Positivity and Perspective

Living with cancer is hard to describe. In the beginning, it was ALL I could think about – there was no way to escape it, whether it was how I was physically feeling or getting emotional about the possibility of leaving my husband and kids forever. I wouldn’t have believed it if someone told me back then but that does actually get better. I used to think about having cancer every hour of every day – now it’s there, in the background but no longer the permanent fixture in my mind it once was.

These days I (mostly) manage the side effects from my treatment and tend to have more good days than bad, both physically and mentally. This makes it easier for me to think beyond my next set of test results.

And sometimes I can find some silver linings amid my cancer battle. This past weekend was an example of one. We participated in our local Leukemia & Lymphoma Society’s Light the Night walk.  If you’ve never been, this event is truly amazing.  And we were so grateful to have so many friends, both new and old, join us and walk by our side. It’s during times like those that I feel overwhelming gratitude and appreciation for the good my cancer has shown us.

It probably goes without saying though that there are days when having cancer really, REALLY sucks.  When I feel really crappy from my medicine, when I can’t shake a fear of dying far too early or when I hear heartbreaking news about how others, with my same cancer, are struggling more than they ever should be.

If you’re like me, when you first receive a cancer diagnosis, you want to devour as much information as possible.  Google can be great for many things (inspiring quotes or funny memes) and sometimes a little scary when you type in like five letters and it knows exactly what you’re looking for (how DO they do that??).

But it can also be a dangerous place when you’re craving information about an incurable cancer you’ve been diagnosed with….AND when the data about your condition is wildly outdated.

As a result, I have joined several online support groups for patients with Myeloma. I don’t generally post too often in these groups; I’m more of a silent post stalker. But they can be a good resource for information on new advances in Myeloma, as well as how others respond to treatments or how they manage side effects.

As time goes by, you begin to recognize names and follow the stories of others.  Sometimes this can be uplifting.  You see how a new medicine may turn things around for someone who seemed to have lost hope.  You can educate yourself about how to control your symptoms in a holistic way.  And you can be inspired every single day by the strength of those who are in your same (cancer) shoes.

The downside, however, is that…you begin to recognize the names and follow the stories of others.  You become invested in how they are doing and, when things aren’t going well, it can be terrifying.

And this past week it’s caught up with me.  The all too many posts from people who are having a very different experience than I am having for many, MANY reasons.  This reinforces for me, time and again, how fortunate I am and how important it is to keep things in perspective.

There is the story of a family in the UK where a young husband and father of four has Myeloma.  He has not responded well to his treatment and it’s been a constant struggle for them.  Last week they didn’t have enough food to feed their entire family of six and had to decide who would eat.  Like many parents, it was their children who got the food – although what cancer patient should have to make this decision?  One of their daughters celebrated a birthday recently and they didn’t have enough to buy her the presents they desperately wanted to give to her.

This reminds me how lucky we are to have a pantry and refrigerator full of food every single day. How appreciative I am that money isn’t a major factor in our everyday lives, let alone in my fight against this cancer.  That I have never had to make a decision about my health based on whether or not I could AFFORD doctors, medicine…let alone FOOD.

There is the story of a Myeloma patient in South Africa who was trying to raise money to get to the US for a last-ditch treatment (approximately $40,000 USD) because she does not have access to the best treatments or a Myeloma specialist in her country. She has now learned she is eligible for the revolutionary CAR-T cell therapy – but through a trial in China.  All of this because the right medicines and specialist either aren’t available – or are unaffordable – in her home country.

Last week I had an appointment with my amazing myeloma specialist, Dr. Roger Strair. It was an incredibly busy day at the cancer center and my husband and I waited for over an hour. When the doctor came in, he apologized profusely, explaining there had been an emergency with another patient.

Now I am not generally what one would describe as a patient person.  However, that day I felt so much gratitude because I know I am being cared for by a specialist and medical team who are top notch.  There are so many patients who would give just about anything to have access to an oncologist who specializes in blood cancers, let alone Myeloma specifically. Waiting was the least of my concerns.   

And then there is the story of a woman about my age, whom I never had the chance to meet but now consider a friend.  She was diagnosed shortly after me, and in some ways, was diagnosed because of me. She is a friend of my sister’s friend.  A few weeks after my own Myeloma diagnosis, she was suffering from symptoms that sounded eerily like mine.  My sister gently suggested they consider testing her for Myeloma – and it was.

While she and I may be on this journey with the same timing, we have had very different experiences. She has faced one hit after another though she has ALWAYS had the MOST positive attitude.  She had two stem cell transplants, has been on many treatment regimens, has lost her hair multiple times and has been in an extraordinary amount of pain, most of the time due to the various tumors that have developed – all in the same three years as me. Her Myeloma is very aggressive and the cancer is spreading with an intense fury.  She now has a tumor in her eye, which has robbed her of her vision, and additional tumors that have developed on her head. She will be entering hospice now where she will spend her final days.

This reminds me how lucky I am to have had such a positive response to my treatments.  Compared to so many others, I have manageable side effects, manageable pain and my prognosis has remained optimistic. 

So, I can’t help thinking – why her and not me?  Why I am blessed enough to have responded so well to the very same medicines that didn’t even scratch the surface for her? It reminds me I absolutely MUST take my own health very seriously and not take anything for granted.  I must show appreciation for this gift of time and health – and make every day count. 

There are some days I ask myself if I should leave these groups.  It can be depressing to see posts about people who have lost their fight and this can put me in a funk for days, especially the time when another mom, an outspoken advocate and also in remission, died from a bout with pneumonia – something I can get two or three times a year.

But there are also many people who provide hope and inspiration.  A mom, just slightly older than me, with a child, just slightly older than mine.  She was diagnosed about five years ago and continues to fight her ass off.  This year she will celebrate her 50^th birthday and she is using that milestone to create awareness of and raise funds for Myeloma.  She is insanely positive despite the pain she is in daily.  She is a reminder that we all have the option to fight with dignity, kindness and humor. There are many who are fighting to make sure that Myeloma gets the attention it needs to fund research and find a cure. These are the reasons I stick around.

Having cancer SUCKS.  It changes your life in more ways than you can ever imagine.  I see everything now through cancer-colored glasses.  It affects how I look at my marriage and my children.  It impacts when and how often I leave my house for fear of being around germs. It has taught me to say yes to the things I want to do – and no to those things that will not bring me happiness.

It has given me a perspective that I think little else would have.  It has made me an accidental spokesperson and fundraiser for a disease I didn’t even know existed before my diagnosis with it.  It has changed the path of my life in so many ways.

During our lives we will each likely have some struggle, some burden that will shift everything; that may split our lives into “before” and “after”. It may be divorce, the loss of a child or parent, a health crisis, the loss of a job or a home. Something that will cause you to see things differently, will alter how you look at the world.

We each have the choice about whether or not we find the positive in those situations. It’s so much easier to get bitter and angry or to blame the world for the bad things that happen to you. It takes so much more effort, strength and determination to find some sliver of good.  And make no mistake, some days that will feel nearly impossible to do.

I’m not suggesting that being positive will save you.  There are many positive people who have really crappy things happen to them.  And while I believe a positive attitude has helped me during this time it’s not the only thing.  So many people who lose their battle with cancer are positive – and they still die.  There is a lot to be said for a kick-ass medical team, incredible people around you and plain old luck.

But I believe that – for me – being negative would only make this worse.  I was told at diagnosis that Myeloma is “incurable but highly treatable”.  I personally HAVE to focus on the “highly treatable” versus “incurable”; it makes a big difference in how I  deal with this.

Every day we hear news that reinforces the world is a scary, SCARY place.  Whether it’s a natural disaster, like a hurricane, or a man-made disaster, like a mass shooting, there is just so much heartache.  But we have the choice about how we react and what we learn. How we look at the world and find a way to make a positive impact. How to use these challenges to find perspective.

One small thing we can each do differently?  Let’s try and stop complaining ALL. THE. TIME.  A little bit is human and, trust me, I do my fair share.  But this constant grumbling – whether it is in person or online – is a choice. There is always something to be positive about and someone who has it better – and WORSE – than you. Never forget that the things so many of us take for granted, someone else is praying for.

Until next time, #gameon

 

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Chronic + cured = controversial?

If you’ve been following my blog, you likely know my story pretty well.  Here it is in a nutshell, if you’re new here.

At age 42 I was dropped off at the ER by my husband and three young kids (then ages 4, 6 and 7) with an eye infection. No one was more surprised than me when I was admitted because I was highly anemic and had elevated – and rapidly climbing – calcium levels.  Within 48 hours I was unconscious, on a breathing tube, a feeding tube and had had dialysis twice.  Simply put, I was in BAD shape.  These past nearly three years have been a whirlwind.  I had a Stem Cell Transplant in February 2015, lost my hair, got my zero (aka negative M-spike), LOST my zero, left my career and got back – and am now maintaining – my beloved zero, which means I have achieved something called a Stringent Complete Response.

When an oncologist walked into my room that October morning, he told me I had a type of cancer called Multiple Myeloma.  It was scary enough to have an oncologist at 42 years old and to hear him tell me I had cancer, let alone a type of cancer we had never heard of before.

On top of that, one of the first things he said to me was “Multiple Myeloma is incurable but highly treatable”.  He also told me if I had been diagnosed five, even 10 years earlier we would be having a very different conversation in terms of treatment and overall survival.  When you hear something like this, you crave information.  I made the critical error of googling Myeloma and immediately regretted it.  The good news is much of what is online (then and now) tends to be outdated and doesn’t reflect the many recent innovative treatments and advances in Myeloma care.

And there have been a LOT of advances in the management of Multiple Myeloma.  There was a remarkable 15-day period in late 2015, where not one, not two but THREE Myeloma drugs were approved by the FDA.  Additionally, there are many other drugs in the pipeline and hundreds of clinical trials underway.  There is also incredibly promising work being done in the area of immunotherapy, which appears to be a game-changer especially helping patients who were running out of options.

That said, my doctor – an expert in Myeloma – told me himself this disease (currently) has NO cure.  Admittedly, the five-year survival rate for people with Myeloma has steadily increased over the last decade, a reflection of all this progress.  Additionally, these survival rates are statistics and don’t tell everyone’s story – and I hope not my story.  I was young at diagnosis and otherwise healthy and my response to treatment, while not without its challenges, has made me able to live with this cancer every day.

This past April, Lou Brock, a baseball Hall of Famer who played with the St. Louis Cardinals, was also diagnosed with Multiple Myeloma.  Anytime a celebrity is diagnosed with the same disease you have, you hope it will raise awareness and educate others who, like you, had known little about this disease.

In the case of Brock, just a few months later it was announced he is “cancer free”, a statement which should make the average person happy, especially fellow Myeloma warriors. But it has also served to shine a light on an ongoing debate about how to characterize this disease, its treatment, and its prognosis.

Because of that, I have been reflecting a lot about why this is important, why this language seems controversial.  Brock said he was “cancer free” not that he was cured, yet I have seen a pretty strong reaction to this language in the Myeloma community, many who have a fierce and intense response to the use of words like “cured” and “chronic” when talking about Multiple Myeloma.

As someone living with Myeloma, I desperately want to increase understanding about this disease.  Many people chose to be private with their cancer battles, yet I am VERY public.  At 42 years old, I did not – and do not – fit the profile of your “typical” Myeloma patient. As such, I feel I have a responsibility to educate people about this and how I live with it every day.

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 likely other reasons, Myeloma so commonly gets 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 were bringing home germs. Never once had I considered the possibility that I had cancer. I was young and healthy – I assumed getting sick and being a little rundown was part and parcel with being a full-time working wife and mom of three!

But early diagnosis is important with any illness, including Myeloma.  Knowledge is power and each time someone is diagnosed, particularly someone with any type of high-profile status, there is an opportunity to raise awareness and potentially funds to find a true cure.  As someone who herself needs that cure, of course I want this. There are some who believe saying someone is cured belittles the suffering that many patients are dealing with every day, or dishonors the memory of those who are no longer here to fight anymore.

