I'm not alone

The chemo haze has lifted, hopefully. Gentle waves of nausea, fatigue, restlessness and weird phantom pain in hindsight were quite manageable. Not unlike a bad Sunday morning hangover combined with the flu combined with a good dose of humid Jersey summer weather. I'll pass on the sandy shore and the sausage and pepper sandwiches for now. I laid down for a short nap and when I woke, summer arrived. 

I knew that I wasn't alone when it came to the diagnosis of cancer. What I really discovered is that I am also not alone in terms of the people who have dropped everything to come to my and my family's aid. With kind words and thoughts. With supportive offers to help. For just being there. With genuine understanding and compassion that I guarantee will not be dismissed or trivialized. I am blown away with the graces of others we have received over the last few weeks. A remarkable gesture from an old dear friend follows. While we lost touch for a number of years, Kim sat behind me in calculus in high school...I am overwhelmed and simply beyond words. And, I know that I am incredibly fortunate to have this love and caring all around me. The one redeeming element in my fight is that everything will be worth it if even one less person will never have to withstand this journey. Thank you so much Kim for your wonderful gesture. Many others thank you as well!  

I didn't need another reason

by Kimberly Shenefiel Kuhne on Tuesday, May 31, 2011 at 10:34am

Hello Friends!

I am participating in my 4th Susan G Komen 3-Day

for the Cure event this September. I first did the event in 2001 to honor my

grandmother and aunt and other family members that have beat this disease. In

2008, I started doing this for my kids. They lost their great-grandfather to

cancer and I don’t want them to lose another family member to this disease.  In 2010 I started doing this event for the

sake of future treatment options for other types of cancer our family is likely

to face. By the end of  2010, I knew so

many people that have beaten cancer or are still fighting, that I committed to participating

in the 3-Day until a cure is found for breast cancer.

So you can see, I really didn’t need another reason to take

part in the Susan G Komen 3-Day for the Cure. Unfortunately, the powers that be

thought otherwise. In May, a friend from high school wrote to tell me that

doctors found cancer in her routine mammogram. Teresa is one of the 1.4 million

people that will be diagnosed with breast cancer in 2011. The difference this

time is that Teresa is a friend. Before this diagnosis, she was healthy and

feeling great. Teresa is my age, from my hometown, and has small children, just

like me. Teresa’s diagnosis could just have easily been my own. THAT is why I’m

taking part in the Susan G Komen 3-Day for the Cure!

Teresa’s diagnosis has prompted me to focus my fundraising

efforts this year in her honor. She lives on the other side of the country from

me. I cannot offer to drive her to the chemo treatments. I cannot offer to

babysit her kids or prepare her some meals. Really, all I can do is to raise

money to fund research and support services for people fighting breast cancer. When

September 16th rolls around, I’ll be wearing a T-shirt with Teresa’s

picture. I hope to have the picture surrounded by ribbons representing the

donations received in her honor. Teresa will still be undergoing chemotherapy

treatments while I spend 3.5 long days working toward a cure. Today, Teresa is

a breast cancer survivor. I am working hard so that she carries that label for

another 50+ years.

I know that money is tight for everyone right now. I also

know that if given the choice between a dinner out with the family or possibly

curing breast cancer, you would all choose to cure cancer! Please take a moment

to think about how much a world without breast cancer is worth to you. No

donation is too small, but the larger the donation, the more of an impact it

will have.

To make a donation, simply go to www.the3day.org/goto/kimkuhne  and click on the button “click to donate to

Kim in 2011”. There is a place in the donation process for you to leave me a

message. If you would like your donation to be in honor of Teresa’s fight with

cancer, let me know here.  There are ways

that I can honor other survivors as well, just let me know.

Thank you for taking the time to read this. Please feel free

to pass this on to others that know Teresa or others simply supporting the

fight against cancer. By working together, we can achieve a World Without

Breast Cancer!

-Kim

(Shenefiel) Kuhne

2x Walker, 3x Training walk leader, 2x Crew Captain for the Seattle

Susan G Komen 3-Day for the Cure

losing my chemo virginity

Not that I ever sat around and dreamed of what taking my first chemo cocktail would be like, or how it would compare to taking a new lover, but getting through the momentousness of today really was sort of like a rite of passage as life-altering as the carnal sort of virginity.  Yes, I had too much time to myself to think about this.  But imagine the similarities:

• a few pokes
• a little blood
• relaxing background music
• an oxycontin with a parting good bye hug :/

And the actual parting conversation that went something like this:

Nurse:  "So how do you feel?"

