Wednesday, January 7, 2015

Straddling the Highs and Lows

Chemo is a necessary evil.

It's sort of like a "good war," if there is such a thing.  You know the fight needs to be fought, but no one really wants to experience it.  There are all these plans and strategies and tactics. Certain drugs work on one front but not on others. Some take a proactive, offensive approach, while others fight the disease in a reactive, defensive state. It can leave you feeling ravaged, exhausted, less than you were before you began. It can beat back the enemy, but you're never sure if it's just a retreat or a victory.

But still, you have to go to battle ever so often to keep some semblance of peace. Even if you know that there will never be a victory.

For the last 7 weeks I've been on an oral chemo regimen called Xeloda.  I take 3500 mg - 7 pills, 3 with breakfast, 4 with dinner - every day for 14 days, and then I take one week off. Rinse and repeat until they decide: 1) It has served its duty in causing my liver lesions to retreat temporarily  3) It isn't working and we have to try a new tactic. Xeloda is a popular drug because it causes far fewer side effects than most chemotherapy agents.  No hair loss is a great bonus. Most people don't get too sick while taking it.  However, I have been experiencing a lot of nausea, fatigue during my experience with it so far.

I have good days and bad. Highs and lows. Some days straddle the line between the two...either I start strong and fade fast, or I struggle to get out of bed but somehow end up staying up late because I'm feeling ok again.

I realize that I'm probably experiencing more of the negative side effects than a lot of people because of the way I straddle that line.  If you know me in person, you know I go until I can't go anymore.  It's my own special sickness, I guess.  Some people may call it "type A," some say it's superhuman, some probably think I'm not quite sane.  I say it's probably all of the above with the emphasis on "not quite sane."  Whatever it is, it is my nature. It's my gift, and it's my tragic flaw.

Everything I've done in my life I've committed to until it drains me, either physically, financially, professionally, emotionally... Piano. My house, my yard. Work. Relationships...

I played piano for years until it wrecked my arm, and i literally had to re-learn how to play after two surgeries and ultimately led to a complete lack of desire to ever play again. But man I loved it when I did play. I lived for the sound. I hung onto notes until I couldn't drip any more sound out of them. I craved the physical pleasure and the emotional release of creating sound from that instrument. But then one day it turned against me. I fought it, but I never recovered.

10 years ago I bought a house that I saw great potential in. I poured all my money into this house. I poured a relationship into this house. I poured hours of volunteer/"mission work" from family and friends into this house and yard. I took a backyard from piles of rubble and kudzu into beds of flowers and trees and life. I fought bamboo and privet and ivy to lay a brick patio (mostly) all by myself.  I mulched. I hand-weeded. I painted. I scrubbed. I refinanced. I refinanced again. All with the dream that I would give it the chance it needed to be great one day even if it caused back pains, headaches, debt, disappointment, anger. I give it my all until I can't give anymore -- which explains my yard's current state of disarray, my interior's disastrous clutter, and my growing pangs of claustrophobia. I love my house because I committed to it, even when it hurts.

I've worked for the same company for over 15 years.  There are days when I hate it. There are days I want to walk out and never look back. But there are days it challenges me, inspires me, and teaches me to never stop learning.  I am so blessed to work for the company and in the company of such great individuals. But for about 12 of those 15 years I did the jobs of 3 people.  I did marketing. I did HR. I did bookkeeping. I did it all. I shouldn't have done it all.  No one should. But I was (and am) so committed that I did way more than I should have. I often feel that the stress I put on myself for so long may have contributed in a way to my cancer by way of inflammation and just constant stress and multitasking. Even now I continue to work semi-regular hours. I still mediate between coworkers. I still stress over deadlines, failures, and whether or not I'm disappointing my team. I work an 8-9 hour day, and then I can't work the next because I did too much. I just can't help it. The lows inevitably follow the highs of the commitment to being everything.

And relationships...hoo boy. That's a whole other chapter for another time.

