March is Myeloma Awareness Month

A few months back I got the opportunity to write a piece for a local community magazine. The timing felt perfect since March is Multiple Myeloma Awareness Month and myeloma certainly needs attention. So often myeloma is misdiagnosed, as it was for me for many months.

My 13-year-old son Jake is a typical teenager. He doesn’t like calling attention to himself or to our family. When I told him about this piece, he asked me “Why? Why do you always do stuff like this?”

I explained to him that since being diagnosed with cancer in 2014 and leaving my job a year and a half later, I have sometimes found myself asking the very same question.

WHY? Why had this happened to me?

But I have lso asked some other questions like…WHAT? And HOW?

What can I do to turn this into something positive? How can I use this as a way to make a difference?

That is what raising awareness of myeloma is about for me. Below is the article I wrote. Please take this opportunity to learn more about myeloma — and share to help increase awareness!

___________________________________

Never heard of Multiple Myeloma?  Neither had I. That was until a doctor walked into a hospital room and told me I had it.

In October 2014, I was a full-time working wife to my husband Brian and mom to our three kids, Jake, Kate and Shea at the time ages 7, 6 and 4 respectively. On a Sunday afternoon, Brian took me to the Emergency Room because I had an infection in my eye and what I thought was a cold. That cold developed into full-blown pneumonia and within 36 hours I was unconscious, on breathing and feeding tubes, received dialysis twice and had the bone marrow biopsy that would confirm the unthinkable – I had cancer at the age of 42 years old. 

Not only did I have cancer, but I had a rare and incurable blood cancer called multiple myeloma.  One of the first things my oncologist, Dr. Roger Strair with The Cancer Institute of New Jersey, told me was that, while multiple myeloma can be highly treatable, there is no cure.

According to the Multiple Myeloma Research Foundation (MMRF), multiple myeloma is a cancer of the blood that develops in the plasma cells found in our bone marrow. Plasma cells are a type of white blood cells that help maintain our immune systems.  Myeloma can turn healthy plasma cells into malignant myeloma ones, which can eventually crowd out the healthy cells.  This can result in bone damage, kidney issues, a weakened immune system as well as other complications.

The Leukemia & Lymphoma Society (LLS) estimates each year there will be over 32,000 new cases of myeloma and almost 13,000 deaths.  African Americans are hit particularly hard by myeloma, which is the most common blood cancer in African Americans.  Today one in five myeloma patients is African Americans but by 2034, that number will increase to one in four. 

In medicine, there is an expression “When you hear hoofbeats think horses, not zebras”. It means that doctors are taught to look for the simplest explanations for symptoms rather than the more rare or exotic answer.  Because of this and other reasons, myeloma is very commonly misdiagnosed.  Many patients present with a common complaint like bone pain, which is often labeled as arthritis, a sports injury or something else.  In my case, I was getting sick often and for very extended periods of time. I assumed this was because I had young children who were in school and bringing home germs. I was also told I was highly anemic, something I ignored addressing because I was “too busy”.  I was young and healthy – never once had I considered the possibility that I had cancer.

Thankfully, there have been a lot of advances in the management of myeloma since 2014 when I was diagnosed – and there are many innovations in the pipeline.  But while the five-year survival rate for people with myeloma has steadily increased over the last decade, a reflection of all this progress, there is still no cure. 

March is a time to shine a spotlight on multiple myeloma.  But even if you have never heard of myeloma, let this serve as a reminder to think about your own health.  Be your own advocate.  If something doesn’t feel right, slow down and listen to your body.  Stop delaying that doctor’s appointment, like I did.  Take time for some self-care or just recharge that Fitbit or Apple Watch to make sure you get in your 10,000 steps. Make yourself a priority.

Cancer has had some silver linings for me.  I do not fit the profile of the typical myeloma patient, who historically had been over 65, African American and male.  Sadly, this profile is changing, and, like all cancers, it does not discriminate. Because of this, I feel a responsibility to raise awareness of myeloma.   In 2016, my family and I decided we had to help make a difference and became actively involved in trying to find cures for myeloma and all blood cancers.  Since then, Team #gameon has raised over $200,000 for blood cancer research. In 2019, I was named the NJ Woman of the Year for LLS, ultimately raising over $131,000 during my 10-week campaign and was able to direct $100,000 specifically to myeloma research.

We were also able to see the magic of this Lawrence community.  It is cliché to say that it takes a village but there are reasons why clichés are true. From literally the very first day I got sick until today we have been overwhelmed with love and support from our Lawrence family.  

I have been one of the lucky ones living with multiple myeloma.   I am grateful to say I have achieved – and am maintaining – a Stringent Complete Response.  But these last six years have had their ups and downs.  Thankfully for me there have been new treatment options available to me when I’ve needed them but unless we continue to support research, one day those options will run out.  We must find a cure. 

Jen Moog has lived in Lawrenceville since 2006 with her husband of 16 years, Brian, and their three children Jake (13), Kate (12) and Shea (10), all of whom are students in the Lawrence Township School District. After her diagnosis with multiple myeloma in 2014, she left her 17-year career at Johnson & Johnson to focus on cancer advocacy and sharing her cancer journey.  You can follow her story at www.multiplemyelomamom.wordpress.com.

The statistics for all blood cancers are daunting.  Every 3 minutes one person is diagnosed with a blood cancer, every 9 minutes someone dies from a blood cancer and 1.2 million people are living with, or are in remission from, a blood cancer.

A day just like any other

Today was just an ordinary Fall day. It was unseasonably warm for October and I spent the day running a bunch of errands with my kids after virtual school (okay, maybe that part isn’t ordinary), watched my son’s hockey game (on my laptop…okay again, not typical) and had a dinner date with my youngest daughter.

But throughout the day, lurking in the back of my mind, was the knowledge that today was THE day. The day that my life changed. The day that a bone marrow biopsy confirmed the suspicions of an ER doctor who had the good instincts to realize that high calcium + anemia = a possible cancer diagnosis.

If you know my story a little bit, you know that I wasn’t actually awake when the diagnosis came back. I was unconscious after going into the hospital five days earlier with an eye infection. My husband was the one who had to hear the news and then, three days later when I finally woke up, be the one to tell me that I had cancer — and an incurable cancer – at the age of 42.

Even though I didn’t find out that day, October 23rd, that’s the day I think of as my “cancerversary”. And today I celebrate my SIXTH cancerversary. Last year, on the fifth anniversary, I had a lot to say about how I felt — so I’ll try not to repeat it all. You can read it for yourself here. At the time, it felt like a big deal – and it was. But today, in all its ordinariness, feels bigger.

If you google “cancer survival rates” what most generally comes up are 5-year survival rates. The reason for that is, for most cancer patients, the five-year mark is traditionally seen as a benchmark for when they could exhale. When they might be able to believe the chance of their cancer returning is no longer likely.

Unfortunately that’s not true of multiple myeloma. It’s not the type of cancer that you can treat with radiation or cut out and then watch and wait. You can’t complete your treatment, wait five years, get the “all clear” and then stop worrying ALL the time that the other shoe is going to drop. Most all patients with myeloma receive some type of treatment…forever.

