
I turn 44 today.
I do not know how I feel about this fact.
The day I turned 43 was a lifetime ago, surely not just one year. I did not know I had metastatic breast cancer then. I was ignorant and blissful.
I had no idea what my life would be when I reached this birthday.
I have no way to know what it will be when I reach the next. I do believe I will see it though.
I am in limbo at the moment, waiting in the next few weeks to see if my current chemo has stopped working. I do not know if I will need to move on to something else to try to buy myself some time.
That is, you see, my only wish: more time. That is what I wish for today.
Time with my husband. Time with my children. Time with my parents and brother.
Time with my friends.
Chances for memories.
Opportunities for more.
I will keep trying to give a face and a voice to this disease.
There is poetry in the human experience.
I will keep trying to find it, document it, and also help others.
One way I have tried to help is by setting up a research fund at Memorial Sloan-Kettering.
If you can spare a few dollars and want to donate them to research on metastatic breast cancer, you can do so here. I don’t directly ask for donations often, but on this day I will.
I am glad to see 44. But there is inherent sadness in birthdays now.
the wish that comes true if you just close your eyes and blow out the candles…
if only it were so.
And so there is an anachronistic flash of red,
a moment of color.
I am that leaf,
released from the tree before its time,
coming to rest where it has no earthly business being,
nestled in the green summer grass.
April 2nd, 2013 §
It’s been a wonderful but long few days. I was so run down yesterday that after our egg hunt I got into bed and pretty much didn’t get out for 9 hours. Tristan’s birthday was absolutely delightful. We held a birthday party, something he’s never had before. We’re not big on parties in our family; instead, we always have small family celebrations.
One year, Tristan was at Shriners Hospital for Children on his birthday having hand reconstruction surgery. When the surgeon you want has an opening in his schedule, you don’t say no because it’s your four year-old’s birthday.
When we’ve done parties it’s been my tradition to have a no-presents party. Our children get presents from us and close friends. Party guests, however, are not allowed to bring them (it’s fascinating to me how many people have a difficult time following this rule). Instead, they’re asked to bring the money they would have spent on a gift and donate it to charity (we designate Shriners Hospital for Children). Each party we’ve had in the past has raised at least $500. Paige has had two or three parties through the years, Colin has had two. In those particular years they got the party, cake, and presents from family members. This was more than enough.
We put a donation box out at the party and everyone can stuff the box. This year Paige wrapped and decorated the shoebox. The children who are bringing the donations also get a lesson in the joy of giving to others. Often the parents tell me that their children don’t understand why they can’t bring a present. That’s okay with me, I think it’s fine to force a discussion about giving to those in need. My children take pride in doing something good, and even when they are young and want to know why guests can’t bring gifts, I feel no guilt in explaining that not all children can afford to pay for the operations they need. When parents say to me, “Oh, I would love to do that but I don’t know how my child would respond,” I never quite understand that. It’s our jobs as parents to be role models, to show our children what’s important.
When I had my own 40th birthday party a few years ago I did the same thing I have my children do: I asked guests to bring donations to charity in place of a gift. We must be willing to do ourselves what we ask of our children.
Shriners Hospitals provides care regardless of financial situation with an emphasis on orthopaedic care, spinal cord injuries, and burns. Tristan’s complex hand reconstruction helped him tremendously, he was able to have 3 procedures at the same time (a tendon transfer, a z-plasty to widen the web space, and a ligament tightening at the base of his thumb). Should he need cervical fusion surgery for the hemivertebrae and malformations in his neck that is where we will go (I’ve written elsewhere about Tristan’s congenital deformities in his spine and left hand). The team in Philadelphia including Dr. Randal Betz, Dr. Scott Kozin and physician’s assistant extraordinaire Janet Cerrone are very special to us.
Invitations and stickers from Easton Place Designs and the most adorable cookies from One Tough Cookie helped to make the day special. Tristan loved his karate party, and I love that I’ll be sending a big envelope to Shriners Hospital in Philadelphia from Tristan. I am so grateful to the families who helped to make this birthday so special for Tristan. I thank them on behalf of the children who will benefit from their generosity. Everyone does what’s right for them. This type of birthday celebration is what feels right to me.
In case you missed it, Seth Mnookin had a great piece on Slate about the Time magazine cover about cancer. He and I had a great talk about this and I’m quoted briefly in the piece. You can read it here.
