The Relentless Roller Coaster

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The Relentless Roller Coaster

Six weeks back, which now seems like an eternity ago, we threw the most epic bash for one incredible man to celebrate his life.  I planned to write a whole post about that unforgettable party, but a week passed, I went to Disney World with my little family of 5, and the night I was flying home, my dad was admitted to a hospice house.

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Lots of laughs at the Roast and Toast

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Endearing glimpse into the first night at the hospice house

He spent 8 days there.  Eight days I’d like to forget, but won’t and will appreciate. He arrived on a Thursday night in a pain crisis. Friday he was talking to the doctor about the next treatment that will fight his cancer. Friday night my dad faced his mortality in a night filled with anxiety. Saturday he was medicated. When we were with him Saturday afternoon we thought he was taking his last breaths, they told us to read the pamphlet on “signs and symptoms of death from 6 months to hours of end of life.” Then Saturday night and Sunday he was lucid and spent some very special time with our closest family. Monday was a bad day, Monday night my 7-month old learned to crawl.  Tuesday was good, my oldest baby went to preschool and Dad was in a better place in his mind and body (that’s the yogi in me). Wednesday was another scary day. Thursday was better and we got to tell Dad he was going home. Emotion city. Friday—JAILBREAK. Dad came home. Whirlwind ensues.IMG-4606

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Jailbreak! Bampie is going home!

Recalling that first weekend home, I can’t actually. I know we were together, perhaps staring at each other, or crying, or eating, or drinking, or worrying, or speculating, or listening or laughing.  All of that has been going on since Dad came home.  We visited cemeteries and bought plots, toured funeral homes, visited churches and talked to priests, planned the second celebration of life.

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Guys. We have no idea what the hell is happening. But it sucks and I wouldn’t wish this on my worst enemy. My mother is an absolute effing saint–she is the ultimate caregiver, always by his side.  This is so incredibly hard on her too, this is her best friend.  I’m not sure if I have mentioned this before, but they’ve been together since they were like 14, married at 19 and 21.  They have spent their whole lives together.

Laurie and Chris have turned their world upside down to care for my parents in their home, our newfound base camp. We are there all.the.time.  Navigating through every aspect of our lives has been a challenge—our individual families, our careers, our health, our relationships, we are sucking at all of them but trying our damnedest. Dad too.

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Chris taking Dad out for a spin

He is drawn to his phone. But because his clarity is a bit fogged, he has this immense anxiety to respond. And at times he tries, and at times he can’t.  This is the man who is my father. He is a communicator. And this effing cancer and pain is taking that away from him. Don’t get me wrong, he’s still telling stories and laughing and lucid. But he’s also incredibly confused at times, and he knows it because he’s a brilliant man, he shakes his head and says “my brain just isn’t working right now.”

The biggest fear, which I hate believe is the inevitable, is that the cancer is further metastasizing, growing, causing more pain and ultimately affecting his brain and other organs. And since he is in hospice care there won’t be any more scans or treatment.  Although my Dad would hop on the next chemo train if he could.  It’s just that at this point the chemo could be more detrimental to his health, than no treatment at all. He’s not okay with this, he just wants to keep fighting and stay alive.

Where are we? Together. I guess that’s our secret. This little #TeamWhelan that once started as a party of 5 (“The Whole Family” Dad called us whenever we’d all be together when we were teenagers) we have been inseparable. And we couldn’t do this without our husbands, children and extended family and friends. My Dad can’t be alone at this point, which we’re okay with because we are spending and treasuring all this time together, rotating our schedules, managing the VNA and CNA, trying to give my Mom and Laurie a break. He’s resting a lot, but when he’s up and lucid we’re having awesome conversations and making as many memories as we can.blog family picblog family pic5

 

One night that Dad was on, he gave all the grandkids what we call “Bampie’s Boxes” it’s a legacy box if you will, which contains special things about Bampie.  bampesboxblog

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Song lyrics to Dad’s favorite song “Don’t Worry, Be Happy” | A Whoppee Cushion | Red Sox Guy | Navy fighter jet | Froggie Book | Kazoo | The Original Team Whelan

And Laurie got frogs.  She’s lost her mind.  I’m kidding, the story there is that my dad’s favorite animal growing up was a frog. He lived on a pond and would catch them and put them in his pockets.  When I was growing up, he was always saving the frogs that would get caught in our pool filter. And now, truth be told, the frogs “chirping” is quite serene, so welcome to the family Freddy and Betty Gorecki.

