Archive for the ‘Spotlight’ Category

Too young to be a sandwich

January 12th, 2012 - by Valerie Roseberry

I was 23 years old and expecting my first baby girl when I got the news that turned my world on its head.  Here I’d called just to chat with my folks about the little drama of my own day.  My Dad was quiet though.  Too quiet.  I knew something was wrong.  When he told me he didn’t want to tell me the news until my husband could be home with me, I knew it was the worst kind of bad, and when he told me my mom had lung cancer, in a blink the whole world was different.

My folks had been planning on flying back to be with us for the first month of our new baby’s life. Suddenly though what took priority was the fight for my mother’s life.  They couldn’t make the trip to Washington when our baby girl made her grand entrance.  Instead, I called Mom in an infusion room in Illinois from the Naval hospital in Washington to let her know that her first grand-daughter had been born and that she was named after her.

Two months later, as my husband left for his first round of work-ups and an eventual deployment, my newborn and I flew back to Illinois to spend time with my Mom.  By that time we knew she had Stage IV Lung Cancer that was considered terminal.  My caregiving role changed dramatically when I could finally be there to help with the demands of doctors’ appointments and med schedules and trying to get ahead of the pain, but I can say it was one of the greatest privileges of my life to be there to care for the woman who had given me life and so lovingly cared for me.

I remember feeling so very alone.  None of the rest of my friends who were my age had dealt with anything like this.  With one foot I was standing in the beginning of my own adulthood and journey of being a mother.  I had been married a short time and was learning, with my husband, the ropes of being a Navy family.  I’d just had my very first little girl, and I was a fledgling nervous first-time Mom.  With the other foot I was standing at the end of my mother’s life, watching her fight as hard as she could, battling pain that just wouldn’t be controlled, and having matter of fact conversations about what should happen after she died.

I thought many, many times.  “I’m too young for this.”  I remember reading some articles about “the sandwich generation” at the time and thinking that I was just plain too young to be a sandwich of any kind.  That was supposed to be for people who had kids nearing college and who were themselves approaching retirement.  I had only just begun to establish an adult relationship with my mother—to get to know her for who she was as a person and not just in the ego-centric way a kid knows their Mom.   I had assumed I would be rolling my eyes at her antiquated parenting advice for years to come.  I thought there would be more time to learn about the interior life of the woman who was becoming my best friend and not just my mother. Making choices about her care, sitting with her and holding her hand on nights that the pain got bad:  that was supposed to come years down the line.

I had always just assumed that my mom, just as my grandmother had done, would grow old slowly…  I had envisioned discussions sitting over her kitchen table with her hair silvery and my gaggle of kids playing not far away.    I had imagined the end of her life coming much, much later and my role as a primary caregiver to come after I’d accrued a whole lot more wisdom.

Maybe the truth of the matter is, no matter when it happens, when faced with the enormity of losing someone we love so much, we all feel too young.  We all ARE too young.  There’s never a good time to face those fears and questions.  There’s never a time when you are old enough or ready to lose a person who has been your anchor point.

Lung cancer took my Mom just 8 months after her initial diagnosis.  My baby was 4 months old.  Thanks to LUNGevity and the research going on it is my hope that fewer and fewer daughters and sons who are given the heart-breaking privilege of walking with their parent through a lung cancer battle will have to realize their fears of not having that parent to walk them further into adulthood.

If you feel “too young for this” no matter what stage in the care-giving journey you’re in, you’re not alone.  Others have walked this path.  It’s a hard path, well-watered with tears, but you can be sure you have company on the journey.  Reach out.  Join the LUNGevity support forums, find a phone buddy, share your story.  You may not have the benefit of the number of years you thought you would have before facing the questions before you.

All the same, you might just find that you aren’t alone on the journey, and sometimes having someone with you on the path can make it a little easier to walk.

*Family photo credit: photographer Danielle Kindelberger

Share this:

Jayda

September 19th, 2011 - by admin

Jayda isn’t your typical lung cancer advocate.

She’s an 11 year old girl from Levant, Maine who set out this summer to raise awareness about the deadliest cancer killer, lung cancer, by setting a goal to run 100 miles.

Lung cancer is the U.S.’s top cancer killer, claiming approximately 160,000 lives per year. It is a devastating disease that can afflict anyone, regardless of smoking history, gender, or ethnicity.

While colon, breast, and prostate cancer all have reliable early detection tests, lung cancer does not. Currently, only 16% of people diagnosed with lung cancer survive five years post-diagnosis, a percentage significantly lower than that for each of these other cancers.

Jayda’s efforts were in honor of her grandmother, who lived with Jayda’s family during her cancer journey with stage IV lung cancer.