Me:  "Well, pretty good, for right now"

Nurse:  "Well you know that you may not be okay in a couple days.  Don't hate me.  I'll call you later about your other visits.  Call me if you want."

The port below my neck conceptually freaked and grossed me out.  In a way worried me a little more than the chemicals going into it.  No, I'm not into needles.  I have a pretty high pain tolerance that seems to nosedive if I have to look close at something sharp being plunged into me.  And I'm not into anyone playing with open blood vessels in my neck Dracula-style.  And you have to put something inside there?  Took much longer than it should have, surgeon ran one hour late, x-rays took forever to process, and throw into the mix a nurse sticking herself with a needle that was used on me, and my kindness to consent to yet another blood draw to prove I am not HIV or hepatitis +, cost me an extra 2 hours.  In the end, it really wasn't terrible and not even visible to anyone just looking, even with an open shirt.  I walked into the cancer center at 2:00 pm for my 11:40 am appointment and was greeted with nothing but smiling "welcome"s from people who already knew who I was.  For what we have to endure, these people will soon become part of my support network and may become my friends.  The woman next to me had a terrific looking wig.  The woman on the other side of me had a gorgeous head wrap.  We chatted for a while and I quickly learned that I have joined an army of young, vibrant, funny, strong and resilient warriors.  We are all fighting for ourselves but also for each other too.  And for those who have yet to be diagnosed.  And for those who we pray will never be and most especially my sweet little girls.  There is some sort of cosmic justice to all of this.  None of us want to be there, but if you didn't know it, the sounds of laughter, music and happy activity mimics a hip bistro or cocktail lounge.  The way it should be.  The way it must be!

So with all this strength and resilience all around me, I had some thinking to do with the 4 hours of time I had with my six entree drug feast.  I am learning how to "fight like a girl".....

You simply cannot be mad at someone with cancer.  No one can do it, or else you really have no soul.  I will be tempted to use this to my advantage at some point ("but officer, I'm really late for my chemo appointment, they need me to be there on time or I may have to go on another day.  30 minute drive!  Stage 3 officer.  And yeah this is a wig")

There is no guilt in napping.  It is not indulgent.  I will drop and nap when the mood strikes.  I simply need to do this.  I may not answer the phone or door, oh well.  There's paper for notes and email and voice mails for this reason.  Some have to pull a George Costanza and sleep under their desk at work.  This is in my new job responsibility list. 

I will not be shy about being honest about my needs and wishes, even if that means that feelings may be hurt.  I do understand that some friendships may end over this.  I don't expect anyone who has never experienced cancer in any capacity to understand the emotions I have only begun to experience.  I don't expect myself or anyone else to expect to understand how I will change from my before cancer past, my current cancer status, and when I make it to the status of cancer survivor.  I have a very long way to go on this journey.

I may not care about the condition of my home.  Dirty laundry can get clean.  Dog fur will be swept up. I'm still going to be here.  I care instead about the condition of me and my family.  However the occasional free cleaning service for a family member undergoing chemo thanks to local ACS is certainly not off the table!

I will not dismiss anything in or on my body as unimportant or not worthy of someone else's attention.

I will ask for help.  I will try to be mindful of what people can be possibly capable of providing for us at this time.  I will be specific and not be hurt if someone cannot help out in this way.

I will consume as much silly movies and books and gossip rags that I can possibly stomach.  I will balance between the clinical and heavy with the stupid.

I will gladly accept all hugs, support, and the gracious and honorable gestures and donations in my name (which have already been made, you know who you are) to make progress in the name of this ridiculous condition no one should ever have to endure.  Also, indulgent presents to adorn the head, ears, neck and soul!

After too much thinking, I spent the last 30 minutes outside the hospital as the center had closed, waiting for Sean and the girls to pick me up.  Caught a bit of vitamin D on the park bench and tore through several levels of Tetris on my iPod.  Putting all the pieces in neat order.  Obliterating the full rows.  Just like the chemical cocktail on the squatter in my chest.  Success!  A new twist on active visualization of what's happening inside.  I've always loved Tetris marathons.