None of us know if this is it. Or when this might be it. Honestly, I left there today in a rush to get home and didn’t say goodbye to my dad (he was on the potty so I gave him privacy—regardless should have waited). Driving up the road I thought, “was that my goodbye?”

Here’s the deal, when he was in hospice we didn’t think he’d make it to Halloween. Not being negative nelly’s, we are as hopeful as he is, but shit wasn’t looking good. (Dad would want me to edit that). So Thanksgiving? Who knows? But Jack being Jack, this man will not stop fighting.

And honestly, admitting this is hard, I’ve asked him to. He doesn’t need to fight anymore. His first cancer should have killed him like 7 years ago. And he laughed at that. Twelve years later, and he has fought so hard, tackling 2 cancers.  I bet we could contact the Guinness Book of World Records and say this man had the most consecutive weekly chemo infusions over 11 months (just one of the 12 years of treatment). And most recently just 2 quick (read grueling) jaunts to Germany for treatments not yet here in the US.

He has literally done everything, and now hospice is his best hope.  Studies have shown that hospice care can extend your life.  When we engaged them 2 months ago, our intake advisor said that we weren’t ready for hospice, and we weren’t but I’m glad we learned about it when we did.

What does he say to me when I say it’s okay to stop? He cries. He wants answers. And frankly I know that he doesn’t want to die or leave my mom. Or us, or his grandkids. And this is heart wrenching.

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So we remain by his side, holding his hand, rubbing his feet, feeding him soup, sleeping in his bed, helping him to the bathroom, laughing at lunch, crying over what is, smiling at the kids, just being and cherishing every moment; riding this relentless roller-coaster with our eyes open, fully experiencing every incline, turn and drop.

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Roast and Toast: Jack Whelan

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Last week, during one of the trips into Dana Farber and Brigham and Women’s, my parents had an appointment with the pain and palliative doctor and another with his oncologist and had some very real conversations about quality of life and life expectancy.  Now no doctor wants to give a set time, and frankly we don’t want one, but one bit of advice that they did offer up was that now is the time to be living.  Doing the things they love, enjoying and celebrating the time we have now.

So you know what we are going to do? Have a huge party.roast dad

From my understanding, my dad has touched so many lives.  He’s got loads of friends from across the county and across the pond, and we want to see or meet you, while my dad is here.

My dad said something to me last week and my heart broke for him. He said that he feels like there is a huge party to be had that he won’t be invited to.  What I think he means is that there is still so much life left to live and this damn cancer is taking him away from it. So our response to this is to have an actual bash to celebrate the life we have now.

And we want you there with us.  You’ve been following this journey.  You’ve seen the fight in this man, you’ve experienced his optimism, you’ve laughed with him, you may have heard his talks, you may have cried with him, you may have treated him, you may have argued with him, you may have shared a special moment with him; he may have touched your heart.  In whatever capacity it is that you know and love my dad, share that with us and come celebrate with us, and him.

Rather than calling this a living funeral or a celebration of life, we are going in a different direction and having a Roast and Toast. I know there are a lot of funny stories to be shared.  While I’d like to assume this will be PG, we can’t guarantee that.  With that said, we’re making this an adults only affair.  So book your sitters and come celebrate!

There will be an open mic, but if you want to have a slated opportunity to speak please let us know beforehand, we’d love to hear from you!

Additionally, I am happy to set up a room block at one of the nearby hotels (less than 3 miles away).  Please respond to the poll on the facebook page or message me directly, otherwise hotel options will be listed on the event page.

Lastly in order to plan accordingly we need to know who’s coming, this said, please RSVP on the facebook event page, or directly to my mom Jan (978.808.1715) if you aren’t on FB.

We’re so very excited to celebrate my dad, please join us in roasting, toasting and honoring this awesome human.

Dear Cancer:

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Dear Cancer:  FullSizeRender (6)

Stop picking on my Dad.  You are messing with the  wrong guy.  He doesn’t deserve this.  He is fighting so hard and you are relentless.  Ease up would ya? Stop hurting him. Stop hurting my family.

You have proven to be difficult and aggressive.  We went back to Germany to give you another fight, and you take us out at the knees and failed to respond. Well, my dad is tenacious and tougher than you and he’s going to keep on fighting this incessant battle. 

