Puzzle Pieces & (Boob) Soap!

Friends – it’s been far too long.  I can’t tell you how many random paragraphs I have saved in my red couch file – some with awesome (mostly inappropriate) titles, or some bright idea I got but promptly forgot when I suddenly remembered where I hid that bag of Halloween chocolate.  There are a million reasons it’s taken this long to write and frankly they are boring.  Besides, it’s all the same reasons anyone struggles with anything.

But even while I’ve had trouble finding the words, I’ve missed being here.  It’s like your old worn out jeans on a sunny weekend day – even better with a strong coffee and a good friend.  While some of our crazy family joys and challenges are painful to put down on paper, it is also amazingly freeing to be able to leave them here and not carry them around all the time.  I’ve got much to get rid of, but am mindful that what I share is my own perspective.  As the trio ages I’m ensuring I seek their approval before sharing anything that may bother them (Tom, not so much).  Granted, there are some days when E feels like “hey – what did you have for lunch?” is too personal to share – but I think you know where I’m coming from here.

While there are many directions this could go (some much more humorous than others), I think it might be best to save topics such as wacky medication side effects, crazy ass hair and wildly uneven noobs for another day.  I think we’ll stick with oversharing of my current level of ridiculousness and then something controversial as hell – awareness. (insert some sort of inappropriate sound effect here).

FYI – before we continue, I think it’s wise to mention that my ovaries were removed last year leaving me without my stop and think about it filter, so this seems like a perfect time to incorporate a topic almost no one can agree upon, right?  I’m trying to work on rebuilding this skill but the truth is I remain a work in progress.  For those that know him, think Grandpa John Elliott Norman with fake boobs – that’s me.

Here’s the deal –  I miss old me a lot – more than I realized in fact.  Maybe I just need more time to work through this or maybe I’ll always look back with a hint of sadness for the loss of who I used to be prior to April 2016.  I don’t quite know the answer to that yet, but I do feel there is a very defined “before” and “after” around this gross cancer thing.  Some days I can’t help but feel like the rest of the world has moved on with life and I’m partially stuck in some sort of cancer hell that is really hard to break free of.

I know, I know – totally inspiring visual, right?

It’s like my post cancer self is searching to find where I fit now because I’m different (& old & have really weird hair) and the things I did before just don’t seem quite right at this moment – and I don’t know why.  It’s just awkward and a bit uncomfortable – like trying on clothes that don’t quite work even though you’ve shopped there for years.  And, this is not so different than what our kids are going through.  Man, it is hard to watch through that parent lens as our teens/preteens try to figure out how they fit and where they belong.  I sense that from the trio in the same way I’m now recognizing it in myself – and some days it really sucks.

Truth is, I struggle to think about anything long term because it causes me anxiety.  I try, I really do, but it makes me impatient, edgy and worried about trying to squish all the important life stuff in right now for fear of losing the chance for good. Then, in my moments of clarity (rare as they may be) I recognize just how ridiculous I am.  Somewhere in that foggy chemo-brain of mine, I know we are and will always be a work in progress.  Life is not meant to be rushed – not even the gross parts.

My sense is that some of this is my way of processing the harm I caused our trio by not being the mom they needed during my illness.  Yes, I “get” it wasn’t done on purpose, and that on some level they will have hopefully learned how to deal with whatever craziness life throws at them.  But right now it just feels really hard, and we’ve had an especially rough time of things these past several months. Tom & I spend most of our time being reactive instead of proactive – and that’s gross and a sure way to fail when parenting offspring that need structure, routine and positive planning. All we’ve got going for us at the moment is a deep love of 80’s music, and sadly, that’s not enough.

Ok –  let’s forge ahead.  This is getting to be a downer.  Time for a topic change – sort of.

While there are obvious differences, I do believe there are similarities with the autism and cancer communities.  Maybe all this crazy stuff I’ve been thinking about is swirling around in my brain because it’s April – Autism Awareness & Acceptance month and I’m bombarded by lots of articles/FB posts/news from a number of different angles, a variety of viewpoints and a giant heap of anger and frustration.  It’s not so different in October (Breast Cancer Awareness month) – the NFL is wearing pink shoes and those that have anger/frustration with pink are sharing messages filled with emotion and sadness (and some new clever vocab words).

Both cancer and autism are large, diverse communities filled with passionate advocates/self-advocates, a great many committed families, service providers, medical teams, etc. –  and some very deep divides.  Whether it be blue lights & puzzle pieces or pink & ribbons, (or a million other things), it feels like the way we disagree more so than what we disagree about stifle both communities from making more genuine progress.   I’m not suggesting the issues that divide us are not messy or unimportant – there is a lot to work through, a lot to learn and maybe there will be things that are just going to be polarizing no matter what. This is not so much finding answers as much as it’s about how to navigate different viewpoints – ideally without being Asshats. This isn’t easy (hell, I’m struggling mightily without my pause and think filter so I own contributing to the problem), but I do think we can and should disagree better.  I just wish both communities would find a way to focus on something  – even one little thing – that most can agree on as a way to bring the community some sense of unity.  As it is I wonder what regular folk think when they see all the ugliness?  Maybe it is of notice only to those who are entrenched – I don’t know?  No matter what, the time will come when it will be helpful to work as one whether you have blue or purple lights or choose to throw a can of hot pink paint on your garage.  While my inner hippy might be shining too bright here, I truly believe that it’s hard to make a difference when we only focus on our differences.