And I understand all of this. I want that cure. I NEED that cure. I wish I had the type of cancer you can cut out, radiate or even proactively prevent. I wish I didn’t have this shrewd and sneaky cancer, that is always working to outsmart the treatment being thrown at it.  The type of cancer always lurking beneath the surface.  But I do not.  What I have is this cancer, this “incurable but treatable” cancer.  And for my own sanity I choose to focus on the “treatable” part, NOT the incurable part.

THIS gives me hope.  It allows me to think I will be there for my kids’ high school graduations. This mindset helps me trust my husband and I will celebrate our 20^th wedding anniversary, even our 30^th or 40^th.  This keeps me calm when there is a blip in my test results from one month to the next.  Because I work hard (some days more successfully than others…) to maintain the mind frame of a person living with a chronic illness, I don’t freak out.  Please understand I am not minimizing how INCREDIBLY difficult it is to live with any chronic illness but doing this provides me with a sense of perspective I might not have if I was always thinking of myself having ….duh, duh, duh….an incurable cancer (!). This outlook helps me see these challenges as bumps in the road, but doesn’t mean the road is coming to an end.

I respect and ache for those for whom this disease is robbing them or their loved ones of their strength, hope and health. It has tried to do it to me.  Without question it has changed all of our lives. And I don’t want anyone to feel the their struggles are being overlooked.

But each person and their families experience this in different ways, both good AND bad. But it is also important to realize some of us NEED to hold on to the idea this disease can be managed. Who NEED to have faith that science is on our side.  I also realize that sure, it’s easier to be positive when you’re in remission.  But I also say being positive is part of what is keeping me in remission (along with good old luck, a kick-ass medical team and wonderful village of family and friends supporting us).  It’s also true there are sadly many positive people who don’t have or didn’t have the same luxury of thinking this way.

The reality is cancer SUCKS.  Whether you’re the one fighting it or caring for a loved one who has it.  Whether your cancer is the kind you can cut out, radiate or even proactively prevent. Or if you have the kind that is incurable but (supposedly) treatable.  Cancer is also an individual sport as my dear friend, also living with cancer, often reminds me. Survival rates are just averages and don’t always reflect what any one of us individually is going through.  What works for me is a strong belief that I will live with this “chronic” disease, until that “cure” finally comes along.

Until then, #gameon

Career interrupted

My sister-in-law is awesome. After ten years of being part of my husband’s family, my brother-in-law (who I also adore) finally met someone who seemed to be “the one”. When they were dating and I was asked about her, I would always report how deliriously happy I was to finally have a sister-in-law, not only because she is a cool chick, a great mom but she is smart as hell. She has an amazing career, where she is kicking ass and taking names. I instantly loved this about her because, at the time, we had that in common.

Recently I was bragging about her to a girlfriend, admitting that while I’m crazy proud of her, I’m also a teeny, tiny bit jealous. When I hear about all the incredible things happening in her career, I find myself waxing nostalgic about my own career. Or rather my lack of a career now that mine is over, ending a little less than a year ago, when I left a job I loved and a company I was honored to call home for over 16 years.

My friend – who recently took some time off work herself and has been loving her days of leisure – however thought I was crazy. From her vantage point, what’s not to love about being home? It made me wonder…am I crazy? I love my family and I know that staying home with your kids is not something everyone can do. I left work for medical reasons so perhaps that changes my perspective about now being a stay-at-home mom. I didn’t make this decision; it was made for me. But no matter what the reason a woman leaves her career, I have to imagine there are many, like me, who miss it more than a little bit.

I am not the type of person who typically quits things. Well unless you count diets, so let’s not. But I’m a doer. I get things done. I’m the girl who jumped up on a couch, ala Tom Cruise, the first day of my sorority pledging to rally a group of girls I had never met before (an act I still get mocked for, 20-something years later). I am usually the one people look to in meetings or at volunteer events, expecting me to know what we should do next. Yes, I am that person (don’t hate me…I have many redeeming qualities also.)

I stick with things when they are hard, partly because I am not a quitter but also because I am also nosy as hell. I need to see how things turn out. I always finish a book even if it’s clearly a dud. I don’t walk out of the theater if the movie is obviously the latest Gigli. I stick with TV shows even when it appears they have jumped the shark (I’m talking to you, Scandal…).

But now I’ll never know what would have been. There are things I was a part of and I don’t get to see how they played out. I worked in Human Resources (insert groan here…) and despite the fact most people cried when they walked into a room and saw me sitting there, I still loved what I did. Not every day was a walk in the park but, by and large, I really enjoyed my work. In my job I had responsibility for helping to navigate the careers of our employees and developing strategies for our businesses. Now I don’t get to see what is happening to these incredibly talented people and someone else is executing my ideas.

My friend said I’m crazy to miss it but the truth is I do. I miss it a lot. I don’t necessarily miss the day-to-day aspects of being a full-time working wife and mom. Make no mistake – that sh*t is HARD. Granted I am still rushing around like crazy to keep our family of five (six if you include the dog) on track. I don’t miss the stress and aggravation of working 50+ hours a week while balancing homework, soccer, hockey, Girl Scouts, endless play dates…the list goes on and on. I don’t miss putting the kids to bed and then working for several more hours, because I may have left work “early” that day to get to one of the kids’ activities. I also know that when I was killing it at work, I felt like I was dropping the ball at home and vice versa – and that wasn’t making anyone happy.  And this new “work” wardrobe of cute athleisure wear? Now that, that I got used to FAST.

Now that I am home, I am able spend more time at my kids’ schools. I was the parent volunteer for one of our after-school clubs and on the last day the instructor gave me a special shout out to thank me for helping, explaining I could have been doing other things with my time, such as be at work, etc. My daughters almost broke their arms to raise their hands and share “My mommy doesn’t work” and “Nope, that’s not true. My mom doesn’t have a job!!”

And this is true. I no longer work outside my home. But this truth made me feel instantly smaller. I wanted to scream to this room full of elementary school-aged children “Damn it, people, I had a career I loved for 17 years! I was good at my job!”  (note to self: you really MUST stop worrying about what everyone thinks of you. These kids had a median age of SEVEN and last week I had to remind this same audience that we don’t pick our noses and wipe it on other people. Their level of interest in me and my lack of a job was ZILCH.) But inside I felt like everything I had done before had been reduced to nothing.

Being a mom is hard no matter how you do it – it was hard when I was working full-time and it’s hard now as a stay-at-home mom. I think no matter what path we take – sometimes it’s a choice and sometimes it’s a decision made for you – we may always wonder if the grass is greener.

Given the choice to be at home with my family or go back to work, I wouldn’t change a thing. With both options put before me, I would make the same decision EVERY. SINGLE. TIME. I know that, for our family – and for my health – being at home is absolutely the best thing for us all.  But I can’t change how I am hard-wired. I have always been ambitious, an over-achiever. I had a CAREER, not just a “job” and I wanted to advance in that career. And now it feels like I invested all this time reading an amazing book and someone ripped out the last page. I’ll never know how the story would have ended.

Given everything that has happened over these past two and half years, I am grateful that I am still here to tell my story.  I am grateful that I am strong enough, healthy enough to start a new chapter, with a fresh sheet of paper and I get to determine what happens next. I get to decide who I am if I’m not a full-time working wife and mom, a title I proudly clung to for nearly a decade.  I have come to realize I can still kick ass and take names, only now as a stay-at-home mom. I can live vicariously through my fantastic sister-in-law and happily and proudly cheer her – and every other working mom – on from a distance. I can still be a leader, an over-achiever – but on my own terms, on my own schedule. And I can do it all wearing yoga pants.

Until next time, #gameon….

If you want to make God laugh, tell him about your plans

There’s an expression:  If you want to make God laugh, tell him about your plans.   I thought of that a lot this weekend, as I laid in bed sick. Yes, again.

For weeks my family and I have been planning a trip to Vermont to ski.  Every Saturday and Sunday has been jam-packed with kids’ activities and we finally had a weekend with nothing to do.   We ski every year and we could finally go.  Well to be clear, THEY ski. I lodge (is that a verb?). We were traveling with friends and the dads and kids were going to hit the slopes and the moms were going to drink hot chocolate (or something a little stronger) by the fire at the lodge.  It was going to be a great few days.

And then…I starting coughing.  When you’re in my situation, living with Myeloma,  a cough is rarely just a cough.  A cough for me triggers a warning bell in my head.  It means a call to my nurse to ask for antibiotics, stat.  And unfortunately it almost always means I’ll be getting a one-way ticket to bed within 24 hours.

This cough was no exception.  I felt it coming but still powered through, rushing around to make sure our family (and dog) were ready for the 5+-hour trek to Vermont, as well as being away for three days.  As the day wore on, I started to feel worse but I had to keep going, as moms often have to do. By the time we picked up my husband at work, I happily handed the car keys over to him, plopped myself into the passenger seat and slept for the next two hours.  When we arrived at the hotel, I had just about enough energy to crawl to our room and climb into bed – where I stayed.  For the next 48 hours.

Around me, life went on. My husband got himself and three kids  bundled up to brave the elements of Vermont in March.  Our friends helped out by walking our dog and keeping the kids busy and distracted.  And I laid in bed with body aches, chills and a temperature of 102. Not quite the weekend I had envisioned.

There are so many days I feel good. I have energy and I can (almost) forget that I am living with cancer.  But then other days cancer seems to want to remind me who’s the boss – and it’s not me.  And cancer also has a sick sense of humor because it usually rears it’s UGLY head when I least want it to (not that there is ever a good time).  Call me a cynic, but it’s typically when our family is looking forward to something that the germs hit and I am out of commission.  Multiple Myeloma can affect people in many ways (hence the “multiple”). Some experience bone pain, kidney issues, extreme fatigue and neuropathy, just to name a few.

For me, the most difficult is my compromised immune system. I get sick.  A lot.  And when it starts to come on, it quickly hits me like a ton of bricks. I can go from a slight cough to full-on pneumonia within 24 hours.  And that’s the problem.  There is no longer a “common cold” for me anymore – it almost always turns into pneumonia. And pneumonia is no joke. According to the CDC, last  year alone over 50,000 people died from pneumonia. It was initially pneumonia that put my dad in the hospital – and he never came home.  And especially concerning for me is knowing that the most common cause of death related to multiple myeloma is infection, with pneumonia being the most common fatal infection.

I have watched as several people with Myeloma – who are also in remission like me – have died from pneumonia.  I know I am prone to the dramatics but I am being 100 % serious when I say that every single time I get sick, I am terrified.  The idea that seemingly healthy people die from something I get a few times a year scares the CRAP out of me.  And being sick provides me hours upon hours to lay in bed and worry about this very thing.

Being sick this week, being sick in general…none of this was part of the PLAN. The PLAN was for me to keep working at a job I loved, for a company I loved, progressing my career.  I would show the world that woman COULD have it all – a great career, happy & well-adjusted children and a marriage marked by laugther and love.

The PLAN was to have my kids live a “normal” life – to not have to get used to seeing Mommy in bed so damn often.  To have a mom who only missed their events because she couldn’t clone herself to be in three places at once to support her three amazing kids, NOT because she was getting sick, being sick or recovering from being sick.

The PLAN was not for my husband to be a caregiver at such a young age.  You take vows and you mean them – every single word.  You just don’t plan to make good on “in sickness and in health” within the first 10 years, when you’re in your early 40s.  You don’t plan for your husband to have to oftentimes act like a single parent because you can’t lift your head off the pillow, knowing that in the deepest, darkest recesses of his brain he is wondering how he would ever do this if he had to permanently.

No one PLANS to get sick, and certainly not with cancer.  No one plans for many of the crappy things that life puts in our path.  If you’re familar with Sheryl Sandberg (COO of Facebook), you may remember that her husband died suddenly and unexpectedly while they were on vaction, at the age of just 47.  She has written about the raw pain she felt as she grieved, talking about how the rug can be pulled out from underneath any of us without warning and how life as we know it can change in an instant. This happened for me the day I learned I had cancer – an incurable cancer at that.  This happened for me the day I got the call that my father had died, also suddenly and unexpectedly.

There is so much that is poignant and heart-wrenching in what she has written…and so much that hit home for me.  But the line that struck me the most was when Sheryl talked about her husband not being there for a father-child activity. A friend suggested another plan and she resisted, saying she wanted her husband…she wanted Option A.  Her friend told her “Option A is not available. So let’s just kick the shit out of option B.”

