A Hopeful Roller Coaster

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A Hopeful Roller Coaster

Just breathe. Don’t take that very simple act for granted. Yoga has taught me that. When my almost 3 year old has a tantrum we often talk her down by telling her to take a deep breath, it works.  And many times over the last couple days I have had to take my own advice because at the moment I am pretty pissed and feel like screaming and stomping my feet. But rather than look like a ridiculous 36 year old toddler, I am making the effort of taking a deep breath, slowing down, being present and keeping perspective. But cancer you still suck.

If I could use every expletive without offending my Dad I would (he often reads my posts before I publish them and asks me to think about using a different term other than some of my favorite descriptive 4 letter words). But right now I am bullshit. I am angry. A couple weeks ago we had to come to terms with the fact that the chemo my dad had undergone for the 6 months prior did not give us the positive results for which we were hoping. That news sucked. And the news we got on Friday sucked more, and it was twofold.  Firstly, we were seeing the slow progression of his PSA increasing over 3-4 months, but in two weeks time it has now doubled, further proving that this aggressive cancer isn’t backing down. This is bad news A. Worse news B:  After working with innovative research partners in reviewing his genomic cancer profile and thorough molecular biology, the outcome of the
analysis said that there is no known chemotherapy that will work.  The report concluded as follows:therapy-results

My Dad received this report on Thursday and his oncologist had him come in early Friday morning to discuss it in detail. After the appointment my parents asked if we could meet for lunch. The poor waitress at Joe’s probably didn’t know what to do with us because as they told us the news, there sat my mom, dad, Laurie and Karen crying at the table. I wasn’t being stoic, I was furious. I’ll channel this anger in some way, but for now it’s one way I’m dealing with this news. Everyone else is pushing through with tears, hope and distraction.

At this moment, I’m not focusing on being sad; I think I’ve been preparing myself for the inevitable (we all die someday).  I’ll be sad when that happens, but for now I’m keeping reality in check—I have tried to maintain this since March when we got the news of stage IV metastatic prostate cancer; we need to keep on living, cherishing every moment.  I have been doing that, I am very fortunate that I work for a company, a boss and with co-workers that value family and allow me the time to work from my home office where I can pop over and see my dad and mom on a moment’s notice.  I pack up the kids, pick up a medium Dunkin Donuts coffee for my dad and schlep over to their house at 7:15 in the morning, often thinking that if my folks had a tough night crying in each other’s arms, that the innocent smiles of my 1 and 2 year old will help them forget that cancer is clouding their mornings. And secretly I am soaking up every second of spending time with my dad while I can. We don’t have to talk; just being there makes my mornings better.

Just being there – being present – not taking this time for granted. We can sit and dwell on this awful news or we can keep on living. And that is what my dad has chosen to do. After leaving the doctor on Friday facing his mortality, my dad has not given up. When he questioned if the life expectancy is only a year, his doctor and nurses said that he’s not the typical patient. He’s stronger and healthier than most, he’s staying on top of any and all avenues that can be explored, but mostly he hasn’t given up hope or the will to live. I think some people given this news would say “screw it, since nothing is going to work, I’m going to give up.” Well not my Dad. And from that I need to turn my anger into hope.

This is where I am struggling and need to move past. But I need to voice this. What kind of god gives an awesome human being cancer? Or hell, here, have 2: a rare incurable blood cancer and stage IV metastatic prostate cancer. That’s just not fair; he has the fighting will to live and you, god, say there is no treatment that is going to work? WTH?! Born and raised Catholic, I went to a private Catholic college, both of my children are baptized; I really truly believed in God and I had a relationship with Jesus. Now I’m not finding any comfort from either of them, and not only am I angry at said god, but how the can I believe in something that has done this to my dad? Faith is God? I’m just not sure. Faith in Science? I still need to be hopeful. And my father, the advocate for faith in science still hasn’t given up that hope. So he must foster that will to live from somewhere, and my guess is not his fear of dying, but his love of living.

And this is where I, again, will ask all of you to make that effort to be present in your life with those that you love and truly appreciate all that you have. You don’t have to have cancer or know someone that does, because the truth is any of us could get hit by a bus tomorrow. So live like you are dying, don’t have regrets or look back on a time that you wish you had spent with someone or doing something you loved.

