Please DELETE that last one…still under construction! This is what happens when you blog from the beach. You get distracted too much easily! 🙂
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,
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…
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
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!)
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 50th 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
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.
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
This blog originally published on The Mighty.
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 20th wedding anniversary, even our 30th or 40th. 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
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….