But back to chemo....
Now that I've confessed my commitment issues, I can see why I am probably having more trouble with this chemo drug. Ever since my diagnosis of metastatic disease, I've been determined to not let it stop me.  I've worked. I've traveled. I've traveled some more. I've gardened. I've been to music festivals. I stood on the White House press podium, and sat in an NPR studio. I've been in a movie. I walked on the track at Churchill Downs. I've met rock stars, and chefs, and bartenders, and winemakers. Not to mention all my Twitter friends. I've sipped and dined and rocked and cleaned and danced and mentored and hiked and photographed until I can't go anymore. Those are the highs. And that High Life is so worth it. And I am committed to sucking every ounce of that High Life while I can.

In those moments and those days, I don't feel sick at all. My soul allows me to feel that way all the way up until the chemo kicks in to remind me to SLOW DOWN, YOU ARE SICK AND I'M TRYING TO DO MY JOB. And then come the lows.  The tears. The nausea. The seemingly unending fatigue. Then I realize that there's that battle again. It's been going on while I've been living the highs. Sometimes, I need to let that battle go on while I rest so I don't burn out.

So rage on, chemo. I'm committed to life as long as I can be, straddling the highs and lows.

Friday, July 25, 2014

On heartbreak, setbacks and moving forward

Many of you may remember that when I first diagnosed with breast cancer, I chose to pursue fertility preservation in the event any cancer treatments would pose a risk to my ability to have children afterward.  You can read about my decision to do so with my then-boyfriend, now-husband over here.

Long-story short on that decision: I'm glad I made it.  As you know, over the next year my cancer spread to my liver and brain, taking me from "Stage 0" or "just DCIS" to Stage 4/Metastatic Breast Cancer.  I was told last spring by my medical oncologist that not only was I in chemically-induced menopause - and will remain there - but that I also could not carry a child using our pre-baked/frozen "maybe-babies."  The bursts of estrogen associated with pregnancy would cause my cancer to roar back, putting me at almost-certain risk of recurrence and/or death.

Even though, I knew this was my reality, it still hurt like hell to hear it told to my face.  It hurt my heart to hear what my brain already knew.  I would never be a mom in the "normal way."  I took a day off from work to mourn, and then got back to my semi-normal life of working, doctor's appointments, scans, traveling, etc.  I "got over it," I guess.  Gestational surrogacy using our embryos was our only option.  Luckily, we have 9 or 10 embryos that are 100% "Kristen + Michael" DNA, and 10 more Kristen-eggs as backup.

Sometimes I would get sad & "pity party" about my situation -- for example,  reading about acquaintances getting pregnant ("again!") or get a baby shower invitation ("That's so great!! I'm so happy for you!!").  It's not that I wasn't legitimately happy for these other women -- I was, I promise! It's just that some days jealousy is inevitable, and I would let myself sink into the darkness of it. But in these times, Michael would be my light: comforting me, reminding me that I would never have to deal with the morning sickness, the swollen feet, the heartburn...the LABOR PAINS.  "Plus, I can actually drink the mimosas at my own baby shower!" After I while I would always start to feel better again. Those all sounded like good things to did the bit about staying alive a few years longer.

As the months passed, I talked more and more about surrogacy to a good friend.  While she's several years younger than me, she has three kids of her own, had relatively "easy" pregnancies, and we just click like sisters do.  After the birth of her third child last year, she offered to be my surrogate.  I made sure her whole family was okay with this decision...husband, kids, etc.  I mean, it's a very big decision to make!  I was thrilled beyond compare when I had what seemed to be the "perfect" option...someone I was close to (geographically and emotionally), someone I trusted, and someone I didn't have to pay through a surrogacy agency -- saving Michael and me about $30,000-40,000.

We kept this news very quiet because we didn't want to announce anything until a lot of the groundwork was already laid --- legal issues, medical issues, etc. Think of it as the 12-week waiting period that most people wait to announce they are pregnant.  We had, however, scheduled meetings with the surrogacy lawyer and the fertility doctor we used in 2012. We were moving forward, and I began to get very excited!