Don’t get me wrong, there are days that it’s hard for me to keep this perspective. It’s easier to scroll though the mindless newsfeed on Facebook, complain about the tedium of 6 loads of laundry, or some other insignificant crap that has consumed my time, but more often than not, I really do try to live and be happy. I am now realizing that through all of this it’s my dad who is the living breathing example of that. So let me apologize in advance if I don’t seem all that empathetic to your current life “crisis” that can be fixed, changed, moved past or put in perspective. Just chuck it in the f*ck it bucket and move on.  You are alive; if you are not happy do something about it.

Traveling makes my dad happy. I’m sure many of you have seen his posts traveling all of the country and world doing his advocacy work. We have often asked him to stop traveling because he is susceptible to all sorts of disease riding around in a germ-infested vessel (read airplane) and surrounding himself by thousands of people at conferences, shaking hands with someone who could have a cold. And for some time he did limit or stop travel all together, but he knew that he needed to be doing this advocacy work as it was and is part of his own treatment plan. At his talks he often says that he’s not doing this for any altruistic reasons, like saving humanity.  He’s doing this so he can save his own life, well Dad, it’s a pretty awesome byproduct that in doing all this work in an effort to save your own life, you will be extending and saving the lives of others.

He slows down when he needs to, to recover, to rest and to relax. That’s part of living too, self-care. So this also means that just because some molecular analysis says that there is no known chemotherapy that can beat this aggressive cancer, this doesn’t mean that he’s given up on finding one that can prolong his life. Scans will be done in the next couple weeks to see the status of the tumors and we’re hopeful that nothing has spread to the soft tissue (like liver or lung) as there was no previous indication of that. The plan as of Friday, which will likely change because it always seems to do so, is to go through a wash-out period, coming off all chemo, drugs, medication, everything.  A new chemo will start in November followed by radiation, and a potential clinical trial come January.

Why go through all this if nothing is proven to work?  My dad’s response is this: if the chemo slows the progression at all, this gives him more time to breathe and researchers more time to come up with a treatment that will work—that will save his life. If that’s not hope, I don’t know what is. Hope is the desire for a certain thing to happen or grounds for believing that something good will happen.  This is the same thing as setting a positive intention every day.  Rather than saying I don’t want to be sick anymore, we state it in the affirmative, saying I’m healthy today, so I’ll ask this of you as well.  Extend that hope and set your intentions for your day, and feel free to send any of those positive vibes this way.  Breathe in hope, breathe out despair, inhale in health, exhale disease, basically inhale the good shit, exhale the bullshit.

We’re in this with you Dad, let’s enjoy this roller coaster ride.

The Daunting Derailment

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scary coaster

This fight started back in March when we learned all we needed to know about stage IV metastatic prostate cancer and the uphill climb my dad was going to endure.  Over the last 5+ months a lot of people have asked how my dad’s doing, and my typical response is something along the lines of, “he’s fighting, the side effects from the chemo have been brutal, but we’re all hopeful and anxious to hear that it’s working.”  It’s been a waiting game as the protocol is to let the drugs work for 6 months before running tests and scans to see where everything is.  To be honest, the timing is one of the hardest things for me to understand. Why do we have to wait so long to get any results?

Well, Tuesday my Dad went in for his last infusion of the 6 cycles of chemo and finally got some results—that suck. The chemotherapy didn’t work. The cancer has progressed to a more aggressive type called metastatic castration-resistant prostate cancer (mCRPC). This also sucks. We knew that there was a good possibility that this would happen as the stage of my dad’s prostate cancer has a high chance of relapse; unfortunately we didn’t expect this to happen for another 2 years or so.

My parents were blindsided when they met with the doctor and heard this news.  A text came out to Laurie, Karen and I asking if we can hop on a conference call.  My initial thought was that maybe they had some great news to share because the last time we had a conference call they told us that he was having such a great response to the chemo since his PSA was knocked down from 250 to 5. Unfortunately, we got the opposite of that, and my optimism was crushed. I could hardly speak; it’s just too much to process.