Sean and the girls pulled up, I hopped in the car, and out of Ella's mouth:  "Mommy, you look so pretty".    Once again, I fought back a few tears.  Geez, not quite three years old and she's already my little girl-fighting warrior-assistant.

Simply Blessed:) 

   

  

randomness

5/17/11:  One last follow up appointment with the family practice.  Nurse and cancer survivor D says to me:  "One thing I forgot to tell you about side effects from chemo....is that you will....develop.....a very........sick......sense of humor."

"Well, I already have that.  So what's next?"

"Oh, you will be just wicked."

5/18/11:  Yearly appointment at the eye doctor.  "Any new meds?" she says to me.  "Oh, some Vitamin D and just some chemo next week for a little tiny stage 3 cancer...but otherwise, no changes...haha!"  Funny, dropping that bomb will get you out of any inconvenient waiting situation, and compels otherwise cold and distant people to randomly hug and kiss you.  In and out of the office in under 30 minutes.  A record.  Would that line get me front row tickets at some great sold out show?  A table at the hottest nightspot?         

5/18/11:  Consult with the wig lady (wigist?) - A small studio in the back of her home tucked away off a winding country road.  Small room with shelves of hundreds of styrofoam heads staring at me.  "well," says the wigist, "this is going to be easier than you thought."

"Why's that?"

"Well you have a REALLY BIG head.  It's going to narrow down your choices a bit.  Um, a lot"  

In a strange way I was sort of relieved.  Still, hundreds of ways to change your look.  Channel your inner Morticia Adams.  Liberace.  Dolly Parton.  Donald Trump.  I was left to try on four that came in the largest size commercially made.  In the end I chose one that nearly matched my real hair.  Needs a trim.  The girls approved.  It's all fun and dress up for them.  For a whole 90 minutes, I forget the real reason why I had to be there.  I started to think about the benefits of fake hair:

- No grays!

- No bad hair days!  Although, I might have a few bad no hair days.

- No more humid frizzies!

- No more flat irons!

And finally, in response to my asking Ella where the missing piece of her puzzle went, declared:

"Don't fall into pieces, Mama...no falling"

"No no, I won't sweetie.  No way."  

How'd my two year old get to be so wise?    

whirlwinds - May 12 and 13

Way way too much information for one day.  My heart and my head can't seem to take it all in.  As a very wise person once told me, "a little bit of knowledge is a dangerous thing."  It couldn't be more true.

First of all, the Carol G. Simon Cancer Center, adjacent to Morristown Medical Center, reminds me a little of a shopping mall without the storefronts.  Maybe her last name - wondering if she is part of the family which owns and develops many malls in this region - has something to do with this.  Valet parking, large glass panels letting the sunlight from above in.  From the lobby you cannot really tell it's a medical facility of any kind.  Signs for the sanctuary, a yoga class in session.  Free information on reiki therapy.  No, it didn't calm my anxiety.  Neither did waiting for the doctor for about 1/2 hour.  A nurse took my pulse, blood pressure, and drew blood.  "Are you nervous today?".  Nooo...what on earth would make you think that?  Where's the Starbucks?  Where's the nail salon?...

Okay, for the stupid stuff that I guess I have to know:

This is a quickly growing Stage 3 cancer.  Any more information than that really doesn't help me right now.  There is one lymph node noted as "suspicious" on my report, which, because of the size of my mass is presumed to be malignant and thus throws me into this prestigious stage.  Doctor tried to locate the suspicion and initially wasn't sure if he found it or was just molesting my rib.  All scans of everything else are clear...that is the important part of the information here.  Advanced breast cancer is well traveled.  Liver, bones, brain.

This is a hormone receptive cancer.  Which is a good thing.  It will respond to a well established therapy of hormone suppression...yay!  Throwing me into a state of menopause rather quickly.  Well, they say 50 is the new 30, right?