So there.  I’m jumping off my soapbox in full recognition that these divides exist and that no matter what I wish, I must do more than chat about it.  So I did – or better yet we did.  My sweet Ada G and I have been embracing a new passion – creating our own bath bombs and soaps with jazzy colors and scents.  We like the ones that fizz like crazy, (we disagree about glitter) but lavender is our favorite scent.  Pictured are some of our favorite soaps.  Ada likes the little puzzle pieces because they are the perfect size for her, so we have them in an assortment of colors – she digs green but is fine with blue (orange  – not so much).  Ribbons are not so easy to pull off with soap, but I kind of love my new boob shaped soap mold.  Ada and I like a soft peach tone (they smell like lilacs and rain).  I want Ada to care about boobs because I hope she gets to keep hers forever.  She’s teaching me a lot about autism and I’m ever grateful to have such a great educator!

Life can be hard and messy and hormones (or the lack thereof) can get in the way of peace and tranquility.  This my friends is something we have had our fair share of experience with of late!  (Sweet Jesus!) And while we may be weird even by weird standards, we also believe in possibility.  Heck – we’re foolish enough to believe that spring will one day come to Minnesota.  However – we’re not complete dorks – we have a back-up plan. The day after the trio finishes school – we’re heading to the Emerald city and hope to frolic about the Pacific Northwest which will be a new adventure for all of us. So far, our “to do” list contains climb a space needle, see baby whales and take Henry to the mothership (Microsoft).  Then, we’ll head out to see some national parks where we can use our hippy boob soap and yell NATURE!

Love ya, man.

Moving on . . .

Last year at this time I was bald, sick, scared and very sad.  I now know that there is no “other side” to this breast cancer craziness, and while there is plenty of “new” in my life, very little seems “normal” to me yet.  Someday, I hope to be able to combine “new” and “normal”  with ease, but for now I stumble and bumble, wishing my many weird post treatment side effects would subside much faster than they do and figuring out what I’m meant to do next.

In so many ways I’m a bit lost right now – but slowly I’m coming to grips with that and giving in to the grossness rather than trying to ignore it.  Wow – that sounds unbelievably dorky – sorry about that.  Maybe I’m out of sorts because my red couch is currently in a storage unit somewhere in Eagan, and I’m a bit lost without it – more about that later.

The uneasiness of not knowing what might be can be painfully difficult to navigate some days, and while chemo, radiation and surgery were all gross, the possibility that they will give me even one more day with Hop-a-Long and my Trio makes having endured every ugly moment of it worthwhile.  Still, I don’t know if it worked, and that feels like a giant question mark hovering over me at all times and I hate that.

While the GHQM (let’s get real – Giant Hovering Question Mark is just too long to type!) is certainly more subtle than being bald, and (gratefully) not as obvious to random folks at Target, in some ways and to those that know me well, the GHQM has changed who I am in big ways and small.  Some days the GHQM is barely there and some days I struggle to fit it in the car with me as I try to go about my life.  Truth – it’s been a harder pill to swallow for our family than we’ve owned – and while so much about life remains the same, still more feels weird and uncomfortable and sometimes hard.

Ok – time to move this along, as I really do have a point sharing this with you after far too long between posts.  I get that life has its messy moments for all of us, and that challenge is relative.  I’ve genuinely tried to sit down and pen something many, many times since April, but just couldn’t for too many reasons.

Because I must be time sensitive which is never easy for me when writing anything, I’m going to have to share things out of order while giving you just a snapshot of what’s been going on and what’s coming down the path.  I do want to give each of the following topics their due so consider these future red couch entries (even if ridiculously overdue).  So, here goes:

    

