Out Damned Spot!!

If you’re a cancer patient you know exactly what this means.  Yes, my latest scans showed that a “spot” in my liver, yes, that’s where my lung cancer took up residence in 2009 and I’ve been battling ever since, has grown some more and needs to be taken out.    Dr. Drilon refers to the procedure as “weeding the garden”.  The Interventional Radiologist didn’t paint quite the same picture.   He said that I would be under general anesthesia undergoing a hot ablation.  He also informed me that it can be quite painful and may require hospitalization.  I need to have someone with me, but it’s hard to plan when you don’t know exactly what’s going to happen, or how long I’ll be hospitalized, if I’m hospitalized at all.

Here’s how last week panned out.

Monday – CT Scan and brain MRI

Tuesday – Dr. visit where I was told I needed an ablation.

Wednesday – Neurologist appointment (Neuropathy and Parkinson’s)

Thursday – PET Scan, Blood Biopsy, Interventional Radiologist appt.  Then to LaGuardia to finally get home.  Sat in the plane for 3 hours because something stopped working in the control tower and planes couldn’t land or take off, finally got home at 1 am.

So, that was my week. Fighting cancer can be exhausting.

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Dad

As I reflect on Father’s Day, I can’t help but think back on what a wonderful father I was blessed to have.  When I was 9 years old, I was obsessed with the Winter Olympics skiing events and pleaded with my dad to take me skiing.  Hidden Valley was a relatively small family run operation at the time and was located about 15 miles from home.  So my dad, who worked on the railroad and would probably have rather stayed home to rest and watch TV, took me to the slopes, and so it began.  From that day on until I moved to Florida in 2005, I was hooked,  and over the years, as the resort continued to grow, I went from a recreational skier to a Certified Ski Instructor, teaching up until I moved.

My father was extremely upset when my husband left me and my 3 children.  He just hated to see his little girl so upset.  That was a really rough time.  I wasn’t working because my husband and I made the decision that I should resign from my teaching job.  So, I was left with 3 children ages 5, 2 and 9 months.  Fortunately, my skiing family was there for support and help, along with my dad.  When my oldest son was in first grade, my dad would pick him up from school every day.  Dad would make it fun for him.

And so it went until 2005.  I had been able to find another music teaching job in a different school district.  I loved the school staff, I loved the kids and I loved my job.  (A lot of you already know some of this but bear with me.)  I’m flashing forward because this is about my dad. During those years my parents attended every single football game, every single dance recital (poor dad), every play, every graduation…you get the picture.

In 2005, I was offered a job as the chorus/orchestra teacher for Cypress Lake Middle School in Fort Myers, Florida, where my brother lived.  (Long story…there’s probably a blog about that.)  I really hadn’t planned on being offered a job when I dropped some applications around, but a little voice kept telling me that I should go.  So off I went. The little voice was happy.  Of course my dad came with me because he didn’t want me to drive a loaded SUV alone from the Pittsburgh area to Southwest Florida. I’d like to think that he also wanted to spend every last minute with me.

One of the requirements for my new position was to get a physical.  I was relatively young, strong and healthy,  so off I went to the nearest MedExpress.  And that, my friends, is when my life as I knew it changed. I was in a daze as my sister-in-law took me for scans and then to a thoracic surgeon’s office.  The next thing I knew, my dad was by my side at a hospital as I went through the admission process, offering to pay my co-pay.  Somewhere along the way I was told that I had Stage IIA Lung Cancer which was so absurd.  I had an upper left lobe resection, and through the fog of the first few days, I was aware of my parents being there.  They came every day for the entire day with my dad insisting on getting me a chocolate milkshake from Steak and Shake every day.

When I was discharged, my parents came to stay with me and take care of me. (My kids were in college at the time.) My dad cooked for me every day and made sure I ate. Then some of my wonderful cousins took turns caring for me. I slowly got stronger and returned to work.

