Post Surgery

We are now almost a week past Amanda's partial mastectomy and all signs are point to awesome.  She is recovering very well and, best of all, last night we received news that all biopsied nodes were negative for cancer.  I have really come to love using "negative" in so positive a fashion.
Amanda's spirits are obviously high, but I think she will always approach each doctor's visit with caution and reserve.  Whether that is a good or bad thing is moot, as it is one of the results of having been through this particular ringer.  Friends who are survivors have told us that life will quickly become split for us as Before Cancer (BC) and After Cancer (AC).  For Amanda AC is more than likely going to be a new and different outlook on all things.  How could it not be?  For me and for Yeats AC is much the same, coupled with a consciousness of those things we take for granted, and a vow to try to do less of that.  For us as a family AC is a chance to keep the momentum of support and encouragement from the past several months vital.  It is an opportunity to grow from what we have learned about each other and about others who are going through this.  It is a chance to not fall back into old patterns, but to create new means of dealing with BC issues that are still around today.  How do we do that?  What does all of that mean?  These are the questions that we now face.  Luckily, I think that we have learned enough to answer these in a much different way than we would have BC.
Here is to a new year.  So far as I am concerned, Amanda is now younger than me, and on 3/30/2016 we will be celebrating her birthday, 1 year AC.

Phase II

The last chemo treatment is now three weeks behind us, but the effects may be with Amanda for some time to come.  However, no battle has ever been fought without some casualties, so my Amazonian Goddess will wear some battle scars.  Proof of a life worth living are the marks of a life hard-fought for.
So now comes Phase II of this process, surgery.  As previously mentioned in posts, Amanda is a candidate for lumpectomy followed by radiation therapy.  The comparative results of this action vs. mastectomy are almost identical.  In other words, no one is better than the other when it comes to medical outcome, but the former is far less invasive and should make for a quicker recovery.  Still... one more battle scar for our warrior.
Throughout this entire process Yeats and I have tried to be as supportive and empathetic as possible, but, let's face it, there are parts of this to which we will never truly be able to relate.  Having never suckled a newborn nor had the hassle of an underwire, there are limits to our understanding of what the coming surgery actually means.  Is losing part of the physicality of womanhood more than just a physical loss?  Surely, but what do I know of that?  Nothing, really.  Show me a man who thinks he does understand this, and I will show you an evangelical Christian Senator.  There is no possible way for me to understand, but that does not remove the possibility for empathy for the compromise that must be made between survival and vanity.  To some it may seem no contest, but, unless you have been there, how can you really know?
Throughout this, Amanda has maintained that there is no price too large to pay for beating this.  I am embarrassed to admit that it was only recently that I realized I took that decision for granted.  While it seems to be an easy decision to come to, that price is certainly not easy to pay.  All of us have suffered tragedies in our lives.  All of us have mourned loss.  It is very few of us, however, who face a physical loss of self in so abrupt and violent a way, and fewer still who do so voluntarily.  I think it is for that reason that the term "brave" should be used for fighters like Amanda.  It is a hackneyed reminder that bravery is not the absence of fear, but the going forward despite it.  It bears repeating here, though.
While I may not be able to fully relate to what my wife is enduring, while I may never fully understand and while I am certain that I will never be able to truly experience all that it is to be a woman, I will forever be able to admire and be proud of how she has faced it, and how I know she will face this next phase.  She is an amazing person, and I will never again take for granted how lucky I am to have her for a wife and the mother of our son.
Phase II, get ready, because you are about to have your ass kicked by a brave warrior and a hell of a woman.

