Hitting the reset button

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

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

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

This was a mistake.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

#gameFingON

#letsdothis

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I fight for those who no longer can

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

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

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

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

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

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

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

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

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

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

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

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

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

#gameon

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

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

 

 

Origin Story: #gameon

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

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

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

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

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

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

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

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

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

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

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

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

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

I called LLS and told them I was back in.

GAME. F’ING. ON.

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

#gameon

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

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

Come celebrate with us (and do a little good while we are it! )

Have you ever had a surprise party?  I have – and it ROCKED!  A year after my cancer diagnosis,  my husband threw me the most incredible party. I had never had a surprise party – and had always wanted one – so it was a night I will never forget.

As I said in a blog at the time, I was completely unprepared for what it would feel like to walk into a room and trying to process why this collection of faces were together in one place.  Friends from grammar school, college and various stages of work life were mixing and mingling with our neighbors and the parents of our children’s friends (who I am happy to say are now OUR friends too).  Friendships ranging in duration from less than a year to those that have been nurtured for almost literally a lifetime.  The single thread was me – and it is an overwhelming feeling.  A friend said to me the next day that you don’t often see this type of celebration when someone is actually still here to appreciate it.  

Thankfully I am STILL here to appreciate it!  In a few weeks, my husband and I are planning another party, ironically at the same venue and hopefully with the same group of amazing people (and some more who have joined this journey with us since then).  This event is officially a “fundraiser” for my campaign for The Leukemia & Lymphoma Society’s Man & Woman of the Year  (perhaps you’ve heard a little something about this? 😉).

lets-celebrate.jpgBut for me, for us this party is about much, much more.  When we went to book the room and the ONLY date they had available just happened to be on the same weekend of the three-year anniversary of me being in remission, it seemed like fate. Three years ago on that weekend I got a “zero” that finally stuck, which meant that the cancer was longer detectable in my blood. A zero I had probably taken somewhat for granted until a few weeks ago when it seemed I had lost it.  So yes, this is officially a “fundraiser”, but the truth is it really is a celebration of many things.

It’s about my continued remission (especially after that scare a few weeks back). thank-you-lettering-typography-vector.jpgIt’s about being able to pay it forward – to do my part to raise awareness of a disease that theoretically should not have affected me, as I am not your “typical” myeloma patient.  It’s about celebrating and thanking my kids, my husband and all the friends & loved ones who have stood shoulder to shoulder with us during these past few years, during the good and the bad. 

Life is busy and nights out are precious.  We have three kids and know all too well the push and lets party 80spull of activities, sports and commitments. There are lots of good things I can tell you about the night to get you excited – yummy food, open bar, DJ, great raffle & silent auction items – AND an excuse to break out some totally awesome 80s-inspired outfits.

But the truth is many of you were there with us that first time – and it means a lot to have you there on another very important night to us.  Not only to raise money for a cause that is close to our hearts – finding a CURE for blood cancers – but also to celebrate THREE YEARS of me being cancer free…and hopefully many, MANY more!  

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For information on Totally 80s Party Fundraiser on Saturday, April 27th, visit the event page at: https://www.eventbrite.com/e/totally-80s-party-fundraiser-for-jen-moogs-lls-mwoy-campaign-tickets-58646272580

For information on my campaign for Woman of the Year, visit my page at: https://pages.mwoy.org/nj/nnj19/jmoog

three years 2

#gameon 

I need YOUR help to make a difference!

If you follow this blog, you’ve heard my story…a LOT. In October 2014, I went to the Emergency Room with an eye infection and left with a cancer diagnosis. In the two weeks between, there was a lot of uncertainty about what was wrong with me and, quite frankly, whether I would leave the hospital at all.  As a 42-year-old wife and mom, when I was told “you have cancer” I knew I needed to fight – and fight to win.

making difference quoteMy diagnosis with multiple myeloma, a rare and incurable form of blood cancer, was shocking. Sure I was tired a lot and got sick often but I was a full-time working wife and mom – didn’t that happen to everyone? Also, the typical myeloma patient is over 65, African American and male – not quite me! My mantra from day one was “Game ON“. I had far too much to live for – a loving husband and three young children, only 7, 6 and 4 years old at the time. Anything less than remission was NOT an option.