** Also, a reminder I’ll be on Doctor Radio (SiriusXM channel 81) this Wednesday, April 3rd at 1 PM EST on the Oncology Show. You can check the schedule here, and it does repeat a few times during the week. I am going to try to get an audio file for those of you interested in listening who won’t have access to it live. The topic? One of the most popular here on the blog: how to talk to people with cancer in a sensitive and caring way.
October 15th, 2010 §
Part one: Tristan’s Valentine
My son Tristan is about to turn 4. I haven’t written about him much here. I started thinking about why that is, given that his life has given us more twists and turns than either of our other children. I think it’s precisely because he’s had his share of hardships that I have felt overprotective of him. But it really needn’t be that way.
Tristan’s physical problems are a bit unusual. For those of you who don’t know him, he had open heart surgery at seven months old to move an artery that was compressing his trachea, preventing him from breathing properly since the time he was born. He required feeding therapy to learn to eat after having trouble combining eating and breathing until that point.
He also had problems with his neck. From birth his head sat at an awkward angle. Doctors thought it was muscular torticollis that could be fixed with physical therapy. We did a DOC band to correct the flattened head he had as a result of this “fixed” neck position. But after a while my intuition told me it wasn’t muscular. I felt it was orthopedic, something that would be an extremely rare abnormality. I took him to an orthopedic surgeon who confirmed our fear: Tristan’s problems were more serious than just a tightened muscle.
We were told various diagnoses for his problems when he was about six months old– everything from cerebral palsy to Goldenhar Syndrome. But in the end, when pressed for a diagnosis they jokingly say he has “Tristan Adams Syndrome,” a combination of rare defects in his spine and hands.
The cervical vertebrae in his neck are not formed correctly. Half-formed, or fused together, the vertebrae near the base of his brain are mangled, appearing on x-rays, CT scans, and MRIs almost indistinguishable from one another. His adorable exterior hides a jigsaw puzzle-like appearance on the inside.
While the abnormal vertebrae caused him a severe head tilt to one side as an infant, it now appears from the outside as almost straight. As he’s grown his “z-curve” (two striking jogs in his neck which have thus far balanced eachother out; either one alone would have required surgical intervention already) has improved with growth.
We watch, we test, we monitor. If the congenital scoliosis (meaning a curvature of the spine since birth) worsens, he’ll need surgery to fuse his neck in a fixed state with rods and screws. His neck would not grow any more, and he’d have no mobility in it. Imagine having your neck in a position where it’s extremely short and you can’t turn it at all unless your whole upper body goes with it forever. So far, we’ve escaped this. But we are told that every growth spurt brings risk.
His other oddity are his hands. For the first year of his life we knew something was wrong, but no one could figure out what. He held his hands oddly. His thumbs just looked wrong– more like big toes. And finally, a hand surgeon was able to tell us: he has hypoplastic (underdeveloped) thumbs. He’s missing the muscle at the base of the thumb where the base of the thumb joins the wrist. I had never heard of that before. Likely, you haven’t either. That’s why no one could pick up on it. What does this mean? Functionally, it means his left thumb can’t bend at all. Try to pick something up holding your thumb out straight. Or hold a pencil, write your name. His right thumb bends slightly, but not “normally.” Oh, and yes, of course… he’s a lefty.
He doesn’t like to do things with his hands. He won’t write or draw. He can hold a spoon and fork, but prefers to eat with his hands.
Tristan’s surgeon says around now is a good time to do surgery to help get a bit more function in his left hand. By taking a tendon from another finger on his left hand and transplanting it to Tristan’s thumb, they hope to give him better mobility. It won’t allow him to bend his thumb. There isn’t a surgery that can do this: the muscle and tendon you use for this run all the way up to your elbow (who knew?!).
As I type this I know, looking at my thumbs while I type, that computers will be his saving grace. My thumbs stay straight when I type, and I am sure that he will learn quickly how to type and use a keyboard. He copies Paige and tries to play the piano. I think he might be able to do that too.
I remind myself about the documentaries I’ve seen over the years about people with different disabilities and how they’ve compensated. The YouTube video of the mom without arms who could change a diaper with her feet was one of the most amazing.
I know Tristan’s amazing spirit, his infectious giggle, his sweet and expressive face, his stubborn tenacity will get him through. I know he falls behind on every fine-motor skill evaluation. I know he won’t be able to play many sports well because of his hands or participate in lots of sports or fun activities because of the risk of neck injury.