I will lose my hair from chemo.  Well the important hair as least.  I bothered to ask the doctor if there is a slim possibility I can defy the odds in this case.  "Um, no.  This is a universal side effect and that is why we are talking about it first."  Frankly, nothing else matters.  Nausea?  Okay, I was pregnant with twins, been there done that.  Living in the bathroom, essentially, can be done.  Fatigue?  Again what parent of toddler twins isn't already tired?  I harbor more anger that I have to care this much about my hair than the actuality of it falling out.  I have always hated wearing hats of any kind.  How dumb.  My one recurring dream I've always had since college is waking up and realizing that both my hair is gone and my teeth are missing.  The giant peach on top of my shoulders will scream CANCER! at me every time I look in the mirror.  I'm not ready for this!  No, I'm not hosting a head shaving party.  I will have my devoted hairdresser of 7+ years style me with a short layered cut so I can ease into it.  Later that night I went on a Google search bender:  "trendy short haircuts".. "sleeveless hoodies".. "is bald sexy?".."obnoxiously large earrings"

I have to have a catheter installed below my neck for quick access to the insides.  The drug cocktail is powerful enough to destroy tissue if a new vein is tapped every time and there's a miss.  No, there's nothing sticking out of me, so I'm told, no one really knows it's there, I can have it done the morning of my first chemo on May 25.  I don't mind needles, I just don't want to see them, especially the ones being stuck into me.

The rest of the meeting was a blur. Got a tour of the cancer part of the cancer facility.  Large open space with a row of beds divided by drapes, poles with bags, tubes connected to folks young and old, frail and vibrant, loving friends and family by their side, bustling staff in bright scrubs, a flurry of noisy activity.  Patients working on laptops, Ipads, reading, laughing, living their lives with a warmed blanket covering their laps.  On first glance it reminds me of an auto body shop and all the patients are cars in various modes of service.  I got lost finding the exit.  Maybe that's the point.  It will be my home one afternoon every three weeks for the next 4-5 months.  Here CANCER screams and no one seems particularly shocked.  Here CANCER is the norm and mine won't be the only bald head in the room.  I was sent home with a list of items to have in the house and a large folder containing information on peripheral services.  Exhausting.

Friday was a quick visit to the family practice to review bloodwork.  Enough with the appointments already and I nearly walked out of the office after waiting an hour.  In walked D., the nurse practitioner who without saying much opened up the door and said, "check this out"..she pulled her shirt open and there was her catheter, never removed, from her battle with colon cancer three years ago.  She ignored her symptoms for 1 1/2 years.  Small children.  Stage 3.  13 lymph nodes included.  I burst into tears, I'm becoming rather adept at this.  A gorgeous, vibrant, happy, healthy survivor just walked into my life and not by chance.  "Giving up is not an option," she said.  This time I walked out with far more than a script for vitamin D.  This is far more than just a certain cocktail of chemicals pumping through a tube.  That and if forced to choose, I would choose to fight this so that my daughters, son, and husband wouldn't have to.  That's how blessed I am....that might be all the information I can handle for now.             

   

           

  

The longest two weeks of my life

April 22:  "Something is suspicious on your film, let's do an ultrasound...right now"
April 22:  "Something is showing up on your ultrasound, call your doctor because you need a biopsy"
April 22:  "Let's not worry only if there's a need to...have a nice weekend"
April 28:  "Your biopsy is tomorrow, the doctor does not want to wait"
April 29:  "So are you sure you want me to call you on the phone with the results tonight?"
April 29:  "I am sorry, your biopsy is positive for cancer"

Cue the record scratch.  I am swimming in a deep pool of sludge called shock, but approaching the shallow end and headed for the stairs.  Two weeks ago I chatted with my son about his 17th birthday.  About his driving.  About college visits.  I was researching recipes for Easter.  I was shopping for spring dresses for the girls.  I was making appointments for manis and pedis and talking with my husband about summer vacation destinations.  I was thinking about taking a class and looking for fulfilling part time work.  I was patting myself on the back for losing nearly 30 pounds after countless hours on my elliptical trainer and meticulously writing down every morsel of food I put in my mouth.  Oh yeah, I gotta get that mammogram.  If there was ever a time when I felt time must have stopped, it's now.