I have since loved this quote – it’s a great way to remind us that life doesn’t always go as planned.  No one is immune to difficult times.  Each of us will face our fair share of adversity – losing a job, ending a marriage or having a child with challenges.  It could be financial setbacks, illnesses or abuse.  Or sometimes life just pisses you off in big and small ways.  Our true character is revealed by how we face these disappointments, these changes of plans if you will, and are able to find our strength, our ability to love and laugh through it all and the determination to kick the shit out of Option B.

Those of you who know me well, through real life or by following this blog, know that I am a pretty positive person. I search for the silver linings many of our experiences, because I truly believe you can find them (granted, sometimes we have to look harder than others…).  While being stuck in bed and missing this trip certainly wasn’t part of the plan, I am grateful that I got sick when I did. It meant that we didn’t have to cancel our trip and, even if I couldn’t enjoy it, my husband and kids didn’t have to miss having fun (trust me, we have had to cancel many plans over these last few years because of my crappy immune system!).  I felt an instant bond with our friends, who we had never traveled with before (and who, after this, may never travel with us again!). They were incredribly supportive and helpful, even hanging out in our room when I had the strength to sit up in bed, when there were probably many more exciting things to be doing.  I can’t thank them enough for being so amazing. And my husband was a rock star as usual, keeping the kids happy, keeping the room (mostly) clean and keeping me from having to worry.

The good news is that I am feeling better now.  Hopefully this bout with pneumonia is behind me, and all the fear it brings with it.  And as always, it served as as a good reminder that life doesn’t always go according to plan, and that is actually okay. Option B isn’t quite what I thought my life would look like like,  but I realize I am pretty damn lucky to be here.  And I will continue working every day to stay positive, stay healthy and kick the shit out of Option B.

Until next time,#gameon….

 

 

World Cancer Day…and a ponytail rant

This is the third year I am writing about World Cancer Day, as someone WITH cancer. World Cancer Day is recognized today, February 4th, as a day to raise awareness of the currently 8.2 million people who die from cancer worldwide every year. Out of those, 4 four million people die prematurely, between the ages of 30 and 69 years old.  The goal of World Cancer Day is to “get as many people as possible around the globe to talk about cancer” on this day.  To that I say, #GAMEON.

This time two years ago I was preparing for a Stem Cell Transplant, which was going to rob me of my immune system – and my hair – but also what my doctors (and many in the Myeloma community) believe was my best chance at achieving and maintaining remission. Here I am, two years later and I have enjoyed many successes in this fight.

I am in remission.

I have gotten ELEVEN consecutive “zeros” (aka negative M spikes).

But the biggest news for me (well today at least). Last night?  I.  MADE. A. PONYTAIL. 

Allow me to digress for just a minute by saying that I HEART PONYTAILS.  Before I stopped working, when I was a full-time working mom, ponytails were a lifesaver. I took for granted my ability to throw my hair into a sloppy ponytail or bun as I jetted off to work each morning or to one of the kid’s many activities.  I never imagined that I would find myself having to MISS a ponytail.

Life with cancer has changed for me in many ways and this is just one example. Some may read this and think it’s a trivial and frivolous example. But I’m guessing anyone who thinks that probably hasn’t been in my shoes, or the shoes of those of us who have lost our hair.  Cancer has been tough in many, MANY ways.  And believe it or not, I would put losing my hair towards the top of that list.

Sorry…back to World Cancer Day.

What is interesting to me is that last year my Facebook feed was FLOODED with posts about World Cancer Day.  People posting on social media as a key way to get people thinking about and talking about cancer, to raise awareness of this dreadful disease. This year?  My Facebook feed is filled all day, EVERY DAY, with hateful – and often contradictory – political updates.  I just took a quick scan – there were THREE posts about World Cancer Day on my feed today.  I think – actually I KNOW – we can do better.

There are many ways to get involved both today and beyond.  I put forward a challenge last year, asking us to do more than click a “like” button on Facebook.  I know many local kids (including my own) who are “braving the shave” again this year for the amazing St. Baldrick’s Organization.  Any donation amount, big or small, is always greatly appreciated. Perhaps you can call a loved one who is a survivor – or the family member of someone who has lost their fight   Or it could be as simple as stopping for a minute and putting KINDNESS out into the world because, if cancer teaches us anything, it’s that life is short.  Perhaps instead of treating our friends and family with contempt we could try to give one another the benefit of the doubt.  Try assuming that we ALL want what is best for our families, our communities and our country even if we don’t necessarily agree on the best ways – or person – to do that.

While World Cancer Day is a great day to put an EXTRA emphasis on those who have fought or are fighting this beast, we can all agree more can be done.  The World Cancer Day website  has some great suggestions but really it’s about doing what will resonate for YOU.  Donate your money or time, make a meal for someone who is sick. Better yet, just call, text or email someone you know is in the throes of this fight. It can make a world of difference.

Until next time, #gameon

 

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Some staggering statistics:

• There were an estimated 14.1 million cancer cases around the world in 2012, of these 7.4 million cases were in men and 6.7 million in women. This number is expected to increase to 24 million by 2035.
• Lung cancer was the most common cancer worldwide contributing 13% of the total number of new cases diagnosed in 2012.
• Breast cancer (women only) was the second most common cancer with nearly 1.7 million new cases in 2012.
• Colorectal cancer was the third most common cancer with nearly 1.4 million new cases in 2012.
• In 2016, an estimated 1,685,210 new cases of cancer were diagnosed in the United States and 595,690 people were projected to die from the disease.
• The most common cancers in 2016 were a
• breast cancer, lung and bronchus cancer, prostate cancer, colon and rectum cancer, bladder cancer, melanoma of the skin, non-Hodgkin lymphoma, thyroid cancer, kidney and renal pelvis cancer, leukemia, endometrial cancer, and pancreatic cancer.
• The number of new cases of cancer (cancer incidence) is 454.8 per 100,000 men and women per year (based on 2008-2012 cases).
• The number of cancer deaths (cancer mortality) is 171.2 per 100,000 men and women per year (based on 2008-2012 deaths).
• Cancer mortality is higher among men than women (207.9 per 100,000 men and 145.4 per 100,000 women). It is highest in African American men (261.5 per 100,000) and lowest in Asian/Pacific Islander women (91.2 per 100,000). (Based on 2008-2012 deaths.)
• The number of people living beyond a cancer diagnosis reached nearly 14.5 million in 2014 and is expected to rise to almost 19 million by 2024.
• Approximately 39.6 percent of men and women will be diagnosed with cancer at some point during their lifetimes (based on 2010-2012 data).
• National expenditures for cancer care in the United States totaled nearly $125 billion in 2010 and could reach $156 billion in 2020.

 

Who am I now?…

It was just over two years ago that I wrote my very first blog, sharing how my cancer journey started. Strangely it feels both longer and shorter than two years.  So much has happened during that time.  I have been sick and healthy…and sick and healthy again.  I have been in the hospital, for a total of nearly 50 days.   I have lost – and finally regrown – my hair.  And most importantly, I have achieved REMISSION.  I am giving this battle everything I have, but it has not been without its share of bumps in the road and hard choices.

And one of the hardest of those choices was when, six months ago, I made the heart-wrenching decision to heed the advice of my medical team and take time off of work to focus on myself and my health. This was so incredibly difficult for me because my career has always been a big part of my identity. It was at the core of who I am, like many women. I had always described myself as a full-time working wife and mom. THAT is who I am…or was.

But here’s the thing…it wasn’t working.  I wasn’t prioritizing my health and I was getting sick. A LOT.  In the year I was back at work, I was in the hospital THREE times.  I was working at a highly-demanding job that I loved but still required a lot of me.  I was always eager to do more and, as a result, was often asked to take on more responsibility. As I’ve written about before, I am a chronic people pleaser so I had difficulty saying no, often finding myself working longer hours than I should, toiling away during my treatment appointments and generally not adjusting my approach to work despite my diagnosis.  It was like I wanted to pretend I didn’t have cancer – and that I could still do it all.

For the average person, stress is bad. But for a myeloma patient like me it is really, REALLY bad. According to the International Myeloma Foundation, “Stress can be a very destructive force when it comes to myeloma. Stress really disrupts the immune system and myeloma is a cancer of the immune system.”  Research shows that stress can absolutely have an impact on many areas of our health, including and especially that of cancer patients. Simply put, when I was working, my commitment to my health was not working.

And now this decision is permanent – I will not be going back to work.  I have been avoiding writing about this for weeks now, mostly because I haven’t really known what I wanted to say. And I’m sure in large part because I am in denial but also because I have been trying to figure out who I am now if I’m not a full-time working wife and mom?

The irony of all of this is that I am the healthiest I’ve been since my diagnosis but I believe – and the doctors believe – it is exactly because I am NOT working that I am doing so well. I tried for a year to balance my career, my family and my health – but something had to give.  These past few months of staying home have shown that I can achieve – and  most importantly MAINTAIN – remission when I give it 100% of my effort.

What I have now realized is that I still have a job – it is to be and stay healthy. Recently I was asked by a friend what I do for “self-care”. I considered answering by saying “I shower…most days” but figured she probably meant more than just BATHING MYSELF.  And it struck me that I hadn’t really been doing any self-care.  Of course I am under the care of a doctor as I am still in active treatment for my Multiple Myeloma, taking pills at home and going for treatment two out of every six weeks.  But what else had I been doing besides cracking open my Days of the Week pill case each night and going to these required appointments?  I had to admit the answer was very little.

So I have started to do more for ME.  I am taking yoga classes, getting acupressure once a week, eating healthier and moving more (my new goal:  12,000 steps each day!)  This is what helps me but self-care means different things to each of us. It could be a walk in the park, a phone call to a friend you haven’t spoken to in ages or writing in a journal (and for some of us it might be avoiding political posts on Facebook for a while to keep our sanity).  The idea is to take time for YOU, which many of us seldom do especially women, and in my experience, NEVER moms.  We are always so focused on our work, our spouses, our children that we are usually at the bottom of our own To Do list. But I have realized that taking care of myself isn’t just a nice thing to do every once in a while- it is actually critical to my health.

When I first left work someone told me I was “lucky”.  I’m not sure that I would describe being diagnosed at 42 years old with a cancer that currently has no cure as “lucky”.  I  can only assume this person meant that I was lucky to be able to spend more time with my family, which I agree is pretty amazing. But I didn’t win the lottery or take early retirement – this is happening because I have a medical condition serious enough to justify me leaving work before my 45th birthday.

And while I do feel lucky to be with my husband and kids more NOW, I am playing the long game here. I want to be around to celebrate my 30th wedding anniversary. To half-heartedly complain with other parents about my baby going to high school at my first – and last – high school orientation meeting.  Call me greedy but I’d even like to meet my grandchildren someday.

None of this changes the fact that I still miss doing work I love and making a difference. That I still wish there were days I had to get dressed up for work (though I must admit yoga pants are quite comfy, even if not a legitimate fashion choice….).  That I don’t long just a teeny bit for those days when I was worrying about balancing it all.

That said, I have seen others in situations like mine have regrets.  Who, like me, received a cancer diagnosis but didn’t truly change their lives.  Our friend who had pancreatic cancer worked the full nine months from her diagnosis until her death without stopping. She was brave and dedicated and I hope I fight with half the grace she showed. But I also learned from her that life is short so something had to change for me and our family.

Here’s the good news, in case anyone was worried. I am still a highly imperfect mom. Some days I kill it.  For example, last week the weather was beautiful.  The kids happily played outside for hours (no devices), I pre-cut veggies they noshed on for snack (no cheese doodles or Oreos) and bedtime was a breeze, filled with much snuggling and even a few books.  And…I didn’t yell ONCE. All day. Yeah, that’s right. ALL. DAMN. DAY.

And then…there was the next day.  My daughter got off the bus crying over some perceived kindergarten slight.  The veggies were all gone so they broke into the snack drawer almost immediately (hey, Oreos can be quite soothing when someone didn’t share their crayons with you!)   They reached for devices almost the minute homework was over (probably before if I’m being honest but even I have some rules!).  And that yelling streak?  Lasted just that one day. Oh, and my older daughter informed me that “Daddy is the nice one”.  Yup, some days I kill it. Other times, the days try to kill me.