Optimism had helped all of us manage the initial prognosis.  Plus the fact that the pain in my dad’s spine had alleviated significantly which lead us all to believe that the tumors in his bones must be shrinking.  We’re still hopeful that this is the case.  Next week he’s getting a CT and full bone density scan that will show the results.  The results we got Tuesday showed a rise in his PSA number.  And this is what confirmed the chemotherapy and hormone therapy failed.  His PSA was monitored during the course of treatment and the last three tests showed the number was trending up, when it should have been staying put or going down. Insert expletive.

So what’s next?  We’re working with the finest doctors, researchers and advocates possible, and now it’s a matter of finding the best care plan that will extend my dad’s life.  From what we’ve been told, there are a lot of treatments for this aggressive type of cancer.  What bums me out, aside from this cancer shit, is that the chemo has to be aggressive too and I just hate to see him sick again. Funny thing is, that this brutal toxic treatment he’s already undergone, couldn’t defeat my dad’s head of hair either—it’s fallen out everywhere else which is a riot because that melon of beautiful hair has stayed put.  But thanks to everyone that sent the wacky hats and cool caps.  Bring on the next round, his head is ready! Ha.

All the research I’ve been doing since this news gives a pretty poor prognosis. But what does Dr. Google know?  My dad’s oncologist isn’t one that gives a death sentence (or optimistically, a life sentence). She said to my parents that we are going to take this one year at a time. There was another oncologist that had little bedside manner and frankly stated that my dad would get 2 years, one good one and one bad one; I don’t want to believe that we are already half way through that good year.  But I also know that that doctor didn’t know the fighter that my dad is.  And after hearing this awful news, my dad’s disposition is unwavering; he’s going to continue to fight and anxiously awaiting the next course of chemo.  And we’re right there next to him cheering him on and cherishing every moment that we have together for the next year or 10.

I was planning on ending it there, but I need to call out how scared we all are.  I know my dad must be too.  There is the daunting reality that we might have only a year (that no one wants to talk about) and this is terrifying.  I am hopeful that we have more than a year; I know my dad and he has a lot more fight in him and a lot to live for: he’s going to be around to see his grandkids grow.  I want him there to love and shape my babies; I don’t want him to be a memory for them.  This said, I’m making the effort to love every minute I have with my dad, and my kids will too.  I’m not going to look back and say, I wish I spent more time with him.  Nothing is more important, and it’s pretty amazing how quickly life can be put in perspective.

In advance, I’d like to thank all of you for reaching out and joining #TeamWhelan in this fight.  Your support keeps us all chugging along.  We do try to stay positive and optimistic, but there needs to be some balance so there are moments or days that we crumble and cry and can’t keep our chins up and stay positive; it’s a natural way of dealing with all of this.  So I personally want to thank my husband, family and friends for their patience.  This is heavy shit, and a lot of the time I don’t know how to manage it or talk about it, that’s why putting pen to paper (or fingers to the keyboard) helps me process the worries, keep perspective and ultimately reciprocate the love and support I’ve received from my parents.  We’ll keep you posted on the course of action, thanks for reading and sending the encouraging words and healthy vibes our way.  We are not giving up.

 

Hitting the Moving Target

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Over a month has passed since stage IV prostate cancer struck our family.  This is my rollercoaster (1)Dad’s battle to fight, but we are all on this same emotional roller coaster with him, so that’s why I say that it hit our family.  We appreciate that so many of you are part of this journey too.  When I posted Another Bombshell Drops I never would have imagined the incredible outpouring of love and kindness that came our way.  It’s unlikely that we would be as optimistic as we are without your positive energy, loving support, healthy vibes and prayers.

The first 3 weeks of not knowing what was going on, then coming to terms with a shitty prognosis, and seeing the sheer pain that my dad is in has had us all a bit unstable.  Put it this way, I didn’t know when or what would make me cry.  Telling my dad’s story to my best friends left me numb at times and hysterical at others.  The other night I woke in a panic and found myself texting my dad at midnight, for no good reason aside from I needed to know he was there.  I try not to worry, I just couldn’t shut it off and found myself inconsolable lying in bed next to my husband. I think it was 2AM when I finally fell asleep.  Those nerve-wracking nights affect my whole family. My mom doesn’t sleep much being worried about her husband, and my dad, day after day, night after night cannot forget that initial prognosis that told him his life would be shortened.

