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.

TO ALL MY FACEBOOK AND NEW TWITTER FRIENDS AND FAMILY:

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.

Monday, February 18, 2013

The shirts are here!

If you've been following along on Twitter or Facebook, you know that I decided to make #teamkristen t-shirts so that friends and family could show support as I went through this little life-detour we call "cancer."  I'm not a huge fan of the ubiquitous pink ribbon emblems, so I wanted to make my anti-cancer statement in a more black and white way. This also allows all of my guy friends to sport one without looking as ridiculous as NFL players do throughout the month of October. (Fuchsia cleats, really? Please.)

Not to knock pink....it's just not my style. But these shirts...these are more Kristen - or #teamkristen to be exact. Also? PUNS ARE FUN.

So here they are.  There's a mens version and a ladies version.  Some of you may end up with a free one -- yes, Dad, yours is free.  But if you're across the country or if you just want to throw in $11 to help me cover the costs of the shirts/shipping/etc, I created a little store thingy to help facilitate the Paypal transaction and shipping instructions. You asked, I answered. Now we just see if you guys were kidding....


TA-DAAA! CANCER-FREE OR BUST.

Men's Crew-Neck Tee:


Ladies' V-Neck Tee:


UPDATE 3/28/13:
I have youth sizes now!! Actually, I'm sold out of the XS and am low on S at the moment, but I should be getting more.   But here's the shop for that:


Also, if you don't use Paypal or prefer to pay cash or check, feel free to email me via the "Email Me" button on the right. 


Friday, February 1, 2013

Forget Next. Fast-forward to Now.


“These are our few live seasons. Let us live them as purely as we can, in the present.”
Annie Dillard, Pilgrim at Tinker Creek
 
 
I've been remiss. I haven't updated the blog since November. I even left you hanging by titling the last post "Decisions, decisions: Part 1," as if a "Part 2" was to be written soon thereafter. Such a tease, I am. Leading you on...leaving you hanging...
 
But actually, the real tease is time. 

See, I was so easily fooled into believing there would be time to write.  I had stories to tell, updates to write, points to make.  If I didn't have time now, I would always have tomorrow, or next weekend, or when I got home from work. But time is a tease, and if you don't grab it when you have it in sight it flits away from you.
 
And so this time, like many others before it, I let the time flit away.

I didn't write the follow-ups. I didn't write about the mastectomy. Or about finding out that the not-quite-cancer had become "real cancer."  I didn't write about the wonderful Christmas I had despite the physical pain from the surgery.  I didn't write about the amazing friends who fed me, sat with me, laughed with me. I didn't write about the decision to dance in the New Years and post it online for all to see, in an act of defiant alleluia.

Of course, I posted blurbs and blips of all these moments on Twitter and Facebook as they happened in real-time. Yet I failed to take advantage of real time to really write them out.

Flit, flutter, fast-forward to now.

(Or more accurately to two weeks ago.) I learned from my doctor right before New Years that my liver enzyme levels were elevated and that they would need to come down before I could begin chemotherapy for my newly named "Stage 2a" breast cancer.  My oncologist felt the elevated levels were most likely due to all of the pain medications I had been taking post-op, so we all assumed they would go back to normal levels in a couple of weeks.  I cut out all acetaminophen products.  I cut out the booze. I avoided fatty foods. I babied that liver.

And on January 11th, I was re-tested, but this time the enzyme levels were even higher.  About a week later and a few days before I was to begin chemo, my stomach sank.  I knew something was wrong. I had the overwhelming feeling that things weren't right. A dark cloud entered my brain and wouldn't budge. I teetered between being at peace with whatever storm was headed my way and being scared to death. 
 
On January 22nd, I was headed to my first chemo treatment when I got a call from my oncologist.  She was canceling my treatments until we could figure out my liver situation.  She ordered a CT scan for that day.  I was told "It's extremely unlikely" the cancer would have spread beyond the breast and ONE lymph node (just one!), so I shouldn't worry too much.  But the storm cloud was going nowhere, and time - that sneaky seductress - seemed to slow to a snail's pace.
 
The next morning I received the gut-kicking call from the oncologist: "The CT scan showed multiple lesions on your liver.  We need to do some more tests to see if it's cancer." And of course the one time you WANT time to speed up, it slows down.  The tests weren't scheduled until a week later. A full-body PET scan was set for Tuesday followed by a liver biopsy on Thursday.
 
Fast-forward to this week.
 
The PET scan gave me the best news I had received in a couple of months.  "There's no sign of cancer in the lungs, bones, or other lymph areas. We're really pleased and hopeful by these results." Really?  Hooray!! Everyone breathed a huge sigh of relief.  The Facebook post with the good news got more "likes" than I've ever received. My little Twitter world was full of joyous celebration.  But what about the liver?  I was told the PET scan wasn't giving us enough information about the liver to really tell, so I still needed the biopsy. 

The biopsy went fairly smoothly.  I was told the lesions were so small and presented mostly as benign tumors that the radiologist was fairly sure it wasn't cancer.  However, the liver was clearly "not right," so they ran a biopsy of the affected tissue to see what was going on even if it wasn't cancer.  The thought was that it was an autoimmune disorder or a chronic problem that had gone undetected until now. I was asked if I had time to swing by the doctor's office for more labwork to test for autoimmune issues.  "Of course I have time," I said.

Fast-forward to this afternoon.

The oncologist called again - not to tell me what time to come by for the labs, but to tell me "I have some bad news.  The pathology report is back.  It's metastatic breast cancer." Diffuse liver metastasis from breast cancer to be more precise. In English that means, "pretty fucking hard to treat cancer" and "oh yeah, not curable cancer."