• My “I’m Still Here” party was awesome in a million ways, and while my extended family may never forgive me after the stress I bestowed on many in order to pull it off in short order including a few epic meltdowns of my own, it went rather perfectly in the end.  The unseasonably warm weather made for a lovely spring day spent with amazing people from so many corners of my life, thoughtful notes from those far away and those who couldn’t make it, and memories I’ll hold near me for all my days.   The cleavage cake from Nadia Cakes set the tone (thanks Kristine & Chuck), and the slushy machine got a great work out as I am reminded of when my shoes stick to the hard to reach corners of our garage floor.
• I’m taking part in a medication study and was selected to receive the study drug for two years.  This in addition to the hormone blocking medication I will take for 10 years (hopefully – thanks GHQM).  My side effects are remarkably similar to those that live in this house navigating puberty –  boy is that fun some days!  Fatigue, joint stiffness, thinning eye brows, systemic yeast just to name a few.  Yep – it’s a regular party around here (I wouldn’t blame you if you skip reading this one – I might).
• Because of the lovely spring weather we enjoyed, I started doing a bit of running.  Well, I call it running, but I recognize not everyone would.  Trotting might be a better description.  This produced a number of unattractive, ridiculous and even hilarious moments throughout the mean streets of Eagan, including making small children cry.  Not sure if that was because of my weird looking hair or when I forgot I had headphones on and was singing the refrain from Arrested Development’s “Mr. Wendal” (2002)  This was likely very unfortunate on many levels.
• My foobs are gone – and now I have noobs!  (Fake boobs to new boobs).  This has been quite a journey like no other complete with new vocabulary words like “side boob” – who knew?
• Hair – I’m certain having to listen to me whine and complain about losing hair, being bald, and then struggling with gratitude for the craziness that is ever so slowly growing back must be growing old.  Finally, I have a positive update!   Tiffany from West Coast Hair Extensions is my new friend and has helped me craft just enough bang to feel like someone I sort of recognize.  I do have photos – and this may provide comic relief for some you for years to come.  I hope one day I can laugh – for now, I thank Tiffany for helping me even if it’s just an illusion from certain angles.   Also – she’s fascinating and has had an incredible life, which made for a really fun day.  I felt like I’d known her forever after about 15 minutes.  And she’s a talented artist.  I dig her.
• The trio has completed another school year.  3 kids, 4 schools, and a village (a fairly large one to be fair) of amazing folk helping us navigate our particular brand of craziness – especially this year.  This will be tough to write about, even more so because of the uniqueness of the experiences for each of our offspring.   Even though everyone has been in different buildings, because we are one family, what happens to each impacts the others.
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  • E – Dramatic highs and some sobering lows.  Amazing folk who have helped to give him experiences we could never have imagined just a short time ago, and other things that should never have happened, and that took a tremendous amount of effort to repair, but because of a kind and caring village and open communications genuinely did repair .  Most of all – a reminder for us that while Tom & I will always be E’s biggest fans, this journey is his.  Even when it got unbelievably hard, we tried to keep that front and center while facing some tough decisions.  In the end, we feel positive he is where he needs to be, and where he wants to be.
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  • H – Truth – I’ve rewritten this section at least 10 times so far, and hoped that waking up at 5 to tackle it when things were quiet around here might help – not so sure that was a great plan, but here goes.  To be quite blunt, Henry’s middle school journey didn’t have to be as challenging as it was and I am sad and hurt by how things were handled.  With permission from Henry, I’m referencing a series of escalating mental health issues that we sought help with even before my breast cancer diagnosis, and to put it simply, were told no.  (It’s not quite that simple, we’re not referencing the vast majority of the amazing day to day educators he worked with, we get the exceptionally limited mental health resources available in our schools, and with Henry’s help, we’ll share more in hopes of preventing this type of situation for other families.)   Henry will move on to high school this fall, and in some ways we’d all like to move on and not look back, but we face the difficult decision of choosing where Ada will attend middle school in one more year.  At this moment, my lack of faith due to what happened with Henry makes it hard to envision that this building could be a very different experience for our girl.  But the thought of ripping her away from friendships that have taken hard work and many years to foster feels like a worthy reason to try to inspire some positive change.  Speaking of the girl – it’s time to share some amazing!
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  • A – We want to adequately honor the enormity of amazingness that was Ada’s 4^th grade year – because of the incredible Mrs. S!  Ok – I’m already tearing up – there were so many amazing and beautiful moments sprinkled throughout the year that inspired much positive growth and change for Ada – all because of an incredible educator who just “gets” it.  Having heard how pivotal and often difficult 4^th grade can be for girls on the autism spectrum like Ada, we were worried that my having cancer combined with Ada’s social difficulties and splintered academic skills would significantly limit her time with her mainstream peers.  Because of Mrs. S. – that didn’t happen, and in fact, it was quite the opposite!  Ada loves her school and has worked with an amazing special education resource team for years.  She’s always had great teachers, but we knew 4^th grade could be a game changer.  Because of all that, likely from being in the midst of “red devil” chemo,  I went from being a bald/frightened crazy mom the month before school started to crying/gratitude filled crazy mom with awkward hair just a few short months later – because of the amazing Mrs. S.  Most importantly, Ada’s life will forever be richer because of this amazing and kind educator who went above and beyond in every way when Ada needed it most.  We will forever be grateful.  Life.  Changing. Stuff.

Ok – so hopefully this gives you a snapshot of what’s been going on in our little corner of the world since April.  So why the heck am I up at 5 a.m. scurrying to throw this together?

Because we are moving.

Isn’t that crazy?  Had you told me in April we would be moving to a different house before the next school year, I wouldn’t have believed you.  Truth told – we are still in shock.  We were not looking for a different house, and this all came to be in a mere 24 hour time-frame.  We’re not going far – .6 miles to be exact.  No school changes for anyone and Elliott can still get to CVS with remarkable speed to check all the latest deals.  It’s a whole lot of change, but not really anything other than the house.

Tom & I built this house 17 years ago this month – this is the longest either of us has lived anywhere.  We have many wonderful memories that we’ll carry with us, and this is the only home our 3 kiddos have ever known.  We have wonderful neighbors and have done many things through the years to make our home work for our ever changing family needs.  It’s a perfectly fine house – truth be told, we just need a change.

For all the amazing, we’ve faced our fair share of challenges within these walls as well.  It just feels like the right time to start anew in a different home and create some new memories.  It does have a little more room, and a quiet, nature filled back yard that made all of us smile.  For some reason, the stars aligned, we have the support of family, and we hope to be situated before the start of the school year.

Which is why I’m up at 5 a.m. writing – because sorting through 17 years of life with 3 people who have never moved is time consuming and stressful.  The trio likes that nature filled back yard, but not so much packing up boxes and preparing this house for sale – hopefully by next week.  Yikes!