All that said, there are still reasons for me to feel optimistic. According to the Multiple Myeloma Research Foundation (MMRF), “from 2010 to 2016, the most recent statistics available, five-year relative survival for multiple myeloma was 53.9%, meaning that approximately 54 of 100 people with multiple myeloma were living five years following their diagnosis.

To put that statistic into perspective, the five-year relative survival rate for multiple myeloma in 1998, the year the MMRF was founded, was just 34.6%. The trend for multiple myeloma survival is improving….and the approval of new, effective therapies to treat myeloma. Twelve new multiple myeloma drugs have been approved by the Food and Drug Administration (FDA) in the past 15 years, and many more are in clinical trials.”

And, according to The Leukemia & Lymphoma Society (LLS), in 2014 the 5-year survival rate was 75.7% for people with myeloma who were younger than 45 years at diagnosis. This is GREAT news!

I have been one of the lucky ones with multiple myeloma – but not without my challenges.  When the abnormalities in my bloodwork came back at the end of last year, Brian and I met with my oncologist. He gently reminded us of the genetic testing that had been done when I was diagnosed, putting me in the highest risk category for Multiple Myeloma.  And because of those abnormalities, the doctor told me doing this well at the 5+ year mark “exceeds all expectations and predictions”.

Well, crap.

THIS is why six years means so much to me. Obviously each year is a victory over this cancer that has completely upended our lives. Each year past year five feels like I am defying the odds – and I know that is someting to feel gratitude about.

But don’t get me wrong. I am ANGRY that I now, after all this time, I had to start a new oral chemo pill; one that is giving me side effects I never had over the last several years, like nausea. But I am also GRATEFUL that new medicines are available to me – with many more in the pipeline.

I am EXHAUSTED by Covid, not only because of the effects it has had on all of our lives, but the real fear it presents for me and my family. Myeloma has already wreaked havoc on my immune system – add to that actively receiving chemotherapy — and at the ripe young age of 48, I am considered “high risk”. But I am also LUCKY that my family and loved ones have remained safe and healthy, which isn’t true for so many people.

Despite all that six years means, I didn’t do anything special today to celebrate this milestone. Last weekend, we did have our own version of Light the Night, an important annual event for our family. Since becoming involved with LLS, we have raised close to $210,000 for cancer research. And though Covid robbed us of our usual festivities, which always nicely coincide with my cancerversary, we still found a way to participate responsibly. We watched the ceremony outside, on a screen, with a few close friends & loved ones.

And I bawled as raised my white lantern, the one reserved for survivors, as I was surrounded by my children and their friends. I continued crying as I walked through our neighborhood, knowing my family and I were surrounded by people who love us and know how much this night means to me.

That night kicked off an emotional week for me. This time of year always does that to me. But oddly today was just like any other day. I still had to walk the dog, referee the kids fighting and tidy up the house. Writing this blog is the only real acknowledgement of what this day was.

As I look back at the day, I realize the best part of it was its simplicity. It was just a regular day, compromised of nothing particularly special.

Today was just a typical day – and I am lucky enough to be here to enjoy it.

Until next time, #gameon….

Me and my girls Lighting the Night

Happy Cancerversary to me!

It’s okay to feel how you feel…however that is

Today I took my dog for a walk. I wanted a few minutes to myself, so I popped in my AirPods and cued up a podcast I love, with a plan to steal (at least) 20 minutes of alone time.  I didn’t realize my kids had decided to go for a bike ride and, despite being half a mile from home, of course they found me.  My youngest was mad about something her older sister had done and my quiet time was quickly interrupted so I could take on one of my usual roles these days – referee.

Already irritated, a few minutes later a car came careening around the corner, without so much as slowing down, and blew through a stop sign.  I stood in the middle of the street and started yelling at the car (whose windows weren’t even open) to “SLOW DOWN” and that “KIDS LIVE HERE”.

Not my finest moment but I am not myself these days. None of us are.

On a typical day, you can find me waxing poetic about silver linings and turning lemons into lemonade.  I live with an incurable cancer, diagnosed when I was just 42 years old, and I’ve found that being positive really makes a world of difference for me.  Like all of us, some days are harder than others but for the most part I really do try and see the good and not the bad.

All that said, my current state finds me wanting to SCREAM every time I see a Facebook post telling me to “appreciate this quiet time” or “hug my kids”. 

I realize the hypocrisy in this. I fancy myself a writer since leaving my full-time job a few years back and almost every blog I’ve written over the past five and half years has been about just that – being positive.  But right now I am irrationally and inexplicably furious every time I see people telling me how to feel.

Because right now I am mad.

I am sad.

I am anxious.

I am worried.

I am also bored as f***.

And I’m here to tell you – that is just fine.

Let me say, I do realize there are absolutely silver linings that have come from this new world we now live in.

• My family and I aren’t constantly rushing these days. I have three children who play a total of eight sports between them.  We are always on the go.  Some nights we have to be in five places at once – hard to imagine but it’s true.  Now, we get to have dinner together every night and actually take the time to talk to each other. They aren’t shoving food in their mouths in the car as we rush to practices.  On the weekends, we sleep in and get rest, without pondering –as we once had to — how two parents could possibly attend three soccer games in three different states, all scheduled for the same time.
• I have “seen” friends I wouldn’t normally get to hang out with and certainly not this often.  I go for virtual walks with my college best friends.  Last weekend, I was on a video chat with my high school besties for over FIVE hours. By the end we were all a little happily buzzed and I realized that hadn’t happened in forever, since we are all responsible adults who have to drive home every time we meet for our almost-every-other-month dinner dates.  We started the call talking about serious stuff, like this new world we are living in and its impact on our lives, and ended with us laughing until our stomachs hurt about…well, I’m not entirely sure.
• My family has (so far) remained healthy and we have food on the table. Our financial security hasn’t been impacted (as long we don’t look at those 401ks….). My kids have the technology they need to complete their school work. And we have toilet paper and paper towels, which I understand makes us pretty damn lucky.

I realize, logically, there is much to be grateful for. And I am typically a girl who loves herself a good gratitude meme or quote.

But I’m also really frustrated. Beware. Rant ahead …

I’m annoyed by all the people who think the rules don’t apply to them. Who still think it’s okay to have parties, play dates and sleepovers.  Even just a few minutes I saw a post on Facebook about a group of kids playing football at our high school. WTF?!? Still??

I have had FOMO (fear of missing out) since before there was an acronym for it.  OF COURSE I also want to be out with our friends and I want my kids to be with theirs.  Is there anyone who doesn’t?? But my kids can’t and I can’t.  One is the hallmarks of the type of cancer I have (called multiple myeloma) is a highly-compromised immune system. This, coupled with the fact that I am currently receiving treatment for my cancer, puts me in not one but TWO high-risk categories. 

So it really gets me mad when I see that people still aren’t taking this seriously.  And I’m self-aware enough to realize it is, in part, because I resent I have to be even more vigilant than others do. (I’m also a major rule follower who doesn’t understand why people don’t JUST.  FOLLOW.  THE.  RULES!!)