You have taken too many lives, caused too much pain and anguish.  Enough already.  This is me sending you a big FU. I mean this with deepest sincerity. 

Eff off, Patti

Results from the first trip to Germany showed that the treatment in early June didn’t work. It didn’t break down the cancer as promised. Why? We can’t say with 100% certainty; all we do know is that this metastatic castration resistant prostate cancer is aggressive.  The science made sense, but there is the thought that previous therapies could have gotten involved and interfered with this nuclear medicine. That is only one doctor’s opinion, so take that as you will.  Since no therapies took place between the first and second trip to Germany, they decided to give it another shot. Will this work?  We don’t know, and we’re not going to wait to find out.  Time is of the essence. My dad’s team of oncologists here in the States already have the next plan in motion.

Don’t get me wrong, there is still some hope that this nuclear therapy may work, but other factors have come into play and he’s decided to move forward with therapies available here in the U.S. rather than heading back to Germany for the third potential treatment.

76460.jpgDespite the smiles on our faces, this trip to Germany was a bad one for my dad.  Firstly, the pain that he is living with is debilitating, so the travel alone was brutal.  When we see my dad for a couple hours here and there, he puts his best foot forward, and can do that for a short period of time. But spending 24 hours together was a very hard reality to see. Walking hurts. Sitting hurts. Laying down hurts. Being hurts. The physical pain is only half of the equation.  The emotional pain was something entirely different.

He was told that there is tumor activity on his liver. If or when this cancer spreads to the visceral organs that’s when the stuff hits the fan. My dad didn’t want to tell my mom over the phone so he held onto this information by himself for 48 hours in isolation.  His mortality staring him in the face.  I dropped my mom off at the hospital so they could catch up and come to find out my parents were crying in each other’s arms with this news.

The next day he had another ultrasound to take a deeper look at the liver and come to find out they were WRONG. Unapologetically wrong. Thank you Universe for this doctor’s stupidity and inaccuracy. You would think that with news like this you would make certain that this is in fact true.  Double check, triple check before you tell someone that the looming end is closer than expected.

Let’s get Bampie home.

Back across the pond we travel, we’re surprised at the airport by my sisters, nieces and my little family. So very happy to be home. But the last couple days have been the worst. My dad has never been in this much pain or had this much sickness from any of his other therapies over the last 10+ years. He communicated this to his oncologists here and as I stated earlier the wheels are in motion to get the next treatment underway.

Yesterday he was back at Dana Farber for a few appointments consisting of blood work, meeting with the pain and palliative care specialist and with his oncologist. All this goes down, and so does he.  Weak in the knees, BP dropping, skin color gray. He was stabilized and brought to the ER. We’re not entirely sure what caused all this, so he was sent for an MRI to ensure that there were no tumors compressing the nerves on his spinal column. The initial read confirmed that they were not.  After fluids and steroids, he was discharged.  My parents were back at the hospital again today for more scans to lay the groundwork for the next therapy.

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#TeamWhelan at Brigham and Women’s ER

So this is where we are.  And who knows, something could change. Updates are always changing, so as often as we try to communicate, half the time we don’t know what to say.

I’d be remiss if I didn’t address the additional crap that has happened this past month, on top of these last 2 weeks.  Cancer has taken 2 very very cherished people from this earth. Greg. You, my un-blood Uncle, have been one of my most favorite human beings on this earth. I really don’t / can’t / won’t believe you are gone. Greg was my dad’s best friend and a huge part of our family.  So here’s a big FU to pancreatic cancer.  And Lori, a dear advocate friend of my dad’s and many. I didn’t have the pleasure of meeting her, but from how heartbroken my dad is about her passing, I can gather that her light has touched many lives and was an incredible friend. So FU to metastatic breast cancer. Rest easy Greg and Lori, cancer can’t hurt you anymore.  And… my parents had to put their 16 year old cat to sleep 3 weeks ago, that’s just sad too.no restrictions

Being the person I am, I can’t close in sadness. I really try to find the light and positivity no matter how hard it is to locate. So yes, Germany was a tough trip, but I will forever cherish that time cruising at, oh say 150 kilometers down an autobahn with my dad and mom.   I’ll never forget those conversations or that special time we shared.  And there will be more moments like this.  Make these moments and keep cruising.