The inspiring 11 year old ran 100 miles while maintaining summer camps and in addition to the stress of her grandmother’s condition.  She asked for sponsors in 1 of 3 affordable ways- .05, .10, or .25 a mile with all proceeds going toward lung cancer research thru LUNGevity.

“Believe me it was hard at times,” said Jayda. “Sometimes my mom would help me out a bit by being behind me, cheering me on,” she explained.

Jayda has appeared in news stories and publications in her local area and nationally thru the internet and has raised almost $2500 for LUNGevity.

LUNGevity Foundation is the largest private funder of lung cancer research in the United States and granted $2 million to outstanding researchers in 2011.

LUNGevity works to identify and fund promising and innovative research into the early detection and targeted treatment of lung cancer.

With research, there is hope.

“Jayda has witnessed the devastation this disease can cause and would be very appreciative of any support,” her father, Jassen Bailey, said. “Supporters are helping her help find a cure one mile at a time!”

Unfortunately, Jayda’s grandmother passed away on August 21. Jayda finished the 100 miles three days after her grandmother passed, which was the same day her family celebrated her life (with a memorial).

“I think if (my grandmother) was still alive, she’d be very proud and cheering me on,” said Jayda.

To read more about Jayda’s efforts or to donate to her fundraising page, please visit  http://events.lungevity.org/site/TR/Events/General?pg=fund&fr_id=1030&pxfid=22192

Share this:

A Tale of a One-Lunged Triathlete

June 28th, 2011 - by Kathy Smith

So I am not exactly sure where this story begins but here is what you need to know:

I lost my left lung to a rare and aggressive cancer in 2005.

Nope, I never smoked.

I was DX a month after my 29th birthday.

And most importantly, Strong is the New Skinny!

SO most people get cancer and lose a ton of weight.  The chemo diet is the most effective weight loss plan on the market but not me! No I get cancer and GAIN 80 lbs. As if that wasn’t bad enough, the maintenance meds are making it impossible to lose the weight now that I am cancer free.  So I am in my early 30’s, down a pretty important organ and up way too much in weight!  I would say to you the word frustrating, but it is a bit too mild.  I would say it isn’t fair, but that would be whining.  So I will simply say fat is better than dead.  I don’t worry about the number on the scale.  It isn’t all that important.  What I do worry about is being healthy enough to run around with my niece and nephews, about being able to help my friends move, about playing inner tube water polo at the Y in the winter and about being able to climb the stairs at Gillette Stadium to watch my Patriots win.  So I figured I better get the heck off the couch and start doing something.

I will be the first to admit that “doing something” and doing a triathlon is not necessarily the same thing, but I figured why not… I won’t win but at least I will TRI..(Get it? TRI?)   The idea came to me about a year and a half ago.  A friend was training for her first TRI and was having a blast.  I have always enjoyed cycling and pretty much grew up in the water so swimming and biking seemed like a good fit.  I thought if I ignored the fact there was a run at the end of the race that everything would be fine.  I hate running.  I really, really hate it.  It is definitely a TWO lung sport!  The O2 your body needs to keep pushing forward while running is amazing.  The fact that anyone can do it is one of the miracles of the human body.

I attempted to do my first event last summer.  It was a disaster.  It was 95 degrees with 97% humidity.  I threw up a couple times and have no recollection of the run, but they tell me I finished.  I decided that didn’t count.  I want to enjoy a triathlon not just be in it.  So the Minuteman Sprint Tri in East Freetown MA became my new goal.  I am not going to worry about time.  I am not competing with anyone but me. (Okay and maybe the Doctors that said I couldn’t). I just want to jump in the water and enjoy the day.

I have been doing a lot of cardio work this winter.  Combat Cardio to be exact.  It is like kick boxing on crack.  We work our butts off. Literally. I love it.  I can’t keep up with everyone, but I love it.  They have fancy functioning respiratory systems and don’t have to chart the meds they take.  So I don’t worry about keeping up.  Sometime I worry about standing up but not keeping up.  Most of the women in this class have lost an average of 40 lbs since they started.  I have only lost 15 lbs, but I am stronger than I have ever been.  Not sure that being able to throw a mean left hook will come in handy, but I will put it in the tool belt.

Race day is June 18, 2011

It is the middle of May and I feel STRONG.  My legs are solid and I can ride for hours without looking back.  I love being in the pool.  Swimming is far from easy, but it is fun.  I am still ignoring the run, because I just can’t do it.  I run for 200 yards and gasp for air.  I can feel my heart beating in my ears.  I try to run a couple times a week, but I don’t get very far.  The cardio classes are helping.  But running hurts, and I am bad at it.  So I am staying in denial.  I am okay with that.