However, as I've learned over my 36+ years here on earth, life takes you where it goes.  I'm the captain steering this ship, but sometimes the current changes your course before you realize what's going on.  The week before our meeting with the surrogacy lawyer, my friend had an OB/GYN appointment, in which she learned she had two issues that would make it both dangerous and difficult to carry another child...hers or mine.  She came over to my house to talk about it face to face, and we were both heartbroken. She for me, and I for her. And of course....I was heartbroken for myself and Michael.

Our "perfect" option was no longer an option at all.

Again, I let myself mourn for a couple of days.  With Michael's love and encouragement and hours of Netflix binge-watching, I eventually  emerged on the other side, that of acceptance versus disappointment. We kept the appointments with both the surrogacy lawyer and the fertility doctor.  We learned what it would take to go the agency route and use a stranger as our surrogate.  We learned of the matching process, the psychological and medical testing, the IVF transfer process, and the total cost of doing so.

We were told that if we found another friend or family member (or IDEALLY a woman who has been a gestational surrogate before) to be our maybe-baby's "rent-a-womb" for 9 months, we would save significantly. They advised us to look around for someone else, but they also assured us that if we could not find another volunteer that there are many other women out there with compassionate hearts and healthy medical records willing to do it for a fee.

So here we are today...stuck in between a setback and moving forward.  Wondering if another volunteer is out there waiting for us, or if we should go the more straightforward path (or as straight as our crazy path is ever going to get!) and pony up for an agency surrogate which could lead us to a pregnancy in the next 3-4 months.  We've already come so far on this journey, though, and it means the absolute world to us to have a child - OUR CHILD - created in love (& science!) to carry on our love for decades to come. Our heartbreak is healing and blossoming into hope.  We know a child will happen. We just don't know when or how. But all we can do is just keep moving forward.

The good part is next.

Tuesday, May 27, 2014

#YesALLWomen - Time for a Blogfessional

I've had a pretty blue two days for reasons I'll talk about later, so today I set off on a wandering journey around intown Atlanta. I thought about a lot of things, but then I got distracted by this #YesALLWomen #NotAllMen controversy. I thought I was on the uncontroversial side of things by posting something that explained why it's a valid topic of conversation. I innocently reposted a link on Facebook that discussed both the Isla Vista shooting and the hashtag that came about over the weekend. I made no other comment on the shooting or the article, but I received a derisive comment about the article saying it was "most regrettable" and didn't have anything to do with the tragedy at Isla Vista. I shared the article not in response to the shooting, but for what it actually said: "What is #YesALLWomen and Why It's Important."

Here's the thing...we need to talk more about our experiences as women....I need to talk more about my experience as a woman who has been threatened, abused and assaulted. It IS important, and it is a problem worth sharing.  I do not find it "regrettable" that so many women (and supportive men) are talking about this.  I find it deeply regrettable that we haven't had this conversation so openly until now.  I find it deeply regrettable that I haven't shared my own experiences but with a very few people.

Here's a sampling that I, alone, have experienced. Yes, well-adjusted, generally optimistic Kristen.  I've dealt with a lot of shit. And yes, I've dealt (or not dealt) with a lot of it poorly.  I've laughed some of it off.  I've kept a lot of it hidden. But it's blogfessional time and since so many other strong women have shared their stories, I need to "woman up" and and share some of mine.

Remember that time I was at summer camp as a somewhat dorky 14.5 year old and I was cornered by 4 older guys while trying to put up my lunch tray who told me I was "too pure" and "needed to be corrupted"?

Remember that time I was trying to lift up my high school boyfriend during college application time by telling him all the things he'd be great at, and he responded "You'd be a great secretary."

Remember how I was 16 and on a FAMILY beach trip in which I met my new "cousin" (by marriage only) who proceeded to hit on me all week, try to fondle me and grab my hand to put on his crotch? Remember how many times I said no?  Probably not, since I felt like I couldn't tell anyone because I felt I would be blamed or made fun of.

Remember that time in college when I was told I was "too intimidating" for anyone to ask me out? And that I should just "smile more" or not be as into music or politics or academics.