Between the waves of hopelessness and numbness, I have not allowed myself too much time to think about breast cancer but I guess now I don't have much of a choice.  It still feels so foreign to even say it knowing I'm referring to myself.  And outside of clinical people I've only uttered the actual words maybe three times.  "So, yeah, isn't it so nice out?  Oh well by the way I have breast cancer!  So, did you get your tickets to Bamboozle yet?"  The veritable emotional roller coaster is exhausting and I want to get off it right now.  But before I'm allowed off I've concluded that this situation is really a deafening message sent from somewhere that I have some things to learn about myself and life.  And maybe to share with others.  There is simply no other use for all this craziness.  What is there to gain from all this?  It's going to be my job to find out.  Heck, I didn't need a thing to get this gig.  No fancy resume, no interview suit.  Just a big 'ol mass on the left side of my chest I really wanted to believe was nothing but a nuisance so just tell me so please and let me get on with the rest of my regular life.

April 29:  Gave Ed a long lecture in a parking lot after his incessant prodding for answers as to why he had to stay home from school to watch the girls.  "Well, I have cancer.  BUT DON'T YOU THINK FOR A MINUTE THAT I'M GOING TO ALLOW THIS TO GET IN THE WAY OF WHAT I NEED TO DO.  I'M NOT GOING ANYWHERE.  By the way please don't squeeze me too hard, I'm a little sore."

April 30:  Not one to feel defeated by the little nonsensical silliness of breast cancer, went to a dinner party hosted by good friends planned weeks before.  Chatted with three fun loving couples, talked too much about personal finance and strange habits of teenaged boys but laughed and ate well.  "Teresa, you look so well.  It's those girls, right?  They make you run."  For nearly three hours, I did not have cancer.  How long can I or should I keep up this gig?

May 1:  Sat in a functional haze in mass but did hear the priest say something about..."We need to allow Him to carry us in our time of need, and then when we are able, help to carry someone else in need."

May 3:  CT scan and nuclear study at St. Clare's.  Will the radioactive dye they stuck in my arm allow me to scale the outside of the hospital like Spiderman?

May 4:  MRI.  Walked into the office 25 minutes late, almost expecting to be told they could not do the test because of my lateness.  However, I learned that it's really hard to be mad at someone with cancer.  I might be able to use this to my advantage!  Walked out of the exam to my two girls watching Sesame Street in the waiting room and taking leaps off their couch, with a new coloring book from the tech.  They couldn't have been happier.  Please, please, I thought, please let them stay just this way for a long long time.

Follow up with the surgeon later that afternoon.  I am uninterested in looking at my healing incision.  The CT scan is clear.  Do I dare allow myself to be slightly relieved?  Talked in general terms about protocol.  Chemo probably first, then depending on response, lumpectomy or mastectomy.  Asked me to start to prepare for this possibility, but that reconstruction is a possibility too.  And to call the oncology group.  "You should be seen no later than next week."  Appointment for next Thursday.  Looking forward to a day with no medical appointments.  Just to get back to the important tasks of life, planning meals, clipping coupons, withstanding twin toddler meltdowns in public, laundry.  All the things I used to begrudge somehow now bring me some comfort in the familiar.

May 7:  A quick visit to the family care physician group to update my situation.  "You need a therapist." she says to me.  Ordered bloodwork, gave me a hug and sent me home with a script for Xanax.

I hit the elliptical hard this evening.  5 miles in roughly 50 minutes.  I feel the endorphins coursing through me.  Healthy sweating with a pink glow.  That "place" you feel when your body's cardiovascular system is working at the optimal calorie burning rate.  The warming sensation of all your muscles working in concert with no hard impact.  Rage Against the Machine pounding through my headphones.  I can close my eyes with no fear of falling off.  Like I'm running from something.  I don't FEEL this cancer inside me.  I can't SEE this cancer.  I don't look like I have cancer.  50 more minutes, by body doesn't betray me.  I pass on the Xanax and opt for 2 glasses of pinot in front of the TV for a re-run of Private Parts.    

May 8:  I am reminded what an amazing job I have in being a mother.  The most gratifyingly wonderful and awe-inspiring pursuit that I have been blessed to enjoy for over 17 years.  Worth the sacrifice of every last ounce of everything I have.  Ed gave me a cancer healing cookbook.  I told him I would cook some recipes for the whole family from it.  He gave me a sour look.  "Well just because you don't have cancer doesn't mean you can't eat something from the cancer healing cookbook."  Only a 17 year old can be so endearing and thoughtful and such a moe-moe at the same time.