And those dinners we have every night? It’s great to sit down and have deep conversations with my husband and kids. Bu someone has to cook those meals (so…many….meals), after first figuring out what they will consist of.  I feel as though all I do is talk about what we are going to eat, prepare what we are going to eat, serve what we are eating and clean up from what we ate. Wash.  Rinse. Repeat.

Also, if I see another comment about how “the flu is worse” or – even more infuriating to me – that the pharmaceutical companies, the government, the Democrats (insert your conspiracy theory here…) has the cure and they are not sharing it – I will lose my mind.

Admittedly, the words “big Pharma” are a trigger for me. I proudly worked for one of the largest healthcare companies in the world (Johnson & Johnson) for almost two decades and I know first-hand how invested we are in patients. There’s no secret room where pharma companies are hiding the cure to cancer and now the coronavirus. And the medicines these big, bad companies make? They are keeping me alive.

Yes, the flu may kill more people but this is NOT the flu. I’m not here to debate if it’s worse.  What we can say accurately is that it is different because we KNOW the flu. We have a vaccine for the flu and it’s not a NOVEL virus. Novel means new – which means unknown and unpredictable.

So please stop saying this is no big deal and that the flu is worse. No one wants to hear it,  least of all those people who have lost otherwise-healthy loved ones from this.  Definitley not the health care workers who are risking their lives and can’t be around their families for fear of spreading the disease.  And for sure not all of us who are stuck inside and starting to get really cranky. At this point it doesn’t matter if you think the flu is worse. We are still stuck at home – at least those of us following the rules.

The other day a friend posted a question in our local moms Facebook page, asking a clarifying question about an email that had been sent out by our district about grading in this new world.  It wasn’t critical, at least it didn’t seem so to me.  But she got a stronger response than seemed warranted, telling her to just hug her kid and relax.

What this made me realize is that two things, two feelings, can be true at the same time.

We can love, respect and admire the incredible people who teach and love our children while they are at school and still be worried about the impact this situation will have on their grades, college applications and school life. 

We can appreciate how unprecedented this change has been for those same educators and still wish that the use of technology and online learning was going a little more smoothly (or – I’m sure in some districts – than is happening at all) so that our children can feel a sense of connection to their school & their classmates, as well as a sense of normalcy.

We can love our children with every ounce of our being and still be sick of being around them all the time.

We can be grateful they are healthy and still wish they didn’t say “Mom? Mom? MOM MOOOOOM ????”  7,102,894 times a day.

We can believe this time will teach us all new skills like resilience, empathy & so many others and still also have no desire to use this time to teach us other skills like how to knit, how to speak a new language or how to play an instrument. 

The fact of the matter is that we are all allowed to feel EXACTLY how we feel.  And those feelings are going to change weekly, daily and even hourly.  It’s also acceptable that I be super mad/disappointed/frustrated by something that may not be a big deal to YOU.

Our youngest daughter is in third grade.  She is the last of our kids who will “graduate” from an elementary school in which we have had children enrolled for almost eight straight years.  We realized the other day that, should school not resume this year, she won’t ever be a student there again. She won’t have a Third Grade party or clap-out ceremony — she may never walk those halls again. I realize this may be small potatoes to some.  I know there are high school seniors who won’t have proms or will miss real graduation ceremonies. There are college athletes who won’t get to take the field again.

And this doesn’t even address those families who have lost their incomes, who are worried about loved ones who have gotten sick, who are terrified to go to hospital to deliver their babies or who can’t properly bury a loved one who has died.

It sucks. Not more or less. We don’t need to compare the suckiness. It’s not a competition.

It ALL just sucks.

For most of us, this is a situation unlike any other we’ve ever been in. There’s no handbook. We are figuring it as we go – and everyone has been affected in so many different ways.

Please let people feel how they want to feel about all of this. When a friend or family member is complaining, it’s okay to encourage themto find the silver linings (because there are usually some to be found…) but you can always just acknowledge some (most) of this sucks. Like a LOT.

Just like in the pre-coronavirus world, you have NO idea what is going on in someone’s life and why they may feel differently than you do about this situation. Why they may be upset or worried or mad or anxious or sad (or, like me today, cranky).

Most of us are on an emotional roller coaster these days – and that’s to be expected in times like these.  Be honest about those emotions, allow yourself – and those around you – to feel them and process them. 

After that it will be much easier to actually find those silver linings when you’re ready to look for them.

Until next time, #gameon….

Today I turn 5!

In the myeloma community, the day of your stem cell transplant is supposed to mark your new “birthday”.  I’m a girl who LOVES birthday, so Happy Birthday to Me!

In the weeks leading up to February 25, 2015, I went through rigorous screenings to ensure my body was medically fit for the transplant.  Once it was determined I was, millions of my own stem cells were harvested in a process called apheresis.  This wasn’t the first (or last) time I realized science is truly amazing.  During apheresis my blood was pulled out through a catheter in my neck (ouch) and pumped through a machine that spun out the healthy stem cells and returned the rest of the blood back to me.  In my case, it took two days to get the millions and millions of cells needed to do my first transplant, as well as put some on ice in case I ever need them in the future.

The stem cells are what were used to recover my body from the high-dose, INTENSE, nearly-could-kill-you chemotherapy, called melphalan, that wiped out my entire immune system.  In addition to obliterating the bone marrow, melphalan causes other severe side effects, the worst of which was (for me) the loss of my hair.  During this time I was extremely vulnerable to everything and was isolated in my hospital room with special air being pumped in.  Because I was neutropenic, there were many rules about what I couldn’t eat (no fresh fruits or veggies, no lunch meats, no unpasteurized cheeses…a lot like being pregnant again without the great reward at the end!) and couldn’t do (no contact lenses, no shaving).  I could only see my kids through the screen of an iPad as those little germ monsters were exactly the type of thing the restrictions were trying to protect me from.

But it was all worth it because the transplant did its job and I was able to go back home to my family in a record (for my hospital) 17 days!   And even better?  The transplant reset the abnormal cytogenetics that were present when I was first diagnosed which had unfortunately placed me in a high-risk category.   A bone marrow biopsy done three months later showed there was NO cancer present. Despite this, I was put on maintenance therapy because it is the best way to control the disease and prevent relapse.

It would be an understatement to say a lot has changed since then.  My numbers went up and down for over a year after the transplant, finally settling into steady zeros in April of 2016.  I had some minor bumps and tweaks – until January of this year.

Today, exactly five years later, I sat in the same hospital getting a new type of treatment.  At Week #5, I am just about at the halfway mark of my new treatment plan, which has me taking a pretty strong stance against the TINIEST blip up of my M spike.

Admittedly this is a pretty aggressive approach.  As a reminder, my M spike rose to .05 then .06.

The part I don’t think I shared is that the blood work done when we started this new plan showed it went back to ZERO.

Yup,  Z E R O.  We found this out AFTER we started all of this. This is one of the many (many, many, MANY) reasons why myeloma sucks – it can be so tricky and hard to understand.  There is no real explanation for why this happened.  But the reality is I never would have agreed to a change had this scare not occurred.   And I truly believe this is a change I needed, despite my strong resistance. I believe it will give me the strongest and deepest response for the longest amount of time.