A couple years later it was discovered that the cancer had metastasized to my liver. I underwent my first clinical trial along with radiation, continuing to work.  I gradually got weaker and weaker as I lost my appetite and my weight plummeted.  I ended up being hospitalized with “failure to thrive” also known as extreme toxicity because of the aggressive treatment.  Again, I was aware that my parents were in my room all day.  My daughter had also moved down and was staying with me.  Things were very dire.  I couldn’t eat.  My poor dad would be in tears as he tried to get me to eat.  I remember him saying, “please eat honey”.  I would turn my head and curl back up.  He would cry.

I finally got discharged because there wasn’t anything more that could be done.  Again, my parents stayed with us, my dad doing his best to coax me to eat.  I finally started turning the corner. (Long story involving my youngest son taking over my care.)  I was so happy when I was able to get back to work.  (I had the most supportive principal ever!)  Things finally were back to normal with me getting chemo then going to work . Then Dec. 18, 2012 came along. Ugh!!

This was the last day of school before Christmas break and I had a show to put on for the school involving two choruses and one orchestra.  It was a big deal!  I awoke that morning to the ringing of my cell phone.  It was the band director wondering if he should take my kids.  I was very confused and shocked when he told me what time it was.  I was NEVER late! I threw on some clothes and bolted. (That call probably saved my life.)

I got there and got situated and then it was showtime.  I had conducted the Advanced Chorus and was conducting the Chamber Orchestra when I started feeling weird. I told my Panther Singers (my elite choir) that they were on their own.  The sound guy had all the tracks. I slumped into a chair, the principal came and sat beside me, I passed out. The last thing I remembered was hearing sirens.

I don’t remember anything after that.  Apparently, the radiation I had a few years earlier had caused an ulcer that ate through my stomach wall, my diaphragm and some other stuff causing a “pericardial fistula”.  My situation was dire and my family was told that I probably wouldn’t make it through the night. Because of a very skilled and creative surgeon, I made it through that night. Again, my parents spent every day in my room, so I’m told. By this time, my parents were older and we had moved them down to Fort Myers.  My recovery was much more complicated this time what with pic lines and such…things my father couldn’t do.  Yet, they came to where I was staying just about every day.  And every day my dad would ask me if I needed anything.  It was a question he asked every day when he called me or when I would visit him.  I saved many of his voice mails.  Voice mails that I still can’t bring myself to listen to.

I miss my dad.  He passed away August 11, 2017, exactly four months after my mother’s passing on April 11, 2017.

“Do you need anything honey?”  Yes dad.  I need you.

 

 

 

 

 

 

HOPE

(Photo credit: Randy Ells Photography @LUNGevityFoundation)

Hope.  It’s a word we use all the time.  “I hope I pass this test.”  “I hope I’m accepted to _______University/College.”  “I  hope he/she calls me.”  What exactly does “hope” mean?According to the Merriam-Webster Dictionary, the definition of hope is: to cherish a desire with anticipation: to want something to happen or be true.  For me, right now, I identify with the second half of that definition:  to want something to happen or be true.  All of us who are affected by lung cancer “want” to live.  To accomplish that, we “want” more research to be done so that more treatments can be available in hopes of extending our lives. We “want” this horrid cancer to become a chronic condition that can be managed.  We “want” less side effects.  We “want”  a cure to be found.  We “want” to continue to live, but having “hope” is easier said than done.   I feel there are degrees of hope where sometimes it feels that hope is lost, and sometimes it feels as if hope springs eternal.  I’ve had varying degrees of hope throughout these past 14 years.  Sometimes it has been strong and sometimes it was just a flicker, but it was there.

During the 14 years I’ve been in treatment, I’ve had many types of chemotherapy, then targeted therapies came along and I can tell you, the early targeted therapies were “dirty” and highly toxic.  Then along came immunotherapy.  Now there are various combinations of two to three different agents. In my experience, therapies have become a lot less toxic and much more effective.