One of the most positive things to come out of all of this has been our family’s involvement with The Leukemia & Lymphoma Society (LLS). Working with LLS has given me purpose, it helps me try and make sense of why this has happened to me, to our family.

Some people have wondered “why LLS?” and the answer is simple – they asked. They were there when I needed a purpose.  Originally I was asked to speak at the Student of the Year events for the daughter of my sorority sisters (who went on to be the FIRST ever Student of the Year for LLS NJ) . did you know graphicFrom there I was asked to be the Honored Hero for the Princeton Light the Night walk in October 2016 and I was hooked.  I have been able to speak to audiences, big and small, and share my story. I  can get immediate feedback about how I am helping people by telling them about my diagnosis and my journey since.  Yes, LLS doesn’t have an M (for myeloma) in it’s name but make no mistake – LLS is a leading funder of groundbreaking myeloma research.  In 2017 LLS launched the Myeloma Initiative, a comprehensive, multi-pronged approach to realize cures in the near term.  LLS has pledged over $30 million invested in research over the next 5 years.

As for me, I knew I needed to do something.  The picture of a myeloma patient is drastically changing and I believe I have a responsibility and the ability to raise awareness of this disease which is misunderstood and often misdiagnosed. And together we have made an impact!  Over the last three years, Team #gameon has raised over $60K for blood cancers – with your help we are making a difference!

So why I am telling you all of this?  Each year, LLS runs their Man & Woman of the Year (MWOY) campaign, a philanthropic competition to support blood cancer research graphic for blogin honor of two local children who are blood cancer survivors. And, this year when LLS nominated me for Woman of the Year, I thought “GAME ON!”

I am eager to make a big contribution through my fundraising efforts. The Man and Woman of the Year is selected by the most number of votes.  And naturally $$ = votes! My goal is $75,000.  Those of you who know me well know that I am slightly competitive.  Of course I want to win (there is a tiara and sash for the winner…just saying…).  But the truth is that this is personal for me – I have a husband and three young children.  Every dollar I raise – WE raise – helps to find that cure I so desperately need.

In the years since my diagnosis, there have been many ups and downs, including a recent scare that my cancer had returned. In those days, as I tearfully waited, I made a promise to myself. If I was okay, I was going to double down on my commitment and my drive to do more.  While I am incredibly grateful to say that I am still in remission, myeloma is a tricky beast, almost ALWAYS coming back. This scare has strengthened my commitment to advancing treatment options – including a CURE – not only for myeloma but for all blood cancers. I hope that I can count on your support to help me meet my goal!img_5073-1

How you can help!

The power of YOU

This past week has been a roller coaster of emotions.  For almost three years, my M spike (the measurement of “bad” protein in my blood) has been negative, zero, undetectable. Until last week when I got a call saying that my blood work showed those proteins were found this cycle.  We immediately upped my medicine and a week later retested – and my M spike was gone again!

Of course this was cause for (some) celebration. On the one hand, I am super grateful that my body is so responsive to one of my medicines, which we had tinkered around with because of some bad side effects.  We knew going in this would be a risk.  That decreasing the dosage of the medicine could mean that the proteins could resurface. And they did.   And it is amazing that that number went back down so quickly!

But this scare has been…scary.  While I had hypothesized these results were perhaps due to an “epic lab fail” or, as a friend surmised, maybe a drunken intern with a microscope, the fact is they could signal a more forceful return of my myeloma.

We met with my oncologist this week and he was more cautious with his optimism than we were, those of us who cried, jumped for joy and screamed out loud when that zero came back (I don’t think that was just me, right?).  Before we can really celebrate, I now have to get additional tests before we finalize our plan of action.

Up next, I will need to get a bone marrow biopsy (which can be painful AF). This is the test that confirmed my original diagosis 4 1/2 year ago.  After that I will have a petscan, to determine if I have any lytic lesions, or soft spots, in my bones.  To date, I have had virtually no bone involvement which I am grateful for given that, according to the Multiple Myeloma Research Foundation, approximately 85 percent of patients diagnosed with multiple myeloma experience some degree of bone loss and the pain associated with it.