I miss my job, my friends at work, but more than anything I miss my life BEFORE I had cancer.  One of the hardest parts of all of this has actually been admitting that I couldn’t – or perhaps shouldn’t  – do it all.  It’s the kind of admission a Type A, people-pleasing workaholic like me NEVER considered making.

Some days I still feel a little guilty about being home, thinking I’m being “selfish” by taking care of myself.  However one important lesson I’ve learned, if only very recently, is to stop thinking of it as being “selfish”, because a commitment to myself and my health is the best bet I have for ensuring I am here for a long, long time.

When I look in the mirror and wonder “who am I now?” I can no longer proudly call myself a “full-time working wife and mom”, a badge of honor I wore for a long time. I cannot gush about working at a company I loved for 17 years.  But then I remember that throughout our lives we all have many roles to play.  I will always be a wife, a mom, a daughter and daughter-in-law, a sister and sister-in-law.  And now I have other roles I never imagined. Without this diagnosis I would never have been able to say I am a published writer (and by someone other than myself!).   I can now add the label of successful fundraiser and cancer advocate, as I continue working to raise money for and awareness of Multiple Myeloma.  And I confident now that even though this door has sadly closed, other windows surely will open.

This isn’t the path I planned but I’m slowly learning that’s okay.  So maybe I am just the littlest bit lucky after all….

Until next time, #gameon

PS Click here to get some great ideas for self-care.

Does it EVER feel like enough time?

Last week we heard the horrible news that one of our neighbors had died suddenly from a brain aneurysm. She was in her late 50s or early 60s, with a husband and adult children.  We didn’t know this family well, having only met them one night at a local restaurant when my husband and I were on a date night. We enjoyed talking with them and they seemed like a really nice, happy couple with much to live for.

Any death is tragic, especially someone who is relatively young.  But what struck me about this situation was that this same woman, Eileen, had also had an aneurysm a little over a one year before.   Her health situation at that time, from what I am told, was very serious.  She was described to me as a fighter, pushing herself hard to recover and regain elements of her previous life.  We were not friends – in the traditional or Facebook way – however I found myself stalking her Facebook page, which showed me that she lived life to the fullest but also channeled this tragedy into an opportunity to raise awareness and funds for brain aneurysm research.

Like me, maybe you don’t know much about aneurysms, which are defined as “an excessive localized enlargement of an artery caused by weakness in the arterial wall. Aneurysms may remain silent or rupture, causing serious problems and even death”. Often an aneurysm can go undetected however, according to Medical News Today, around 30,000 brain aneurysms rupture annually, resulting in death in around 40% of cases, according to estimates by the US National Institutes of Health (NIH).  Feels a bit like a game of Russian Roulette, only you don’t know you’re playing.

My only other experience with aneurysms was when a woman I worked with briefly – a newlywed – had left the office for lunch one day, calling her husband to say she had a headache and was gone by the same time the next day. Then, like know, I couldn’t help but reflect on the precariousness of life when you can be going about your day, having something lurking in your body that can kill you in seconds – and you don’t even know it’s there.

As I was walking our dog by their house I wondered if her husband, now a widow, felt angry or grateful.  One could argue that she had “extra” time given that, by all accounts, she could have died that first time and she didn’t. But the truth is that she was taken far too soon.  She had spent the months after her first brain bleed working hard to be well – and to do good.  What is the sense of it all?

Since my cancer diagnosis, I have tried really hard to live with an “attitude of gratitude”, grateful for each day that I am lucky enough to have.   Where I would previously bemoan getting older, now I celebrate each birthday as the gift it is.  I try to take mental snapshots of moments with my family, knowing they are a blessing we aren’t always guaranteed.  I know that when I went into the hospital two years ago, there was a concern I may not come home.  The fact that I am here, all these months later, fighting hard to stay in deep remission, is nothing short of miraculous (to us at least!).

That said, if something happened to me now, two years later, would my husband or children, my mom, my sister, my friends feel LUCKY to have gotten this extra time with me?  Or feel ROBBED that I was taken too soon?

Advances mean that many of us with Multiple Myeloma may have the benefit of living longer, with a greater quality of life.  A diagnosis of Myeloma used to mean certain death within a few years’ time.  My oncologist told me this point blank the first time we met.  Myeloma is (and can still be) SCARY. I shudder to think how frightened my mother-in-law felt when she pulled out her decades-old nursing books to learn more about the Myeloma her then-42-year-old daughter-in-law had been diagnosed with. SCA-RY. 

But scientific advances have been and continue to be remarkable.  Between 2004 and 2014 eight new drugs were introduced to treat Myeloma. Even more promising?  In 2015, FOUR new treatments were approved by the FDA. Science is on our side. 

“A multiple myeloma diagnosis used to mean that a patient could only expect to survive three to five years. Today, that landscape has changed so much that it’s almost unrecognizable. Multiple myeloma remains incurable, but it is becoming more manageable. Doctors are beginning to talk of it as a “chronic disease.” Some are becoming optimistic enough to say that a cure might be possible within a decade”.

–Cure magazine

But despite this, life is crazy and unpredictable and unfair sometimes.  People who don’t take care of themselves live to be in their 90s.  A dear friend who is one of the healthiest people I know has been dealing with still-undiagnosed health concerns.  There is no way to know what our paths will be – and how our story will end. All we can do is be a cliché – live each day to the fullest, laugh a lot and love HARD. 

The reality is we are all living on borrowed time and will never know what the next day will hold.

And no matter what happens, I’m not sure that any of us will ever feel that we – or a loved one – had enough time.  I think we are all understandably greedy and wish to get to that next milestone.  Our desire to make that next memory, see that next birthday, have one more day/week/month/year is insatiable. I also don’t think this is a bad thing as long as we appreciate the time we do get.

As I was reflecting on all of this, I stopped to ask my husband the question I had asked myself earlier.   After all that has happened these past few years, would he feel grateful for the time he had gotten with me or robbed because I was taken too soon?

His wise and perfect answer?  “Both”.

Until next time, #gameon….

Rest in Peace, Eileen.  In her memory, I’m sharing information on an organization that was important to her and is committing to shedding light on Brain Aneurysms, The Lisa Colagrossi Foundation. 

 

 

More to the Multiple Myeloma Mom than just Multiple Myeloma

In this blog, I usually talk about MY stuff, about life after my cancer diagnosis two years ago.  BC (before cancer), I had always dreamed of being a mommy blogger. I was a Journalism major in college but wound up following a different career path, working in Human Resources which I (mostly) love.  Besides, when I thought about blogging, I never really knew what I had to say – until I was told, at the age of 42, that I had an incurable, though treatable, cancer of the blood called Multiple Myeloma. That got me thinking  – and writing!

For the past 18 months or so I have been chronicling my journey with Myeloma, specifically how it has affected me and my family and proclaiming myself the “Multiple Myeloma Mom”. I decided the silver lining of my diagnosis was that I had finally found my writing inspiration. This was my opportunity to help others by making them laugh, cry or feel less alone.  However what I have realized lately is that I have been hiding another facet of my life as a mom – and this one has NOTHING to do with my cancer at all. Maybe “hiding” isn’t the right word because that implies intent to conceal. This blog has been all cancer, all the time but I have a venue to share something else significant that happened in our family – and perhaps help others again.

Last fall, my husband Brian and I went to our son Jake’s third grade parent teacher conference. Like all kids, Jake isn’t perfect but he is a GOOD kid – he’s sweet, kind, smart, social and we have always left his conferences feeling filled with pride.  But this time his teacher was concerned.  Jake has never liked reading (which kills me because I LOVE to read) but now it seemed as though he was falling behind his peers. A lot of that meeting is a blur to me but what I do remember is hearing words like “formal evaluations”, “possible dyslexia” and “child study team”.   A few weeks later we met with the child study team and formulated a plan that included those evaluations to get to the bottom of what was going on.  However as the meeting was coming to a close one of the teachers made what seemed like a throwaway comment – “When I’m in the classroom, it seems like Jake can never sit still.”

Um, WHAT????

Clearly the implication was that Jake had ADHD.  As a mom, I instantly felt a rush of emotions – fear, concern, defensiveness and guilt. How had I not noticed this – I’m his mom, for crying out loud!  My second reaction was “not my son”. Not that there’s anything wrong with it (ADHD that is) but he didn’t fit the mold. Well at least the mold I had in my head.

Like many of us, I will admit I had a (misinformed) vision of kids with ADHD.  That they are bouncing off the walls with crazy amounts of energy, running around all the time like little Tazmanian devils. And my son isn’t like that.  But here’s the biggest thing I’ve learned this past year – MY kid with ADHD doesn’t look like YOUR kid with ADHD. They are all individuals and they experience this in different ways.  The assumptions I made, the labels I had put on kids with ADHD didn’t fit because it doesn’t work that way; ADHD isn’t one size fits all.

Let’s stop for a minute because some of you might not know a lot about ADHD.  According to the National Institute of Mental Health (NIMH), “Attention-deficit/hyperactivity disorder (ADHD) is a brain disorder marked by an ongoing pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development.”  There are three types of ADHD: predominantly inattentive type, predominantly hyperactive-impulsive type or a combination of both.  A friend writes a great blog about her family’s experiences with ADHD so I’m stealing this from her, as I think it’s a simple way to understand:

ADHD is a bio-neurological disorder and classified as such in the DSM-V. It is a REAL medical condition in which the synapses in the brain misfire and where the brain has difficulty processing glucose. The brain in an ADHD person is therefore always looking for a dopamine fix. 

These are all very official-sounding definitions but here’s what is most important to know.  ADHD is a legitimate condition – kids can’t just “try harder” to “behave better”.This is a REAL medical disorder.

According to Wikipedia, “people with ADHD commonly experience shame and judgment by a misinformed public that mistakes its real, medical symptoms for bad behavior, poor parenting, or ‘just not trying hard enough.’ These feelings of failure and embarrassment can prevent people with ADHD from seeking an evaluation and treatment that could help their brains function more effectively.“

I had always believed that Jake was “just” a typical 6, 7, 8-year-old boy. When I would ask him to do three things and he did none of those and instead did three other random, unrelated things, I explained it away as “that’s how boys are”.   But once I started to read, talk to others and learn more about ADHD I knew, without a doubt, that they were describing my son.   While he didn’t display behaviors I had always associated with ADHD – he wasn’t constantly moving in big, “hyperactive” ways – I realized he was actually always moving but in really small ways, chewing on a straw or pulling on his shirt sleeves.

Jake supposedly has a “mild case” of ADHD but he has many characteristics that fit the bill.  He has historically had difficulty maintaining focus, both in school and in sports, sometimes had a hard time coping when things didn’t go as he wanted and he fidgeted…a lot.

According to Attitude Magazine “those with the condition don’t have a shortage of attention. They pay too much attention to everything. Most people with unmedicated ADHD have four or five things going on in their minds at once. The hallmark of the ADHD nervous system is not attention deficit, but inconsistent attention.”

Once I understood that he had ADHD, this meant we needed a plan. After many tears (mine) as well as a lot of research and discussion with experts (including our pediatrician and school counselors), the decision my husband and I made was to do a medicine trial for Jake. What does that mean?  We would give Jake one of the many great medicine options for treating ADHD and see how it affected him.

This was not an easy decision AT ALL.  I don’t want my child on medicine. I also don’t want my son to have a condition for which he NEEDS medicine. But he does have one – and we believed that the right choice for him -and our family – was to give the medicine a try and make a decision based on facts, evidence and our experiences, not out of fear or assumptions.

Let’s be clear – EVERYONE  has opinions on this topic. When we first mentioned Jake’s ADHD to friends, many suggested (with the best of intentions) that we do anything besides offer medicine. “Get him a trampoline” or “make him run around the house in the morning before school”.  By the way, these are all great ideas for a kid with ADHD.  But we did not believe that behavioral changes alone were going to be enough.