That sign right there means “no restrictions” as you drive on an autobahn, so I offer this to you Dad, your fight has no boundaries, no limitations, no restrictions. I can’t love you enough for that.

 

Herzlichen Glückwunsch zum Geburtstag, Papa!

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Happy birthday Dad.  You look this awesome because of the happy, humorous and love filled-life you’ve been living.  Yesterday morning I packed my three little cherubs into my minivan and headed over to Mimi and Bampie’s to bring Bamps some birthday hugs and a coffee. It was an awesome morning, not only because we got to wish my dad a happy birthday but because for the first time in months my dad is moving about, able to “run” around and play on the ground with my kiddos, and feeling so much better; in his words, a switch has flipped.

The last 2 weeks were a completely different story, and that’s why there hasn’t been much of an update since our return from Germany because we really didn’t know if this worked.  Secretly we were all hoping that my dad would come skipping out of Zentralklinic, the hospital in Germany, but we got the opposite response.  My dad was in so much more pain leaving Germany than when we got there.

Now this could be for a couple reasons, it could have been because of the incredibly uncomfortable beds shown hereFullSizeRender (3), it’s pretty safe to assume that this teeny twin mattress resting on metal bars didn’t compare to his cozy tempurpedic bed at home.  Or maybe the pain hadn’t subsided because the treatment didn’t work—he was expected to see some pain relief shortly after the infusion and didn’t. And this has been our biggest fear, that it didn’t work.  Or maybe, just maybe, this was a flare causing the pain to be worse before it gets better because the nuclear therapy is hard at work kick those damn cancers cells to the curb.

You can look at this therapy in two ways, either that 70% of patients respond to it, or that 30% of patients don’t. Both mean the same, but it’s a frame of mind.  While my dad was meeting with various nurses and doctors in Germany, there was one particular nurse who has seen a number of patients embrace this therapy, and a huge part of the battle is believing that it will work. Well we all know my dad, and being as positive and hopeful regardless of the pain and prognosis, you better believe that he is manifesting that this is going to work.

And sure enough, the preliminary results showed that he did respond to the therapy; and we believe he’s in that 70%.  It’s reported that there was significant uptake.  Now what does that mean?  I’m no doctor, so not entirely sure, but all that matters is that from the get-go he’s already one step ahead because something is responding.  His oncologist said that his cancer is incredibly aggressive, coupled with the many many therapies he’s undergone which have beat up his blood and bones pretty badly, this didn’t deter the doctor from moving forward, in fact the he was so hopeful.  Because my dad’s prostate cancer is metastatic and late stage, he has high levels of PSMA (Prostate-Specific Membrane Antigen).  This therapy specifically targets the PSMA, whereas other treatments are not so targeted. And unfortunately, many treatments are given as a standard of care, not ones that look at the individual patient. So, again, because this treatment is so targeted towards my dad’s specific antigens, it makes sense that the science here is going to work.

I’m not sure if you believe in signs or science or God, but while we were in Germany the Universe was screaming at us. So many things about this trip went right; I hope to whip up a fun blog on our whole trip, but that’s too much for this post.  The biggest sign that we just couldn’t ignore was this: on May 25, the day before we left for Germany my dad was at Dana Farber undergoing his last of the immunotherapy infusions and posted this cartoon and post on FaceBook, “Mr. Whelan, we have yet another therapy we want you to try. It’s called “the wringer”.

 

The night that my dad was admitted to Zentralklinic we were sitting at a restaurant in Bad Berka (where Zantralklinic is located), and Laurie looks over and says, “Dad, is that a <insert expletive> wringer!?!?”  A real life old school wringer was right next to our table (pictured above).  Come on.
FullSizeRender (2).jpgThe day before we were sitting out on the dock at our happy little German home, and two swans and 7 babies swim right up to us; it’s hard to deny that’s not analogous to Mimi and Bampie and their 7 grandkids.

So as always we remain so hopeful. This is the first of three trips to Germany. While my dad was in treatment he met another patient David, from California who was undergoing the same treatment, but he was on his second round.  David’s doctors in California told him there wasn’t much more they could do there, so he ventured to Germany, and a year later is responding quite well.  At the end of July, Mimi, Bampie, Conor and I will head across the pond for round 2.  Then in October he’s back for round 3.  My dad’s oncologists here are on board with this treatment, in fact his oncologist from Dana Farber just so happened to be at the same nuclear medicine conference in Denver with his German oncologist this week.  Coincidence, I don’t think so.