There is much uncertainty about how all of this will go, and without a doubt we will put our own unique spin on all things moving.  We take for granted our positive rapport with our neighbors – who knows what the new folk will think of us?  But with change and uncertainty comes hope and possibility.  No matter how tough some of the next few weeks will be, we will get through it all with forced teamwork and bad 80’s music.  Fingers crossed.

Hopefully, you will be able to join us in the new backyard soon to frighten some new neighbors.  Heck, maybe we can all have some fun shouting NATURE!

 

Run, E, run!

Many years ago when we were first processing and accepting Elliott’s diagnosis, Tom & I made a decision that while autism was always going to be a part of our family, that we would do our best not let it define us.  Truth be told, especially in the early years – it was easier said than done, and there were some periods of time in there when we failed miserably.  Ada’s diagnosis a few years later added a new layer of difficulty to our goal, but we still hung on to that hope and slowly but surely, we sort of evolved into our own unique brand of family funkiness – including autism, but not defined by it.  Sure, there are still days here and there where autism seems to fill every inch of space in this house, but there are just as many days when it’s just hanging out in the background.

Now it’s time for cancer to do the same.  Let’s face it – cancer is gross, scary and completely overwhelming – not just for me, but for our whole family.  It really has taken over my life and by extension that of our family since March, and has been all consuming.  Going through the trauma of diagnosis, learning after surgery that what we thought we were dealing with was actually quite a bit more serious (stage 3A instead of 1), and then digesting really icky percentages regarding recurrence and beginning a long road of treatment that won’t end until December.  All icky and gross.  Blah.

So much of these last few months is a total blur to me – it’s like a giant swirl of the most horrific and unimaginable nightmare possible combined with some of the most incredible gestures of love and kindness our family has ever known.  We’ve met even more amazing people on this new journey, and learned that despite our many faults and failings that when something really awful like this happens, people in your life show up and give the very best of themselves to you.  Makes me weepy even thinking about all the big and little things that have gotten us through this far – humbling doesn’t even begin to encapsulate it.  My heart runneth over.

While cancer (at least the treatment aspect of it) will remain in the forefront for me for many months, it is slowly but surely becoming just another part of my life.  The really gross red devil chemo treatment is done, and I’m tolerating the new treatment (Taxol) much better.  Sure – my hormone levels are whacked out and I’ve been a bit edgier than I’d like to be, but frankly, it helps me relate to the teenagers that live here.  I’m also not a giant fan of steroids that make me swell up like a balloon – but then I remember that it prevents life-threatening allergic reactions to Taxol, and I apply my women’s Rogaine and go about my day – puffy but also more present in the lives of my trio – I’ll take it!

Speaking of the trio – they rock!  While Tom & I have each faced health challenges this year that have made us slightly ridiculous parents, they have stepped up in new and surprising ways, and we’re realizing that all those years of chat about how families stick together and help one another during thick and thin must have actually sunk in on some level!  Let’s just say if any of us were wearing clean clothing during April, May or June – it was because of the trio.  Sure – there was plenty of whining involved – but to be fair, likely less than from their dorky parents.  Without a doubt, our offspring have weathered the ugliness around here far better than either Tom or I, and our pride runs deep just thinking about how each of them has made the best of an otherwise crummy year.

This week is a perfect example.  E man has accomplished something that not that long ago seemed truly impossible, and he’s doing it with his own personal style and with the support and encouragement of many amazing people.

Here’s what I posted on Facebook a short time ago about it:

Last winter, my special needs Mom pals (Heather Tidd, Kelly Sue Kausel) & I asked to meet with our 196 Director of Special Ed., Mary Kreger, about community inclusion and the many ways we can come together and improve upon what exists today. For some crazy reason, she said yes! Despite their busy schedules, our Senators Jim Carlson & Greg Clausen attended as well because they have invested time and energy learning and understanding more about families like ours, and how they might be able to contribute ideas and solutions. I’ll never forget sharing that it is just not feasible for our Elliott to participate fully and independently in extra-curricular sports and activities, and how sad that made me, and most importantly, Elliott. I was suggesting some alternative recreational possibilities for kiddos like E when Sen. Clausen asked me how and why E wasn’t able to participate in any of these school activities? He reasonably wondered if given the proper plans/supports this could work given inclusion with his typical peers would seem the ideal whenever possible. While I tried explaining the many obstacles our family has faced doing just that, I couldn’t stop thinking about it & it weighed on me that I had in a sense given up. It hurt. Two days later he called me and passed along the contact info. for a 196 sports coordinator willing to help us. Suffice it to say, Sen. Clausen was right, and thanks to him, I was reminded of what true community inclusion can look like when lots of committed people work together. I’ll never forget that lesson nor his going above and beyond to help our family. Because of the generous inclusive spirit and commitment of many, today I can share with you this photo of Sen. Greg Clausen & the newest member of the Eagan High School Cross Country team, Mr. Elliott T. Kramer. Thank you, Sen. Clausen, for caring about community inclusion and working hard to make it happen for our family and countless others! Run, E, run!

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When I penned that we had just heard from some amazing and helpful school administrators at E’s various educational settings that the Cross Country Coach would happily meet with us and give him a chance, and while I own that part of me was so anxiety ridden I didn’t sleep for a few nights, I was also unbelievably excited and proud that E was now ready for something like this and that we were honoring his hard earned wish to participate in a school sport.