All medicines have potential side effects – and the medicines for ADHD are no exception.  Most often they include loss of appetite, trouble sleeping, and moodiness — and it may take some trial and error to find the right prescription and dosage for your child. That said, I don’t think drugs are the enemy. I work for a pharmaceutical company (Johnson & Johnson) that has countless people and financial resources dedicated to finding cures and treatments for patients. I myself take medicine that is LITERALLY keeping me alive.  So I started from the position that if medicine could help Jake, it had to be an option we considered.  A common pro-medication argument  that really resonated for us was “if you’re child had diabetes, would you deny them insulin?” Or “if your child had a problem with their vision, would let you get them glasses?”   We felt it was a lot to ask Jake to be more focused on his own. Based on what we knew about ADHD, we wanted Jake to have as few barriers as possible in reaching his potential – whatever that is supposed to be.

We started Jake on his medicine on a weekend and felt we noticed a difference – but the true test would come when he needed to concentrate at school, especially in subjects he didn’t like as much.  This is often how ADHD is caught – kids are able to mask it until the work gets harder and / or they become less interested.  So I held my breath to see how it would go. And literally the FIRST DAY, his teacher emailed me and said there was a DRASTIC difference in his behavior. He was a lot more focused, but still maintained “being Jake” – which was SO important to us.  And if I may brag for a moment, I will say that his evaluations all came back glowing, his test scores have improved, he is a completely different player on his travel hockey team than he was just six months ago.  And we have beamed with pride each time we have gotten unsolicited feedback from teachers or coaches that Jake has matured, that he helps others in class without being asked  – and this from teachers who had no idea he has been struggling with.

This all came full circle for us when a letter came home from school last week congratulating Jake for being named  one of the Students of the Marking Period in his new school.  We would have been super proud of him for this no matter what, but he was being recognized for having extraordinary student character, being a positive role model and displaying great work ethic. For any kid that’s great but for a kid with ADHD – it’s incredible!

As I said, I am crazy proud of our son so I started to recently wonder why I haven’t written about this before? I have shared some pretty intimate details in this blog, including my hair loss, side effects from chemo (namely “stomach issues”) and even some of the dark, dark thoughts that plague me on a regular basis. I have been an open book and I don’t regret it at all.  So why not this?  Was I embarrassed?

I have asked myself this question many times and I know that the answer is NO.  I love my son – no matter WHAT – and I am so deeply proud of him.

That said, despite an increase in ADHD diagnoses in recent years and some pretty famous people having it (such as Justin Timberlake, Will Smith, Terry Bradshaw, Michael Phelps and Simone Biles), there is still (sadly) a stigma associated with this condition.  I didn’t want Jake to be labeled in any way. But he can’t control his ADHD diagnosis any more than I can control my cancer diagnosis. And if someone judges Jake for having ADHD, that’s on them and not him.

I think I might also have hesitated because this really isn’t my story to tell – it’s Jake’s.  But I decided that, similar to sharing my journey with cancer, perhaps opening up about our situation and ultimate decision might help others.   I realize that our choice is individual to us – please know that I’m not writing to convince people to put their child on medicine. That is a very personal decision for each family and one I know is never taken lightly, no matter what side of this argument you land on.

ADHD doesn’t have to define Jake, anymore than my cancer diagnosis should define me. But while it doesn’t have to define us, it definitely is shaping who we are.  I hate that he and I have something like this in common. No, I don’t have ADHD but my body has also “betrayed” me. We both have something that we will be dealing with for the rest of our lives. And I’m so proud of the way that Jake has faced this head on and persevered.   Life is messy and parenting isn’t easy – whether it’s cancer, ADHD or the multitude of other challenges we each face as parents every day.  The good news is that it’s worth it.

#ADHDgameon

 

Talking to our kids about cancer

In my last blog, I wrote about the amazing experience I had recently speaking at my local Leukemia & Lymphoma Society’s (LLS) Light the Night walk, as an Honored Hero. We had never attended this event in the past so we didn’t know what to expect. Based on what I had read and heard, I imagined it would be emotional – and it was. As much as I would like to think that my speech was the highlight of the event, the reality is the true heroes are the survivors, those who are currently in remission from or living with blood cancers. The walk is truly about honoring  ALL those affected – survivors and their families, as well as those who sadly have lost their battle. During the walk, participants carry lanterns – a white lantern if you are a survivor, a red lantern if you are a loved one of a survivor and a gold lantern if you are walking in remembrance of someone we have lost.

Being part of the survivor ceremony was quite moving. To be part of a community of people who have been living with – or have beaten – cancer for anywhere from one year to 71 years (amazing, right??) was incredible.  To witness the In Remembrance ceremony was difficult – there were far, far too many names called and gold lanterns held up high. After the ceremonies were completed, our family started to walk.  As the three colors of lanterns sparkled in the dark of the night, our 6-year-old daughter held my hand and looked up at me.  She said “Mommy, do you know what my news will be on Monday at school?  I am going to say how happy I am that I didn’t have to carry a gold lantern”.

Um, WOW.  Tears immediately began to stream down my face. She is SIX. She was only four when this all started. I have always believed that she was the most unaffected by my diagnosis.  She was so young at the time and has always lived in her own little, tutu-loving world.

When I first got sick, I went to the Emergency Room and didn’t come back for two weeks. As such, we HAD to explain something to our children when I returned home.  I was still very weak and the kids had to be patient with me as I recovered. My husband and I had many discussions – between the two of us, with the school counselor and friends who had been in similar situations – about how to handle what would be happening to me, to all of us.  While I respect the decision of all families to handle their situation as they choose (there is no wrong way to do this) for us honesty was, in fact, the best policy.  I was released from the hospital on Halloween – much to my children’s delight – and we decided to let them enjoy that one last night before we told them.

The next day, my husband and I sat them down at our kitchen table, knowing we were going to chair their lives forever.  We explained to them that, when I went into the hospital, the doctors discovered that I had pneumonia, but also something called cancer. Our son – seven years old at the time – gasped.  “Mommy”, he said “that’s what Aunt Jayne had!” (Aunt Jayne was our dear, dear friend who, just weeks earlier, had lost her 9-month battle to pancreatic cancer).  We explained to them that many people get cancer and have very different outcomes. We proceeded to list the (too many) friends and family members who had successfully kicked cancer’s ass (my father-in-law, the grandparents of many friends, several neighbors, and the list goes on and on…)

I often think about my husband coming to my hospital room and having the unthinkable job of telling me that I had cancer.  I’ll never forget that moment, because it changed everything for me. But I’m an adult and I am old enough to process the information, even if I’ll never, EVER actually understand why cancer even exists.  But they are CHILDREN – how can they possibly be expected to comprehend what this all meant, for me, for them, for our family?  Before our friend died, their limited knowledge of cancer had been my son “braving the shave” every year for St. Baldrick’s.  We were involved, but had kept cancer at an arm’s length.

Cancer may just be a six-letter word but it’s scary as hell to grown-ups, let alone to children. And as a parent, your job is to protect your children from things that are frightening – not to bring those big scary monsters into your home and lives.  I realize that, with those words, I changed my children forever. I had always felt an enormous amount of “mom guilt” before – but this takes it to a whole new level of guilt.  I did this to them.  Before I had been “just” a wife, mom, daughter/daughter-in-law, sister, friend – and now I had to add cancer patient to the list.  And now, because of me, they too had a new label: “the kids whose mom has cancer”.  While me having cancer isn’t my fault, it was still because of me that all of this was happening.

They knew something was going on and, in absence of some information – children can assume the worst.  So, as much as I resented that this was news that we had to share, telling our kids was the right decision – the only decision – for us.   Here are some lessons we learned along the way…

Know what your children are capable of understanding

Every child is different – not just their ages, but what they can handle so let that be your guide. Our children were 7, 6 and 4 at the time so we limited ourselves to bite-sized chunks of information that wouldn’t overwhelm them.  We kept it very high-level – mommy is sick and the doctors will be giving me medicine to make me better. We chose to use the word “cancer”, as scary as it is, because we didn’t want to hear it from someone else.

Realize that it’s really, REALLY hard to keep this kind of secret

Aside from being really weak when I came home, I also began treatment immediately. I left work and was home for six months, as I underwent chemotherapy and eventually a stem cell transplant. My treatment also left me fatigued and ultimately with no hair. That certainly would have been pretty hard to explain away!

Additionally, a big concern for those with my particular type of cancer (Multiple Myeloma) is our sucky immune systems.  It is important that our entire family understand how critical it is that we be hyper-vigilant about washing our hands and watching out for germs.  When I get sick, it can escalate to full-blown pneumonia pretty quickly – and our kids needed to understand that too.  Not only because of that obsessive need to wash our hands, but also because it means I may have to miss out on some things because I am sick – or because I am trying to prevent getting sick.

Make sure your kids understand this is NOT their fault

I never really thought much about this when I first got sick. But in talking to counselors, they emphasized how important this was.  You don’t want children to think that your illness has anything to do with them.  Perhaps they were misbehaving in the days leading up to your diagnosis – and think that maybe, just maybe, they were being punished for that by your illness.  We emphasized to our children there was no way to explain why I got sick but that it was absolutely, 100% NOT because of anything they did or didn’t do.

Don’t underestimate how much time it will take your children to process the news

When we first told our kids, they didn’t really have many questions. It might have been that they were just happy to have me home.  Or perhaps they were distracted by the huge bowl of Halloween candy they had amassed the night before.  More than likely, it was a lot for them to handle and they needed time to process.  As the days and weeks passed, questions and concerns came to the surface, different from each child.  My son, our oldest, has always had the toughest questions for me, usually ones that make me feel like I’ve been sucker-punched.  This is the kid who asked me “Mommy, will you have cancer for the rest of your life?”. Considering my cancer is currently considered incurable, I had to explain to him that the medicine will keep it away for as long as possible.  He also asked me a question that STILL brings tears to my eyes…”Do more people live with the cancer you have, Mommy, or die?”  I explained that usually people who get my type of cancer are much older than me and aren’t as healthy, which means I should be different than most of them.

We always choose to answer their questions directly and with as much honesty as we can (and is appropriate).  We tell them that I have really great doctors, who are giving me really great medicine and I have every reason to believe I’ll be around for a long time.  Now that my hair has (mostly) grown back, I look like Mommy again to my kids. I can conceal from them the other side effects that my treatment has on me – fatigue, low platelet counts, stomach issues – which makes them think that I am 100% better.  If or when something changes, we will decide at that point how to address with them.

Celebrate the victories…together

Each time I get positive test results, I share that news with the kids.  They need to hear good news, not just bad news.  That first Thanksgiving, when my numbers were back in normal range – we all cheered (and there were some tears too…).  My first “zero” (aka negative M-spike)?  Bring on the dance party!  And now my Stringent Complete Response (essentially meaning cancer can NOT be found in my body) is something we celebrated through our participation in the Light the Night Walk, with nearly 100 friends and family by our side.

Our new normal now includes me living with cancer. And when someone in a family has cancer, the harsh reality is that the entire family is changed. There is no way to escape the effects it has on everyone; there is no hiding. And in so many ways this new normal really stinks.  However, from the ashes have risen some things I never would have expected.

In this post-cancer world, I would like to think that my kids are more empathetic and understanding.  Days when I’ve been stuck in bed sick, our kids argue about who is going to be “my legs” when I can’t go downstairs myself.  As we prepared for the Light the Night Walk, my children ran a lemonade stand to raise money for LLS and helped build the lanterns for the walk.  They offered allowance money, originally earmarked for things like Nerf guns and Pokemon cards, to help our team reach its fundraising goal.  There are also days it’s not all sunshine and roses. When the kids bemoaned a canceled vacation, cried because I couldn’t go to a soccer game or were devastated that Thanksgiving got canceled last year because I had pneumonia…again.  My son has nights he can’t sleep and I wonder how much of this weighs on him that we don’t even know.  Sometimes, seemingly out of nowhere, a question or concern will rise to the surface. In those moments, I realize that they need reassurance, a hug and maybe some extra snuggles to feel safe from this intruder.

This is why I fight EVERY. SINGLE. DAY. For my family.  Even though cancer invaded our lives, uninvited, it shouldn’t – WON’T – completely define us.  This will not be their story.  Our children may have a familiarity with cancer now that I would never have imagined but they are still just kids.  Kids who need their mom around for a long, long time.