Dad, we’ll take all these signs as the universe saying you are on the right track.  And at the very least your constant humor will get you and us through it.  To say that the food in the hospital was under-par is quite the understatement.  My dad said, if this treatment doesn’t kill the cancer, he thinks the food will.FullSizeRender (1).jpgHerzlichen Glückwunsch zum Geburtstag und viel Glück und Erfolg im neuen Lebensjahr!

 

Freefalling

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scary as hell coasterI find roller coasters scary but I’ve ridden a good number of them. I hate that feeling of anticipation before the big drop and I hate that feeling of losing my stomach. After the scariness is over and the adrenaline settles, that’s when I enjoy the ride.  But this one that we are currently on is terrifying.  If you’ve been following my dad’s cancer story there has been underlying lying theme of an emotional cancer coaster, well the peaks and drops and inversions continue.

I’ve been trying to write this update for months.  I have 3 different drafts with various updates since October.  I have a retrospective on 2016 with hope and optimism for 2017, which doesn’t seem relevant at this point now that we are 5 months into the new year. Every time I write, I get deflated or distracted or something has changed. So here’s another attempt.

All these updates have exclusively been about my dad, and I’d like to start by offering perspective from the caregivers, primarily my devoted mother.  I would imagine that being married to anyone with an illness is tough.  Being married for nearly 48 years to your high school sweetheart with terminal cancer is a whole different ballgame.

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She’s by his side, managing and attending countless appointments, driving in and out of Boston fighting rush hour traffic, figuring out which hospital he needs to be at and what time, navigating the halls between these different hospitals, remembering where the car is parked, all while witnessing the person she loves the most in so much pain; and she does it without question. But 2 weeks ago after countless sleepless nights, my mom was unrecognizable, and she’s not the one with cancer.  My beautiful mom looked and sounded awful (sorry Mom).  And this scared the crap out of me and my sisters.

It was a tough week of emotions and appointments. Wednesday and Thursday they were in Baltimore for an arduous bone marrow biopsy and an appointment with another of his brilliant oncologists, followed by the surgical insertion of a Hickman line back after getting back to Boston on Friday; those three days put them both through the ringer.

From my understanding, a bone marrow biopsy typically takes about 10 to 20 minutes. But imagine this scenario: My mom is in the waiting room in an unfamiliar hospital and an hour has passed; she sits waiting and worrying because no one has let her know that the biopsy is still underway. Little does she know that my dad is still on the table because the numerous chemotherapies over the last several years have rendered his bones and marrow weak, thus making this biopsy a challenge. The doctor kept offering to stop, and my dad fights through the pain, pushing back saying “no, we need to do this.” This takes so much strength and his ability to be mentally stronger than the pain is remarkable.  A lot of people would have given up at this point.

The following day they met with the oncologist who gave the go-ahead and approved the next therapy which will take place in Germany…  more on this in a minute. They fly back to Boston Thursday afternoon to be back at BWH Friday morning for the for the Hickman catheter.  This surgery is an insertion of a tube that put into his chest, tunneled under his skin towards his heart and ultimately replaces the administration of chemotherapies through regular IV, like in his hands or arm—all of which his treatments have been done this way without a port over the last 10 or so years.

He’s never wanted a catheter/port like this put in because he didn’t want the constant reminder every morning that he had cancer.  So when this happened last week it took a toll on him. This port has to be flushed daily, and the dressing needs to be changed weekly. So thank God for my big sister Laurie as she’s has stepped in and has been flushing the lines daily.

Circling back to the caregivers, here’s Laurie. Being the first born she’s always played a special role in our family, and here she’s been forced into a position of care not only for her parents, but for her “little” sisters.  She may be a bit domineering at times, which is not a bad thing, this is only because she has the most caring heart in the world and wants help and fix what she can. She’s also been to a number of appointments, by my parent’s side, holding their hands, crying and asking questions.  The weight of managing all of this (on top of being an incredible full time working mom, wife, sister and friend) would break anyone, but she’s so strong despite what she may think.  I am so very thankful that she has been our sounding board and outlet to cry, and I can only hope she feels its reciprocated.