I’m not sure if I thanked my husband that night, I remember apologizing because I couldn’t stop crying, but there he was wiping my tears and reassuring me that everything was going to be okay.  So many of you have been that positive resource, telling us that everything is going to be okay, and “if anyone can beat this, it is your dad.”  So, I can’t begin to thank you enough.  And I’m starting to believe it.  Not only because I know my dad and that he is stronger than these cancers, but I need to believe that to get through these tear-jerking moments.

That following morning I went to see my dad.  In all of this, he’s been our strength too, and this 36 year old, just needed her Daddio to tell me that everything was going to be okay.  This is all part of his treatment plan, his undying optimism.

AfteIMG_3528r the diagnosis and prognosis got out there in the world of social media, a deluge of
emails, comments, cards and phone calls came through to my dad as well.  So many people are fighting this battle with and for him.  Friends, colleagues, fellow advocates and doctors from all across the world have all reached out asking what they can do to help.   He got a call from a top doctor at John’s Hopkins who learned so much about my dad and his cancers in such a short period of time, my dad has never met the man, yet he is eager to join #TeamWhelan. Doctors at Dana Farber are stepping in as well and the plan is underway.  Again, thank you, you are the people that are going to extend his life.

The hormone therapy is delivering results. Quick and dirty – “PSA” is an indicator of prostate cancer, a normal person’s PSA is somewhere between 1-4. Six weeks ago my dad’s PSA was at 250(!!). After only 3 weeks on the hormone therapy his number dropped to a 5!  Incredible—this offered the hope that we all so very much needed.  And bonus side effect, his IgM – the indicator of his blood cancer – is the lowest it has ever been!  If this has a direct correlation to the hormone therapy, then that would be pretty fantastic for other WM patients in treatment, but that’s too soon to speculate.  So I’m going to say something somewhere is stepping in and saying “Hey cancer 1, you chill the eff out, so we can focus on cancer 2.”

The treatment plan has been an adventure in and of itself.  I’ve tried to give an update on the actual plan but no sooner do I write it does it change.  For example, last week my dad was supposed to start chemotherapy but after seeing the results from the MRI the week prior, it showed the lesions on his spine needed to be hit with radiation because there was fear of impending nerve damage from the tumors. So the course of action was to forgo chemo for the moment and meet with the radiation oncologist and get that plan moving.  My folks met with the radiologist, and after he reviewed the MRI he said there was space between the tumors and the spine and we should wait on radiation and head back to the original plan for chemo, which as of today is scheduled to start tomorrow (Wednesday).

For many this would be a pretty frustrating process, but the perspective that we’re taking is that this is pretty awesome that each doctor is taking a good look at my dad’s case and not throwing a standard treatment plan his way.  My dad isn’t the standard so neither should be his treatment.  Let me explain further, radiation is a pretty serious treatment.  It fucks with the DNA in your bone marrow; because my dad has blood cancer we can’t go messing around in there, because later down the line if he needs more treatment for the blood cancer, the radiation could inhibit that.

This chemotherapy is intense—and I probably shouldn’t have just googled the side effects.  Aside from feeling like crap after the infusion he’ll likely lose that beautiful head of brown hair.  So we’re going to embrace that with some snazzy hats.  And when I say snazzy, I mean the most obnoxious we can find.  Many of you may know that my dad brings a lot of humor to the infusion chair. You must know about the infamous Guinness bottle?  Or how about the happy socks?

Now you’ll be seeing some silly hats…IMG_3525

We’re all taking it day to day at this point, rolling with whatever emotion presents itself in the moment. The tears are frequent, being worrisome and scared is a reality, but never, ever will we give up hope.

 

 

Another Bombshell Drops

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Another Bombshell Drops

This post comes on the heels of my “Thirties Life Crisis” which at this point seems trivial, but on the flip side, it also puts emphasis on the importance of finding that balance in your life, purging the inconsequential crap and cherishing the happy moments.

I was in the middle of my “What Got me Here” blog post (to be posted later), when I got a call from my parents to meet me in front of my office.  I didn’t even know they were in Boston, let alone outside my front door.  I knew this couldn’t be good, as it was all too familiar to a call I got 8 years ago.