Until next time…#gameon

 

I am obviously not an expert or psychologist – this is all based on my own personal experiences.  For more great information about how to help children deal when a family member has cancer, visit this website or talk to a professional. 

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.

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….

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!

Gratitude is the new black

 

In this blog, I usually try to focus on the positive elements of my illness, and certainly of life.  It probably goes without saying that having cancer – or any serious illness – can really force you stop and take stock of your life.  There is so much in the world that can be negative – it’s easy for us to focus on the people or times in life that have disappointed us.

Like many of us, especially moms, we all have so many things – too many things – going on all day, every day.  Without even thinking about it, we can get caught up in the day-to-day craziness. If I were to outline what a typical Tuesday looks like around our house – trust me, you would need a nap, a cocktail or both!

Much of what my  husband and I talk about these days is how we are going to get our three children to three different places.  And like many of us, especially moms, I usually moan and groan about how am I EVER going to be in so many places at once.

However, what hit me this weekend, at one of our three soccer games, was how GRATEFUL I was to be watching my children play.  Two Octobers ago, soccer was just soccer. One of too many activities we had to cart the kids back and forth from.  This weekend, as I watched my son score a goal, I cried. Yes, I ACTUALLY cried (thank goodness for sunglasses).  It was a nice goal but it wasn’t the technique involved or even that it was a winning goal (because they STILL don’t keep score in these games!).  It was watching his growth and seeing how far he’s come – and feeling grateful that I am here to see it.

For the last three months, I have been home, taking care of myself and putting my well-being first. This time has been invaluable to me, my health and my family.  As difficult as it was to agree with my doctor and nurse that I needed to do this, it was without question the right thing to do. Putting ourselves first isn’t always easy or natural.  If you’re like me, guilt kicks in pretty quickly.  On top of that, who has the time?  As I wrote about in a recent blog, we all spend our days rushing from place to place, without stopping to reflect on how we actually want to fill our days.  What I have been able to learn more clearly since my diagnosis is HOW I want to spend my time – and WHO I want to spend my time with. Before this illness, saying yes to anything and everything I was asked to do (and even some stuff I wasn’t asked to do!) was my “chronic illness”.  This type of clarity is something I am not sure I had before I got sick.

For this, I am grateful.

In a few short weeks, I will be the Honored Hero for the Leukemia & Lymphoma Society‘s  (LLS) Light the Night Walk in Princeton, New Jersey.  I feel so lucky to have been recognized in this way – and to be able to share my story with others.  LLS is an amazing organization, whose mission is to “cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families.  LLS exists to find cures and ensure access to treatments for blood cancer patients. We are the voice for all blood cancer patients and we work to ensure access to treatments for all blood cancer patients…”

When I first became involved with LLS a few months ago I made a commitment to raise awareness and funds for the walk and to advance the mission.  Which means I have to ask for money from our friends and families. This is NOT easy for me to do but I do it, reminding myself the money isn’t for me, well at least not literally (ultimately the funds will be used benefit all blood cancers, which will be good for me!).  I have been laser-focused on being creative about how to raise this money. I have put aside my own insecurities and discomfort at asking for help (and especially for money) and have been astonished at the outpouring of support we have received.   Friends and family members are donating their time, money and/or resources to support our team’s fundraising efforts. Every time an email comes in, alerting me to a donation, I am humbled beyond measure.  People from all stages of our lives have been so incredibly generous to us, and have been since the day I was diagnosed.

For this, I am grateful.

A dear friend has told me – since we became “cancer buddies”  – that we each fight our own fight and we must swim in our own lane.  What happens to me in my battle against this disease won’t be the same as what happens to someone else, even if they are the same age as me or were diagnosed the same time.  However, each day I am reminded how lucky I am.  I belong to several Facebook groups supporting Myeloma patients and their families.  I joined to be part of a community of others who are facing similar things as me.  It can be a forum to share experiences, ask questions and learn. But sometimes it is also place where difficult news is shared – someone has come out of remission, is entering hospice or has lost their battle.    Recently a “myeloma friend” (a connection initially made purely because we both got diagnosed around the same time) found out that she is no longer in remission.  We have much in common.  She too had a stem cell transplant (in fact, another transplant to support the first). She too has had similar treatments. She too lost her hair (actually, she’s lost it twice). Luckily, she too has an incredibly positive attitude, even about this most recent setback. I am confident she will be okay and will be soon be sharing the news that she has kicked Myeloma’s *ss again and is back in remission.  However her situation, and that of many others like her, reminds me just how fickle this particular type of cancer can be and how lucky I am to be solidly in remission.

For this, I am grateful.

Those dark nights, two years ago after coming home from the hospital, I was worried ALL. THE. TIME.  I worried about leaving my husband far too early – and as a single parent, to care for our three children alone.  I worried about leaving our children with no mother at very young ages – would THAT be their story?   I worried about all three of them, but I would often lay in bed with our youngest and wonder – if I left them this soon – would she remember me?

After watching my son score that goal, I walked across the fields (because naturally two of our three children play at the same time!) and watched our 6-year-old play. And you know what?   She’s actually not that bad!  Nearly two years ago, when I was first diagnosed, she was just a baby.  I wasn’t thinking about her soccer prowess.  I was thinking – far too often – about whether I would be around to see her – all of them – grow up?

Well, this week that same little girl turned six (SIX??).  There were questions about whether I would see her start kindergarten but two weeks ago she climbed those bus steps and I was there to watch her do it. I am not sure I can promise to completely stop grumbling about the many things I have to do, the carpooling, the homework, the bedtime routines (I believe we moms complain about this but secretly love most, if not all, of it).  But I can promise this – that I will stop, as often as possible, and remind myself how lucky I am to be here and alive to do them all.

For this, I am so grateful.

Every day brings us a new milestone – it may be starting kindergarten, or a lost tooth or simply looking at your child or partner in a new way, discovering something about them you never realized before. Perhaps your child won the spelling bee or scored that winning goal in hockey. Maybe you lost those last 10 pounds. Or maybe you said….to hell with those last 10 pounds and decided to treat yourself to that ice cream cone.  Maybe you connected with a friend you haven’t talked to in a while or finally decided to give yourself permission to block that annoying “friend” on Facebook until after the presidential election.  No matter what it is, you have the ability to make that choice – and are here and alive to do it.

And for this, we should ALL should be grateful. 

Take a moment and think about it.  What are YOU grateful for?

Until next time….#gameon

PS if you’re interested in learning more about our Light the Night walk fundraising efforts, click here!  There is still time to donate!

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In October 2014, after being admitted to the hospital for an eye infection, I was diagnosed with an incurable blood cancer called Multiple Myeloma (never heard of it? Neither had I!). Since my diagnosis, I have had a Stem Cell Transplant (SCT) and continue to receive maintenance chemotherapy on a regular basis – and I am thrilled to say I have achieved a Stringent Complete Response (sCR).  I am a proud wife and a mom of three young children ages 9, 7 and 6. 

Life is so, so short. And sometimes really, really unfair

Cancer sucks. I mean it really, REALLY sucks.

I know I’m stating the obvious – and I tend to do that a lot.  But sometimes life hits you with such heart-wrenching news that you are reminded again, in the most excruciating ways. In the past two or so years, I have mourned our dear friend and an aunt. CANCER. I have started a fight myself that I will likely wage for the rest of my life. CANCER.  My cousin – who also has Multiple Myeloma – is now bravely fighting a horribly painful secondary CANCER.  And this is in addition to the all-too-many diagnoses of cancer around us, every single day. Literally the other day our doorbell rang and behind it was a sweet friend, sharing that another young mom in our town just got diagnosed with ovarian cancer and thought we might able to help each other.

And then…last week I got a call that my (half) brother, John, who was fighting a second fight with breast cancer (yes, men get breast cancer), had died.  The cancer had spread to other parts of his body a few months ago and he had been fighting hard – REALLY hard – and always with a positive attitude.  Just a few weeks ago he had gone with his longtime fiancé, Kate to Chicago for a second opinion. It was serious, we knew this – but there was time to keep fighting.  THAT was the plan.  The plan was NOT that he would be killed from the treatment that was supposed to help him.  He was getting radiation and it was complications from the radiation that took his life.

God damn it, cancer. You suck – you really, REALLY suck.

When you lose someone suddenly, you really take stock of your life.  I have been able to think of little else since I got the call but how he spent those last few days. Did he do things he enjoyed?   Luckily the answer is yes. He spent time with Kate, and they celebrated that, ironically, he was feeling well.  For months, he had a stent in his throat as part of the treatment – and it was taken out a few days before he died. It had been painful for him so he was so happy to not be in that pain anymore. He spent the weekend feeling good, with people he loved, in the Hamptons, where they lived, which he also loved.

When my father died suddenly, I was haunted by the same thoughts.  But I was also comforted knowing that he spent his final night with my mom, the love of his life, watching videos and looking at pictures of our kids (the other loves of his life).  Granted, he would have appreciated a nice dish of gravy and macaroni but all in all, I think he spent those final hours being happy and knowing he was loved.

What would I do if I knew today was my last day?  What would you do? For me, that next day, I decided to throw out that long and ever-growing To Do list I talked about in my last blog out and take my older daughter Kate to the aquarium for the day (the other two kids were in camp). It was a great day and a memory we will have forever.

But here’s the unfair part of life, rearing its ugly head.  Despite feeling GREAT for weeks, the next day I got sick. Again. With pneumonia. Again.  I mean honestly – just when you think you’ve gotten as much as you can handle in, say, a week, the hits keep coming.  Last week, when I got sick, was supposed to be MY week.  The one week a month I get to feel like a “normal” (aka non-sick) person.  I’m supposed to be able to have a lot of energy, eat food that doesn’t taste like it’s slightly tinged with metal and maybe, just maybe, even indulge in a few adult beverages. But nope – not this time. This time I was in bed for 36 hours straight before being smart enough to head to the ER to confirm my suspicions of pneumonia. Sadly, after having it three or four times in the last two years, I can now recognize the symptoms all too quickly.  The silver lining – and yes, you know me by now, there always is one – is that they didn’t admit me to the hospital this time (I actually packed a bag to go the ER…how many people do that?). I was able to come home to my house, my family, my bed to rest and recuperate. And I am thankful to say I now am feeling much, much better!

And while that felt unfair to me, what is really and truly unfair is that my brother, my father and many, many others started their days expecting them to go one way and had no way of knowing that day would be their last.  This could happen to any of us. Every day tragic accidents happen.

When I was a teenager and things didn’t go my way (as they tend to do for most teenagers), I would say “LIFE’S. NOT. FAIR!!!”. And my dad would always say “Life isn’t fair, Jenny Girl”.  And damn it, he was right.  Life can be unfair in so many ways.  It isn’t fair that I am 44-years old and have a cancer for which there is currently no cure.  It isn’t fair that my brother was so sick and died so young.  It isn’t fair that parents lose their children.  It isn’t fair that marriages end, that friendships end.  It isn’t fair that each of us wakes up so many mornings to stories of gun violence or terrorism with an alarming frequency.  These things are really unfair.

So today, there’s no sugarcoating.

Stop the nonsense, people.  Stop fighting. Stop the drama. Stop the political bullying.   Get your face out of your phone and TALK to people. Leave work for that soccer game or yoga class – work can WAIT.   Do MORE of the things you enjoy doing.  Stuff you don’t like? Stop. Doing. It.  This is the only life we get – there’s no sequel. 

Yes, I make this sound easy and I realize it isn’t completely that simple.  We can’t all walk away from our responsibilities and start living willy-nilly without a care in the world. There’s that pesky To Do list that keeps following us around.  However, I found this excerpt from a commencement speech given by Steve Jobs at Stanford University in 2005, and really resonated for me.

When I was 17, I read a quote that went something like: “If you live each day as if it was your last, someday you’ll most certainly be right.” It made an impression on me, and since then, for the past 33 years, I have looked in the mirror every morning and asked myself: “If today were the last day of my life, would I want to do what I am about to do today?” And whenever the answer has been “No” for too many days in a row, I know I need to change something.