So these past 2 weeks have been brutal.  One of the days I was at my folks house last week I saw my dad in a different place than I have ever seen. The man who has remained so very very strong was in an indescribable amount of pain and exhaustion.  Seeing him that day broke me. At one point I said to my husband, “I think my Dad is dying.”  And please understand that I am not one to be over-dramatic, it was a scary effing week, but this is the scary truth.

IMG_0993Day 6 at my laptop trying to get this written, enjoying my coffee out of a mug that reads “think happy, be happy” a mantra that I try to live by, so let me find the positive in all this pain. Here’s what’s coming, and what we are hopeful is going to work on extending his life and making him more comfortable.  Please keep in mind that I’m his daughter and not in the medical field in any way shape or form, so this my interpretation of what these drugs or treatments do.

Over the last couple weeks, he has undergone 2 different kinds radiation, the first (Radium 223) was to address the bone mets/tumors living in his hips and on his spine.  The results from that has shown disease regression, meaning they aren’t growing and potentially shrinking.  The second kind is conventional radiation for palliative care, I wouldn’t say that this has worked, but he’s a little bit better than his worst days.

In addition to radiation last week he started undergoing immunotherapy Sipuleucel-T, a regimented treatment where he needs to be in Boston by 7AM sharp for a blood aphaeresis or collection, where the blood plasma then is packed up and flown to Atlanta and basically turned into “super blood” where it boosts up his own immunities, and is then shipped back to Boston by Thursday morning where the super blood is infused back into his body by 9AM.  This cycle will happen three times over the next month.  This is ultimately the reason for the Hickman port I mentioned above.  He and my mom won’t be alone for these appointments, god knows the spend enough time alone together, staring at each other; so as Laurie has been to the first round, Karen and I will be there for the subsequent collections and infusions.

The immunotherapy will work in conjunction with the therapy that will be administered in Germany, the hope is that the immunotherapy will boost his immune system so it will be armed to fight. Firstly, the reason they are going to Germany is because this is a cutting edge therapy that has not yet been FDA approved. Secondly, there are very few therapies available to relapsed metastatic castration resistant prostate cancer (mCRPC) patients.  My Dad has tried the most popular chemo and other therapies available in the U.S. This new therapy coming out of nuclear medicine in Germany looks promising for late-stage aggressive metastatic prostate cancer.

scansI’m still learning about this therapy Lu177 PSMA (lutetium-177-labeled PSMA-617) We know that he will be in Germany for a week or so sometime in June and during that week there are a significant amount of tests and scans that take place before, during and after the treatment is administered.  And when he gets the radionuclide therapy he stays in his room without visitors for 48 hours (I’m assuming it’s because this radioactive nuclear stuff needs to be contained).  After 48 hours he’ll meet with his doctor to review the treatment and discuss next steps. The good thing is that patients typically tolerate the treatment fairly well most commonly leave with only fatigue and nausea as side effects.  Laurie, Karen and I will be heading to Germany in some capacity come June to be there by my mom and Dad’s side, and we are going to make the best of this family “vacation” as it might be our last. This could be the first of 3 or 4 treatments, or he’ll be the rockstar that we know and respond so well to the first treatment that he won’t need to go back to Germany.  So send good ju-ju for that outcome!

So this is what we do, we remain hopeful.  My dad has so much to live for, which is an incredible pressure on him, he’s fighting to stay alive for us.  Dad, I can’t thank you enough for that.  I cherish every minute that my three babies spend and I get to spend with you.  Regardless of the pain that you are in you will still play hide and seek with my littles and snuggle my newborn.  They are going to be incredible little humans because of the love that you give to them. I can confidently speak on my behalf of Karen and Laurie that they feel the same way. And I know this because you and Mom have created a family that is worth fighting for, we are all in this together.  And to Mom, thanks for being the behind the scenes strength that doesn’t get the attention it needs, we couldn’t get through this without you.

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L to R: Robbie (2), Maddie (5) holding Conor (0), Victoria (2), Norah (3), Catie (5) and Colin (2).

A lot of people ask, “what can I do?” My response is this: be there. Show up. Call. Text. Hug. Pray.  I can’t tell you if we’ll be up to talk, but knowing that you are there helps more than you know. If something in your life doesn’t make you happy, fix it or let it go.  Be thankful that this isn’t your story. Going through all this we’ve realized what is important, and have been able to move past what is not.  Life is too short. Cherish the moments you do have with the people you love, make the best of them, say I love you.

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!