Change was the theme of my speech last week when I had the INCREDIBLE opportunity to speak to a room of 200+ senior leaders from Johnson & Johnson, the company I had the honor to work for before leaving after 17 years to focus on my health.   This time I stood before them as a patient.

I talked about how, as a Human Resources professional, I was supposed to be good at change.  And I was good at it – at work.  Navigating the organization through some very significant changes meant change management became a core competency for me.  Professionally.

Personally?  Well…..that was a different story.

If I ever had a scare, despite knowing many new treatment options had become available, I was always resistant to change.  My plan was to keep every new drug available to me in the arsenal until I absolutely needed them.

But Multiple Myeloma is smart… and it can adapt… it is constantly changing.

I never would have imagined all those years working at Johnson & Johnson that my worlds would collide in this way. I had always been the most proud employee.  And always a very happy consumer.  But an actual patient, and an oncology patient at that?  I didn’t see that coming.

What I have learned these last five years… is that life is unpredictable.

Change can be inspiring, messy, scary and the biggest blessing – all at the same time.

In the last 5 years I’ve experienced SO MUCH change – and so much loss.  I lost my father and my father-in-law.  I lost my mom.  I have lost my brother, cousins, my sister’s husband.

I lost the ability to retire from Johnson & Johnson on my terms.

I lost the naive belief that I am immortal.

These past five years have reminded me that life is short.

But so many wonderful things have also happened.  In the last 5 years I’ve also became an Aunt, twice.  I was named 2019 Woman of the Year by the NJ Leukemia & Lymphoma Society, raising over $130,000 in just 10 weeks with the help of so many of you.

In a few weeks, my husband and I will celebrate our 15-year wedding anniversary.

Each day, I get to watch my children grow up.

Life is a gift.

As recovered from my transplant, I had a lot of time to reflect on the amazing people in our lives.  This help extended from our family, our friends from near and far, as well as my J&J family.  I had a lot of time to remember who and what I was fighting for.

So, as I laid in my hospital bed, I decided to write a letter to our CEO, Alex Gorsky.   This is part of what I said to him…then and last week.

“I don’t imagine that you, our incredible oncology researchers or leaders need even the slightest bit of additional motivation to find a cure.  But if there is something that one patient, one MOM, one J&Jer can do to help bring into even-more crystal-clear focus what we are playing for …please let me and my family be that face.  We are playing for no less than an infinite remission (long enough to get me to the cure which I trust IS coming….).

I am clear on today’s assessment of myeloma as currently incurable. I was also incredibly happy to hear your aspiration for a cure by 2030.  This makes me happy, though not yet content…15 years is a lot of time. 

I want to remind you that I am ONLY 42-years-old and I have a fantastic husband and three beautiful children, ages, 7, 6 and 4.  Leaving them is NOT AN OPTION… 

I will end this somewhat long note by simply saying thank you…And to ask you to please, please do not take our collective eyes off the ball of curing Multiple Myeloma….I am counting on us….my family is counting on us.

To be able to stand on a stage almost exactly five years later, surrounded by larger-than-life pictures of my amazing family, and share my story and this same plea with this group of leaders was a full-circle moment that meant the world to me.  To put a face to a patient like me who, as a 42-year-old Caucasian woman, isn’t “supposed” to get myeloma was empowering – and helps me make sense of why this happened to us.

So much can change in the blink of an eye, and we don’t always understand the “why”.  Being healthy enough to do this, being invited to do this, being brave enough to do this is one of my “whys”.    I look forward to many more chances to tell my story – and the invite to come back once that cure has been found.

Until next time, #gameon…

***********************

Photo credit:  Jorge de Casanova 

It ain’t (really) broke but we are still going to fix it

It was almost a year ago that I wrote a blog about Cancer being an a**hole.  I made the rather astute observation that cancer sucks.  Having lived with cancer for over five years now, I feel qualified to make this statement, even though I know I am luckier than many people who are doing the same.

When I wrote that blog, it was because my monthly blood work showed a TINY increase in my cancer markers. At the time, I was completely unprepared for that to happen, riding the high of 32+ months of zeros (aka negative M spikes).  It felt like a gut punch – not exactly the Valentine’s Day present I was hoping for.

At the time, we talked through many options from taking a wait & see approach to completely overhauling my entire treatment plan. Ultimately we decided to take a moderate stance – keeping two of the three medicines (one is Velcade, a subcutaneous injection and other is a steroid called Dexamethasone) and switching out the daily oral chemo (called Revlimid) for its cousin, called Pomalyst.

And it worked!  Though the side effects (mostly GI issues) remained the same, my numbers went back to zero.  YAY!

And then, just before the holidays, the number creeped up just the TINIEST bit (to give you perspective it was .05). It was small, minuscule, teeny…but it was not nothing. It was SOMETHING.

My first instinct (again) was to maintain the status quo. There were higher dosages available to me of my current medications.  Maybe we could simply increase the schedule of these drugs. Certainly we could try that first, right?

When my husband and I met with my oncologist, he was ready for me, knowing this would be my desired strategy. He explained that everything we thought we knew about Multiple Myeloma we are relearning.  He also gently reminded us the genetic testing done when I was diagnosed showed a deletion of an important chromosome (called deletion 17), which put me in the highest risk category for Multiple Myeloma and, given that, me doing this well at the 5+ year mark “exceeds all expectations and predictions”.

Well D A M N.

Both of our faces dropped – what a sobering thing to hear.  Later that day, after I reflected on this a little,  I was pretty amazed by this but my first thought? S H * T.

The good news is that the stem cell transplant I had in February 2015 reset my genetics, which means that abnormality has been “corrected”. However that label of “high risk” will always follow me, no matter how well I appear to be doing.

It is because of this, and my young age (it’s always nice to think someone considers me young…), that my doctor has been staunch in his strategy, which is to treat me aggressively (to clarify, this doesn’t mean that my CANCER is aggressive, just the way we approach treatment for it).

I am so lucky that in the years since my diagnosis, the landscape has changed dramatically.  Which means I can try and be less nervous about running out of treatment options because there are so many more drugs available to us now – and more are coming all the time.

And so, we are making BIG changes – changes that will have an impact on me – and our family.  Beginning next week, I will start two new drugs – one called Krypolis and another (made by #mycompany, Johnson & Johnson) called Daratumumab.  

Up until now, I’ve been pretty spoiled. Well, as much as one can be spoiled when taking an oral chemo at home and receiving chemo injections every four weeks.  But the schedule of my treatment has allowed me to not always feel like a cancer patient. And even when I go for treatment, I’ve convinced myself I’m going in for a little tune-up, like visiting Jiffy Lube every few weeks. I pop in, get bloodwork done, get a quick injection and I’m on my way.

This will be quite different.  These medications require infusions that can take anywhere from six to eight hours and the initial cycle will be 13 weeks.  This will mean leaving my home – and kids – early in the morning and spending full days sitting in a chair (something I’ve rarely done during this journey).