Remember that time senior year in which I was having beers with a male friend who started pawing at me and unzipping my jeans in the bar parking lot as I tried to drive his drunken ass home telling him "no" and "stop" knowing full well that he had a girlfriend of his own.  Remember when he continued that when we got back to the apartment and how I continued to say NO?  Remember how I couldn't tell any of my friends because I would be judged for trying to break up their relationship? Remember how I had to move away from all of my friends just to get away from the judgment and the "bad decisions" (which I had tried to say no to, over and over)?

Then remember that time when I was 23 and I was slapped across my face and then knocked unconscious by a guy I used to work with when he threw me up against a wall just because?  Oh and it gets better...when it was clear that I suffered a slight concussion, my ex-boyfriend drove me back to his place and then decided to have sex with me. The ex-boyfriend that dumped me two months prior saying he "felt nothing" for me.  Obviously part of him still felt something.  Meanwhile, I woke up the next morning and went to work for a 10-hour shift at the store wondering why I had a gash on the back of my head and a raging headache.

There was that other guy that I dated for a while who thought it would be funny to bite my breast hard enough to cause a large hematoma for a few weeks. Why would that ever be okay? SERIOUSLY.

And that other guy...a "friend" who I turned down repeatedly who kicked in the door of my friend's car when I showed interest in anyone other than him.

And then there was the Kentucky Derby Infield in 2001...where I along with 40,000 other people got drunk in the sun.  And at one point late in the day, I was led off by a guy I did not know who then started kissing my neck and running his hands up my shorts and beyond.  I was sexually assaulted in a crowd full of people too drunk to notice and a guy too empowered to do so by us not saying THIS ISN'T RIGHT.

Even this year, 2014, on Kentucky Derby Day when I wasn't drunk, wasn't immodestly dressed, wasn't "asking for it" I had my ass slapped - HARD - by an emboldened young man who looked me dead in the eye and said "I did that. Did you like it?" I had no response other than shock. I laughed it off afterward as my husband exclaimed "Hey! That just means you still got it!"  And yes, I guess I do.  But in what world is it ever okay for a young man to slap a woman (of any age) in a crowded, dark tunnel where I couldn't get away from him?  It really shouldn't be ok.  Ever.

I've been accused of being "cold and frigid," "asexual," "a fucking slut," "too pure," and "easy."  I don't think any of those phrases describe me. It took me a long time to get over a lot of these instances. A long time.  And they fucked up a few relationships in the meantime. 

I hated myself. I blamed myself. I was trying to find some identity between the two opposites that I was being called.  I lived in a constant state of regret.  Hindsight has allowed me to see a bigger picture that the bigger problem wasn't me.  I was letting the problem define me instead of acknowledging it, confronting it and taking back control.

I know my experiences are not unique.  I know that many other women have worse stories to tell.  I know that many women will never tell these secrets either.  But if the #YesAllWomen story helps some people expose truths and question how we can teach our children and ourselves to do better and with respect, then I don't regret for a second that it's being told.

Sunday, November 10, 2013

Words from my Father

My father wrote this today, and it explains a little better about what's been going on this week with my help.  I wish that you could have all heard his wonderful toast on Friday night. If I know my dad well enough, I know it was probably done extemporaneously.  But he took time to write this one out, and so I wanted to share it to my networks as well.


I wish to share with all of you the roller-coaster recounting of events in the life of the Mohn family over the past week, in hopes that you will join us in prayers of joy and of appeal for God’s intercession and healing power…

Many of you know that my daughter Kristen, aged 36, was diagnosed more than a year ago with Stage –zero breast cancer. She had a mastectomy in December, at which time the cancer had advanced to Stage 2. Her surgery was to be followed by a chemotherapy regimen from mid-January through May. At the time scheduled for the first chemo on January 22, the doctors discovered numerous lesions on her liver – elevating the progress of the cancer to Stage 4.

At the end of the chemotherapy in May, the liver lesions seemed to be stabilized. Kristen and her
fiancĂ©, Michael Dellaporta, proceeded to plan for a wedding, which was held two evenings ago – Friday. The bride was stunningly beautiful and radiant, the groom handsome and debonair, and the father of the bride -- well, we shall leave that to others to decide!