Overwhelmed, but in a good way

We are now a week past Amanda's last chemo, and she is being visited by its many horrors.  So much so that she actually took her seventh sick day since being diagnosed in October.  You read that correctly.  Since being told one of the worst things that a person can hear, three biopsies in two weeks, countless appointments, 6 rounds of chemotherapy and just all around crappiness, she has taken seven, 7, SEVEN, siete, sept, セブン sick days.  What a woman.  There is really no way that I can put into words how proud I am of her and the way that she has handled this.
Apparently, I am not the only one who feels this way.  She has been getting cards from supporters on a weekly basis.  People on the Facebook page we have set up for her are daily giving her encouragement and love.  Her family and friends are always sending her texts and emails to check in, not to mention calls and visits.  Then, this past Friday, her old roller derby teammates at Naptown Roller Girls, essentially, made an entire bout all about Amanda and her fight.
Fire Anne Brimstone (FAB), aka, Jennifer Duba, a former teammate and friend, contacted me a little over a week ago to see if I could sub in to sing the National Anthem at a bout.  I accepted, because it is one of my favorite events to open, and I consider it an honor.  Then I found out that there was more to it.  The hope was to have a tribute of sorts to Amanda while I sang.  In short, FAB cut out, by hand, 60+ ginormous pink ribbons and distributed them to the crowd, the Fan Club helped hand out hundreds of pink ribbon stickers to all of the attendees, skaters even got involved by putting them on their helmets, some folks dyed their hair pink, a friend and former teammate had a t-shirt made dedicated to Amanda, aka, Joanie Loves Debauchery (JLD), the bout program had a dedication to her, the announcers made a special announcement about it as did the announcer on the streamingcast... to call it overwhelming is an understatement.  Amanda was not able to be there, but was able to watch the live stream to see the sea of pink and hear the announcers give her a shout out.  I called her right after singing and we just talked about how we couldn't find the words for how amazing this was.  I will just shut up and let the pics do the talking.

FAB and all of her FAB-u-lous ribbons.

A good shot of my own JLD shirt.
(Photo by Tom Klubens)

Diane Beatin, Cereal Killer, Cherry Uncordial and Elise showing love.

Jane Ire in her Notorious JLD shirt.

Founding fan club member and my friend Richard Levesque defaced the back of his Wam Bam poster for this.  If that's not love, then I don't know what is. (Photo by Tom Klubens)

So. Much. Love.

And I absolutely adore Amy Kunzleman, and her pink hair.

 

People we don't know showed their love. (Photo by Tom Klubens)

I mean, does it get better than this? (Photo by Tom Klubens)

First Big Hurdle Jumped (kind of);or How We Learned to Stop Worrying and Embrace the Suck

Back in October, when Amanda was first diagnosed, we said to each other, "We are going to beat this.  It is going to suck, but we will beat it."  Later that same day we repeated this mantra with Yeats.  We repeated it again and again for the next few weeks, then we just remembered it in our hearts, because the fight had begun and the words did not need to be said.  The problem with saying things like that is that no matter how much you may mean them, you never really know what "suck" means until things really start to suck.  We revisited this whole suck thing when we were sitting in the ER a couple of weeks ago on a chilly Monday morning.  So that sucks.
Amanda had been exhibiting several classic cardiac symptoms.  Herceptin, one of the antibodies that she takes (And will continue to take until next October.) carries a small risk of heart failure.  So, when your body is showing those signs, you listen, or, in Amanda's case, you ride it out for a night without saying anything then bring it up the next morning.  Luckily, everything was fine in the cardiac arena, though she was definitely dehydrated.  A couple of bags of fluids later, we got home and she has since been choking down diluted Gatorade.  So that sucks.
TV shows and movies show the hair loss and the nausea, but those are not the only side effects, nor are those universal.  Amanda has been very lucky in that she has not had the nausea that so often affects patients.  However, the lack of nausea is balanced by all sorts of nasty gastric horrors, neuropathy in the fingers and toes, mouth and esophageal sores, possible (Likely in this case.) loss of a fingernail or two, fatigue, little to no immune system, shortness of breath while just sitting, anxiety, insomnia, and the beat goes on, la-di-da-di-dee.  So that sucks.
On top of those things are the little things in life that  we all take for granted.  Being able to stay awake with your child and watch a movie, go to a movie, go for a walk to the coffee shop, climb the stairs to the front door, leave the house without Imodium, sleeping without a hat to keep your head warm, not ruminating on the great beyond.  These are things that Amanda will never take for granted again.  Unfortunately, no one gains that sort of wisdom without going through something like this.  So that sucks.