My first reaction was…well, tears. There is definitely no denying I’m a cancer patient now.  You don’t hang in a chemo chair for an entire day if you’re not.  It is incredible how quickly those dark thoughts reappeared… Is this considered a relapse?  What if this doesn’t work?  Am I going to die?

I am nervous about the unknown.  I’ve had a good routine going for quite some time and I don’t know what to expect now.  How will I react to these new drugs?  Will there be side effects?  Luckily I am told these drugs are generally well tolerated. I can expect to be fatigued and short of breath but there will be no hair loss (yay!!!).  I will have to double my dosage of steroids so I have already apologized to my husband in advance for being just a little crazy for a while.

It took some time – and lots of reflection – but I realized I have to reframe how I look at this.  We are being PROACTIVE, getting in front of a problem before it becomes one.  Things aren’t quite broken but we are going to fix them anyway.  We, as a family, will have to make short-term sacrifice for the long-term benefit because if my myeloma is even trying to wake up, we must do EVERYTHING possible to beat this beast back down, into oblivion.  And once these 13 weeks are over and this works (and it WILL work!), I should only need to go once a month – and no more medication at home every day.

I told myself for so long my best bet was to stick with what I was taking as long as absolutely possible, never wanting to switch unless it was completely unavoidable.  But my doctor used an analogy that really resonated for us. He asked us “if you’ve got Michael Jordan on the bench why wouldn’t you bring him into the game?  Why would you save him?  Why not run up the scoreboard and stack the odds in your favor?’

Since my initial diagnosis, there are been SO many drugs launched for the treatment of multiple myeloma.  I’ve always wanted to leave them on the bench because I could never predict when the score might change and I might need them.  But I am lucky enough that the bench is filling up all the time.  This one drug in particular wasn’t available to me when I was first diagnosed and has been described as transformational.  Data shows that the earlier a patient takes this drug, the stronger and more durable their response to it will be.  And while there is still no cure for myeloma, it is quite possible at some point one of these cocktails of drugs will put my myeloma to sleep permanently, or at least for a very, very long time.  That is a risk I am willing to take.

Until next time, #gameon

 

 

5 years and counting…

(warning….long post ahead…)

There are anniversaries that seem obvious to celebrate – the anniversary of your first date with your partner, your wedding anniversary or the anniversary of when you started a job.

What may seem less obvious is the anniversary of the day you received the worst news of your life.  Or in my case, the day MY HUSBAND received the worst news of my life.

I used to love Fall – I’m not a pumpkin spice junkie like so many people but I do love the leaves changing, the weather getting cooler and breaking out my sweaters, hoodies and boots.  But now each Fall just serves as a difficult reminder of how our lives forever changed on a seemingly-normal autumn day.

You all know the story by now but I’m going to take a stroll down memory lane anyway.  I had an infection in my eye but I threw on some Jackie O sunglasses and we all headed out to our school’s Fall Fest to decorate pumpkins and paint faces.  By that night, I was feeling under the weather and by morning felt like I was coming down with the flu. My husband and our three kids, ages 4, 6 and 7 at the time, dropped me off at the hospital on their way to a day filled with soccer.  I remember calling Brian to tell him how surprised I was that they were admitting me because I was highly anemic and my calcium levels were elevated & rapidly climbing (in my naivete I thought a lot of calcium was a GOOD thing).  I asked what that could mean and the doctor mentioned something called Multiple Myeloma.  I had never heard of it and actually googled Melanoma, which a dear friend had been successfully fighting.

I eventually searched for the right type of cancer, learning that Myeloma can be present in your kidneys, blood and bones.  This explained why the doctors were going to send me for an x-ray.  In the x-ray they were looking for holes (or lytic lesions) in my bones, which would support a diagnosis of myeloma – holes they were unable to find. I sent my husband a text that said “The x-ray looks good.  Doesn’t completely rule out myeloma but it’s a good sign!”  That is literally the last thing I remember.

Things quickly spiraled downwards from that point on. The decision was made to put me in a medically-induced coma, on a breathing tube and feeding tube.  They did dialysis twice because my kidneys were struggling.  They also did the bone marrow biopsy that would ultimately confirm a diagnosis of myeloma on October 23, 2014.  Getting this diagnosis meant I needed a specialist – not just ANY specialist but one who knew this tricky disease. So I was moved, via ambulance, to another hospital to be treated by the best specialist in our area.

All of this was done while I was unconscious.

When I woke up, everything was differently both literally and figuratively. I didn’t recognize where I was, now being in a different room than the one I had “fallen asleep” in.  It was late on a Saturday night and my husband had already gone home for the night. I couldn’t speak because I still had the tubes down my throat. I remember being SO thirsty and begging for water (well, it was hard to beg since I couldn’t talk). I asked for a pen & paper but couldn’t hold a pen in my hand because I was too weak after almost of a week of being unconscious.

The next day Brian came back. As he stood in the doorway of my hospital room, the look on his face and his silence told me everything I needed to know.  I knew that, at 42 years old, I had cancer – and a cancer that I had never heard of.

When my new oncologist came into my room early that next day, he told me multiple myeloma is “incurable but highly treatable”.  He told me that ten, even five years earlier, this diagnosis could have meant something very different. That we would be talking about quality of life and how much time I had but now, thanks to the many advances in treatment options, it was possible I could live with cancer the way people live with diabetes and other chronic illnesses.

When you find out you have cancer, you CRAVE information. So I googled it.  BAD. IDEA.  At the time, so much of the statistics that were available were outdated – and still are. According to the American Cancer Society, “Survival rates tell you what percentage of people with the same type and stage of cancer are still alive a certain amount of time (usually 5 years) after they were diagnosed. They can’t tell you how long you will live, but they may help give you a better understanding about how likely it is that your treatment will be successful.”

The Multiple Myeloma Research Foundation (MMRF) reports that from 2007 to 2013, the five-year relative survival for multiple myeloma was 49.6%, meaning that approximately 50 of 100 people with multiple myeloma were living five years following their diagnosis.  To put that statistic into perspective, the five-year relative survival rate for multiple myeloma just 13 years ago was 34.5% and was just 12% from 1960 to 1963. This is progress.

More good news?  According to The Leukemia & Lymphoma Society (LLS), in 2014 the 5-year survival rate was 75.7% for people with myeloma who were younger than 45 years at diagnosis. And when these numbers are published again in 2020, we have every reason to believe they will be even more encouraging.

But 5-year survival rates don’t mean the same for myeloma patients as they do for other cancer patients.  In many cancers, if there has not been a recurrence by five years after initial diagnosis, the chance of a later recurrence is very small.  Those patients are usually able to feel some level of optimism that their cancer likely won’t return.  But because myeloma (currently) has no cure, these statistics don’t necessarily give the same sense of relief.  Myeloma is a tricky disease, almost always outsmarting the medicines designed to attack it.  Which is why having so many treatments is critical – once one treatment has stopped working, you have to move onto the next one.

All that said, five years is still a B I G deal.  That first week, while I lay in a hospital bed unconscious, as doctors ran test after test after test…., there was no guarantee that I would come home at all.  Even after I did, five years felt like a lot to ask.  I haven’t always believed I would still be here five years later.