When he brought home his valentines from school yesterday, his friend Bennett had written his name beautifully on the red paper. Tristan can’t write a letter. He knows them all, but he can’t write them.
My eyes teared up, jealous at the inscription.
I know he’s not going to do that anytime soon.
But I also know that somehow he will.
Someday he will.
And when he does,
that valentine with his name and mine
will go into my special box of keepsakes.
Shortly after that post, on his 4th birthday, Tristan had his tendon-transfer surgery.
Part two: It’s My Birthday and All I Got Was This Lousy Cast
My son Tristan had surgery yesterday. With no food starting at 8 PM the night before, and no drinking after 7 AM the morning of, Tristan was wheeled back to surgery at 3 in the afternoon. He asked only once for something to eat and drink. All day he played with Matchbox cars in his hospital bed waiting. Never a tear, never a complaint. A few times he gently asked, “Can we go home now?”
Surgery finished at 6 and was a success. Our fantastic and caring surgeon at Shriners Hospital, Dr. Scott Kozin, decided in the operating room after seeing the tendon in his ring finger that it wasn’t sufficient; he closed up that finger and used the middle finger instead. The tendon was transferred, the ligament stabilizing his thumb was tightened, the web space between his thumb and pointer deepened. All went well and a large cast was placed on his arm from fingers to shoulder.
Rather than a typical heavy fiberglass cast he received a more modern version of immobilization. To avoid having to “saw” the cast off in 3 weeks, this one will unwrap. For this reason, the pediatric patients are not as scared when the casts come off. These are not usable in every situation, but it was nice that he could benefit. Unfortunately, the worst part will be that there is a pin in his hand stabilizing his thumb right now. That will be pulled out when the cast comes off. I predict that removal is not going to go over too well.
When he woke up, Tristan’s first concerns were for water and his cars. Within an hour of awakening his personality re-emerged. As he started drinking and eating his spark returned. By 9:15 PM we were on the road, anxious to get him home. By midnight he was tucked in bed with a dose of pain meds and his stuffed animals.
The orange striped handmade pillowcase with dog pulltoys on it was a gift from the hospital as well as a cute quilted blanket with trucks on it. Every child gets a set of these handmade comforts.
A nurse found out it was his 4th birthday yesterday and rounded up some toys for him… cars and a book that makes fire engine sounds. He had a stash of toys to carry home from the hospital.
It wasn’t a great way to spend a birthday, but in the long run, it was a good sacrifice. There’s still some leftover cake for him to eat later today. The best present of all was having him come through surgery well and be able to come home with us without even having to spend the night. While there, we saw so many children with orthopedic injuries/issues that would keep them at Shriners for weeks or even months.
About 2 hours after the above picture was taken, Tristan looked like this:
That smile is the best present he could have given me.
Part three: Have a Nice Day
Tristan recovered well from the surgery. I won’t show the picture of what his hand looked like when they removed the cast and there were black track marks of sutures all across his hand and wrist. The human body is amazing, healing itself after having so many things done to one tiny hand. Now, seven months later, all of the incisions in his hand are almost invisible, the only obvious one remaining is the long diagonal one on his left wrist where one end of the new tendon was attached. It’s still rather red but I know in time it will fade.
When the stitches came out Tristan needed extensive physical therapy to accomplish three tasks: stretch out the new web space, keep scar tissue from forming and tightening up the area, and get his brain used to communicating with the tendon in its new location.
A few months ago we encouraged him to hold a pen again, a paintbrush, any implement. If there’s one thing Tristan has always refused to do it’s written expression of any kind. The coordination and finger strength it takes to hold anything in his hand and make it do something deliberate is not an easy or enjoyable task for him.
About six weeks ago he started writing more. By “more” I mean completing a word without stopping. He had never colored a picture or fingerpainted. But through trial and error we patiently have worked with him to try a variety of options for writing. This week his therapist and I tried a dry-erase white board again. We’ve found that just because something doesn’t work once doesn’t mean it won’t work at a later date.
The combination of the marker making a smoother stroke (rather than the shaky, wavy lines he usually makes with pens, pencils, or crayons) and the smooth writing surface “clicked.”
