What an honor it is to be honored

If you’ve seen my Facebook page in the last few months, you know that I was asked to be an Honored Hero by the Leukemia & Lymphoma Society (LLS) at their local Light the Night Walk.  An Honored Hero is someone who has been affected by a blood cancer and is supposed to serve as an inspiration to others with blood cancers.  In my case, I was being asked to speak on behalf of survivors. SURVIVORS.  Pretty freaking awesome, right??

When I was asked to be an Honored Hero, I knew that meant I had an important role to play in raising awareness of – and funds for – blood cancers.  Over the last few months, we assembled the most incredible team of family and friends – and together we raised close to $20,000 (as of last count…donations continue to come in…).  Additionally, I  was asked to prepare a speech to share my story.

However, two days before the event I received a call from my contact at LLS telling me that the program had changed nationally and that I would need to follow a script when I spoke. A script??  At first I was pretty disappointed – I had been working on my speech for over a week.  I also felt as though our friends and family were expecting me to speak – and now I would be saying a total of three lines.

I’m a classic rule-follower so, despite my husband telling me I should say what I wanted, I printed out the script and prepared myself to  make the most out of those three lines.  But the more I thought about it, the more I realized that I had something to share – and maybe, just maybe, if you’re beating cancer that gives you permission to break the rules.

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As more and more friends and family arrived at the event,  I thought more and more about how I didn’t want to let them down.   Going rogue and not using the script wasn’t about being some kind of cancer diva – that they had told me the event would go one way and then changed the plans on me.  It was about not missing the opportunity to represent myself and other survivors.  I thought about the original speech I wrote – which had clocked in at eight minutes – and whether I could modify it to (sort of) fit in the confines of their script.

As I waited to be called to the stage I decided – I’m doing it!  And once I had the microphone in my hand and was looking at the faces of all of our loved ones – and hundreds and hundreds (and hundreds) of strangers – I shared (an abbreviated) version of my story (click here to hear my speech!). And I am so glad I did – it felt good to talk about my journey but also to not always do as I was told.

What was even better was looking out at all of those faces and reflecting on how each and every person who showed up to support us has had such an incredible impact on our lives over these last two years.  Our team originally had about 60 people on it but as the walk got closer, more and more people asked if they could come.  And what I saw as I spoke were the faces of nearly 100 friends and family members.  A melting pot of support made up of people who traveled from near and far, friends who have been in our lives for decades and some who only known us since I got sick.

Most adults don’t get a day where they are the center of attention, aside from perhaps their weddings.   Last year, I was lucky enough to have another night where I was the guest of honor, when my husband threw an amazing surprise party for me – to celebrate my remission and to thank our friends and family for their support since my diagnosis.   So to have ANOTHER night where I was being honored felt like simply too much.

Each time a new person approached our team tent, I began to tear up. To think they would take time from their busy lives and schedules to be there to support me, us – was overwhelming.

As I wound up saying in my non-speech speech, it was exactly two years ago this weekend that I went into hospital with an eye infection and left with a diagnosis of Multiple Myeloma. And if you would have told me two years ago that I would have been on a stage talking about CANCER – MY cancer – I never would have believed you. But here I was – on a stage, talking about CANCER…MY cancer.  And I realize now that perhaps this is what I am supposed to do – raise funds, raise awareness and raise the profile of the Myeloma patient because I am certainly not who you would typically see.

To all of you who supported us – with your donations, your presence at the event or at any point over the last two years – there are few words that could ever, EVER express how grateful we are. So I will simply say…. thank you….

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And if you’re interested in the ORIGINAL  – non-abbreviated – version of my Light the Night Speech, here it is….

Hello everyone – my name is Jen Moog and I am thrilled & humbled to be standing here in front of you as this year’s Honored Hero.  I became involved with the Leukemia & Lymphoma Society earlier this year when a college friend and her daughter invited me to be their special guest at a fundraising event.  Julia Immordino was the NJ Student of the Year, raising $23,000 for this great organization.  At that event, I met Mike Shevlin from LLS and together they inspired me to get involved.  And I’m so glad I did! 