Chemo sucks.  Cancer sucks.  Fuck you cancer.
No matter how I eventually kick the bucket, I want that written in neon on my two-story mausoleum.

Okay, so yes, that all sucks.  Still, there are a lot of people that we see every time we go into an appointment who are experiencing all sorts of different sucks, and some of those sucks suck way more than our suck.  Case in point, today Amanda had her last chemo infusion.  While this means that there will be another three weeks of all of the things mentioned above, plus whatever new side-effects manifest as they seem to do with each treatment, Amanda is going to take whatever it throws at her, because this is it.  First big hurdle jumped, now its that last 100 yards to the start line of the next set of hurdles.  When she finished her infusion, she went out to the middle of the infusion center and rang a big bell to let everyone know that she had finished her course.  This is a tradition in many cancer treatment centers.  The entire area erupted in applause and cheers.  Later, in the car, we hugged each other tightly and cried.  Partly with joy and, for me, pride, but there was also sorrow for those in the center who may never get to ring that bell.  Those people were cheering and clapping just as loudly as the rest.  People who were so sick that they could not even walk into the center under their own strength found the strength to cheer for my wife.  They remind us that there is a lot more love and hope and strength in the world than there is suck.  They remind us to embrace that suck and never forget the lessons that we learn from it.  They remind us that when you sometimes want to let that embrace slip into a bit more of a chokehold, that you are just going to wear yourself out and still be holding onto a whole lotta' suck.  And somehow being reminded of that doesn't suck.
Embrace your sucks, folks.  Learn from them, never forget them, but do not let them guide you.  More soon.  Love to all of you!

Some of Amanda's old co-workers came by to give her some last-day-of-chemo love.

Amanda's sister, Andrea gave this shirt as a farewell chemo present.

 

Our very good friend and personal breast cancer ass-kicker, Jennifer Wood-Thompson gave Amanda the gloves.  She knows first hand what it takes to knock this disease right out.

Another White Album project entry

Maxwell, Yeats and I spent last night making a video for Amanda as part of filling her life with The Beatles while she goes through this.  I recorded and mixed it last Sunday, early in the morning at my office, because there was no way to get it done at home without giving it away.  We hope everyone enjoys it.  If you would like to contribute something, just let me know and I will make sure that she gets it.

https://m.youtube.com/watch?v=8I1DY6Iiaic

Treatment #5 Eve

Tomorrow is treatment number 5 for Amanda, leaving only one to go after this.  The week leading up to a treatment has now become one of getting things done.  Amanda finds herself rallying after suffering two weeks of hellish discomfort and sickness.  Coffee begins to appeal to her again, and she feels well enough to get out and about to some degree.  We spent yesterday watching our nephew wrestle at the regional conference, then just goofed around for the rest of the day.  We roamed around antique shops and malls and just generally enjoyed wasting time together.
Unfortunately, treatments also bring doctor's appointments which bring results, the anticipation of which brings anxiety.  As much as positivity is key, sometimes, just like an alcoholic father, it skips town right when it is most needed.  There's not much to do but get distracted as much as possible.  This means days like yesterday or Netflix marathons or puzzles or Bananagrams or whatever else we can think of that is not thinking of tomorrow.
An old friend and I talked today.  She is a survivor, but she has also been caregiver.  She is a fantastic comfort when days like this come along.  She reminded me that a lot of what is going on here, I am probably not going to be able to fully understand.  I don't know if that's what she meant to remind me of, but I needed to hear it.  Being a male of the species, I can't really fathom completely what Amanda is going through.  That a part of her body that nourished our son and gave him strength and life, a part that, probably more subconsciously than outright, is part of her identity as female, that part is now causing so much chaos.  Does this mean that Yeats or I can't be a good care-giver?  Absolutely not. It does mean, however, that I can not get too cocky in the empathy department.  I just need to keep doing whatever I can to get her to the next tomorrow with as little anxiety as possible.  Sometimes I am not so good at that, so I am thankful for the friends who, as Strother Martin would put it, "get my mind right."
Okay, so, that's all about me, right?  This is supposed to be about Amanda.  Well, this really is about her and every other strong woman I have met in my life.  Since October I have come to realize that Yeats and I have been very lucky to be surrounded by some really amazing women.  My grandmother, mother, mother-in-law, sisters-in-law, friends, and, of course, Amanda were and are embodiments of self-sufficiency and empowerment.  Because of this, I think, Yeats and I can at least be better care givers... better men, really.
Alright, enough girl power from the dude who legitimately enjoys the movie "Spice World."  Good mojo and juju and positivity for tomorrow appreciated!  Thanks and love to all of you from us!