Each night, as I lay in my bed with my youngest daughter, who was only 4 years old at the time, I prayed I would see her go to kindergarten. This year she started third grade.  I have been able to see my older daughter get a shut-out season as a goalie on her travel soccer team and help her make posters as she ran for student council.  I get to watch my son play hockey (every. single. weekend. all. year. long.  seriously though, the hockey season NEVER ends), start middle school and make the school soccer team.  I was there to see him handle his first breakup.   These kids are (most of the time…) great kids and I get to sit side-by-side with my husband as we watch them grow, mature, learn & make mistakes.

Over the past five years, so much has happened.

I cried at the funeral of my father, who died just two months after my diagnosis.

I got to see my sister get married – and hold her hand when she lost her husband just one year later.

I was able to see my brother-in-law fall in love with an amazing woman and make me an aunt not once, but twice.

I became an orphan after losing my mother, just 2 1/2 years after losing my father.

I watched sobbing as my husband gave the eulogy at his own father’s funeral a mere five months later.

So many good times and some really, really hard times.

Five years is both long and short – but it’s never lost on me that this time is a gift.  From every day things like arguing with my kids about doing homework to becoming an Uber driver as I cart them to their 1,297 activities. I have started a second phase of life, writing this blog (which brings me SO much joy) and becoming a cancer advocate, raising not just awareness of multiple myeloma but also $200,000+ to help find cures for blood cancers.

Hell, I was named the 2019 Woman of the Year (sidenote/brag:  I am currently the record holder for the NJ LLS chapter, raising $130,000 during my 10-week campaign!) and my face is currently plastered on a billboard just north of Exit 13 of the NJ Turnpike. I NEVER saw that coming five years ago! Keep your eyes pealed when you’re headed northbound, people!)

In five years, I’ve seen politics go crazy, I’ve cried over the heartbreak of more and more school shootings and my kids & I camped out to watch a solar eclipse.  We’ve made some amazing new friends we love and have lost friendships with people who sadly disappointed us.  I’ve lost my hair, seen my body at its weakest and at its chubbiest, a lovely side effect of the medicine I take to keep me alive.  But this body is doing its job, fighting this cancer and keeping it away so I’ll take it!

Over the past five years….I’ve seen F I V E years.  Five years of making memories with my loved ones, going on vacations & date nights with my husband as we get ready to celebrate our 15-year wedding anniversary in a few months.  I’ve watched my kids make new friends, wiped their tears when they get disappointed, taught them to work hard in school and in the sports they love and generally grow into smart, kind, sometimes aggravating but mostly terrific people.

None of us knows what the future holds for us.  Both my parents went to sleep one night and didn’t wake up the next morning. My father-in-law took out the garbage, fell and broke his hip and never went back home, dying just two months later, leaving my mother-in-law a widow after 50+ years.  The point is LIFE. IS. SHORT.  And unpredictable.

On the same day I celebrate with gratitude getting to this major milestone, I will lose a friend I’ve made on Facebook, a woman who also has myeloma.  She has had this disease about the same amount of time as I have, but her body has responded far differently.  She has been through 15 or more lines of treatment over the past five years.  She too is a wife, a mother, a writer, a cancer advocate.  But tomorrow she carry out her plan to die with dignity, with her family by her side, to stop her unbearable pain.  The differences in our path are not lost on me and I can’t help but wonder why her and not me.  And the fact that this is happening on the 5-year anniversary of my own diagnosis both guts me and inspires me to keep fighting with everything I have.

I plan to honor her legacy by continuing to fight, continuing to push for advances in treatment and by continuing to appreciate every single day I am given – because none of us knows where life will take us.

Rest in peace, Cherie.

Today was a really cool day

I haven’t written in a while and I honestly can’t say exactly why.  I have some theories.  First, living with cancer, while having a husband, three ACTIVE kids  and a dog keeps me pretty busy.  I also usually write when I’m trying to process some big feelings – sadness, anger, frustration, gratitude or relief.  When I don’t write for a while I tell myself it’s maybe a good thing. Because I don’t need that cathartic release.  That I am doing okay…

Many days I feel pretty good.  I imagine if you saw me at Back to School night, in the stands or on the sidelines, you wouldn’t know I have cancer.  Other days aren’t as good. Other days I nestle my butt on the couch with my dog, laptop and remote the minute the last bus pulls away and don’t get up again until the first bus is due to arrive.  On those days I am living into my kids’ vision of how I spend my days:  binge-watching Netflix all day.

I realize I have it far better than so many other myeloma patients but I can only really speak to own reality.  I am in remission (woo hoo, blood work last week confirm my latest zero!) but I do still get treatment. I take an oral chemo every day, along with few other medicines (yep, I have one of these super cool, hip pill organizers!) I also receive an injection two out of every six weeks, which comes with a F U N dosage of steroids (ask my husband and kids just how much F U N  I can be during those weeks…).  

I say this because I think it’s sometimes assumed, because I am in remission, perhaps I am free of medicines, free of side effects, free of cancer. Unfortunately this isn’t true.    But I take these medicines, despite the good, the bad and the ugly, because it is needed to keep my myeloma at bay.  And I never lose sight of the fact I am one of the luckier Myeloma patients.  Many, MANY have it far worse than I do – and they handle it like the bad ass warriors they are.

This diagnosis has given me some gifts too. I try really hard most days to see a silver lining.  It’s who I was before cancer, and who I try to be since.  It’s what my family needs and it is what I need.  This, too, is harder some days than others.

Today was one of those silver lining days. Today I had the opportunity to speak (for the first time) to an audience of people who actually make the drugs that are keeping those zeros coming.  After my Stem Cell Transplant, I started the maintenance protocol I mentioned above and have been taking drugs made by Celgene, a global biopharmaceutical company that is committed to innovation in myeloma (as well as other blood cancers).  Through my involvement with The Leukemia & Lymphoma Society, I’ve had the opportunity to speak to many audiences and do many incredibly rewarding things (like, you know, raise $130,000 and be named LLS NJ’s Woman of the Year this past June…a blog about that still has to be written!  In the meantime, here’s an article about the campaign, before it was over. But I digress…)

But today was different. Today I was sharing my story with a room full of people who spend their days working for patients like me.  I had the opportunity to show them that a myeloma patient can look like me – a young(ish), Caucasian, mom & wife who does not fit a typical patient profile.

I was able to make sure they know my husband needs me, my kids need me, my dog needs me (because she will starve. Really NO one else can feed her??) – I have lots and lots to live for.

I was able to share with them that I am (mostly) lucky, as lucky as you can be living with cancer.  For me, so far, myeloma has been (mostly) manageable – falling into that “highly treatable” category my doctor spoke about. But there are patients, MANY patients, for whom this is not the case. I was so sadly reminded of that just this week when a 50-year police officer  – a husband, a father, a brother – from our town lost his too-short battle.

I was able to ask them to keep pushing, keep innovating and never take their foot off the pedal because there is far too much at stake.  I’m super excited & proud to have been invited to go back, in a few weeks, to speak with their global pipeline team.  These are the people who are working on NEW drugs and the hope is hearing a patient perspective will fire them up even more to never stop until that cure is found.