So we continue to hope. We hope for a much needed increase in funding.  We hope for new treatments to keep us going.  We ultimately hope for a cure.

Don’t ever ever give up hope!

 

 

 

 

“I Can Do Hard Things”

The other day I heard Jennifer Nettles being interviewed on the Today show where she was featured singing her new song, “I Can Do Hard Things” and it struck a chord with me.  I’ve been “Doing Hard Things” for many years now…way before I was diagnosed with lung cancer.  When my kids were 5, 2, and 9 months old, their father decided he’d rather be with a senior in high school and left the family. I became a single mother. This left me devastated, angry, shocked, and sad just to name a few emotions.  Now, I had been teaching and after the birth of our second child, my husband and I both thought it would be best if I resigned so  that I could stay home with the children. So there I was with three very young children, no job and reeling.  (I lost quite a bit of weight.)  This happened in October and ski season was just around the corner. Then, I received a certified letter from one of his relatives informing me that I had ten days to move.  (Long story)  So, with the help of my mother, I found a town house at the ski area where my support system was and moved.  (Below is me with my kids several years after we moved.)

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So, there we stayed.  I got stronger and more confident and got another teaching job in a different county.  So, the kids and I settled in and my life was busy with taxiing kids from activity to activity…boy scouts…dancing…baseball…softball…Pop Warner football…and so on.  Now, I’m not complaining.  I loved watching my kids grow and blossom in dance and football and really miss those days.  My kids and I were and still are very close.  They even moved to Florida after I did.

Because of an accidental finding, I was diagnosed with lung cancer right after I moved to Florida.  I needed a physical which was required for my new teaching job.  And so my battle began.  I started doing real “Hard Things”…having an upper left lung resection and undergoing 6 rounds of harsh chemo. It’s been a series of “Hard Things” from then on.  I’ve had countless rounds of chemo, a round of immunotherapy, and finally targeted therapy.  I also had radiation and proton beam radiation.  Along the way I suffered two life threatening incidents.  One was being hospitalized for “failure to thrive”.  I was down to skin and bones and couldn’t eat.  I remember telling my mother that I just wanted to die.  However, my youngest son nursed me back to health by making me drink the smoothies he made for me.  He would force me to suck the straw.  Then there was the time I collapsed at school because of a pericardial fistula. (People usually die from this.)  My family was told that I probably wouldn’t make it through the night.  Again, I rallied after months of being nursed again by my son.  In addition to smoothies, he injected my daily doses of antibiotics into my pic line.

Things have been running fairly smoothly lately, yet I’m on my sixth clinical trial.  So the fight goes on. (Here’s me with my kids today)

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I Bought a House!!!!

Yes, I, a stage IV lung cancer patient, bought a house.  You see,  I decided long ago that I was going to live with cancer and not wait around to die from it, so I bought a house.  Lately, our lung cancer community has been hit hard and I want people to know that some of us are still doing well so please don’t give up hope.  It hits us hard when we lose someone, especially young women with young children and this has been happening way too frequently.  Why I’m doing so well is a mystery to me.  I came close to death twice during my 13 year (and counting) journey, so I’ve been through the lowest of lows too.  I just managed to somehow survive.

The drug that is holding my cancer at bay these days is Loxo-292.  It doesn’t have a name yet because it’s so new.  My lung cancer is being driven by the RET mutation and this drug is designed to target and reverse the mutation which will stop the mutation from happening, thus stopping the cancer in it’s tracks.