My Dad was diagnosed with a rare blood cancer – Waldenstrom’s Macroglobulinemia (WM) – in March of 2008. The initial prognosis of this incurable cancer was 5 years.  He called bullshit on that, took charge, became educated and has been fighting WM through clinical trials of new chemotherapies, a kick-ass attitude, and a head full of hair.

But these last couple weeks had been particularly tough; the biweekly infusions and a compromised immune system were weighing on him.  He was in a significant amount of pain so he knew something was up and so he went to see his PCP.  After multiple appointments with various doctors at different hospitals across Boston he was finally able to see a specialist as they feared it was another form of cancer. His doctor put some urgency behind getting a biopsy and scans at Massachusetts General Hospital, which is where my parents were prior to showing up at my office.

My heart was racing with the adrenaline pumping through my veins as I took what felt like the longest elevator down to meet my dad in the lobby.  He was pacing, and as I saw him, his face fell and I said, “It’s not good is it?”  His answer wasn’t “no,” it was “it’s complicated.”  That’s my dad, he puts a spin on it—you get some of the shittiest news in your life, and he doesn’t say he’s dying, he says it’s complicated and is ready for a fight.  He asked if I could leave for the day so they could explain all the results on the car ride home.

It’s metastatic prostate cancer.  What the hell is that?  It’s prostate cancer that has spread; in my dad’s case, to his bones and lymph nodes.  My dad described the scan of his skeleton as, “it was lit up like a Christmas tree.” There are lesions up and down his spine, in his shoulders, hips, arms and legs, and a significant concentration at the base of his spine.  Hearing this scared the crap out of me, I can’t imagine what my parents are feeling.

I’m numb as my dad begins to explain the stage of his diagnosis.  From my understanding of this, prostate cancer is graded on a Gleason scale of 1 through 10, whereas you see other cancers described in stages 1 through 4.  Well, Dad is at a 10, so thisfuck cancer motto equates to stage IV prostate cancer.  Which is fucking terrible.

Yep, I’m going to leave that F-bomb right there, because that is the damn truth.  I’ll take the motto from www.fuckcancer.org:  “We are sorry if you are offended or have a problem with the word FxCK!  We are offended and have a problem with the word CANCER!”

So he gets another prognosis – I don’t know how someone can deliver the news that you have a certain time period to live – but it went something along the lines of “you’ve got 3-4 years.”  Which I guess sounded “good” because typically when you hear stage IV cancer you’re looking at a much shorter window.

3054_100984350808_5604779_nTeam Whelan is calling bullshit on this one too.  Call it eternal optimism, denial, whatever you want; I’m calling it hope.  After sharing this news with family and friends, the common thread is: “your dad is one of the strongest people I know, and if anyone can beat it, he can.”  My dad has already said that his new story will encompass that of a two-time cancer survivor.

That’s why he is amazing.  Some people will see this as a life sentence but when my dad told me, he called it a 3-4 year “program.”   Even his attitude from last week has gotten more hopeful, initially it was, “well we’re going to have a helluva a lot of fun these next couple years,” and then today, he says that’s not good enough, we’re going to explore and exhaust every option of getting the best personalized treatment and living longer and healthier than that.

Meanwhile, hormone therapy started last week which aims to shrink the tumors and prostate to ultimately alleviate some of the pain.  Seeing my strong dad wince breaks my heart, I wish I could take that pain away.  Being his daughter puts me in a unique position, because he too, doesn’t want to see me or my sisters hurt trying to cope with the severity of cancer.  So he tries to protect us—that’s what parents do.  Little does he know that his strength, determination and love is so, so, so much more powerful than the fear that we are facing.

I hope my parents know that.  My sisters and I all come to grips with this from different perspectives, but the one thing that holds true for all of us, is that we are in it together and we are a family filled with the same determination that we learned from him.  My mom, oh my Mom.  She’s the heart in all this.  My dad wouldn’t be able to get through any of it without her, in fact, none of us could.  I know she’s about as exhausted as my dad is, trying to stay strong, when I know she’s scared as shit.  That same will and love lives in her girls. We’re going to survive this together and we’re going to have fun doing it.