Last Friday, as I sat around a table with E’s amazing Special Ed. Coordinator, Mrs. T. and Coach B., I realized once again how deeply many of our educators want to make a difference for kids and their families.  Taking time out of their summer, agreeing to meet with a crazy, bald mom who cries too much, and strategizing terrific and creative ways to utilize E’s many strengths while also preparing for the inevitable bumps in the road – it was amazing and positive, and all of a sudden everything felt more hopeful.   I left that morning realizing how far E had come since the monumental challenges he faced in middle school, and while the 2 buildings share a parking lot, it suddenly didn’t provoke my own anxiety levels just being there because E’s toolbox is filled with lots of new strategies, an incredible support system, and a strong desire to succeed.

This Monday morning at 8 a.m., E & I pulled up to the front door of the high school for his first practice.  He flat out refused to allow me to walk him in and then was even more insulted when I asked if I could photograph him in front of the Eagan High School sign on his first day of Cross Country practice!  All I got was a bad shot of him running away from me as I hung out the car window, and to be fair, he was in the right.  (This one was at home – still not pleased with me for wanting to document the day).  

It took everything in me not to immediately reach out and find out how his first day had gone.  He was tired from his long run, but all smiles when I picked him up.  Still, he didn’t want to overshare, and reminded me this was mostly his private business and that he would let me know if I needed to be aware of something.  While I knew deep down that I would certainly have heard about any serious challenges, it was still exciting and scary to let him be on his own, hanging out with a group of typical high school guys and doing his best to fit in.  Something that we had always hoped for him, and more importantly, something he wanted for himself.

Then, the email arrived from Coach B.  You know the kind – the ones that make your autism mom heart swell and nearly explode out of your body.  Here is an excerpt:

________________________________

Hi Kammy,

Just wanted to send you a quick email.  The first two days of cross country have been great and Elliott seems to fit right in with the team!  Coach M ran with Elliott on the first day and helped him with strength training after.  And today we did a workout as a team and he did AWESOME!

Please let me know if you have any concerns on your end but as Coaches we think it is going great!  We are glad to have Elliott out for the team 🙂

______________________

Yep – you know that one’s getting framed!

I let E know that Coach B thought he was off to a great start, but he told me he already knew that because he checks in daily.  Still, I could tell he was proud.  And after running several miles every morning and using the weight room he’s extra mellow the rest of his day, and frankly quite pleasant to be around.

He’s even inspired Ada & I to start some morning running – well, it feels like running to my water-logged steroid filled body as I sweat and turn red and look next to me while Ada is simply strolling with an occasional jogging step and lots of dancing hands.  At least she encourages me even if she doesn’t like my “old mom music”.  Come on – “Hippie Chick”?

Today, E is baking up a storm.  He arrived home earlier this week with his Cross Country fundraiser packet, and told us he needs to raise money for his team to have enough coaching help, for team awards, and for post meet treats.  While we’re grateful this does not involve wrapping paper or magazine sales, it’s been a challenge for E to practice his sales pitch.  His Grandmother’s got some interesting phone calls, and then we decided to play to his strengths – brownies and monster cookies!

The trio has been converting our basement from a toy area to a teen hang-out, so after clearing out the items they are ready to part with (yes, even Henry the packrat), they have decided to do a garage sale/bake sale tomorrow (Saturday) morning.  The proceeds from their “stuff” will fund whatever fun extras they choose when we spend a couple of days in the WI Dells next week, and the bake sale proceeds will benefit E’s Cross Country team.

So, if you’re around tomorrow morning, pop over to our house for a cookie or a brownie and give Elliott a chance to practice his “please support my team” pitch.  It’s likely to be a bit rough around the edges, but he’s determined to do his part.  As always – with his own unique spin.

Run, E, run!

 

 

The Red Devil (hint – it’s gross)

I was a senior in high school when “Purple Rain” came out. I’ll never forget loading up my parents’ old rust colored Vega with some girlfriends and several foreign exchange students and going to see this Prince guy on the big screen.  Let’s just say he seemed more than a little worldly and quite the hipster to kids coming of age in small town rural Minnesota.  His look was remarkably different than anyone we’d ever seen before (no one at the legion ever looked anything like him – and let’s face it – it’s not just anyone that can pull off that much purple and sequence).  For once, it felt almost cool to be from Minnesota.  His music is embedded with so many memories of my final year of high school, my college years and well into my 20’s that it jolted me in ways I didn’t expect when I learned of his passing.  While I can’t claim to have been the biggest Prince fan on the planet – I did love some of his music, and I vividly remember that line in “Let’s Go Crazy” about punching a higher floor because of the fascinating dance moves we all had for that part of the song.  Learning that he was discovered in his elevator made me hope in some profound way that he found his way to that higher floor.  I wish him purple peace.

Pondering your own mortality is fairly unpleasant – at least from my perspective. For me, it’s always been in the abstract, though every once in a while it bubbled up mostly as it relates to having kiddos with life-long disabilities and the fear of not doing every single thing in our power to help them in the here and now.  Still – the topic is unsettling at best.  Breast cancer has changed all that for me, and in big and small ways, I’ll never be the person I was before my cancer diagnosis.  That still feels weird – I was really ok being pre-cancer Kammy – with all the funkiness and imperfection that involved.  But having a clear PET scan gave me a glimmer of hope that I have a shot at becoming post-cancer Kammy – likely just as funky and imperfect, but also filled with hope and possibility and quite a lot of gratitude.  Ok – I’ll own it – continued inappropriate humor as well.

Following the news I received about my PET scan (no spread beyond the areas removed during my surgery) I got to meet my new oncologist, Dr. Zander. He’s a snappy dresser, and a bit serious but thorough, brilliant and with just enough kindness.  This is a person I hope to have a long and productive future working with – and I’m very grateful for the chance to be his patient.  He’s exactly the kind of person I believe can help save my life, and I wanted to have a positive first meeting, but also wanted to be me – so let’s just say I’m grateful I didn’t opt for my “Cancer is an Asshat” necklace during this initial visit.

Dr. Zander is the guy who had to give me my numbers and percentages after interpreting my surgical pathology report, and to be fair, they were gross. That said, I learned a ton, and he was patient with me when I needed time to process some of this information and then cry and say things like “that’s gross”.  He took the time to explain that the reason my cancer was so much different than what any of us expected was that it had lobular characteristics, meaning it hid quite well, and was undetected by all my mammograms until it started forming more typical tumor characteristics.  It kind of reaches out in little arm like fashion, and so even though it was measured at 10 cm from end to end, he explained that it wasn’t like I had a solid baseball hiding in my breast – that within that tissue, much of it was healthy.

Still, because it was so advanced, and because of the spread to my lymph nodes (which he said he would have expected to be far more significant considering the size of the tumor) my stage is classified as 3A, and my chances of recurrence are larger than most. That said, I need to treat this aggressively with a dose dense regimen of chemotherapy followed by 6 weeks of radiation and then hormone therapy for 10 years.  Even after all of that, my chance of recurrence is still 30%.  Yep – that was a bitter pill to swallow.  Still, I needed to hear it, and to recognize that no matter how gross these next steps are – they are my best shot at staying in the 70%, and therefore, I got a good cry in, shared an IPA with Tom, photographed a toilet in my front yard (it’s now gone), and woke up the next morning with a more positive attitude.

My chemo will begin May 12^th.  I’ve already had some sort of special heart scan to ensure that I’m healthy enough for the “red devil” which is the special name given to my more aggressive variety of chemo.  I’ll be getting 4 cycles of AC (Red Devil) chemo 2 weeks apart, and then begin 12 weekly cycles of a less aggressive chemo called Taxol.  I will lose my hair, and I hate that.  Everyone hates that, I get it.  I hate that it might be especially weird for my kids – so I’m doing my best to share all of this in bits and pieces and on the advice of my friend Sarah who has traveled this path 6 years ago, I hope to include them in the process and maybe take Ada along when I donate my hair to Locks of Love and just have it a shorter length before treatment starts to reduce my trauma.

Most days I have medical appointments of some kind, and it can be mentally and physically exhausting digesting everything. Still, these amazing oncology folk “get” that, and they do their best having worked with lots of others before me.  I’ve also been tremendously lucky to have support from near and far in making all this work – and that’s no easy task!

Thankfully – my sense of humor remains, and sometimes it’s all I’ve got. Tom aka “Hop-a-Long” since falling off a ladder 2 days before my surgery, breaking his leg, and wearing a boot and crutches wherever we go, gets much more attention than I do when we visit any medical establishment.  People are often trying to put him in a wheelchair or guide him to orthopedics and offer him candy, while I am left simply as his door holder.  Until I am bald, I’m considering a temporary “cancer patient” tattoo.  Whatever!

Our home renovations stemming from the dishwasher flood in February continue to be a comedy of errors. Last week, when moving the washing machine back to the laundry room from in front of the tv, something dislodged and caused more flooding when the contractors hooked it all back up.  Now, they must rip out all that flooring, reinstall, and deal with the water damage in Elliott’s new room located below the laundry room in the basement.  Ugh.  Sometime soon I will be able to locate our pizza cutter – it is likely in some box stacked on my red couch somewhere . . .

Autism doesn’t seem to care whether or not I have breast cancer, and although the kids are surprising us in new ways and stepping up while Tom and I are unable to do any lifting, etc., there are days that are more challenging than others. Trying to get plans updated and in place for everyone before chemo begins has been stressful – it could be I’m not always the biggest fan of special ed evaluation language as I’m much more comfortable sitting at a table and chatting things through over brownies.  But, I have faith in the system, and believe we can find common ground.  Plan B will involve me wearing a sombrero to all future meetings.  Wish me luck.

The kids were quite jazzed to welcome their cousins to MN last Friday. My sister, Kristine, her husband Chuck, Nikolas and Xander are Eagan’s newest residents!  They have purchased a home walking distance from us, and will be moving into it in early June.  Xander is especially thrilled with my chocolate chip supply and Nik will be starting at Ada’s school next Monday to finish out his elementary school career in style.  I’m ever grateful to have them here as the next steps in my treatment begin.  That said, I’ve decided to pass on Chuck’s suggestion to ask my plastic surgeon for bright flashing blue light breast implants that will signal my arrival from several blocks away.  Keep in mind he’s from Boston, and has yet to learn the importance of cream of mushroom soup and proper MN waving etiquette.

Most of all, we are enormously grateful for the kind messages, meals, cards, gifts and even people stopping by to see the toilet that was in our yard. When I was beyond frightened about the PET scan and asked for your support – you shared your well wishes, good vibes, prayers and even an interpretive dance number or two – it was humbling and helpful, and I will always remember that.  There is no doubt that cancer is very gross – but every day I’m astounded by how many people I’ve crossed paths with in my life that are reaching out from near and far – wow!  One of the nurses I’ve come to adore said it best – “cancer has a way of reminding us how much we are loved” and I now know how true that is.  Our family has had a really rough few months, but I know with every fiber of my being that what we will all remember looking back at this experience is the amazingness of those we are lucky enough to have in our lives.  Yes, even Chuck.

So take that Red Devil! Time to enjoy the children complaining about how awful it is to carry laundry baskets and scoop the litter boxes – all while I research wigs and listen to “Purple Rain”.

Love ya, man!

I Need You! Conquering the Grossness

Friends – things continue to be gross. Frankly, in epic fashion.

Here’s the deal. I tried putting off writing this update under the umbrella of having nothing nice to say blah blah blah, but to be honest, I’m not so great at dealing with all of this, and I’m hoping for your positive vibes yet again (yes, I’m being greedy).

Let me back up just a moment and give you the low down so you know what the heck I’m even talking about. Last Wednesday, I had my bilateral mastectomy surgery.  The plan was to remove the 2 small tumors that had been identified by my biopsy , and check my lymph nodes to ensure this cancer craziness has remained in the breast only.  Guess what – sometimes things just don’t go your way, which I’ve been able to demonstrate repeatedly on this crazy  journey nearly every step of the way thus far.

When I woke from the surgery, the first question I asked Tom was about my lymph nodes. I was more than a little devastated when he had to tell me that the sentinel node had tested positive, and my surgeon had to remove additional nodes for testing.  I couldn’t even speak – just tears running down my cheeks – it was about the worst news I could imagine.  Except it wasn’t. (Cue dramatic music)

Friday morning as I was preparing to be discharged from the hospital, my wonderful breast surgeon, Dr. Bretzke, arrived in my room and let me know the pathology report was in a bit earlier than expected. She let me know that the 2 small tumors they thought I was dealing with in my right breast were actually 1 very large tumor measuring 10 cm, and that 2 of the 16 lymph nodes she removed had tested positive for cancer, so I was now being classified officially as stage 3A.  I could barely speak nor function. Even her quiet confidence didn’t soothe me – not one little bit.

Talk about kick you when you’re down (not my surgeon who did all she could to help me, I just mean the whole damned process) it’s pretty crummy to be doing your best to recover from major surgery only to learn that things are significantly more serious and life threatening than expected. Let’s face it – things were decidedly not going my way.

Dr. Bretzke then informed me that because of my standing as a stage 3 patient, I was automatically required to undergo a PET scan which is an imaging test to check for possible cancer invasion in other parts of my body. That lovely little test is scheduled for tomorrow (Thursday) and I won’t learn the results until sometime on Friday.

Here’s where you come in. Friends – I have had absolutely no luck thus far on this crazy cancer road, and to be honest, I could really stand a little good luck tomorrow.  Not lighting up that scan like a Christmas Tree would be kind of awesome, and I would certainly be grateful for that tomorrow.  Even so, what I’m learning is that I face a very long, difficult road ahead of chemo, radiation and hormone therapy and to be blunt – I’m in for the fight of my life.  This is so gross I can barely type it.  I hate this post, and I hate having to ask for your good vibes, prayers, well wishes, etc. once again.  I so wish I didn’t need them, but in fact, I do.  I need them a lot because I’m about as terrified as any human being can possibly be before sliding back and forth on that scanner tomorrow.

Ok – it wouldn’t be a red couch entry without some kind of positive spin, and believe me when I say it’s been a stretch this week. To be fair, I wasn’t trying to be a jerk about not updating everyone, but this has been a tough one for me to wrap my own head around, and truly, I kind of thought it might be easier to wait to post anything until I had the results of the scan.  But, I think I need to feel those good vibes from my amazing village (if you have any to spare – Lord knows I’ve been greedy lately) before this damned appointment tomorrow, and therefore I’m spilling it in hopes of any sort of positive news from this test.  Seriously, I just have to believe I’m due to have even a hint of hope – it would be kind of awesome at least.

People are unbelievably kind and know how to convey it in meaningful ways that make me realize I need to buff up my own skills. Truth – I’m an introvert by nature – often needing lots of alone time to process things, write, ponder, and make action plans.  Sometimes I get way overwhelmed by too many meetings and things, but this always goes in spurts for me and has to be about things I’m completely passionate about or I don’t do well.  Don’t get me wrong – I adore people, and appreciate the variety and depth of friendships/relationships I have accumulated throughout my funky, slightly left of center life, but I’m not what anyone would describe as a people person.  I never know what to say to people, I struggle to put into words anything that makes sense when crummy things happen to others, and I am not such a great friend to most people in my life because my children take up the majority of my time and energy,  and I don’t have much left over.  In short – I’m kind of an asshat in a multitude of ways, even though I wish I weren’t.  It’s a work in progress – I’m trying – but being a good friend is not a strength for me despite my genuine compassion for others.  All that said – while I clearly don’t deserve it, I have somehow collected some of the most amazing, compassionate, caring people in my life that are stepping up, showing support and compassion to me and our family, connecting me to people who know this journey, cooking meals, sending me cards and gifts, and just going above and beyond in general.  Tom and I are humbly in awe nearly every day – for a couple of so-so asshats, we have the coolest village on the planet, and no matter what this crappy scan says tomorrow, I hope that’s what I’m thinking about and remembering no matter how awful the news.

The kids are hanging in there. I’m sharing bits and pieces at a time as not to overwhelm them.  They know I face a long course of treatment, and I’ve shared with them we are going to need the support of our family and friends in order to make this summer work at all.  I can’t even go there right now because the thought of how this is going to affect my offspring is just too much to bear at the moment, and needs to be a different post.  But I’m sad.  Yes, I will spin this positive, and they will learn great life lessons and we will find our way together as we’ve done so many times before with other crazy stuff, but I’m just sad, angry, frustrated, and overwhelmed about it at the moment.  It’s so gross.

Yet, my physical recovery is going better than I expected. I feel quite strong most of the time, and am healing nicely.  I’m not out and about yet, but by next week, I hope to start getting back into the swing of things a bit more.  All of this makes the kids feel confident and our house not so off for them. They continue bickering about who gets the biggest piece of something sweet or who hid the Doritos remain constants.  Frankly, it makes me smile.

So, that’s the scoop. I’m grateful for all the love and support you’ve shown to me and our family over this past month, and humbly ask for your support as I face “the scan” tomorrow.  If you are willing to cross your fingers and toes – I’d appreciate that as well. If you see fit to knock on a few extra pieces of wood – all the better!

It’s a beautiful, sun filled day today. My friend Sarah came to sit on the deck with me and laugh and share stories and let me be sad.  Let’s take some of this vitamin D and turn it into some good news tomorrow – shall we?  If I’m going to get any, this would be a great time to start with the positive stuff.

Last, thank you, wherever you are, and however we are connected – I appreciate you. This process is scary and overwhelming and unbelievably gut wrenching, but despite me being a little too hippie-esque, I believe in the good of people, and have been able to see the very best of what so many people have inside them and consider that a true gift.  I believe that can trump cancer – at least I hope so . . .

Broken Bones & Bye Bye Breasts

Yesterday, Tom fell off a ladder and broke his leg. Seriously.  It’s not a delayed April fool’s joke, though I sort of wish it were.  The fun just never ends around here!  Grateful my mom is here to help out – didn’t realize we’d need a dedicated driver this week.

So, today is my 49^th birthday, and things continue to be fairly gross.  My bi-lateral mastectomy surgery is scheduled for Wednesday, and we’re trying to get things in order for that, prepare the kids, get my recovery zone in place, and now, get Tom some sort of fancy boot so he can drive and return to work at some point.  Of course, he’ll need to cease the oxycodone which is helping his pain, but also making for a fair number of interesting and slightly off topic Facebook posts (I tried wrestling the phone away, but alas, he’s quite talented on those crutches).

In some ways it feels like years since I was diagnosed with breast cancer, and in some ways this experience continues to be surreal. I truly want this step to be over, but honestly, I hate everything about this.  Seriously, Tom & I must have been serial killers or something truly bad-ass in a previous life to have all this drama swirling around us right now.  It’s pure crappy.

Worst – there are still lots of unknown. Has this monster spread?  Is it in the lymph nodes?  What lies ahead – chemo, radiation, yanking out of ovaries, or some other fun?  And after all of that, waking up every day wondering if it’s back – lurking somewhere, taunting me while I try to go about my life.  (Can you see new and stronger anxiety meds in my future?)

The unknowns are the worst. I’ve been very busy, so I don’t have a great deal of time to ponder them.  It’s that middle of the night stuff that gets to me.  I limit my “research” on the internet as none of the news is good, and I ration what I read because I’m so easily overwhelmed, and need to function for the children (and hop-along as well).

Ok – I’m such a downer today! Here’s a pinch of positive – gee whiz do I have a large and compassionate village!  The reach-outs, notes, thoughtful gifts and meal donations are beyond my wildest imagination!  I didn’t even know I knew that many people!  I’ve sort of been socially isolated for so long that I’m literally astounded by the people I know and from so many different corners of my life.  And people are so thoughtful!  Makes me realize how awful I am when horrible things happen to people as I’m the one who feels so cliché and just never can come up with something to say that feels genuine.  Yet, my village members are truly good and thoughtful people!  My gratitude runs deep.

So, I’m scared. This is a crazy week, and I’m not so great with physical pain stuff.  Frankly, I’m a giant wimp who just cries all the time.  There is no doubt I’ll be the patient that instigates a massive United Hospital nurse happy hour on Friday when they toss me out!  I won’t blame them one bit.

Ok – one other cool thing to share. My sister, Kristine, and her lovely family will be moving here from New Jersey in about 2 weeks!  Kristine has not lived in MN since college, and Chuck is originally from the Boston area, so this is going to be interesting for them here in the land of hot dish.  Chuck has a new job, they’ve already sold their house, and they want to buy a house somewhere nearby in our school district.  As Chuck so candidly said “just outside of biking range would be perfect” – and I think that’s fair.  But having them nearby is going to be pretty terrific considering how life is going right now.  For starters, I have a clock for Chuck to hang up.

Thank you to everyone who has reached out, sent vibes our way, and/or done some amazing deed for our family. There is no way to properly convey how thankful we are, but we will try.  If you have any spare good vibes to share on Wednesday, I would appreciate them.

See you on the other side!