Believe it or not, I am happy to be getting these tests.  Insurance won’t often approve tests like these and I haven’t had either of these in four years. I feel hopeful these tests will confirm what my body feels – that I am healthy & strong.

And we need information before we can make a plan. If these tests show that there is minimal – or NO – myeloma in my bone marrow, we stay the course. If the petscan shows my bones still don’t look like Swiss cheese, we stay the course. If anything has truly ticked up, we are looking at a whole new treatment plan… a move I have wanted to avoid for as long as possible.

I truly believe that each of you played a role in creating this wave of positive energy and love that brought me here — and I hope you will keep them coming. As important as these last tests were, these are equally important (hell, aren’t they all??). I have no doubt that your prayers, your positive thoughts, well wishes and support carried me through this challenge….and will help me through each future challenge.

#gameon

PS stayed tuned. Many of you have asked me what you can do to help me. And I’ve got some exciting news coming soon!

Cancer is an a**hole

I haven’t written anything in a long time. In a really, really long time. And I’ve missed it because I love writing.  Writing has helped me process my cancer diagnosis and its impact on me, my husband and our kids. It has helped me grieve the loss of my parents, as well as my naive belief that I am immortal. It has helped me transition from being a full-time working wife and mom to a stay-at-home mom with cancer.

I started writing because I had all these big feelings I had to get out.   Writing had always been a dream of mine, so while I loved it I also needed it.  My first blog was a version of an email I had sent to friends and family after I received my diagnosis.  The blog continued on as a way for me to provide updates on my treatment and prognosis. Sometimes I had so many emotions I thought I would burst and writing them down was my only release. One of the most difficult posts I ever wrote, I typed out on my iPhone poolside while on vacation. I quite literally had to get the words out, the feelings out.

At some point, it morphed into more than that.  I started writing because I found I was reaching others who were in my shoes, or that of my husband or our families.  I was able to touch people and it became a way of making sense of what was happening to us.  While the reasons shifted, what remained constant was that I had an outlet for all the emotions I had as a 42-year-old wife and mom who received the news she had an incurable cancer.

Over time though, I found myself writing a little less often.  The days flew by in a blur of family and homework and taking care of myself  – and I convinced myself this was a good thing. It meant I was too busy to write. That I didn’t have any of those “big feelings” to process anymore.  That I was doing just fine.

Amazing how hearing bad news can bring it all back.

Those who follow this blog know how fiercely I guard my “zeros”, zero being a negative M-spike, one of the many things they test for in the monthly bloodwork of a myeloma patient As a reminder, here’s a simple-ish way to explain that I found online:

“The way your body fights infection is with antibody proteins (Igs), which are produced by normal plasma cells. Myeloma is a cancer of the plasma cells in the bone marrow. In multiple myeloma, the plasma cells produce an abnormal protein called monoclonal protein, or M protein. A large peak, or M spike, marks large amounts of M protein.”

Simply put, it measures the BAD protein in my blood.  And for 32 months now, that bad protein has been nowhere to found.

However, last Friday night at 6 pm, I answered the phone to hear the voice of my oncologist.  Now I adore my oncologist but it didn’t take me longer than a second or two to realize he wasn’t calling just to check in or tell me to have a good weekend.  Two days earlier I had my monthly bloodwork done.  This could not be good.

What he told me – I think, the call was a bit of a blur – was that my M spike this month was .03.  Pretty small but it was something. It was no longer nothing. In my haze I remember him telling me that he wasn’t worried.  There are so many new medicines available to us now and that he is completely confident we can get this back to zero.  We would run the tests again and come up with a plan. Again, it’s all a blur.

And this all may be true – IS true.  But I still couldn’t quiet the voices in my head.

What did this mean?  Am I no longer in remission? Is this considered a relapse?

Is there any way this could be a mistake?  Why was this happening?

Am I going to die?…..

I cried a lot for the next few hours, hell the next few days. As I usually do though, I had my pity party and then pulled myself together.  Myeloma patients live with an M spike much higher than this for YEARS. Many would be grateful to have .03! It was one test and, as my nurse always reminds me, you must look at trends not one test alone (it’s worth mentioning, my other numbers looked good, one in fact lower than the cycle before).