If you are here today supporting this wonderful event, you likely know the daunting statistics

  • That every 3 minutes one person is diagnosed with a blood cancer
  • That every 9 minutes someone dies from a blood cancer.
  • That 1.2 million people are living with, or are in remission from, a blood cancer.

A crucial first step is awareness and events this like really make a huge difference. So thank you all for being here – whether you are a survivor, walking in support of a survivor or in memory of someone who lost their life because of a blood cancer – it is the power of us working together that will make the difference.

My story started exactly two years ago this weekend.  At the time, I was feeling good. I was a full-time working wife & mom at a pretty demanding job.  My husband, Brian, and I had been married for just under ten years and we had three small kids – our son Jake was 7, our daughters Kate and Shea were 6 and 4.  I usually joke that I hadn’t had a good night of sleep in over 8 years!  Looking back, I would reflect that I would get sick perhaps more than the average person and would tend to be sick a little longer. But I live with three little kids – I assumed all moms with kids in school and daycare got sick a lot, felt rundown a lot.  Well apparently not as much as me!

In the days leading up to my diagnosis, I felt FINE, aside from an infection in my eye.  On the day before I went into the hospital, I spent the entire day at our kids’ school, running around as a parent volunteer and having a really good day. Later than night I felt tired and the next morning felt like I was starting to come down with a little something.

Because of all of this, my husband insisted I go to the emergency room.  He and the kids dropped me off on their way to soccer games, with the expectation of picking me up a few hours later, with some eye drops and we would go about our normal – albeit crazy – lives. Imagine all of our surprise when I didn’t come home that day – or for two weeks after.  The doctors did blood work on me and found that I had anemia and high – and rapidly climbing – calcium levels. When I asked the doctor what this could mean he mentioned several things, including Multiple Myeloma, something I had never heard of before. I made the mistake of googling it – which was a TERRIBLE idea.   The information online about Multiple Myeloma – as with most cancers – is outdated and unnecessarily scary.

Multiple Myeloma can impact people in many ways – it can be in your blood, your bones and your kidneys.  I was sent for x-rays to see if my bones were involved – they weren’t so that was seen as a good thing at the time.  I remember texting my husband to say “the x-rays look good – this doesn’t’ completely rule our Myeloma but it’s a good sign”.  And that was the last thing I remember.

What happened next was crazy – within 24 hours I had pneumonia, was unconscious, on breathing & feeding tubes, and received dialysis twice. It took several days for doctors to confirm a diagnosis – any diagnosis.  This was an incredibly scary time for my loved ones, especially my husband who had NO idea what the doctors would tell him on a daily basis.  Each day he would show up at the hospital and wonder what tests they would be running. Each time a test was negative, he would feel a mix of relief and fear because that meant they still didn’t know what was wrong.  It would take several days to confirm the initial suspicion of Myeloma as they waited for bone marrow biopsy results to come back.

Brian would actually tell you that once he got the diagnosis of Myeloma he was relieved – he had an answer and there was a plan. And he knew at that point that I would be coming home, something that had not been assumed in the days before.

Once I received my diagnosis, I was transferred to a new hospital, so I could be treated by the best Myeloma specialist around – Dr. Roger Strair out of Robert Wood Johnson Hospital in New Brunswick. I woke up in a different hospital than the one I had been admitted to, and was now in the intensive care unit.  And when I woke up my husband had the unfortunate job of telling me – his 42-year-old wife– that she had cancer. An incurable, though we are assured treatable, cancer. 

What was even crazier was that many of our friends and family knew I had cancer before I did. I understand why this was but I am not a quiet person by nature – so when I realized that I had lost my voice for almost a week  and that people – even people I loved – knew my diagnosis before I did, I realized I needed to take back my voice.  I sent an email sharing my story, my way – and began regularly communicating through email – and eventually starting writing a blog.  And I would sign these messages and blogs with the hashtag, #gameon.

#GAMEON – the name of our team today – was intended to reflect my approach towards my diagnosis. That I was ready, willing and able to accept this challenge and get this done!   I am so happy to say that this attitude – in addition to a kick-ass medical team, including my nurse,  Tracy, who is here tonight – has made all the difference.