Until next time, #gameon

Hitting the reset button

A few months ago I wrote a blog about cancer being an a**hole.  This should require no explanation or defense but for me, at that time, it was because monthly blood work showed my cancer numbers were elevated.  That, after almost exactly three years of having no evidence of the bad protein in my blood that is the marker of myeloma, it appeared it was making a return.

I was shocked, angry, terrified …you name it. My doctor, on the other hand, was pretty matter-of-fact.  He reminded me the bench is deep for myeloma now.  There have been several new medicines launched since my diagnosis and he shared his confidence that we could get this number back to zero.

Before making any changes, we decided to run all available tests. I had a bone marrow biopsy (ouch!!), a pet scan and had my blood re-tested.  Everything came back clean, even my M spike was back to zero. HUH?  I was confused but relieved.  Maybe that “epic lab fail” theory wasn’t too far-fetched after all…  Aside from a return to the previous timing & dosage of my medicine (we had tinkered a bit since I had been doing so well), we continued as we had been.  And I let my guard down, just a little.

This was a mistake.

This month, my blood tests show something is off, again.  I had a sinus infection and had been on antibiotics so we ran the numbers one more time, as illness can sometimes have an impact.  And unfortunately it confirmed my M spike had truly gone up. As it had been in February, it is S M A L L (.04 to be exact) but it is still something.  It is no longer nothing.

Any cancer patient will tell you that one of the absolute worst parts of having or having had a cancer diagnosis is the waiting. Sounds crazy but it’s true.  Those 48 to 72 hours between having your arm squeezed tightly by the tourniquet & watching those vials fill up and you getting the results are complete and utter torture.  Every possible scenario runs through your mind and, no matter how long it’s been, you never truly feel safe.

So this time, when the phone rang and I saw it was my nurse, I knew it wasn’t good.  They don’t usually call with the good news, at least not when you’re in a rhythm and a text with a confirmation of good news has been working for 30+ months and counting.

My stomach dropped as I got up from my chair on the sidelines of my daughter’s lacrosse game.  Just seconds before my biggest worry had been if she would make another great save as the goalkeeper – and now I knew I had far more to worry about.

My nurse, on the other hand, didn’t seem too concerned.  She was upset because she knows me well enough to know I would take the news hard but, as they had before, my team had a plan that could quickly and easily be implemented with the goal of getting me back to zero.  She reminded me that .04 is TINY but the idea is you want to stop this in its track before it gets any more worrisome, which is why we wouldn’t take a “wait & see” approach. My team is prone to ACTION and, while that can be scary, it also feels right.

I had to quickly recover – I’m a mom after all. I met my husband as he walked towards the field and cried for a few minutes.  Then wiped the tears from my face, stole the sunglasses off his and returned to my chair. My pity party would have to wait.

But as I sat in my chair I felt a range of emotions.  Fear, sadness and, quite honestly, ANGER.  WTF??  I am in the middle of this life-changing fundraising campaign with a goal to raise a LOT of money for cancer research. I am usually someone who believes in karma and, perhaps naively, believed this would have gotten me some good mojo.  I obviously didn’t do it for that reason but seriously – this has to happen as I am still in the middle of this campaign??

But it has been a reminder of exactly why I am doing this. As I said when I had the scare in February, the reality is this happens to almost every myeloma patient at some point.  Since there is STILL no cure, we will all always live with the knowledge these numbers will fluctuate and, in worst cases, there will be relapses.

The GOOD news is that this is not considered a relapse (my doctor called it a “biochemical abnormality”.  Hell, no one likes being called abnormal but I’ll still take that any day of the week over “relapse”). I have been describing it like this – the medicine I take is like a dam and it’s job to hold the myeloma back.  Right now I’ve sprung a TINY leak.  We need to adjust the materials we are using for the dam to plug that leak before it becomes a huge gush of water.

So what does that “plug” look like?  We will swap out my current oral medication (a drug called Revlimid) to its first cousin, a similar but different drug (called Pomalyst).  The hope is my body will quickly respond to this and get that number back down to zero. As I have shared before, my current medicine has really taken a toll on my stomach. My doctor has suggested switching in the past and I’ve been really resistant, as I haven’t wanted to make any changes unless absolutely necessary.  But that time is now – and might actually wind up being the best decision for me.  My stubbornness may have prevented me from trying something that is more gentle and tolerable for me.

After a little time to digest this, I am feeling more at peace.  We knew this would happen at some point – I just hoped it would be many more years down the road.  I can’t tell you I haven’t laid in bed considering all the worse case scenarios (you know, like… what if this medicine doesn’t work?  What if only works for a short time? What if this one makes me feel worse?). I was (kindly & politely) reminded that my overachieving tendencies, those that have me constantly striving to be that A+ cancer patient, can also bite me in the ass.  Apparently I’m an overachieving worrier as well! I can ALWAYS find something to worry about.  But things I never worried about – me getting cancer at 42, losing my dad…and then my mom – still happened.  There is so much in life that we cannot control – and even if you’ve played out every worst case scenario – it doesn’t make it hurt less, doesn’t make the pain less raw.

I’ve written in the past about worrying, about how it doesn’t change anything.  And I needed that reminder that it doesn’t help. It just makes you anxious ALL. THE. TIME.  So the plan now is to take one day at a time.

With a few days to pause and reflect, I realize this reinforces the work I have been doing since my own diagnosis, and certainly over these past eight weeks, to raise money for research.  Ten years ago, even five years ago, there were far fewer options available.  When my doctor called to put my mind at ease, he rattled off the names of many different drugs that myeloma patients now have at their disposal.  Game-changing  immunotherapeutic treatment approaches such as CAR T therapy (which still has a ways to go to be considered possibly curative but it’s a GREAT start) weren’t even imaginable a decade ago.

And this is ONLY the case because research is being done to advance treatment options – and find a cure someday.

I promised in February when I had my first scare that I would double down on my commitment because I knew that one days my numbers could fluctuate…and the tests would be right. Sadly I didn’t think that would happen just two months later.

Many of you will ask what you can do to help.  Step one is simple – please keep sending all your positive energy, love and support our way.  We take every single bit and it truly, TRULY does make such a difference.

And if you want to help advance the science that will help me and other patients like me, please consider a donation to my campaign.

Now we will hit the reset button and start over.  I don’t know what the weeks to come will bring but I am ready to do this again.

#gameFingON

#letsdothis

I fight for those who no longer can

I started writing this blog to share information in one concise place with friends & family who were tracking my journey, post-cancer diagnosis. Initially it was much more logistically focused (when was my next round of treatment?), with some science thrown in (what exactly is a stem cell transplant?)

But over time, it become a forum for me to share my thoughts, sometimes the darkest thoughts I had.  I use this blog as my own therapeutic outlet, when I need to exorcise my feelings to be able to move on.  Let’s be clear – it is almost always selfish, about freeing myself from my demons.