This stuck with me.  If  you catch yourself having too many days when you’re saying yes to everyone else but no to yourself, you should make a change.  If you’re continuing to do things that make you unhappy or stressed, you should make a change.  If look back on yesterday and the day before and the day before and you have to struggle to find memories and moments that made you smile, you should – you must – make a change.

Life IS short and it IS unfair.  That is the plain and simple truth.  However, we each have the choice in how we live this life – no one can take that away from us.  What we can control is how we spend our days, who we spend our days with and the energy we give to those around – both positive and negative.  What the last two years has taught me is that I want to have many more good days than bad.

I also want to honor the legacy of my dad by continuing to make him proud of me – by emulating the best parts of him, by being straightforward and honest but also trying not to hold a grudge after an argument.  I will keep talking to my kids about him all the time, telling stories that make them laugh and always keep him in their memories.

I want to honor the legacy of my brother by continuing my fight the same way he did – with a huge smile, a great sense of humor, an incredibly positive attitude and the belief that everything is going to be okay (even – and especially – on those days when it feels like it won’t.)

And most importantly I want to create my own legacy.  I think one’s legacy is always a work in progress and our everyday actions are the building blocks to how we are seen by others, now and after we are gone.  This blog is a big part of that for me – my hope is that I will be able to make a difference to people – if that’s by making someone know they aren’t the only one feeling a certain way, making someone laugh or cry (depending on what they need at that particular moment) or just making us all stop and think a little bit differently.

As I said, life IS short and it IS unfair…but is also about choice.  For me, it’s about choosing to live life with a positive attitude, showing kindness towards others, giving people the benefit of the doubt and, if all else fails, having a good laugh when you need it.  To me, that would be the ultimate legacy.

Until next time….#gameon

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

In October 2014, after being admitted to the hospital for an eye infection, I was diagnosed with an incurable blood cancer called Multiple Myeloma (never heard of it? Neither had I!). In the past year, I have had multiple rounds of chemotherapy and a Stem Cell Transplant (SCT) – and I am thrilled to say I am in remission!   I am a wife and a mom of three young children ages 9, 7 and 5. 

What’s the rush?

One month ago, I walked away from a job that I have loved for a long time to put my health, my family…myself FIRST.  This was NOT an easy decision for me at all. It felt selfish. It felt overly dramatic.  It just didn’t feel like…ME.  I am a full-time working mom and wife – that’s my thing.

But for the last month, I’ve been “just” a mom and a wife and oh, someone who happens to have cancer.  I am less stressed, getting better sleep, spending more time with my family and generally am just more focused on my own wellness.  I have been moving so much more (10,000 steps a day?  Some days I have that many before lunch!).  And I actually am sweating again from EXERCISE (well the 90+-degree summer heat is a part of that too!).  And my Myeloma numbers are good, really good.  For the first time since my Stem Cell Transplant in February 2015, I have gotten my beloved “zero” (aka negative M-spike) FOUR MONTHS in a row (can I get a WOO HOO for this one, please!!).  Clearly saying yes to me is working.

Being home has been exactly what the doctor ordered (both literally AND figuratively).   However, I am finding it’s not easy to change who we are at our core. I am someone who was always on the go. Rushing to get the kids on the bus.  Rushing TO work.  Rushing FROM work.  Rushing to get dinner on the table. Rushing to get the kids to their activities. Rushing to put them to bed (okay, I think all parents can agree THIS one makes sense!).

But the point is, what’s the rush???  Why are we all constantly running around, like our hair is on fire?  Why don’t we really, truly enjoy the moments we are in?

It hit me today as I was walking our dog, Sugar.  When I take her for our morning walk, I am a girl on a mission.   For me, it’s to get her to do her business and get my steps logged into my Fitbit.  But she’s still a puppy and only 9 months old.  Her mission? To chase butterflies, roll in the grass and pick up sticks.   She’s not in a rush.  She wants to literally stop and smell the roses.

This morning I found myself getting irritated because she was slowing me down.  Didn’t she realize I have a million things to do?   Um, actually no, she doesn’t.

Let’s be clear. No one would EVER describe me as a patient person.  I am not proud to admit this. I wish I were more patient and I try, really I do.  But some days I can’t stop myself from the screaming in my head when the kids say my name over and over and over and over….   I feel like I will lose my mind with all the constant bickering, even when I know I should be more tolerant and help them find ways to work through their fights, as mindless and ridiculous as they almost always seem (to me).  And it is a wonder my kids don’t have a growing list of curse words in their vocabulary but I bite my tongue while driving, instead of screaming expletives out like crazy when the person in front of me is going too slow/stops short/generally does something to irritate me.  Again, patience is a virtue…just not one of mine!

Now that I have this time to focus on my health and slow down, I am committed to trying to do a better job of not rushing so much and just taking my time.  But I think we are all guilty of this, aren’t we?  It seems easy to say ” be more present” and “live in the moment”. And when you have a cancer diagnosis, you do truly appreciate the cliche that life is short and you should enjoy each day you are blessed to have. And I do, on a grand scale.

But on a daily basis, it’s hard to stop the constant “go, go, go” mentality.  I am STILL that mom and wife.  I STILL have a million things to do (incredibly that list seems LONGER now that I am not working right now…how is that possible??).

How often are we only doing one thing at a time?  We are on iPads while watching TV.   We are texting while making dinner (or walking the dog or talking to our family members). And how about this Pokemon Go phenomenon?  Seems like everyone is searching for Pokemon on their walks, daily commutes and, apparently, even in a press briefing with the State Department!

We know, logically, that we shouldn’t do this but how can we stop?  If you’re like me, your daily To Do List is the length of your arm.  According to this article on Inc.com, a study “showed that subjects who multitasked while performing cognitive tasks experienced significant IQ drops. In fact, the IQ drops were similar to what you see in individuals who skip a night of sleep or who smoke marijuana….

Multitasking has also been found to increase production of cortisol, the stress hormone. Having our brain constantly shift gears pumps up stress and tires us out, leaving us feeling mentally exhausted (even when the work day has barely begun).”  For any of this, this is a bad thing especially for me, someone who needs LESS stress in my life to keep my health and wellness in check.

We all know that stress is bad. But for a myeloma patient, it is REALLY bad. According to the International Myeloma Foundation, “Stress can be a very destructive force when it comes to myeloma. Stress really disrupts the immune system and myeloma is a cancer of the immune system.”  Research shows that stress can absolutely have an impact on many areas of our health, including  and especially that of cancer patients.

So my goal for myself is to stop rushing.  Be more present and engaged.  Reduce those things in life that are stressing me out and increase those that bring me enjoyment.  To be in the MOMENT, whatever that moment is.  I can’t lie…this will take some serious, focused effort – to deprogram who I have been for a long, long time.  But that is what this time home is about.  Committing myself to putting my health & wellness first and foremost.  Naturally, this is about the medical things that I need to keep my numbers in check, including keeping away from germs and generally anything that will impact my treatment in any negative way. It is also about the MENTAL elements of my ongoing recovery.  This means less stress – and stress can manifest in many, many ways.

Following the advice to take this time off has been one of the best decisions I have ever made. A difficult decision but the right one without question.  Putting yourself first is not an easy thing to do, whether you have cancer or not.  So whatever it is that makes you HAPPY, I encourage you to do MORE of that and less of the stuff that doesn’t.  This might mean the house is a little messy.  It may mean you don’t cross EVERYTHING off your too-long To Do List.  But it could also mean you get more snuggling in with your kids or partner. It could mean that you binge-watch that show you’ve been dying to see on Netflix.  Or it could simply mean you actually enjoy that nice, leisurely “walk” with your dog…and maybe even stop and smell the roses.

Until next time….#gameon

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

In October 2014, after being admitted to the hospital for an eye infection, I was diagnosed with an incurable blood cancer called Multiple Myeloma (never heard of it? Neither had I!). In the past year, I have had multiple rounds of chemotherapy and a Stem Cell Transplant (SCT) – and I am thrilled to say I have achieved a Stringent Complete Response (sCR).  I am a wife and a mom of three young children ages 9, 7 and 5. 

Bad blog alert!!

Please DELETE that last one…still under construction! This is what happens when you blog from the beach. You get distracted too much easily! 🙂

Today I celebrate another anniversary 

Earlier this week, I shared that my husband and I were celebrating a big anniversary. We have been married for 13 years. For our 10th anniversary, instead of the traditional presents of tin or aluminum, we were gifted with a cancer diagnosis for me that rocked our world. My husband was incredible in those days, weeks and months and I am thrilled to say that, three years later, we are stronger than ever. I am stronger than ever.

While reaching that anniversary was hugely important, today is another big anniversary for me.  Two years ago today I received the first “zero” that stuck. For those of you who follow my story, you know “zeros” are how I refer to having a negative M spike, an important test for Myeloma patients.

What is an M spike, you ask?

(WARNING ..lots of science-y stuff ahead…)

In multiple myeloma, the M protein comes from a great excess of plasma cells. Ordinarily, plasma cells will produce a wide range of antibodies. In the normal or healthy people, their plasma cells produce a wide array of different antibodies—so-called polyclonal antibodies, or polyclonal immunoglobulins.

When plasma cells become cancerous, often there is a single, very bad cell that has given rise to many identical minions. All of the minions are clones of the same cell, and they make only the same monoclonal proteins. Since there are a lot of plasma cells, multiplying abnormally, they make a lot of this monoclonal protein. The abundance, or spike, in the volume of just one protein, is closely monitored in patients with Myeloma.

Simply said, the M spike measures if I have these bad, cancerous proteins multiplying in my blood.

No M Spike = no bad proteins = no cancer-y proteins = REMISSION

Can we get a WOO HOO, people?!? 

I will never forget the road it took me to get here.  After being diagnosed in October 2014, I had three months of induction chemo, followed by a Stem Cell Transplant (SCT) in February 2015. These procedures are not for the faint of heart. This transplant includes weeks of tests to ensure your body can handle the deadly chemo that will be given to you.  That’s just how bad the chemo is.

I spent several days with a neck catheter extracting healthy cells from my body, which would be reinfused to counteract the poison they gave me. My immune system was decimated, my hair became a distant memory.  I was prepared for all of this. What I wasn’t prepared for was it taking more than a year to get to remission.

I remember SO vividly when my amazing nurse called to tell me that first time my M spike was negative. I was en route to a girls’ overnight trip at the beach with two of my dearest friends. We screamed, we cried, we celebrated. And I felt confident that this was it – remission was mine.

However, this joy was short lived. In the months that followed my bloodwork was erratic, bouncing up and down.  Each time, it inched up I would cry.  I still recall the words of my nurse, reminding me “this is a marathon, not a sprint” and I always have to look at the bigger picture. That my health is more than month’s test.

But I’m stubborn. And I’m an overachiever. Did I mention stubborn??

Psychologically I knew what I needed was to get – and KEEP – this number down. Get it back to zero. Which is why every time it fluctuated during that first year it was like a knife through my heart.

Anyone who has had to wait for test results will tell you that those feel like the longest hours of your life. The 48 to 72 hours between when the tourniquet is tightly tied around your arm while the tubes slowly fill and when the results actually become available are complete agony.  Each month is filled with hope, fear, optimism and anguish. It never EVER gets easier.

But then one month it happened. The test showed those nasty proteins couldn’t be found. And then again the next month. And again. We started counting those zeros and counting…one become two…two became four…four became six…and the next thing I knew I was up to double-digit zeros.

Getting and waiting for those tests are still agony. But now each month I am lucky enough to confirm that I am still healthy.  I call my husband at work and just shout random numbers at him “”8!!” “15!!” “24!!”

I text my sister, my sister-in-law. I group text my high school posse and my college besties.  And when my mom was still here, I would call her immediately and she would cry, telling me how proud she was I “failed” my test by getting a zero.

This part?  This ability to celebrate my health every month?  This never EVER gets old. I cry each and every time.  And the heartache from not being able to tell my mom is just one part of that.

It is my opportunity to reflect with gratitude on how far I’ve come. To pause for a few moments and appreciate my health and remind myself to not take it for granted.