In that moment, time stopped. And then in an instant, felt as though is snapped-to and ran away from me.  I lost the time to ask "How does this even happen?"  I lost the time to ask "How could we have fixed this before it hit my liver?"  I lost the time to ask "Why did I think all of this would be over after the surgery?"

I hung up the phone, and realized everything I had thought about time and my life and my plans were under the wrong premise.  The good part isn't next. Next is an illusion like the time that continually flits away from us. The good part is now. Or rather, all we have is now. So we better make it good dammit. FORGET NEXT.

Who knows how many "nexts" we get?  One day you may get a call that says you're stuck with the "nows."

So, I can't let time trick me anymore.  I'm onto its wily ways. I know I have to take it by its wings and do with it what I can while I have it. Who knows..Maybe that means more writing.  At the very least I hope it means a heck of a lot more living.





 
 
 

Sunday, November 18, 2012

Decisions, Part 1: Ice, Ice Baby

I've had to make some really big decisions this fall.  Weird decisions.  Life-changing decisions.
I suppose this is common for anyone facing a recent cancer diagnosis, or any illness for that matter.  In my case the decisions started small...like the long list of doctor names -- which ones do I choose?  Which ones are the best?  Which hospitals are they affiliated with?  Male doctor or female doctor?  However, they snowballed into decision after decision, each one increasing in size and heft.

Next I was debating bigger decisions such as "lumpectomy or mastectomy?", "single or double?", "genetic testing or no genetic testing?" and "implants or natural reconstruction?"  And it's not like I had the luxury of time to figure all of these things out either.  But I made each decision one by one, after a little bit of [hastened] soul-searching, rational pros/cons lists, talking to others...and, ultimately, going with - or going back to - my initial gut reactions.

While the decision to have a mastectomy was a very big one, it was one of the easier decisions I had to make.  The medical, practical and aesthetic concerns all pointed me to the same decision, which was to remove the affected breast tissue completely. There were other decisions that were harder to reach, as well as ones that had much broader impact on my life...and the lives of others.

One of the major decisions I faced was whether I wanted to take steps to preserve my fertility - that is, freeze my eggs.  While I'm blessed to have caught my cancer early enough to prevent the need for chemotherapy (i.e., the cancer has/had not yet broken out of the milk ducts or become invasive cancer), which can cause infertility, and I'm most likely avoiding radiation on account of the mastectomy, I will be placed on a hormone-blocking drug called Tamoxifen for 5 years following my surgery.  This drug blocks estrogen, which was fueling the growth of my cancer. It doesn't necessarily rule out my ability to have children, but I am not allowed to become pregnant while taking the drug.  And since, I'm the ripe old young! vibrant! sexy! age of 35 and still very much want to have children, I had to decide if I wanted to take my chances 5 years from now*or if I wanted to freeze my 35-year old eggs now as insurance for the future.

*Or 2-3 years, if I come off the Tamoxifen temporarily and under guidance to try to conceive naturally.  After which, i would go back on the Tamoxifen for another few years.

My gut told me I needed to do it.  Boyfriend, friends and family were supportive and all told me I may regret not doing it. Doctors encouraged me to pursue the option, adding that "after all, 35-year old eggs are both greater in number and less risk of complication than 40-year old eggs" and....tickticktickticktick....Yes, I got it. I'm not getting younger. I already heard that annoying alarm clock in my head before all of this. And now someone threw a little cancer on top of the "childless-35yearold-anxiety" and the ticking grew deafening.  I had to do it.

With referrals from two of my doctors, my boyfriend Michael & I headed to Reproductive Biology Associates (RBA) of Atlanta for a free consult with Dr. Pavna Brahma to discuss what would be involved in cryoperservation for fertility preservation (costs, etc).   I have to admit, I didn't know much about the process at all other than it was expensive and probably not covered by insurance.  After a really great meeting with Dr. Brahma I knew much more about the process to make a more informed decision of whether or not I should cryopreserve my eggs.  I knew the cost (think used-car prices, but financing is available...also like used cars!).  I knew the process (lots of shots and pills followed by an easy surgery).  I knew the side effects (think PMS, but worse). And I knew the rates of success (pretty good for my age, decreasing significantly past 35).

However, i had a new decision on my hands...or on our hands, rather.  I/We were faced with the decision on whether we wanted to preserve embryos instead of, or in addition to, eggs.  Embryos have a higher success rate in the thawing process of cryopreservation than eggs do. So here's the tricky part....Michael and I aren't married.  Had we talked about marriage?  Yes.  Had we talked about our desire to have kids? Yes.  With each other?? Yes, silly, yes. However, here we were skipping a couple of steps. All of a sudden, it was on the table to make babies - or as I began to call them, "maybe babies"....and in a very odd way.  Or at least "odd" in those "This isn't they way I imagined it," and "Dammit, we're skipping the fun step of this process" kinds of ways.

There were many conversations between the two of us about it...about the costs, about how it differed from how we had dreamed we would create a family, and about what our families would think, too.  There was much to consider.  We kept coming back to feeling like it was just right.  It was what we felt we needed to do.  And we - together - were right, so who cares if this particular part of our journey together came somewhat "out of order"?

In the end, we were both really happy - excited, really - about our decision to freeze embryos in addition to my eggs.  It felt like the right decision to maximize our medical chances of success, and it felt like the right decision for our future together.  I'd like to say that was the last big decision we had to make, but it wasn't.  There were more right around the corner.  Though, that's all I'll write about for tonight.  I'll cover "Decisions, Part 2: On Personhood, Property and Possibility" later.



[As an aside, I can't tell you how many Shake and Bake-Later (TM) jokes i made about our maybe-babies. It was a lot. The Vanilla Ice reference from the title only came to me recently, but you better believe that's what I'm singing every time the maybe-babies' icy storage comes up in conversation. BELIEVE.]