What only a handful of wedding guests (immediate family and a very small number of special friends)

knew was that the preceding Friday she had received the results of an MRI of the brain. This diagnostic test was initiated after she had had an evening of nausea and disorientation while on a trip to New York City. From that time until she had her next monthly consultation with her oncologist, she continued to have difficult with hearing, numbness in the ear and right side of her face, along with balance problems.

Thus – the brain scan was immediately in order.

The news was not good. She has developed several lesions in the brain. The most serious is positioned against the brain stem, thus causing the balance and disorientation problems. Radiation therapy, on a daily basis, was called for. The radiation oncologist agreed to allow treatment to begin tomorrow (Monday), so that the wedding celebration could proceed. Kristen and Michael chose not to air this latest medical complication in order that guests could maintain a celebratory atmosphere, rather than turning it into a “pity party” that would be exceedingly uncomfortable for all concerned. And, indeed, the rehearsal dinner, wedding, and reception were stellar! And the bride WAS stunning – even if I am a mite biased!

Because Saturday (yesterday) was the groom’s birthday, Kristen had arranged a backyard taco-and-beverage fete for the wedding guests and friends. Some of the guests were part of a broad “Twitter community” who traveled to Atlanta from across the country – literally – to meet face-to-face for the first time and to celebrate the union of these “electronic friends”. The weather cooperated – partly cloudy and moderately cool. At least 60-70 guests were in attendance.

In the midst of the party, Kristen became disoriented and stumbled, falling and hitting her head on a deck rail. While there were no visible lacerations or other injuries, it was apparent that something abnormal was occurring. She was helped into her house, where she continued to lose sensation in the right side of her face and body, to the extent that she could not turn or lift her head. EMTs were dispatched, and she, her mom Sharon, and groom Michael accompanied her to the Emory University Hospital.

After a long evening, it was determined that she had suffered a seizure. She continued to have minor seizures that would last 30 seconds or so, for several hours until anti-seizure medication could take full effect. She did remain conscious and responsive throughout the whole episode. Naturally, they kept her overnight for further evaluation and consultation with a neurologist this morning.

The good news is that she is now being discharged and will be on her way home shortly. The bad news is that the lesions in her brain are brandishing their power over her system. We must hope that the intensive radiation treatments beginning tomorrow will take immediate effect toward halting this evil disease.

Throughout this whole year-long ordeal, Kristen has shown enormous strength and determination to squeeze the last drop of goodness out of every second of every day. She is a fighter – while she has her moments, as any of us would – none of them have become self-pitying, hopeless, or angry in self-destructive ways. Her anger, to the extent that she has it, is a “righteous anger” that she is only one of many who face similar life-challenging difficulties.
She is not a “victim” – she is a whole person, one who must never take life, or love, or compassion for other people for granted. I invite all of you who read this to pray to the creative power to whom you worship – God, Yahweh,
Allah, or simply Creator and Sustainer of humankind – to provide ongoing strength of will, of body, and of spirit, for our beloved Kristen and Michael, and for her whole universe of family and friends.
You can do her one additional honor right now, TODAY… If you have a child, a spouse or partner, a parent, or even just a special friend within the embrace of your arms, hug (and kiss, if you so desire) him or her and express that love and solidarity with all humankind. It is that sentiment, frequently to be called to our attention, which will enable each of us to embrace life to the fullest… one step at a time!

From a prayerful and loving father and mother, brother, and husband,

Dan and Sharon Mohn

Twitter  @danmohn1

Tuesday, August 20, 2013

Active Listening

Her:  "I feel that I wish you would make coffee now."

Him:  "I'll make it in just a second."

[Seven minutes elapse as He stares intently at the iPad.]

Her: "I feel that you don't have the same understanding of 'now' as I do."

Him:  [realizing the moment is ripe for active listening]
"What I'm hearing is that you want coffee 'now.'"

Her: "You are hearing me correctly."

Him: "What I'm feeling is that you are disappointed in *me* that I have not made coffee now."

Her:  "I hear that you are feeling I am disappointed in you.  However, I am more disappointed that there is not coffee in my belly."

It's a good thing we are practicing our "active listening" before the wedding.