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 love this quote. Live the life you choose to write for yourself. #beyourself #liveyourdreams #loveyourlife: 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….

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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. god laughs  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.

Image result for multiple myeloma mom life doesn't always go as plannedThe 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.  kick shit out of option bBut 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 Image result for i love ponytailsability 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. Top-40-best-Quotes-about-Strength-quotationAccording 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.  Image result for take care of my health firstAnd 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, Image result for stay at home mom vs working mom quotesreceived 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 Image result for im killing it(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….

Image result for this isn't the path I planned

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.  Image result for attitude of gratitude 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. Image result for living on borrowed time quotes

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”.

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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

 

 

Thinking about getting a puppy for Christmas? Here’s what happened to us…

We’ve all seen those videos – of kids being surprised on Christmas morning with a new puppy.   It’s adorable! It’s heartwarming!  It’s a once-in-a-lifetime memory!  I could already envision how our kids would react if we got them the puppy they had been BEGGING for – it would be EPIC!

My sister-in-law (who I LOVE) sweetly reminded me that I should consider the moments BEYOND the video (I can get caught up in the IDEA of something versus the reality…).  But, as the expression goes “you only live once”!   I feel like people say this all the time, usually to explain their carefree attitude or sometimes a seemingly-irrational decision.  And last Christmas, my husband and I threw logic out the window and became a cliché – and it was all because we told ourselves “you only live once”!

We decided to finally surprise our three kids – ages 8, 7 and 5 at the time – with an 8-week-old puppy.  We had been telling the kids for weeks that it was too soon for us to get a dog—they weren’t old enough yet and just weren’t ready for the kind of responsibility that comes with having a pet.   Up until Christmas Eve, they kept asking, and we kept telling them we didn’t want them to be disappointed when  a puppy wasn’t under the tree (all the while knowing that our newest family member was already cuddled up next door with our AMAZING neighbors. Mean? Perhaps, but I really, REALLY like surprises!).

Perhaps your children, like ours, are keen negotiators.  Our kids’ first offer?  “If we get a dog, we don’t want ANYTHING else from Santa for Christmas” (of course that didn’t stop them from creating long lists filled with requests for an Xbox, American Girl dolls and all sorts of My Little Pony paraphernalia).  Offer #2?  An already-agreed–upon division of labor among the kids, presented to me by my oldest daughter, who said “I will clean up the poop, Mommy. And you have to know I’m serious if I’m offering to clean up the poop!” (It’s hard to disagree with this logic…).

Christmas morning unfolded like it always does—complete craziness, too many presents and wrapping paper everywhere. Everyone was over the moon with their loot and ready to start diving into their Xbox games, My Little Pony castle American Girl dolls. That was until a four-legged stranger made her grand entrance (I tried to come up with a really creative way to introduce the puppy.  Piece of advice – it’s HARD. I quickly learned 8-week-old puppies do NOT just SIT in a basket!  Eventually we just put her on the floor and she sort of wondered in…).   The kids’ reaction upon first seeing her is something I will never, ever forget.

Like us, I am sure this is a decision you don’t take lightly.  A dog is a BIG responsibility for the entire family.  And I didn’t delude myself into thinking that any of their offers would come to pass – there were other presents given and – spoiler alert! – while the kids initially were pretty good about their promise to help out with the responsibilities of a puppy, these days my husband and I do the majority of the work.

A dog – a PUPPY no less – adds more chaos, mess and insanity to lives that are already chock full of all those things.  But here’s the crazy thing – despite not originally being a dog person (sorry…I know this is blasphemy to many!) – no one is more surprised than me by the fact that I don’t really mind!  Ultimately this was a decision I am happy to report that I am really glad that we made.

And while you should be prepared that you will likely do most of the work (especially if your kids are as young as ours), you should also prepared for the joys of having a dog. In the weeks after our mini Goldendoodle Sugar (a name all three kids agreed on through some kind of Christmas miracle…) joined our family we were all in love (well to be honest it took my husband a little longer to come around but now he’s hooked too!).  Like welcoming your second, third, fourth child, your heart finds room to love this newest family member and you will quickly feel like they have always been with you.  As if you and your kids had always had this bundle of love to snuggle with, like you had always had someone nibbling on your shoes and on the kids’ toys (one downside of a puppy is the constant nibbling…it does go away, I promise!).  And just like when you had your children, you won’t mind the puppy waking you up in the middle of the night like a newborn (which thankfully ours only did for the first two or three months).

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I would find myself coming home after a long day at work, grabbing the dog and then reaching to kiss the kids (husband was third in line…). And now that I’m a stay-at-home mom, I love spending chunks of my day snuggling on the couch with her (despite our strict insistence that she would not be allowed on the furniture!).

Christmas has always been my favorite time of year. I love bringing the box of ornaments down from the attic and unwrapping each one, remembering the story behind it. I love decorating the tree with my kids, despite the perfectly-imperfect placement of ornaments (why do they ALWAYS put the heaviest ones on the weakest branches??).  I love trying to think of that PERFECT present and the look when it’s unwrapped by the recipient.   And even though I moan and groan every night, I love the ridiculous Elf on a Shelf because my children truly believe that he travels back and forth to the North Pole EVERY SINGLE night to report back to Santa. How can you not find joy in that kind of blind belief and innocence?

The memory of how unbelievably happy and surprised my kids were last Christmas morning, when they saw a puppy we had assured them wouldn’t be joining our family for many, many years – well, it was amazing (watch this video – I dare you to NOT smile). And to me, THAT is what the holidays are all about – celebrating family, honoring traditions and making lifelong, unforgettable memories.

If you’re considering getting a puppy, you must think beyond those first few moments and be ready for all the good (and not as good) parts.  You must understand what it means to add an adorable, messy, untrained puppy to what I imagine are already crazy, hectic and unpredictable lives.  But most importantly you must be ready to fall deeply, head over heels in love.

Besides, you only live once….but as they say – if you do it right, once is enough.

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#gameon

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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!). I am a proud wife and a mom of three young children ages 9, 7 and 6 and since my diagnosis I have been writing about my experiences as a mom, a cancer warrior – or both!  I am thrilled to say that my cancer is in COMPLETE REMISSION.  

 

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. 

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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.

jake_hockey

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

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