I have seen and experienced numerous treatments these past 13 years.  I started with conventional IV Chemotherapy, then various targeted therapies, then immunotherapy and back to a targeted therapy…the first one designed for the RET mutation.  During these years,  I enjoyed good times and endured some really bad times.  I was able to function well with the chemotherapies.  I even continued to teach school.  I’d get treatment on a Thursday, be down and out Saturday and Sunday and then go to work on Monday.  Three weeks later it was time to do it all again. I had a very supportive principal which made things so much better.  Then research started developing targeted therapies.  Most of the early targeted treatments came with an abundance of horrid side effects which greatly affected my quality of life.  I spent quite a lot of time in bed and if I did venture out I had to deal with blurry vision and weakness among other things.  My depth perception was off and resulted in a couple of fender benders as I was backing out of parking spaces at the grocery store.  All I wanted was to feel “normal”, but it just wasn’t safe to go anywhere and I didn’t feel well enough anyway.  During those times I can honestly say that I didn’t care if I lived or died and actually wanted to die a few times.

I began this latest treatment, the clinical trial, in July and I feel great!!  My quality of life is good and I’ve been enjoying decorating my house.  I can run errands and go shopping with energy to spare.  The horrific side effects of those early targeted treatments are in the rear view mirror and as I said, I’m feeling great!  I also am experiencing a good response to the Loxo with some tumors shrinking.  The target tumor has shrunk almost 50% since July!  There’s some weird stuff going on though.  Something is growing and some tumors have stayed stable, but I feel good and that makes all the difference in the world!!

Football and Lung Cancer

Anyone who knows me knows that I love football!  After all, I grew up in Southwestern Pennsylvania where football is huge and Friday nights and Sunday afternoons are spent at a stadium somewhere.  I, and everyone else in the tri-state area, spent our Sundays cheering on our beloved Steelers.  As a child, I watched the Steeler game every Sunday with my Dad.  I attended college in Pittsburgh and was in the city when the Steelers won one of their 6 Super Bowls. Then I graduated from college, got married, and my husband and I closely followed the Steelers too.  My husband chose to leave me with 3 children under the age of 5 at which point I became a single mother, but that didn’t interfere with my passion for the Black and Gold.

Before I knew it, my oldest son was playing Pop Warner football and I became a football mom.  When he was old enough, my youngest son followed in his brothers footsteps.  I was very involved as they moved up through Middle and High school  and didn’t miss a game.  Both of my sons attended college on football scholarships too which was a huge help to me financially.  (My husband had checked out long ago.)

I look back fondly on those years.  My sons no longer play football, but my grandsons do and I find myself on bleachers again to enjoy watching them play.  Here’s a recent picture of me and 12 year old Tristan (fondly known as T).

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So what does lung cancer have to do with football?  Well, I was shocked by a lung cancer diagnosis in late August of 2005.  It was grim.  I was told I had 3-5 years to live.  I remember watching as the Steelers marched through the playoffs and met up with the Seahawks in the Super Bowl that year.  The Steelers won and I became NED (no evidence of disease).  In 2009, it was discovered that the cancer had metastasized to my liver where 17 tumors decided to take up residence.  The Steelers won the Super Bowl that year too and the clinical trial I was on along with radiation knocked the cancer back considerably.  At this point I associated the Steeler record with how I was responding to treatment.  When the Steelers did well.  I did well.  Flash forward to the present.  The Steelers are doing well and I’m doing well.  The new clinical trial I’m on seems to be working and the best thing is that I’m not experiencing any adverse side effects.

Along the way, I had the pleasure of meeting and getting to know Chris Draft, a former NFL linebacker.  The love of Chris’s life, Keasha Rutledge Draft, a former dancer for the Charlotte Hornets and a beautiful, young healthy woman, was diagnosed with stage 4 lung cancer at age 37.  Like so many of us, Keasha was in great shape and was a non-smoker, but we know now that lung cancer doesn’t care and anyone can get this hideous disease.  Chris proposed, Keasha accepted and they were married.  Five weeks later she passed on.  She didn’t want any wedding gifts.  Instead, she wanted to start a foundation with Chris to help fund research and provide opportunities for lung cancer patients, so Team Draft was born.  One of the programs Team Draft offers patients/survivors is their “Survivor at Every Stadium” program where lung cancer survivors are Team Draft’s guests to NFL and NCAA football games all across the country.