Before even leaving the hospital I received my first chemo treatment, thus beginning what the doctor told my husband was going to be a “hellish 6 months”.  I was told I would have to endure four months of induction chemo treatment, all in preparation for a stem cell transplant.  Because I am a classic overachiever, I completed the induction therapy in three months, bringing my numbers all into normal range.   Despite a bone marrow biopsy that initially showed anywhere from 75 to 90% “bad” cancer cells in my marrow at the time of diagnosis, I was all clear on my biopsy three months later.  I then had a stem cell transplant exactly four months to the day after my initial diagnosis.  The stem cell transplant was difficult – I was away from my family again for over two weeks, I had major side effects including the loss of my hair.  But like any one of us fighting this evil disease, I did whatever it took to be healthy and stay healthy. 

And I THRILLED to share that I am have achieved a Stringent Complete Response – the A+ of responses to Myeloma, which the overachiever in me is quite proud of! J

It goes without saying that a cancer diagnosis changes your life completely.  What you worry about, what you focus on – it all changes in an instant….and every day that follows.  What I have learned these last two years is that life is unexpected in both the best and worst ways and will take you places you never expected to go. Many of us who receive a cancer diagnosis realize that, just when we think we have it all figured out, life has a way of reminding us that we are not in charge.  

Two years ago I thought I had everything figured out.  I had an identity – I was a full-time working wife mom.  THAT was my THING. I worked long hours for a company I love – Johnson & Johnson – doing work that I loved. I never, EVER would I have expected exactly 2 years later to be standing on the stage, talking to you about cancer. And certainly not my cancer. 

But here I am today, talking to you about cancer ….MY cancer.

Back then I was the helper. I was the one always saying yes, rallying the troops in support of others.  But when I got sick we had to be the ones to accept help.

 It’s cliche to say that it takes a village but there are reasons why cliches are true. From literally the very first day I got sick until today we have been overwhelmed with love and support.  Today we have over 90 friends and family with us, and that doesn’t include the ones who couldn’t be here today but wanted to be. I know that you all understand how hard it is sometimes to accept that help – but also that we must do just that.

I now know that our family – which I had felt was strong before – is even stronger as a result.  My husband and I came to realize – at pretty young ages – how true those vows of “in sickness and health” are.   Our kids have learned a resiliency that very little else could have taught them. We have learned to face tough situations with humor, like when my then-5-year-old told me she wanted to brush my bald head. What else can you do but laugh about THAT?  I have a hairstyle now I wouldn’t have predicted all those years  when I was paying a fortune to have my hair straightened!  I am so grateful for the unconditional love and support of our family and friends but especially my husband, Brian, our children and both of our families – who are here with us today. 

I realize now that maybe, just maybe, this is what I was meant to do.  Raise money, raise awareness, raise the profile of Multiple Myeloma because I’m surely not the type of person who traditionally gets this disease. Just a few weeks after I got sick my sister’s friend’s daughter had symptoms her doctor was having difficulty understanding. They had run a number of tests with no success and my sister told her “that sounds a lot like what happened to my sister”. They tested for Multiple Myeloma, which she was unfortunately diagnosed with and is still battling. I hate that we have this in common but grateful that understanding symptoms like ours could happen to people like us might have helped her be diagnosed more quickly.

When I think back to the information I read those first few days about Multiple Myeloma I am so grateful that it is outdated – that life expectancies are now double and triple what they used to be.  I am grateful every day that science is on our side – each day I am amazed by reports of new and amazing innovations in treatment for Myeloma and other types of blood cancers.  We must fight this fight with all that we have. And this work becomes easier when people support the cause. When people come together in big and small ways to help to raise money and awareness for cancers.  On behalf of me and all others fighting blood cancers – or any cancers – THANK YOU!   

GAME ON!

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5 thoughts on “What an honor it is to be honored

  1. It sounds like a very special event and it’s great that you decided to ‘use your own words’. Congrats on raising money and consciousness for and about the people and their families who are living with Multiple Myeloma.

    Like

  2. Pingback: Talking to our kids about cancer | multiple myeloma mom

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