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!!

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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”.

 

When It Rains, It Pours

April has been a rough month.  My mother’s dementia progressed at an ever increasing rate and my visits with her went from occasionally, (I am still dealing with fatigue and muscle and joint pain even though I have been on a treatment holiday since July) to once a day, to twice a day.  My daughter and I were with her in her cozy room to hear her last words…..”I’m happy”. “I’m happy”.  Yes, she clearly said that twice after months of intelligible babbling.  After that, she was mainly unresponsive, unable to even take a few sips of water because she lost the ability to swallow.  The wonderful people from Hospice kept her comfortable. My brother and I sat with her the next evening and all I could think about was how she would take us to the ski slopes when school was cancelled even though the roads were hazardous. She peacefully passed away the next morning and I felt relieved because she was finally at peace.  She hadn’t been my mother for quite some time.

Several days before that I flew to Boston to see my doctor at Massachusetts General Hospital to touch base and discuss a new game plan.  (My pesky cancer is acting up again.  It’s such a nuisance.)  Exactly a week later, I was flying to Pittsburgh to bury my mother in the country cemetery on a hill which is located near the family farm.  There, she joined my grandparents, her younger brother and her sister.

Oh, I almost forgot! Earlier this month, I had a suspicious spot removed from my upper arm and sent to pathology.  The nice lady who called with the results sounded genuinely sorry to inform me that it tested positive for melanoma.  (I received this news right after I left my Boston doctor.)  Yep!  Why wouldn’t it be melanoma instead of the more easily removable squamous? Big sigh.  Oh, and there’s a couple broken toes to throw into the mix too.

So, I have a consult with the Melanoma guy at The Melanoma Center of Hope, (what an interesting name), followed by a PET scan the following day which my insurance company will probably balk at since I just had one in February.  On the 27th I will board a plane for the third time this month.  However, this will be a happy trip.  This will be a trip of hope.  This time my daughter and I will be heading to Washington DC where we will meet up with my sister for the HOPE Summit which is sponsored by the wonderful group LUNGevity.

Yes, April has been a very rough month, but it’s ending on a high note!  HOPE Summit, here we come!!!

The Circle of Life

Today I sat by my sleeping mother as she began her transition to a better place.  I kissed her and patted her face when I arrived in her cozy and comfortable room, but she didn’t rouse. I sat down and found myself contemplating life in general and the celebration of life in particular. It was quiet and somber.  She didn’t hear me enter.  The only sound was the steady rhythm of the oxygen machine that she was hooked up to. Mom was sleeping and didn’t appear to be in any pain or discomfort and for that I’m grateful.  (Thank you Hope Hospice.)  In her 93 years she taught high school home economics, and together with my father raised and educated three children.  She enjoyed reading, gardening, meeting friends for lunch and after retirement, she and my father enjoyed traveling.  They have been married 65 years.

During my visit, she opened her eyes once and looked at me as if I was a stranger.  I gave her a big smile which she usually responds to, but today she didn’t. I stroked her hair and back for a while.  Then she opened her eyes again, looked at me and started to cry as I resumed stroking her hair. I told her that it was ok to rest.  She fell asleep again.

From there I went to my daughter-in-laws baby shower where family and friends gathered to celebrate the upcoming arrival of a precious baby girl. The atmosphere was joyful and celebratory.  Lillienne is expected to make her entrance into this world the first week of June and my son and his wife are ecstatic!  Of course I am too, especially since no one expected me to live this long.  As I enjoyed the fellowship it occurred to me that the circle of life was playing out in my life right now.  One life is ending and another will soon be born.  It really is quite beautiful.

As for me, well I keep on keeping on as I continue to live with stage 4 lung cancer.  I just returned from Mass Gen in Boston where I met with my doctor to regroup and discuss next steps. So, we have a plan.  It’s good to have a plan.  I see life through a very different lens these days.  My sense of joy is heightened and I cherish the times I spend with my family.  It hasn’t always been this way.  I had to work through denial, anger and depression, but I reached acceptance quite a while ago and with that I am able to experience joy and gratitude for what I have. I especially cherish all the precious time that has been afforded to me.  I was told 12 years ago that I had 3-5 years to live.  So much for predictions.  None of us have expiration dates.