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Chris isn’t the only NFL player to lose his wife to lung cancer.  Levon Kirkland, big number 99, was an all pro linebacker for the Pittsburgh Steelers who also lost his wife to lung cancer.  Ironically, his wife was also named Keisha.  She was a weathercaster, a never smoker, and passed away from lung cancer at age 41, leaving a 5 year old daughter behind along with her husband.  I remember watching Levon play every Sunday as I waved my terrible towel with every tackle he made. Levon is a former linebacker coach for the Arizona Cardinals and recently returned to Pittsburgh to attend a Steeler game with two lung cancer survivors.  Here’s what he said about that experience: “My journey back to Blitzburgh! I went to the game with two lung cancer survivors, Dan and Will. I lost two loves of my life to this horrible disease. My lovely wife Dr. Keisha Kirkland and my oldest brother, Ernest. This is not just a smokers disease. It can effect anyone especially women.”  Through the efforts of Chris, I had an opportunity to have a short conversation with Levon.  He is a soft spoken and very laid back fella and I have to admit that I was a little star struck as we spoke.  I was also struck with the familiar survivor guilt that I feel when I’m around Chris.  Here I am, still fighting the fight since 2005 and both of these fine men have lost their young wives to lung cancer.  It’s during these times that I wonder, why not me?

In the spirit of Thanksgiving where we take stock of all we are thankful for, I want to let Chris know that I’m very grateful and thankful for all that he and his foundation does for us.  He is a fierce advocate loaded with energy.  He also is compassionate, kind and caring, and completes my connection between football and lung cancer.

 

 

 

 

“Just Keep Swimming”…..”Just Keep Swimming” – Dory

If you’ve seen “Finding Nemo”, then you know that Dory is the lovable, happy, always positive Blue Tang fish who has the attention span of a gnat.  Dory and I have some things in common.  I started referring to myself as “Dory” when I was still teaching school.  It wasn’t so much as an attention span thing as it was getting stuck mid sentence or searching for words, all of which I attributed to “chemo brain”.  I remember telling my students, “Do what I mean, not what I say”.  The funny thing is that they knew exactly what I was talking about and lovingly teased me about it when I experienced a “Dory” moment.

Dory’s famous line throughout the movie was “Just keep swimming”, “Just keep swimming” which is what I have been doing for 12 years now.  Throughout this journey I’ve experienced many types of swimming ranging from easy swimming with the current and very hard swimming against the current.  I’m going to have to start swimming harder soon.

I’ve have yet another progression of disease (I’ve actually lost count of how many) which involves the 4 tumors in my liver growing plus the appearance of a new one.  The good news is that it hasn’t spread anywhere else.  My lung cancer seems to like living in my liver.  Fortunately,  I have a lung cancer specialist at Massachusetts General Hospital handling my care and he called me the other day to discuss my options.

Unfortunately, the melanoma, (yes, on top of everything else, a suspicious spot I had on my arm turned out to be melanoma.  It was successfully removed and clean margins were achieved) has excluded me from one clinical trial and I’m waiting to hear back if it’s going to exclude me from another.  If so, I still have options, but either way, it’s time to enter into battle yet again and I’m not so sure I even want to. I haven’t had very good experiences with the new targeted therapies. For me, every “tinib” I’ve been on has proved too toxic and I’ve had to stop the treatments.  The frustrating thing is that many of these treatments were working.  It’s the same story with the immunotherapy drug I was on.  I couldn’t tolerate the Opdivo after several months, yet it seemed to be effective to a degree.

So, I’m preparing to swim harder yet again, because when it’s all said and done, I want to live.  I’m just too busy to die!!  Plus, I’m very competitive and at this point I’m refusing to allow cancer to get the upper hand.  Time to get my fins in shape and remember to “Just keep swimming”.