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Team Whelan: (from left to right) Chris & Laurie Gorecki, Karen & Aaron Hakenson, Jan & Jack Whelan, Patti & Matt L’Heureux  (Not pictured, 6 grandchildren: Catie & Maddie Gorecki, Victoria & Colin Hakenson, Norah & Robbie L’Heureux)

Embracing my Thirties Life Crisis

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Embracing my Thirties Life Crisis

At 24 I was in the midst of a quarter life crisis. One year out of college with a degree in philosophy (still trying to figure out what to do with that); I was waitressing at a breakfast joint I had worked at since I was 14, taking photography classes at a university in Boston, and I was in love.  My best friend and I spent the summer as “groupies” road tripping across the country to follow our favorite band, and I spent almost a month in Ireland bumping from hostel to hostel on to the next adventure.  This quarter-life-crisis doesn’t sound all that bad until I came down off my care-free-adventure-seeking-spontaneity (and ran out of money) that I found myself looking for my first real job. Which is tough when you’re still trying to figure out what you want to be when you grow up.

shit together ee

My boyfriend had his life mapped out and was on his journey to becoming an architect.  We moved to Providence so he could get his masters in architecture and I found a new restaurant to waitress at while I searched for my “grown up” career.  Eventually I ended up at a job fair in Boston and eventually landed a job at a non-profit in Boston.  Fortunately the job was great, unfortunately the commute was tough.  With the relationship strained, I ended up moving home to my folks, leaving my boyfriend to his architecture degree.

Fast forward a decade and I just welcomed my thirties life crisis with open arms.  I love my life, most of it anyway.  I’m happily married to a guy I met a bar, and a mom to Irish twins (well they are 14 months apart, details, details).  We don’t own a home, we’re in significant debt, but man, are we filled with smiles and memories.  My husband is my best friend and adventure partner and we’re having fun on this challenging journey called “life” together.  I love being a mom, and I’m good at it.  I loved being pregnant too, but that’s another story for a later time and might explain why I had my first two cherubs so close together.  There is blog post after blog post of the challenges of being a mom whether you are a stay-at-home-mom or a corporate-mom.  I’d love to find the balance between the two, which brings me to this blog post. Most of my paycheck goes to my nanny. She is absolutely wonderful, I come home from work and my kids have smiles on their faces, their diapers are clean and the bellies and hearts are full.  I am so grateful for her.  But I miss my kids.  When I was on maternity leave with my first I couldn’t wait to get back to work. I think that was a combination of missing my old life (that I would never see again) and navigating the new life of motherhood.  Now I’m not so sure I should have rushed back.

These days I sit at my desk, part of a great marketing team, planning my next round of emails to deploy from my marketing automation platform—yes that’s what I did with my philosophy degree.  This is that same company I spent 4 hours commuting to and from Providence over 10 years ago, and in fact, this is the company that took me out of my quarter life crisis.  But alas, I’m back to that place of uncertainty and what’s next.

My boss is a dad, so he is incredibly understanding and generous when it comes to my flexibility at work. Whether it’s having to leave early because the babysitter is sick, or working remotely because the nanny is stuck at home in a snow storm, he is empathetic.  I’m fortunate for that, but it also makes me feel like I am sucking at work and I’ve got a weekly case of FOMO because I’m in the office less than my peers.  Plus when you’re not as passionate about marketing automation and campaign analysis as you are yoga and taking pictures, it makes it hard to be awesome at your job.  And then there’s the double edged sword: I’m sucking at home too because I am missing out on precious moments with my babies.  I was devastated when my nanny texted me a couple months back telling me that my son had taken a couple steps across the living room, sad that I missed it, regardless of the fact that he took those same steps to me as I walked through the door that night.

How do I strike a balance?  I can’t answer that yet, but I welcome you on my journey of trying to figure it out.  Should I become a stay at home mom? Event planner? Photographer? Yoga teacher? Midwife? Or blogger?  This “life-crisis” is going to be a helluva lot different from the one 12 years ago, because this one I am going to embrace, rather than dread.  It’s not going to be easy, but the hardest part is taking that first step.  So here we go!