Treatment Number 4

First things first.  The tumor has continued to shrink!  So, for those keeping score at home, it initially measured 5cm X 6cm and is now 2cm.  Why only one dimension?  Because that's the best he could do as it is becoming harder for him to find.  These are all of the things we want to hear.
Amanda has started her fourth round of treatments.  While I could make a laundry list of the ravages that these chemicals do to the body, there is really no point other than to demonstrate another reason of why this disease suckity-suck-suck-sucks.  I will point out one that is never really covered in the movies, and that is fatigue.  The oncologist warned early on that all of the symptoms would be cumulative as the treatments go on.  Fatigue, he said, would continue to get worse most noticeably.  For example, after the first treatment involving chemo, there was a day when Amanda was climbing the stairs at her office.  As long as I have known her, she has been a climb-the-stairs person.  However, on this day she hit a wall.  Not the type of wall we all hit when, say, we are exercising and stop the elliptical after an hour, because we just can't do another minute.  This was a complete physical shut down.  Her body was now in a war with gravity, and it was not putting up much of a fight.  She had to abandon the stairs with only one flight left to go, and take the elevator to her floor.  That was after the first chemo treatment.  So, you can imagine what a typical day is like for her now.
As a husband, this, plus all of the other side effects are so frustrating, because there is not a damn thing that I can do about them.  For Amanda, who is a stubborn and strong-willed person, they are frustrating, because, eventually, her body reaches a threshold much sooner than her mind does.  I think that all of us know the frustration of having the desire to do something, but not the physical means.  I know that I will never be able to go one round against Roy Jones, Jr., but I can get on with my day despite that.  Not being able to walk to the coffee shop with my family, however, is not something that I, personally, have ever had to face.  It is something that Amanda has to deal with all of the time now.  Every event must now be considered and scrutinized far more closely than it has been before.

1.)  Will there be a lot of walking involved?
2.)  Will there be a lot of people there, threatening the immune system?
3.)  How closely can we park?
4.)  Is there comfortable seating?
5.)  Ad infinitum...

It is a completely new world for us, and adapting to it has been tough, to say the least.  However, in the long run, all of these things are the toll to be paid for destroying this horrible disease.
One walk around the infusion center is all it takes to see that we are among the lucky.  Patients in varying stages of their own battles bring both inspiration and perspective.  Each and everyone of them has a story of his\her own, and each of those stories is full of every bit of heartache and revelation as Amanda's story has been.  To see so many people rage against the dying of the light can make things like having no WiFi seem a little less life threatening.
If any of you are wondering what you can do to help, there are a lot of people who are going through this all alone.  There are places that can use volunteers to help support those who have no other support.  (http://cancersupportindy.org/, http://www.youngsurvival.org/about/staff,   I would encourage each of you to consider giving a little time to these places or even check in with local infusion centers to see how you can help support those in need.  Some centers allow volunteers to sit with patients and read to them or just have a conversation while been treated.  There are a lot of people who could use a smile or two.  Think about it.  Okay?
If you are not a member of the Facebook page, and would like to be, request a group add at https://www.facebook.com/groups/275956439194637/.  This is a private group, so if you have a problem getting to it, shoot me an email at, droahrig@gmail.com.
 Once again, thank you to all of you for the continued support.  Amanda has truly drawn strength from every card, email, package and Facebook post.  Thank you to all of you, from all of our family.