The therapist was here at 6:45 a.m. on Tuesday morning for Tristan’s appointment. I took Colin to the bus and when I got back home and opened the door to the kitchen here is what I saw:
Now, to be fair, he did use his orange marker to trace the letters over the top of ones written in yellow by the therapist. It was a struggle, and took a lot of work. He still can’t write letters on his own without tracing. But it was a victory. It was a step. No mom could have been happier or prouder than I was. It might take him a little bit longer but he’ll get there.
And I will be there to hug him after every little step, the way I did when I saw this.
Tristan’s wish came true: I had a nice day.
In fact, I had a great day.
January 3rd, 2010 §
It’s my first post of the new year. And I love when I get to write about happy things. Today my son Colin turns 8. All of the usual things go along with that: cake, presents, hugs, reminiscing. As I looked at the pictures of me, pregnant with him, I just can’t believe how the time has gone. Clichés are clichés because they’re true: the years go by faster and faster.
Christmas of 2001 was spent in New York City awaiting Colin’s imminent arrival. I was so huge and uncomfortable that I couldn’t get around too well. I was sure that baby’s head which felt like it was between my knees was going to emerge any second. Christmas came and went. As New Year’s approached I begged my obstetrician to induce me. Colin wasn’t due until January 10th but it was clear he was “fully cooked.” And big.
I called my parents and told them to come to the city. I just knew I wasn’t going to go much longer, and wanted backup so we could go straight to the hospital without worrying about Paige, then 3.
The morning of the 3rd of January Clarke was getting ready for work, staying home slightly later than usual after the holiday. I awakened feeling a bit off. I told him so. He lingered more, wondering if this would be the day. Shortly after 9 a.m. I said the contractions were starting. Only a few minutes apart. We called the garage for our car, but within 20 minutes the contractions were fast and furious. Out the door we went, got a cab, and started the 20 blocks to the hospital. By the time we got there I was in agony. Already a few centimeters dilated for the last 2 weeks, I knew there wouldn’t be much time.
After some (only funny now that it’s over) problems with an IV, a new nurse, and a whole lot of painful yelling on my part, I finally got into a delivery room. The nurses sent Clarke out as they prepped me for the epidural (with all of my yelling, they probably wanted to give me general anesthesia to shut me up… I was not doing well with the contractions). As I bent over for the anesthesiologist to get the epidural in my back, I could feel it… this kid was on his way out, nothing I could do about it. I sat up, yelled, “He’s coming!” as they sort of shook their heads, thinking they had time.
A nurse saw Colin clearly on his way into the world, and ran down the hall for Clarke, who had gone to the pay phone to check voice mail (pre-cell phone days). They both came running in, just as Colin came out. Literally 10 more seconds and Clarke would have missed the birth of his son. I would have loved that epidural.
He takes the cake for my most dramatic birth of the three children. At least after him, they agreed to induce my third, knowing I’d never make it the fifteen miles to the hospital here in Connecticut.
With the fullest head of black hair and 8 pounds, 13 ounces of bulk, Colin looked huge. And old. And that never changed. He was 20 pounds by four months. And always tall.
He was a challenging toddler (that’s code for “pain in the neck”) but grew into a lovely boy. He still is. He’s an athlete and quick learner with zeal for trivia and memorizing facts. He’s a caring and protective big brother and a loving football and ESPN-watching companion for his father.
I never thought I could have a son. I thought I would only do well raising girls. When Colin was born I knew we’d have to figure it out together. I can throw a football with some semblance of a spiral. I am getting used to a child who wants to wear sweatpants most days. Who forgets to lift the toilet seat sometimes. Who takes off dirty clothes and drops them on the floor.
But that boy of mine lights up my heart. His smile is spectacular. His giggle is infectious. His crewcut begs to be rubbed Buddha-style. He’s a big kid, dwarfing most in his grade. I hope his heart and his mind are just as large. I hope he knows just how much we love him, and how proud we are of him. Someday he’ll read this and hear it again. The words I say to him often will be here for him to read whenever he wants.
Happy 8th birthday, Colin. I love you and am so proud of who you are. I can’t wait to see what you are going to do with your charming self when you grow up. You made quite an entrance into this world. I hope you similarly make the world take notice as you grow.
October 28th, 2009 §
I remember it so well.
I hope I never forget.
Those feelings I had eleven years ago as I had my first contractions and went into labor with my first child, Paige.
My husband and I were living in New York City.