Today, two years after that first zero, I am lucky enough to say I have achieved – and am maintaining – a Stringent Complete Response. This is as good as it gets for a Myeloma patient. Patients who are able to achieve stringent complete response have the best long-term outcomes.  I also recently read research indicating that “multiple myeloma patients who respond more gradually to their initial treat­ment may have better overall survival”.  Of course it’s easy to say now but it sounds like a silver lining to me!

Many Myeloma patients celebrate their SCT date as a new birthday. But this day – April 26th – has now become another important milestone for me.  It’s the day the yo-yoing ended.  The day my blood stopped betraying me and finally settled down.

I do understand Myeloma is a tricky bastard, working hard to outthink, outrun, outsmart any medicines thrown its way. One month I could find my medicine isn’t as effective and my numbers are creeping up.

I won’t lie…initially I would be DEVASTATED. But things are different than they were just a few years ago. There are SO many more treatment options for Myeloma. IF I ever lose my zero, I know science is on my side. I know that I have an incredible team of doctors and nurses who will come up with a new plan. I also truly, deeply believe a cure is on the horizon.

By the way, in case you’re wondering, I’m at 26 zeros and counting …

 

Until next time,

#gameon

#26andcounting

#zerosrock

Update on our Happily Ever After…

Three years ago I wrote the blog below, on our 10th wedding anniversary. Life was quite different three years ago. I had just been diagnosed with Multiple Myeloma. I had no idea if I would respond positively to treatment or if I would become a statistic. For the first several months, I lived in a fog worrying whether each milestone would be my last, our anniversary included. 

Fast forward to today and I am deeply grateful to share that I am strong. I am healthy. I am me again.  I can’t lie. In the deep recesses of my mind, dark thoughts can sometime still be found.  But they usually get quickly pushed away by optimism, gratitude and hope.  

In that blog, I talked about how my husband and I had always assumed we would spend our monumental 10th anniversary poolside or at the beach. That I would have been rocking a floppy straw hat, not a wig. That my biggest decision should be whether to have the strawberry daiquiri before OR after lunch, not which chemo cocktail to settle on. 

Remembering this makes today that much sweeter. Today my husband and I are sitting under a tiki hut, listening to the gentle waves of the ocean. I have sand between my toes and a fruity cocktail was just delivered (spoiler alert: it was BEFORE lunch!). My hair is hot on my neck and so it’s thrown sloppily into a messy bun – it’s long enough now to do that with ease. 

Given the events of the last few years – my illness being just one of them – it is never lost on me how incredibly lucky I am. I feel a peace and hope that I didn’t right after my diagnosis, and maybe even before. Life can be scary and unfair but also can have a way of showing us love and hope. 

I have complete faith there will be a cure for this disease – and I have every reason to believe I will be here to see it AND benefit from it. This hope, this optimism, this faith has helped to shift how I view my future and all the many milestones ahead of me. It has helped me to trust that I will be able to spend our 20th anniversary the same way…loved, happy and, most importantly, healthy. 

Until next time…

#gameon

PS this epiphany (and trip) wouldn’t have been possible if not for the great husband who planned it – and the wonderful sister who is holding down a very crazy fort at home with three kids and a dog! Thank you!! 

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

Ten years ago today, surrounded by all the people most important to us, we said “I do”. At the time, and until the birth of our three kids, this was unequivocally the best day of our lives. It was exactly what we wanted – the right combination of a beautiful wedding and a great, kick ass party. We laughed, we cried, we danced – to us, it was perfect. Like most newlyweds, we spent our honeymoon talking about the highlights and dreaming of our “happily ever after” and what we would be doing five, ten, twenty years later.

Well. here we are…ten years later..and who would’ve thunk THIS is where we would be. All those years ago we sat poolside, having hearty debates about whether we would celebrate our tenth anniversary back in Mexico where we had honeymooned (my husband’s vote) or in someplace more exciting to me, like Italy or Hawaii. THOSE were things you “argued” about on your honeymoon.

Instead, we spent this week meeting with my doctor and nurse to talk about my maintenance plan for this incurable cancer I have. Instead of being on a beach or lounging at the pool in a bathing suit and big straw hat, I am rocking a wig or caps. I thought the biggest decision I would be making would be whether or not I had that strawberry daiquiri before OR after lunch? Instead we are making decisions about which type of drugs I will be taking until death do us part.

I have said before but it merits saying again, especially today, that my husband is a ROCK STAR. How he handled the week leading up to my diagnosis with Multiple Myeloma was nothing short of amazing. He held himself together and our three young children. He went back and forth to the hospital, day after day, meeting with doctors, who were banging their heads against the wall to figure out what was wrong with me. And, when I was taken off a respirator after nearly a week, he was the one who came to the hospital, looked me in the eyes – with tears in his own – and let me know that I have cancer. I’m not sure I will ever understand how much that week changed him. I do know that it changed US.

When you take your wedding vows, you promise to love each other in good times and bad, sickness and health. Those words are powerful at the time. But when those good times and bad times actually happen? When sickness sneaks up on you, as a young mom, and your husband has to tell you that you have cancer? When two months later, he has to tell you that your father has died unexpectedly and suddenly? And two months later, he has to shave your head? I know I didn’t imagine any of these things when we took our vows.

It goes without saying being a cancer patient is HARD. Being a mom is hard. But being a caretaker? Watching your partner suffer, physically and emotionally? That is a type of hard that I can’t imagine. Having to keep everything together…the house, the kids, me….day after day with no break? That is HARD work. I’ve watched my husband do it. I watched my parents do it for one another when they suffered serious medical issues. I watch my father-in-law do it for my mother-in-law, who suffered a stroke many, many years ago. It is a tough job with no time off. I have so much respect and admiration for every friend, partner, spouse and child who is selflessly taking care of someone. You are the true heroes.

When we got married, I chose the song “At Last” by Etta James as our wedding song. I had always loved it and, clocking in at two and half minutes, I knew our first dance would be short but sweet and we could invite our wedding party and guests to dance with us next. That next song was a song called “True Companion” by Marc Cohn, a song my husband, to this day, considers our wedding song. If you’ve never heard it, it’s just beautiful.

On that Sunday afternoon last October, my husband held onto my hand as I lay in a hospital bed, and said the words that changed both of our lives forever. I’ll always remember it. But what he did next will never leave me. He took his headphones and put them up to my ears and asked me to listen. What I heard were the beautiful words to that song….
When the years have done irreparable harm

I can see us walking slowly arm in arm,

Just like that couple on the corner do

Cause girl I will always be in love with you

When I look in your eyes, I still see that spark

Until the shadows fall, until the room grows dark

Then when I leave this earth I’ll be with the angels standing

I’ll be out there waiting for my true companion

Just for my true companion

True companion

True companion

He told me that every day, since I had been unconscious, he would listen to this song, “True Companion” over and over. As I have said before, my husband is a man of few words. But this gesture told me everything I needed to know. We don’t need Mexico or Italy to celebrate these past ten years and the many, many years we are confident we have ahead of us. We now understand, better than ever before, that each day, each year is a gift to us. And that appreciation is something I don’t know that each of us always have, without something like this to remind us.

Thank you, Brian, for being the most incredible husband, partner, father and caretaker. Happily ever after doesn’t always look like what you imagined it would but it can still be pretty amazing. I love you (ps – I promise we will take that trip soon!)

#gameon

What does September mean to YOU?

September has always been one of my favorite months. Labor Day may only be the unofficial end of summer, but it is still a sign of many things changing.

It means shopping for back-to-school clothes, checking off each item needed on your school supply list and — if mom is feeling generous — maybe even a new backpack.

It means the school buses will be rolling up soon, carting away my three kids and leaving me with a few (blissfully bittersweet) hours to myself once again.

September is when I start losing my husband to the newest football season, with games on seemingly every single day. But I don’t always mind because I know I can also look forward to the start of an all new television season, catching up on the latest happenings at Grey-Sloane Memorial and Olivia Pope & Associates, while stocking up on tissues to watch the newest episodes of “This is Us.”

And I can’t lie — This September I am anxiously awaiting the revival of “Will & Grace.”

September suggests we are going to (finally) get back to our routine. The sun sets earlier, the kids are tired from school, homework and activities. I can trust in the predictability of the buses’ arrival at end of the day, the start of after-school practices and each child falling into bed (hopefully) happy and exhausted each night.

And September heralds the beginning of fall, my absolute favorite season of the year. The air starts to chill and we begin to hear the crunch of leaves under our feet. I love my flip flops, but am thrilled I can finally start to think about breaking out my sweaters and boots again.

Since retailers insist on rushing each upcoming holiday, it typically means Halloween candy has probably already been on the shelf for a few weeks. Soccer season is about to begin, our youngest daughter will celebrate her birthday and our older daughter’s birthday (at the beginning of October) is just around the corner.

September has always made me happy.

But now September is also about something else — Blood Cancer Awareness Month. And as someone living with a blood cancer, September now means more — much more.

Nearly three years ago I was diagnosed with multiple myeloma, a cancer of the blood.

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 cell responsible for producing antibodies (immunoglobulins), which are critical for maintaining the body’s immune system. Through a complex, multi-step process, healthy plasma cells transform into malignant myeloma cells.” The bad cells can eventually crowd out the body’s normally-functioning immunoglobulins and can result in bone and kidney issues.

I was 42 years old when I was diagnosed with this disease, and it was caught when I went to the emergency room with an infection in my eye and what I thought was a cold. That cold developed into full-blown pneumonia within 36 hours and I was unconscious for a week, on a breathing tube, feeding tube and received dialysis twice.

Simply put, I was a mess.

When I woke up from this unplanned “nap” I was told I had cancer — and a cancer I had never heard of before. All of sudden I was a patient. Until my diagnosis, I thought I was healthy. Sure, I was tired and I got sick a lot but I assumed it was because, at the time, I was a full-time working wife and mom.

And then I found myself sick. Really sick.

Until this, September meant all those other things to me. Life was simple.

If you’re like me, you probably quickly scroll through your Facebook feed each day. I typically grab my phone before I even get out of bed, hurriedly scanning to make sure I hadn’t missed anything overnight (like what, I’m not entirely sure). There are some posts that garner more of my attention than others. I’m somewhat embarrassed to admit I would sometimes move hastily past posts for charitable organizations or (fill in the blank) Awareness Month.

But now, I stop each and every time.

I amazed by how many causes there are — how many of my friends and family are affected by something for which they need to put themselves out there and ask for support. And this is hard to do, trust me. Pre-cancer it was not easy for me to admit I needed help.

But since I got sick I have had to make myself vulnerable in ways I never even imagined. We have had to lean on our incredible village, needing friends to pitch in with our kids, accepting meals when I wasn’t able to cook for my own family and now, most difficult for me, having to ask everyone — anyone really — to help support a cause that literally is life or death for me.

Which is why September is now about getting the word out about blood cancers, especially since so many of the symptoms are vague and easily confused for other illnesses, such as the flu. Despite being the second most common blood cancer, myeloma is very often misdiagnosed many times at first. Symptoms like anemia, bone pain and fatigue are frequently dismissed as something else.

Given my young age at diagnosis, I am not your “typical” myeloma patient, though I am learning there are more and more younger people being diagnosed. As such, I feel I have a responsibility to raise awareness, raise funds and raise the profile of multiple myeloma.

I didn’t ask for this. I never expected to be speaking or writing about cancer, let alone my cancer.  But here I am — an accidental advocate.

I now have an obligation to make sure people are aware of the risks of blood cancers and know how these cancers can show up, even when it seems unlikely they will get it. Anyone can find themselves in my shoes.

September is the time to shine a spotlight on blood cancers, what they look like and how they can affect us all. So please, don’t scroll by too fast. Please take a minute to think about those who are touched by blood cancers.

Even if September still means all those wonderful things it used to mean to me, maybe this year make it the time you 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.

Take time for some self-care or just recharge that Fitbit to make sure you get in your 10,000 steps.

Putting yourself first is something you will never regret, no matter what time of year.

Until next time, #gameon

For more information on blood cancers, including leukemia, lymphoma and multiple myeloma, please visit www.lls.org.

And to help support Blood Cancer Awareness month please consider a donation to our Light the Night Team or other great organizations such  www.lls.org, www.mmrf.org or www.myelomacrowd.org .

This blog originally published on The Mighty.