We would figure this out, damn it. My husband, ever logical in his approach, spoke to my doctor and was much more reassured than he was when I had first called him sobbing with the news. I reminded myself that my medical team and I had known we were taking a risk when we decided to adjust my treatment plan because one of my medicines has been kicking my stomach’s ASS on a regular basis. And while I consider myself mostly lucky in terms of side effects from my medicines, this GI stuff was becoming a fairly big quality of life issue for me. Given my track record, we had felt it would be okay to tinker a little bit. So we moved my medicine around. Instead of 21 days a month, we moved down to every other day each month with a two-week break.  And what we’ve now learned is that taking our foot off the pedal, even just a bit, apparently won’t work for me.

Cancer is an assholeBut I also got mad at myself for letting my guard down. I know cancer is an a**hole but I made myself vulnerable to it by thinking I had this all figured out.  Each month I am on pins and needles waiting for the results to come back and always grateful (and still the teeniest bit surprised) when I get the news that I am in the clear that cycle. But I can’t lie… each time I did get just a little bit more relaxed.  Thought I could exhale maybe just a little, little bit more. I can’t make that mistake again.

So, what happens now?  Well, first I finish recovering from the flu that decided to strike me two days after all this went down (did I mention that cancer is a f****r???  Sorry to my mother-in-law who religiously reads this blog but seriously, NOW is when I need a reminder of  what an awful immune system I have??).  I couldn’t go sooner because being sick can skew the results.

Depending on what the tests show, we determine next steps. I have been very responsive to the medicine we played around with, so we may decide to hit that hard core, full dose again and see if we can get back to that zero.  We may instead choose to start with a new drug altogether.  While I have been always been resistant to this because I have wanted to keep as many drugs in the arsenal as long as possible, a part of me does wonder if a new cocktail might be gentler to my system. As my doctor reminded us, there have been four new drugs launched for myeloma since my diagnosis. This is incredible and maybe there is one that is a better fit for me.

All of this has been a gut punch.  As any cancer patient will tell you, fear is always lurking there, right under the surface, especially when you have the type of cancer for which there is (currently) no cure. Each time a muscle hurts or something feels…off, alarm bells go off in your head.  What’s crazy about all of this is that I felt FINE, feel fine.

Tomorrow I will be retested with the usual battery of tests and a few others. While I have been praying that some lab technician was off their game that day and just totally messed up my tests, I am prepared for the (strong) possibility that’s not the case.  But “epic lab fail” theory aside, I am lucky to have people around me who have complete confidence that this is just a blip. And then…we wait.

Which is where you all come in….  I went back and read some of my original posts and realized that so much still rings true to this day. At the time I wrote..

“And in the months since my diagnosis, writing has helped me.  And on the days when I find myself struggling…wondering about the “what ifs?”….the best therapy for me seems to be grabbing my laptop and finding my voice again.  And using my voice to ask for help when I need it, something I have never been good at doing.  Because I know that when I reach out to my village, I will be blessed enough to be flooded with emails, texts and calls from near and far, saying all the things I know to be true but just need to see and hear again. I read every single email, text and Facebook post over and over and draw immeasurable strength from them.”

So, my village here’s what I need. I need to be lifted again by all of your prayers, well wishes and positive energy.  You are the ones who helped make me (still) the only patient at my hospital to ever have been released to go home straight from the ICU.  The ones who helped get me from 90% bad plasma cells in my body to 0% within just three months.  Who helped give me the fortitude to get home from my stem cell transplant, which was four years ago this week, in record time.  Who helped me to finally, FINALLY get to a zero that stuck after that transplant and keep it for 32 months.  And who will propel me, with your love, support and encouragement, back to that zero.

Exposing your rawest self makes you more vulnerable than anyone imagine. But what I realized through these last few days is this is what works for me.  Writing these feelings down frees me, in small part, of some of this worry.  It reminds me that I am not alone. And provides me with the strength to know that I’ve got this no matter what those tests show.

#gameFingON