Let’s all make the most of our journeys through the circle of life.

Why NOT Me

I suppose it’s natural for people to say “Why me?” when faced with a devastating illness, but my feeling is “Why NOT Me”.  “Why me” implies that someone else should be facing this hideous monster, and I wouldn’t wish this disease on ANYONE!

I was blessed to be able to spend yet another Christmas Eve and Christmas Day with my family.  All of us were together…every single one of my children and all of my grandchildren…..together…..again!  My heart was full!  After all, I was told that I had 3-5 years to live 11 years ago, so spending precious time with my loved ones is such a wonderful gift.  I realize how blessed I am!  However, we’ve been hit hard lately in the lung cancer community.  Many of my fellow warriors are facing serious hurdles and setbacks.

I was especially devastated to learn of the passing of a friend on Christmas day.  This beautiful soul was the single mother of 15 year old triplets.  In fact, I met her during open house when the kids were in 6th grade because I had two of them in class.  One was in chorus and one was in orchestra and I had the pleasure of teaching them for two years before I had to retire.  (It just became too difficult to manage my cancer and work.) Nathalie and I became fast friends and often got together for lunch. We texted, called and more recently, I visited her when she was hospitalized.  She had a very rare form of cancer and was being treated at Moffitt Cancer Center, but the treatment was extremely toxic and the combination of treatment and the cancer itself resulted in her going into hospice a couple of weeks ago.

I’m heartbroken.  She was young.  She was beautiful.  She left three children who were the center of her world.  However, she is at peace and finally pain free, and for that I’m grateful.  But it begs the question, “Why Not ME?”  The survivor guilt weighs heavily, but I have to have faith and trust that God isn’t done with me yet.  Many things just don’t make sense.  Many things are so hard to understand.  I guess we just aren’t meant to understand.  We must have faith.  Life does go on.

 

 

Bumps in the Road

“Bumps in the Road”.  Hmmmm.  It’s an interesting phrase that pops up all the time in cancer land, but is a very broad statement.  In my 11 year journey, I have experienced small, short bumps; large, high bumps and many bumps of different sizes.  Actually, it’s been like a run down a double black diamond mogul field (for you skiers out there). I’ve also experienced pot holes and craters…….life threatening craters.  There’s a plethora of causes for these “bumps”.  Some were caused by treatment side effects and some by the cancer itself.  For me, my most significant “bumps” have been caused by side effects of treatment(s) including radiation.

My first significant “bump” resulted in having to be hospitalized for “failure to thrive”. This occurred during my first recurrence after receiving a chemo combination in addition to radiation.  Things were going well for a while.  In fact, I continued working when I started this regimen.  Gradually though, I got weaker and weaker.  I couldn’t eat and had no energy so my doctor hospitalized me.  I was discharged a couple of weeks later, but I wasn’t feeling any better.  I needed constant care.  Slowly, under the care of my youngest son, things started to improve.  He made protein shakes and forced me to drink them.  He also took me on walks. Eventually, I turned the corner, regained my strength and got back to my life including going back to work.

The second significant “bump” was more of a sink hole.  Four years ago, on December 18, 2012 I was directing  our school Christmas Show (I was a middle school orchestra and chorus director) when I started to feel dizzy.  I collapsed and don’t remember the next few weeks.  It seems that the radiation I had several years earlier had caused an ulcer that was unsymtomatic.  This ulcer had gradually eaten through my diaphragm among some other things which resulted in a pericardial fistula. Now, this is a situation that typically results in death and my family was told that I probably wouldn’t make it through the night.  Thankfully, I was totally unaware of what was going on.  Because of the efforts of a creative cardio thoracic surgeon, I survived.  I was in the ICU on a ventilator for quite some time…….most of that experience is a blur.  I was heavily sedated.  Eventually, I was discharged, again I needed a lot of care, and again my youngest son cared for me which included administering IV antibiotics through a pic line.

Again, I recovered and was able to return to my job.

Just remember…….there is always hope.  Don’t ever, ever, ever give up!!

I’ve included an interview that was done for Lung Cancer Awareness Month

http://www.news-press.com/videos/news/2016/11/02/93197740/