It is now June 5th.  Less than two weeks until race day. I woke up this morning dizzy and shaky.  My throat is nearly swollen shut.  I can’t swallow ice cream.  I have a fever.  I know that when I get sick I normally go all out.  Not colds or sore throats for me.  I get strep and pneumonia.  My doctors tell me this time it is strep with both ears infected.  My lung is clear but tight.  There are 13 days until the Tri, and I am given 10 days of antibiotics. Antibiotics make it tough for me to keep food in.  When I can’t keep food down, I always get a chest cold.  I am going to do everything I can to sleep and rest and eat, but it is going to be a long 10 days!

Race week

Monday:

Still on the antibiotics but I am starting to feel human.  I am nervous that my lung isn’t going to be ready for Saturday.  The infection traveled to my chest at the end of last week.  No pneumonia, but breathing was slow and stressful.

Tuesday:

In the water for the first time in 2 weeks and the last time before the race.  My time is 2 minutes slower than it was last time, and I am weak and exhausted when I get out of the pool.  Ugh!

Wednesday:

My nephew came by the house tonight and dropped off a special trikathlon (as he says) wrist band. I think it is one of those titanium things, but he told me it would help me stay strong while I raced.   I needed that.  I forgot this was supposed to be fun.  I forgot having strep throat wasn’t the worst thing that had happened to me.  I forgot there are a couple of amazing 6 year olds cheering me on.  I got stuck in my own head for a few days and it took Jack about 2 seconds to knock me right out of that… Thanks buddy.

Thursday:

Last day of the drugs!  A good night sleep and an excuse to carb load!!  Bagels for breakfast.  Pasta for dinner.  I am feeling excited.  Not ready but excited.  The weather is looking great and the water is reported at 70 degrees.

Friday:  What was I thinking?  Whose idea was this?  A triathlon?  I. HAVE. ONE. LUNG.

I am traveling to the race site tonight with 3 friends that are doing a relay team.  Thankfully, they are equally excited and nervous.   Woo-hoo…

Kathy Smith

Saturday:  GAME DAY!

I slept for less than 3 hours last night.  There were a couple of drunks in the hallway around 2 am that almost got to see that left hook!  I am feeling pretty good this morning.  The hotel started serving breakfast at 5am.  Funny to see a room full of spandex clad strangers inhaling food and scoping out the competition.  I am scoping out the waffles.  The competition doesn’t concern me.