I was taking a long walk home after an appointment when I
first felt the tightening begin.
It was three o’clock in the afternoon of October 27th.
By dinnertime I was at the hospital.
By evening I was home again.
Too soon, they told me.
Could be hours,
could be a day or two.
By midnight I was back at the hospital again,
This time for good.
All night we waited.
All night I labored.
And at 8:06 a.m. she arrived.
I left the hospital two days later in typical New York fashion:
not with a car seat,
but instead with sweet P bundled in a carriage.
We walked home the 4 blocks to our one bedroom apartment.
Two days later we emerged to show her the NYC marathon.
As every parent does,
I fell in love.
As Clarke worked 80+ hour weeks,
She and I were buddies,
my city baby and I.
For hours we would explore the city.
Everywhere I went, so too did she.
When she was one year old I had medical problems;
an autoimmune disease which attacked my skin,
pigmenting it bright red,
thickening the soles of my feet
and palms of my hands
until I could hardly use them.
Hours were spent in the waiting rooms of doctors
before I was correctly diagnosed.
The treatments were time-consuming.
Paige came to every appointment with me.
It never occurred to me to get a babysitter.
She just came along.
As she grew I just knew she was something special.
She was always perceptive.
At sixteen months she sang the alphabet.
By eighteen months we were having conversations.
Once we started we never stopped.
Paige “gets it.” She’s an old soul.
She is so mature it is sometimes hard to remember her real age.
I am so lucky.
I am so lucky she’s mine.
And I tell her so all the time.
I don’t know what she’s going to do when she grows up.
But I know what she’s going to be –
All the things she already is:
Paige has seen a lot in her few years.
More than I would have liked for her.
I wish I could have spared her some of the
difficult things we’ve gone through.
My medical diagnoses, especially cancer, and Tristan’s issues too.
There’s the box under Paige’s bed (“the box” 9.17.2009) –
The one Barbara gave her in anticipation of her birthday.
She knows what it is now.
It won’t be a surprise.
I know what she really wants for her birthday: she wants to have Grandma back. Alive.
When Paige was 5
I got a call from the ski school in Jackson Hole.
“Paige is done skiing for the day,” they said cryptically,
“You should come get her.”
They wouldn’t give me details.
But they wouldn’t tell me anything.
Clarke was on the mountain skiing.
He was able to reach her first.
It was one of those times I marveled at how we existed before cell phones.
I made it to the medical clinic at the base of the mountain.
I walked through the swinging double doors.
I’ll never forget seeing Clarke and a doctor staring at x-rays
up on a lighted board.
It happened in slow motion…
I mouthed “Broken?”
and Clarke nodded.
My five year old had just broken her leg.
It was the first time I’d ridden in an ambulance.
I didn’t know the next time it would be my turn.
It was the first time there was a fracture.
I didn’t know the next time it would be my turn.
It all seemed so dramatic at the time.
Maybe being far away from home made it worse.
I had no idea I’d look back on that episode and think it was
literally “child’s play.”
After we finally got to the hospital and talked to an orthopedic
surgeon it was time to set the leg.
They’d given Paige pain medication and something to make her drowsy while they put the cast on.
Clarke and I were a few feet from the foot of her bed
talking about the logistics of getting her home on the airplane.
As she slipped off into a hazy slumber I saw her arm go up
into the air.
She slowly raised it, then her hand.
And then she made the sign language symbol for “I love you”:
Thumb, pointer, and pinkie extended out, middle and ring fingers
It was our signal.
I’d taught it to her as a toddler.
I wanted a way to tell her I loved her if I couldn’t be heard.
Across a crowded room, in a place that was quiet, or when she was nervous at a school performance,
I’d make the gesture for “I love you” and
she would know I was right there for her.
as she drifted off,
my five year old
told me she loved me,
that everything was going to be okay,
that this was all just a bump in the road,
all without saying a word.
there are so many things I hope I’ve given you:
skills, characteristics and traits to
help you find your way in this world.
I hope I will have many more years to watch you grow
and see what you will do in the years ahead.
You make me proud,
you make me smile,
you make me laugh,
you make me cry.
Now, forever and always,
I believe in you.
May you someday know the joy that I have known having you as my daughter
and the special bond we will always share.
The love that Nana and I have,
now next to you and I…
I hope that you will have that gift
someday with a daughter too.