But over time, I realized that I wasn’t alone.  That I wasn’t the only one feeling these things – and that made it much easier for me.  Through my blog and its Facebook page, I will often receive messages from people who themselves have myeloma or have a loved one who does. I have shared emails, phone calls and messages with many folks like this and honestly it helps me so much (and hopefully them as well).

One such message came from a woman JUST like me:  Taylor, a 43-year-old mom living in Pennsylvania with her husband and two daughters, ages 13 and 15.  She shared her fears with me – the many “whys” she struggled with, the tears she shed every day and the fears she and her family had coming to grips with her diagnosis.  She shared that she would wake up every day thinking it was a bad dream.

Her doctors told her that her myeloma was aggressive.  At diagnosis, she had multiple tumors, was receiving bi-weekly chemo and radiation all in preparation for a stem cell transplant a few months after her diagnosis.

This woman read my blog and it seemed to have helped her…even if just a little. She asked me how I get myself out of dark places and if I had any advice. We chatted a little bit and then…life happened.

Fast forward to this week, when I received a message from her husband telling me that Taylor died just SIX months after her diagnosis.  Reading this was a gut punch to me. Her husband said she was “the healthiest person they knew” and was searching for answers. WHY had this happened to HER?

And that was all I could think of when I read his message. Why her?  Why not ME? Why I am lucky enough to still be with MY husband and MY kids for four years and counting?

I have no doubt that Taylor were very alike – that she was a great wife who loved her husband, an excellent mom who adored her kids and wanted to live more than anything else in the world.  I am sure she found the best doctors she could, advocated for herself and stayed positive. She wanted to live, I have no doubt.

There is no way to understand why cancer strikes ANY of us. Why some have an easier time than others, why some respond better to treatment and its side effects, why some live and some die.  There is no formula, no one-size-fits-all approach that works for all of us in the same way.

This is why I fight. This is literally a matter of life or death for me.  This is why I work as hard as I do to help try and find innovative treatment options, help fund more research, help find CURES so that other children don’t have to live a life without a parent. So MY kids don’t have to imagine a life without their mom.

I am sure you are all tired of my fundraising.  I am starting to get tired of myself!  But I beg you to consider sticking with me for a few more weeks.  The finish line is within our sights and, with your help, I am so close to making a big difference.

Please do it for me. Please do it for Taylor. Please do it for every cancer patient out there who needs our help NOW.

#gameon

To help  me reach my goal, please click here and make a donation of ANY amount. Every dollar counts!

https://pages.mwoy.org/nj/nnj19/jmoog

 

 

Origin Story: #gameon

As I write this, the movie Avengers: Endgame is shattering box office records. In honor of the super hero genre, it felt like a good time to share a little about my use of #gameon, its origin story if you will.

In case you’re not a big fan of super hero stuff, according to Wikipedia, “in entertainment, an origin story is an account or backstory revealing how a character or group of people [came to be]…giving reasons for their intentions”.

The origin story for #gameon started with my cancer diagnosis in October 2014.  If you follow this blog with ANY regularity, you know that I was diagnosed with cancer after going into the hospital with an eye infection.  Within 48 hours I was unconscious, on a breathing tube, on a feeding tube and had dialysis twice.  Within 96 hours my husband received word that his 42-year-old wife had a rare – and incurable – cancer called multiple myeloma.  I say my husband because I was (still) unconscious.  One week after being admitted into one hospital, I woke up in an entirely different hospital. One my husband had to move me so that I could be treated by the best doctor in our area for hematologic malignancies (aka blood cancers), Dr. Roger Strair.

I remember waking up on a Saturday night, with a nurse holding my hand, and being so confused. This wasn’t where I had last remembered being.  The room was different. My husband wasn’t there (he had been but he had already left for the night).  And I couldn’t talk because of all the tubes in my throat. The sweet nurse told me she knew me. In a strange twist of coincidence, she was the cousin of one of my closest friends and one of my college roommates, Kim.  She wasn’t even a nurse on my floor but had been sent down to keep an eye on me for my friends who couldn’t be there.

She asked me if I was okay and I gave her a thumbs up. It was all I could do given the tubes. I remember my friends telling me afterwards that texts started flying around – “She’s ok!” “She gave a thumbs up!”  Funny that something so simple gave them such hope but you have to remember – my loved ones had no idea if I would be coming home at all.

The next day my husband came back to see me knowing he had this oncologist – MY oncologist – ready to meet with me the following day.  He would tell you that he was so unsure what to do – should he wait to tell me this horrible, life-changing news?  Give me one more day to just….be?  But there was no way to keep it from me…I could see immediately that something wasn’t right as soon as I saw him in the doorway. He didn’t even have to say the words right away.

That night when he left to go back home and take care of our kids, I laid in a hospital bed all alone, with so many scary thoughts running through my head. But one of the things that really stuck with me was that people knew about this diagnosis before me (because, again, unplanned one-week “nap”).  As the night went on and I couldn’t fall sleep, I started to draft a message to my friends and family.  Because many of them had heard the news about my health before me, I had to get my voice back. I needed them to hear it from ME. Over those hours in the dark I planned what I would say.

When I sent that message, I was trying to convey my attitude about this diagnosis. That it wasn’t going to break me.  That I was ready to do battle – and WIN.  That I had FAR too much to live for.  I signed off that message – and every one since – with the hashtag “#gameon”.

#gameon has become my mantra.  On those days when I’m feeling particularly weary from this experience – living with cancer EVERY. SINGLE. DAY – I recall that attitude I had on my Day 1.  Sometimes it’s a “gameON” or “gameFingON”, the emphasis really communicating how I’m feeling about all of this. But the spirit, the fight, the will are always the same.

When I was asked to participate in the Man & Woman of the Year Campaign for The Leukemia & Lymphoma Society my initial reaction was “Game On!”.  With my cancer diagnosis, came my role as an advocate for blood cancer awareness – and this seemed like the ultimate way to do that.

Until a week or two later, when my monthly cancer markers came back elevated. I immediately panicked, thinking of this commitment I had made. There would be no way to honor this promise if I was starting a new treatment regime. I would be tired, weak, defeated.

However, for reasons even my doctor doesn’t understand, after many, MANY tests, all my numbers are GOOD. We ran every test possible – pet scans, a bone marrow biopsy, lots of blood work – and there remain no signs of cancer anywhere.

In the dark hours after THIS experience, I made a deal with God. If I was okay, I would double down on my efforts to raise money and awareness because the thing with myeloma is it almost ALWAYS comes back. While I’m okay now, at some point in the future those numbers could be elevated again and the next time, the tests might be right.

I called LLS and told them I was back in.

GAME. F’ING. ON.

We each have something we feel this way about – that “let’s do this” attitude. Something you feel you are ready to crush.  I hope when you are facing that challenge that you conjure up that same spirit, that fight, that will to succeed because we each have it inside of us. Sometimes we dig deep, sometimes deeper than we ever believed possible, but it’s there if you look hard enough.

#gameon

********

To learn more about my campaign for Woman of the Year and help me reach my $100,000 fundraising goal, please click here.

To order your own #gameon shirt, please click here. 100% of proceeds will go to LLS.