At 6:10 we pull out of the hotel and are on the road to the race site.  I am in race mode now.  I am nervous, excited and still trying to figure out if there is enough time in transition for a nap. I set up my transition area like everyone else around me.  At least I look like I know what I am doing.  I need to get in the water before I start.  I don’t own a wet suit.  Thus, I am not wearing one.  70 degree water sounds great, but it is still cold at 6:30 in the morning.  I jump in to discover that my assigned swim cap is defective and isn’t cut open.  I scurry back to the registration tent to replace it and then back into the water.  Some of these people are pretty serious. I hope I don’t get in their way.  I am fully aware this is only a .25 mile swim, but looking at the buoys I am suddenly thinking we are swimming the English Channel.  We are 15 minutes behind schedule.  I don’t like late.  I don’t like it one bit… They finally call the waves into place, and we prepare to hit the water.  The ankle timing chips beep as we walk over the start mat.  I guess it is official.  I am doing a triathlon.  As I am standing in the water waiting for the go, I feel something touching my back.  I turn my head and there is a woman touching my scar!  I pulled away and she looked at me like I was crazy.  I said “excuse me.. Do you need something?”   She looked at me like I was the one out of line and said “just wanted to know what happened to you.”   I was annoyed yet suddenly grateful all at the same time.  “I had lung cancer.  Lost my left lung 5 years ago”.  Saying it out loud as I stood there knee deep in the water felt awesome.  I HAD LUNG CANCER, I LOST MY LUNG, BUT I AM STANDING HERE READY TO DO A TRIATHLON!!  I want to scream it at the top of my lung but there wasn’t time.  The clock beeped, and we were off!  I let the crowd pass and started my swim.  About three strokes in, I remembered that I hate fresh water lakes.  They are dark and you can’t see the bottom.  Panic set in quickly as I was instantly convinced that there were snakes in the lake and  they were after me.  Gasping is frowned upon when your face is in the water.  Laughing while you choke on lake water makes swimming hard.  The idea of one snake quickly turned to a pack of snakes and those snakes suddenly became cotton mouths.  The pack was simultaneously chasing me and fleeing from an alligator.  Let’s say that my breathing wasn’t exactly rhythmic.  I was moving through the water but form had gone out the window.  I could feel every breath in my lung.  I focused on inhaling and tried to remind myself of the days when inhaling wasn’t a given.  I could feel the muscles in my back pull as I extended past the surgical site.  It took me a lot longer to get out of the water than I had hoped but I did it, I got out of the water.  I ran into transition excited and still moving.  Time to hop on the bike.  This is my strong leg.  I will relax while I pedal and regain my breath.  I watched people fly through transition.  I kind of laughed.  I grabbed a quick granola bar and dried off my feet and got myself together before I took off.  Once I started riding, I immediately felt better. I started to pass people. I started to talk with folks on the course.  I had on my Lungevity T-shirt and people starting asking questions.  How are you doing this?  YOU had lung cancer?  I was suddenly a rolling PSA.  “Yes I am lung cancer.  I ride for the parents you lost, for the friends that have passed and for those who are yet to know this battle.” I only grabbed the inhaler once and came into transition feeling like I was invincible.  I hopped off the bike and switched to my running shoes, lost the helmet and grabbed my hat.  A quick drink of Gatorade and I was on my way out of the transition area.  Just about the time my chip beeped to let me know I was on the third and final leg I realized I had a 4 mile run ahead of me.  So much for invincible.   Denial is a great place to visit but a tough place to leave.  I jogged. Then I walked. Then I jogged. Then I walked.  This was going to be a very long 4 miles.  One by one all those folks I passed on the bike ran by me.  I was getting frustrated.  I would try to run for 2 minutes and then walk for 2 then run again but it wasn’t working.  I couldn’t get my breath and my heart was racing.  A quick look at my wrist and I remembered that my niece and nephew didn’t care about my time.  They didn’t care if everyone else on course was eating cheese burgers before I got in.  I started to think about friends I have lost to cancer and to the pain this stupid disease has caused so many I love.  I flashed back on the days when climbing a flight of stairs was a team effort.  I thought about what I was asking my body to do and marveled at how well it was doing.  I suddenly found myself at the mile 3 water station.  The timing chip had started to cut into my heel and there was a nasty blister forming on the ball of my right foot, but I was almost there.  I cheered for the cyclists flying by on the half iron man course and talked to the photographers and course marshals as I made my way to the finish line.  I ran the last 150 yards.  I crossed the finish line and was soon wearing my medal and grabbing a drink.  I had done it.  I finished a triathlon.  I had fun.  I didn’t pass out.  I didn’t puke!  I was pretty tired but really proud.  The heavens didn’t open and there wasn’t a parade, but I did it.  My body has officially gone from the brink of death to the finish line of a triathlon.  Who knew!

Share this:

Mother’s Day

May 5th, 2011 - by Colleen Brennan

Mother’s Day has always been a quiet, peaceful kind of holiday in my family. I remember spending the day together going to church, usually going out to eat for breakfast, and then giving my Mom a Mother’s Day card and a small (sometimes handmade) gift to thank her for all she did for us.

It wasn’t until I became a mother in October of 2004 and then was diagnosed with non-small cell lung cancer with brain & bone metastasis in October of 2006 that I realized how much more the holiday really meant to me. When I awoke after the craniotomy to remove my brain tumor and heard the news that the tumor was malignant, two of the people I thought of right away were my Mom and my son. I needed to know where my Mom was and if my 2 year old son was ok and at any risk of having this cancer. I couldn’t stand the thought that I may have passed this on to him or that he would have to grow up not remembering his own Mom.

Colleen's mom Maryanne and son Jack
Colleen’s mom Maryanne and son Jack

The phrase “A Mother’s work is never done,” comes to mind when I think of my Mom theses days. My diagnosis threw us all for a loop – I was 31 years old, a non-smoker, and otherwise healthy. How could this be? My Mom went to work right away – researching this diagnosis, getting a second opinion, being by my side as much as possible and she is still supporting me now. I have been lucky enough to survive this ordeal for 4 ½ years now and the support and care both of my parents have given me is absolutely amazing – they accompany me to appointments, treatments, and support me in any way they can. I don’t think that I can ever thank her enough, but I do understand now that Mother’s day is more than just a “greeting card holiday.” It is about thanking and recognizing all that she does to help me keep fighting the fight to survive cancer and be here to be a mother to my son.

I feel so lucky to be able to be here and celebrate Mother’s day with my 6 year old son too. He gives me the strength and energy I need to keep going. No matter how tired, sick, or just down & out I feel, seeing him always picks me up. Just having the privilege of being his mother and watching him grow is present enough for me for Mother’s Day. I am so lucky and grateful to God that I have been able to continue to be here with him – there is no better medicine than Jack. He makes it all worth it. I want to be here to see him grow, learn, and develop into the great guy I know he will be!

Happy Mother’s Day – to ALL you Mothers out there!!

(Colleen and her husband JB have been members of LUNGevity’s Lung Cancer Support Community since 2007)

Share this: