Posted in Autism, breast cancer, compassion, parenting, soap, Special Needs Parents

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.puzzle soap

Posted in Autism, breast cancer, compassion, parenting, Special Needs Parents

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.
    • 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.
    • 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!
    • A – We want to adequately honor the enormity of amazingness that was Ada’s 4th 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 4th 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 4th 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!


Posted in Autism

I’m Still Here & You’re Invited!

April 2017

Friends & Family –

Wow – it’s been a heck of a week!  No, I’m not referring to Barry Manilow’s shocking news regarding his sexual orientation, nor my having reached the big 5-0.  Let’s be real – having cancer makes turning 50 a piece of cake!

Will you bear with me for a moment as I oust some ugliness?  I promise this won’t be gross for long, and frankly, may be the weirdest, most long winded, and ridiculous party invitation you’ve had in a while, but it comes from the heart, I promise.

For the last month, I’ve felt unsettled and edgy.  Getting diagnosed with breast cancer seriously stunned me – throw in surgeries, treatments, hormone meds, etc. and it may not surprise you to hear that it was a rough year.

March 8, 2016 was the date I was diagnosed with breast cancer last year.  April 6th was the date I had surgery and learned that it was far larger than imaging indicated (10 cm mixed lobular/ductal tumor) and had spread to my lymph nodes changing my preliminary stage 1 diagnosis to stage 3.  This was a terrifying day and one that’s been hard to navigate this week despite distracting myself with routine craziness, my sister’s lost cat (a guy cat named Creampuff – don’t ask), my 50th birthday and of course, Barry’s news.  No matter what – I can’t help thinking about the debilitating fear and constant bad news that just kept coming and getting more horrifying by the day.

So here’s what’s hard to talk about, and if you skip this part I won’t blame you.  It’s gross – just like everything cancer is gross.  30% of those diagnosed with breast cancer will eventually metastasize and it can happen anytime – sometimes only a few months after treatment, sometimes 15-20 years later.  The randomness of it all is fairly unsettling to me.  Of course, my large tumor and lymph node involvement make my risks of progression higher than most.  That’s really gross.

My type of breast cancer (lobular), doesn’t respond as well to chemotherapy as the most common type of breast cancer (ductal).  This is because it’s usually a slower growing cancer, and chemo targets fast growing cells.  Note – I learned this sometime during chemo, and was not thrilled my oncologist hadn’t mentioned it.  He’s awesome as an oncologist, but we have a tense relationship and he’s looks at me kind of weird when I cry and yell things like “that’s gross” or “I don’t like that news”, etc.  When I confronted him about lower success rates with chemo, he said “lower doesn’t mean unsuccessful” – and I know he’s right, but it’s scary.

Before I had breast cancer, I had no idea what follow-up after treatment entailed.  I had surgery, rock hard expanders (think deflated balloons under the skin but heavy and hard as rocks), chemo, radiation, removal of ovaries (sure, I’ll do surgical menopause in 10 minutes vs. 10 years for the natural kind – holy !@%) and last but not least medicine that kicks the estrogen out of my body and causes joint pain that makes me feel twice my 50 years, BUT (it’s a big but) I have no absolute way of knowing if I am cancer free or not.  I hope my treatment got rid of it all – but I’ve had no imaging or other conclusive tests that tell me I’m cancer free.  Generally speaking, breast cancer patients don’t have regular imaging following treatment – unless you have symptoms.  As you might be realizing, every single time an ache or pain pops up, guess what I’m thinking about?  I’m told this slowly improves over time – the panic of every single thing possibly being cancer in a new place in my body, but at first, it’s emotionally a lot to handle.

Because of the nature of my original tumor, I do have the option of imaging, but my doctor wants to wait until fall.  MRI is the most precise imaging for my weird lobular breast cancer, and until all my plastic surgery is done this summer, I can’t do an MRI because I have metal in my body.

For me, that’s been hard about this week.  I hope it’s gone, but having been betrayed by my own body before, I’m suspicious.  But, going through scans and waiting for results will no doubt bring a new level of stress.  Now that I’ve learned I won’t have scans until fall, and I’ve spilled my guts about being afraid that cancer is lurking, I think it’s time for a topic change.

Here’s the other thing I’ve been thinking about a lot this week.  I’m remembering the moment our tired, stressed out family woke up following an 11-hour-car trip, opened the shades and gazed out at the granite faced mountains of Yosemite National Park (complete with waterfalls) over spring break.  It’s a trip I’d always wanted to take, and we were all so excitedly planning it last year when breast cancer so rudely interrupted.  Standing in front of El Capitan with our trio, shouting “nature” randomly, scaring Henry with fake bear sightings or lines like “could someone ask that bear if he can help us carry the luggage?” are the stuff of lifelong memories.  Seeing Ada G’s excitement over sea otters and seals, and E dipping his toes in the Pacific for the first time – unbelievably cool.  It was incredible, beautiful, stressful, ridiculous and crazy all rolled up into one, and I’ll forever cherish our time away from everything that’s felt so hard this past year.  It was awesome and imperfect, and hopefully, we can add some new parks in the days to come.  Nature!

The other thing I’ve thought a great deal about this week is you.  Because while this past year presented lots of new challenges for our family, we also learned that despite having our fair share of asshat moments, we have some pretty awesome people in our lives.

Heck – when I asked for good vibes – you gave them, in spades!  People from all corners of our lives showed up and gave the very best of themselves again and again, through thick and thin.  In ways big and small, you were there for us when we needed it most, and we humbly thank you.

So, it’s time for us to give back, thank you for the kindness shown to our family, and begin our lifelong mission of giving back and paying it forward.

Also – I’m old, my joints hurt and make me hobble, my hair looks like a chia pet gone wrong and I still have rock hard foobs (until June), but . . .

I’m still here!

So, come and celebrate with us!  For so long, I’ve welcomed you to my red couch here, on my blog.  Now, our family would like to welcome you to our humble little home where you will find the red couch in our driveway – sort of like a welcoming beacon if you will.

The Love Patio in our back yard that so many helped to create will be up and going – the S’mores bucket will be packed full of goods, and weather permitting, we hope to have a bouncy house too!

Because I’m old, we’ll have an 80’s candy corner, Henry is trying to get Pac Mac operational and with any luck – Pong.  We’ll have food, beverages for all ages, and snacks that don’t have a clear theme but are family friendly and hopefully fun.  To top it off – 80’s music (not loud – remember I’m old)!

Ok – I wanted a giant balloon display in the shape of breasts at the end of our driveway, but I’ve relented because someone in the neighborhood dislikes us (remember the grill incident?).

Here are the specifics:

Saturday, April 22nd

Anywhere between 5-10 p.m.  (hello, I’m 50 – I can’t stay up late anymore).

Come for a cocktail on the love patio and stay for the s’mores or depart for some actual fun if you wish, come share some pop rocks with us, walk through my purple Prince bead curtain and yell “nature” just because, come to see if I end up using my foobs as a weapon on my brother-in-law who is determined to be the party dj, or just stop the car and run up to grab a cupcake and some Top the Tator – we welcome/celebrate you all!

Please – no gifts.   I’ve already received the best gift of all – I’m here.  If that’s weird for you – I humbly ask you to help someone else in need when they need it most as you did for me – I happen to know how much it means, and spreading kindness is kind of awesome.  I’m collecting some of the terrific and helpful things I received to gift to my oncology clinic and will have a box out (totally optional – just one way to spread kindness).

So thank you.  Whether I see you the 22nd or not – my gratitude runs deep to one and all.  If you think you can make it – let us know so we’re prepared.  We’ll be the house with the red couch out front!

Love ya, man!

Posted in Autism

So Now What?

I never really thought it would happen to me – breast cancer that is.  I guess no one really does though.  Even after I had genetic testing, the counselor told me that despite my negative results for any known breast cancer related mutations and lack of family history that it might be hard to accept that I’ll likely never know how or why I got breast cancer.   Weirder still – that’s actually the case for 80% of those diagnosed with breast cancer.  I was the norm and not the exception – who knew?

Wow – what a surreal experience this past (almost) year has been for me.  It was March 4th when I innocently trekked up to my mammogram appointment, just knowing that fluid filled cyst they had identified 6 months earlier was what felt funky.  When the radiologist said “I see something” I just sat straight up and screamed for what feels like an eternity, but really I have no idea because I was in shock.  Only now can I feel bad for what the sweet older ladies in the waiting room must have felt!

The next Monday, I had a biopsy, and Tuesday, March 8th is when I received the phone call confirming I had breast cancer.  They had biopsied 2 small spots, so when I met my breast surgeon, she recommended mastectomy because they were far enough apart that lumpectomy was not an option.  However, based on imaging and biopsy, she estimated stage 1, and the strong possibility I would not need chemotherapy.  It was still crazy and scary, but doable.

Surgery was April 6th, 2 days after my 49th birthday.  I had 2 surgeons – first my breast surgeon did the double mastectomy (my choice – I value symmetry), then my plastic surgeon placed expanders (kind of like deflated balloons) in my remaining tissue.  Physically, it was not nearly as painful as I had imagined.  Even the next morning when my plastic surgeon came to examine me, ripped off the bandages and admired his work (he’s incredibly talented, compassionate, and has a sense of humor), it didn’t destroy me to look in the mirror.

But then the bad news started lumping up, and just wouldn’t stop.  Tom had to tell me they had tested a lymph node that was positive for cancer, so they had to remove all lymph nodes on the right side to send for testing.  My surgeon came by the next day and said 1 additional lymph node had tested positive plus what we thought had been 2 small tumors in my right breast was actually 1 large tumor that measured 10 cm, and I was now dealing with stage 3A.  She also said I would need a PET scan to rule out spread to other areas of my body before meeting with an oncologist, but assured me I would be facing chemotherapy and radiation.

Wham!  I was weak physically from surgery, but that was too much to take.  Fear can fuel action but can also just take over, and I genuinely can’t even remember much about that time between learning I had a tumor the size of a baseball in my right breast that somehow evaded my very punctual mammograms every year, and getting the results of my PET scan which revealed no spread.

Then, I got to meet my oncologist.  Lots of medical folk enjoy using sports analogies, and while new cancer patients have what feels like an unending amount of appointments and specialists, your oncologist is like your quarterback.  You’ll be with him or her for the long haul, and he or she is who guides your treatment path.

It may not be shocking for you to hear that I struggled with this appointment.  He’s the guy who has to talk percentages, lay out treatment options and give you his opinion about how to proceed.  My numbers were kind of ugly, and my chance of recurrence higher because of the size of my tumor and the lymph node spread.  However, he also told me I was wise to have gone the route of double mastectomy because the type of cancer I had (mostly lobular) is very sneaky, hides easily, and can often appear in the opposite breast.

So, I learned that I’d need 5 months of chemotherapy, starting with the “red devil” (he didn’t say that, but I knew it from the internet boards), then 6 weeks of radiation, followed by 10 years of hormone medication because my tumors were 99% estrogen fueled.

Fast forward to December – I had completed chemo, and was just finishing my daily radiation sessions with “Trilogy 1/ Trilogy 2” and deciding to add 1 more surgeon to my medical posse.  Having learned that my particular type of cancer responds better to a class of drugs call Aromatase Inhibitors, but in order to take AI’s, one must be post-menopausal I made the choice to surgically remove my ovaries and fast track my trek to menopause from several years to about 2 hours.  O.M.G.

Note:  while meeting with oncologist, plastic surgeon, new Ob/Gyn oncologist, Radiation Oncologist, etc during this time, I am grateful anyone took me seriously at all with my shiny bald head now littered with little patches of peach fuzz here and there, except for right above the ears, where hair was almost an inch with the most ridiculous curl pattern imaginable.  Humbling doesn’t even scratch the surface here, folks!

So, January my ovaries exited stage left, and February 1st, I began taking an Aromatase Inhibitor called Letrozole, which sort of rids the body of any remaining estrogen but not without it’s own interesting side effects.  So, it’s been a fascinating month at our house with 2 teenage boys in the throes of puberty and mom in instant menopause.  There is some emotional instability (shocking, I know!), a lot of crying (not all Tom), and difficulty managing everyday life situations without the aid of estrogen.  But, while I thought estrogen had been my friend all these years, it was actually trying to kill me.  That’s not the kind of friend anyone wants around – so I kicked it to the curb.  Even though it was the right thing to do, the side effects are unpleasant.  AI’s are helpful preventing reoccurrence, but I feel like overnight I have arthritis in every bone of my body, and movement is difficult.  This is actually likely helpful as my emotions are whacked out, and I am unable to truly chase anyone yelling inappropriate words or phrases even if those thoughts are rampant in my thinking bubble.  Not to mention I will need to have my rock-hard breast expanders which I call “foobs” in until June (because of radiation), before I can swap to something slightly more comfortable, like silicone.  It’s awkward as heck to try to maneuver through a crowd realizing you are likely bruising people as you squish by!

So now what?

I remember in the early days, right after diagnosis, that I thought I’d be able to view this experience from the other side with some sort of wisdom and clarity.  The short answer to that would be nope – not even close.  The longer answer which I’ll have to dive into another day because it’s just too difficult to process most of the time is that there is no “after” cancer, and there is no going back to the life I had before.  The betrayal of your own body is a tough one to process – and at least for me, the emotional journey of cancer and learning to manage the fear of recurrence is overwhelming at times.  I try to find joy (without estrogen) in the day to day, with limited energy, chemo brain (yes, it’s a real thing) and ridiculous hair, but I don’t feel like who I always thought I was, and that’s really hard for me right now.

It’s safe to say that I’m struggling to find even little bits of the old me that are recognizable and comfortable.  I’m kind of in this weird limbo – post cancer treatment, and figuring out what I value and how I can make some sort of difference in my own little corner of the world, but not quite knowing how.  Preferably it will involve colors beyond just pink.

Mixing cancer and autism has made for some unique experiences.  At face value, they seem kind of remarkably different, and in so many ways they are.  But having gone through the experience of your children being diagnosed with something that is life altering, with outcomes that are vague yet filled with possibility and for which you must learn to build a comprehensive “village” has at moments felt vaguely familiar.  And just like autism is not something that impacts an individual, but a whole family – the same goes for cancer.  I’m the one with rock hard “foobs” but my people are impacted by my inability to be as active in their lives as I once was.  Tom & I struggle to embrace our new normal, and stumble about trying to take on roles that are necessary to fill, but don’t always play to our unique strengths. Harmony is lacking, and we’re just not finding our groove yet.  No matter what, we’re in this craziness together.

Here’s the really hard part – autism/ADHD doesn’t give a rip about cancer.  Even with the most awesome village around, the inevitable ups and downs will happen.  The difference is that when the boys have difficulty at school, and we are trying to collaborate, I don’t feel the luxury of time to get things right for them like I once may have.  I’m not as patient, because I can’t be – I can’t risk it.  I can’t count on my tomorrows, and while I do realize that is ultimately true for all of us, it’s just true in a more “in your face” way to me.  That is what keeps me up at night as I contemplate whether we’re doing our best for them.

So, I’m bolder, I’m not as cool about a “let’s see how this goes” approach.   Middle/high school is just weird – and my compassion for those who work amongst the sea of hormones in those buildings is infinite.  But while there is much about my weird life after cancer I’m confused about – advocating for my kids is not one of them.  And because the kids are dealing with my having cancer in their own unique ways, it’s been a pretty tough year for them in school.  Lacking estrogen has not made school advocacy go as smoothly as we’d wish, but I believe we will muddle through this and learn from our experiences.  After all, the girl (who happens to be having a fabulous school year) is not far behind.  We need to be ready!

There you have it.  I can hardly believe a year has nearly passed by, and life marches on in so many ways.  I’m hitting a new decade, and just days after will undergo another PET scan to see if all my treatment was effective.  I won’t lie – it already frightens me, even with my anxiety meds and a lot more exercise.  But I am taking to heart what I’m learning from those who have gone before me, and those that are making the most of all their days as they face stage 4 breast cancer – I’m living.  I’m occasionally seeing friends, I’m fighting with my kids about homework, I’m brainstorming crazy new ideas with other special needs parents to make our communities even cooler, and I’m planning an adventure with my people.

Last summer, we had to cancel our long planned journey to visit an array of national parks because of my cancer treatment.  One of my life long wishes is to see the giant redwoods in CA and to visit Yosemite National Park to admire “El Capitan up close and personal – including randomly shouting the word “nature” just because.  After the year we’ve had, Tom and I in a sleep deprived state one night just said (bad word) it, and booked airfare west during spring break.  We’re winging it, kind of.  Not exactly sure how that week is going to go (we would typically put months of planning into something like this), but without a doubt, it will be an adventure, and I’ll get to experience some life goals with the people I dig most before hitting the big 5-0.

Last year, during one of my darkest moments when I was waiting for the results of my PET scan and numbly pacing around our house, I found my sweet Ada sitting at the table creating art.  I sat and chatted with her for a while, and her simple joy made me smile and feel a sense of peace.  My little girl reminded me that love trumps fear, and I’m ever grateful to her.  After I received the phone call letting me know my PET scan results were clear, I found her completed work of art on the table, and started to cry.  The colorful picture now had words across the top – “the world is full of cool stuff” – so I gently tucked it away, knowing it would be something to remember and cherish always.

Ada G, I can’t wait to explore some of that cool stuff with you, your brothers and Hop-a-long next month.  No doubt, we’ll do it with our own unique spin – but it is certain to be an adventure!

Peace and love all around . . .


Posted in Autism

Big Hairy Deal

I hate being bald.  So gross!  Ok, technically I have about ¼ inch of fuzzy stuff – mostly just above the ears – with a fascinating pattern of complete baldness where my bangs should be and a few stray funky sprouts on the top of my head.  Many days, I feel like my teenage boys and I have more in common than ever with their journey through puberty and my journey back from losing all body hair during chemo.  My chemically induced hormonal craziness just makes us all the chummier!  It’s a regular party around here some days – I’ll let your imagination fill in the blanks.

Having no hair just plain sucks.  The weather has grown cold over the past week, and I never realized how helpful hair is for regulating body temperature.  Wearing a wig is uncomfortable, and makes me horribly hot.  There is no middle ground – wig = furnace/ugly sweating & baldness = freezing cold.  I know – I’m just a regular picnic of positivity – don’t you think?

Here’s the deal – the physical aspects of hair loss are flat out minimal compared to the emotional for me.  For someone who has always felt sort of average in every way – I’m not thrilled with the attention/looks/stares/horrified glances I receive wherever I go.  Am I exaggerating due to extreme discomfort?  I’m sure I am because even while I may notice the nuanced quick double take (because I’m looking for it) most people are just busy doing their own thing and move on with their own crazy/busy lives without giving it a second thought.  Besides, it’s not people that bother me, its cancer.  It’s not as if anyone even knows or recognizes that they do it – it’s just a natural reaction.  The same reaction I’ve undoubtedly had for all these years leading up to my diagnosis even without knowing or consciously thinking about it.

Sometimes, I can sense people trying to get away from me as quickly as they can.  Again – not really me, but the visible “I’VE GOT BREAST CANCER” kind of beacon that radiates like a blinking giant Grain Belt sign subconsciously all around me.  I don’t blame them at all even when it’s quite noticeable.  Instead, it makes me think about their own secret book chapter that no one knows about.  Maybe their Mom/Grandma died of breast cancer?   Maybe their best friend from high school just got a recurrence and is struggling with all that it entails?  Maybe they don’t really know anyone at all with any kind of cancer, but it’s just weird and scary and they want to avoid it?  I know I’d like to!  Wish I could join them as they tactfully navigate as far from me (cancer) as they can get.

It’s just that for right now, my private book chapter is wide open for everyone to see – even if I’d rather just shop for milk and the occasional container of Poppy Cock in peace (yes, I did include Poppy Cock on purpose with the intention of being inappropriate – I own that).

Alas, I actually get similar looks when I’m wearing my wig, which is infrequent.  All summer, I barely wore it at all because it was horrifyingly hot.  But I have a loose rule for myself about semi-consistency – so for instance, I always wear a wig to school meetings, so I will continue to do so.  I never wear a wig around the house (usually one of a giant pack of colored bandannas just for comfort), so I won’t start doing so here and there “just for fun”.  Sadly, the one place it’s hit and miss is my local grocery store.  It’s walking distance from my house, and it has a Starbucks.  I rather love coffee, and to be fair, heavy caffeine use has gotten me through more than a few challenging days.  I get the funniest looks from the staff there – mostly that “you kind of look familiar, but I can’t place you” look, and I feel sort of like I’m duping them, but it’s unavoidable.  Sometimes I need coffee before a meeting at school, and I have my wig on, and sometimes Ada & I walk there as we’re discussing whatever drama is occurring in 4th grade that day.

I know there are many who have done this cancer/baldness thing very differently than me.  There is no right or wrong way to do it – and while it may poke at my insecurities more than I’d like, I recognize that not everyone feels that way.  I know some who never wore a wig nor covered their head and felt perfectly fine with it.  I also know of those who were never without a wig when in public and even had family members or friends never realize what was going on because that was important to them.  For what it’s worth – prior to my hair loss I didn’t believe I’d care as much as I do – I mean it’s not like I had awesome hair and my youth has frankly already exited stage left.  It was just part of me, and for whatever reason, I miss regular old me more than I knew I would.

The last few months have been unbelievably challenging for me – mentally, emotionally, and physically.  I’m tired, my muscles ache, I have breast expanders in that look like breasts but feel like heavy rocks and my children now ask for side hugs so I don’t hurt them.  These beasts won’t be swapped out for silicone until June because my skin will need to heal from radiation, so for now it’s me and my foobs.  Yes, it’s horribly gross, but I believe I could use them as a self-defense weapon if needed, so keep that in mind!

I’m sad, I’m tired of being tired, I’m forgetful, I’m missing out on too many parts of my life that I value and I’m worried that my treatment is negatively impacting my children and our family.  There are many days I recognize the life lessons my children are gaining experience with during this journey that will benefit them in the long haul – today is just not one of them.  I’m frankly cranky with cancer today.

Some nights, I lie awake and worry about whether or not it will return.  Before I was diagnosed with breast cancer, I had no idea that 30% of Stage 1, 2 and 3 breast cancer patients will at some point progress to stage 4, otherwise known as metastatic breast cancer – the only breast cancer that kills you.  Sometimes I scroll around on a breast cancer online support group that lists details about your diagnosis and other particulars about your specific cancer (hormone receptor status, HER2 status, etc), and struggle with the sheer randomness of who progresses and why – there is no discernible pattern and it’s alarming that it can return in 6 months, or 16 years or never.  Even though I’m still firmly in the thick of things, I wonder if the day will ever come when I feel a sense of peace and just make the best of each day with an acceptance of the uncertainty?  Even better would be for science to focus on ways to help those living with stage 4 breast cancer so that it becomes more of a chronic disease or best of all – develop a cure.

Autism, of course, doesn’t care that I’ve been in breast cancer treatment mode since March.  We have the most amazing village around, but even so we continue to face new and different challenges with each of the kiddos.  This week, we’re working through some school wrinkles with E, and I left a school meeting yesterday with blotchy red eyes from crying for an hour, embarrassment for not having an ounce of emotional stability for what is quite frankly not nearly as serious as some things we’ve faced, and to top it off – a crooked wig.  (Yep – now we’re back to hair.)

Elliott made some poor choices today on my Facebook wall and sent a few unexpected emails to teachers and administrators.  He needed to be reminded to use his manners, turn his day around or face the loss of privileges.  Sometimes he can think things through and get positive and sometimes not – I was not optimistic given my mood and the day I’ve had.

He walked in the door, said hello, and immediately apologized for his actions.  Then he said “I may have had some challenges at school today and I want to tell you about them” – he did so (all were soon confirmed by a teacher email).  He was calm and told me some things that have been weighing on his mind of late – some that I didn’t know – some that are likely contributing to his challenges.  He expressed himself so well, and owned some things that I didn’t know he fully grasped, and it was a mom moment I’ll be forever proud of.

Then he started to walk downstairs, but turned around and said “I wrote on your Facebook because I like to see your picture with the wig on” – I asked him if my hairless head was bothering him, and he looked right at me and said “no – I don’t care that you’re bald, I just think you have a really nice wig”.

Kind of made my day.  Now he’s vacuuming my counters (don’t ask) and baking a pumpkin pie.  As a bonus, Henry is (mostly) caught up on his missing assignments and Ada has made vast improvement on her musical recorder skills.  Day by day – one foot in front of the other.

May you find a bit of peace and joy in the everyday simple things life gifts you – no matter what your hair looks like . . .

Posted in Autism, breast cancer, compassion, Inclusion, parenting, Special Needs Parents

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:

senator clausen and E

Last winter, my special needs Mom pals (Heather TiddKelly 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!


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).  e cross country

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!



Posted in Autism

Wigs, Whacky Breakdowns & Wheelbarrows, please!

Friends –

It’s been a while.  I’ve thought of writing, tried writing, and frankly, there was just a period of time in there where I just didn’t have nice/positive things to say.  As you know, I don’t mind sharing some good, some bad and even here and there – some ugly – as I truly do believe it can be weaved in when contextual, but no use just being a downer – that’s gross!  But when I did have the energy or anything more uplifting to share than “man, I’ve got a very unattractive infection puffy and painful under my new foobs” I used it on the kids, planning for summer or reading about my particular breast cancer and my particular treatments (also being ridiculously frustrated with a few folks at Henry’s school – but let’s save that for another day, shall we?).

Bottom line – I’m not so good at this cancer business.  I see videos of cancer patients out running, sometimes with smiles on their faces, and frankly, I’m just going to own that I’m thinking evil thoughts about them.  I’m also not embracing the bald thing – I know I’ll get there, but not yet.

My surgery recovery actually surprised me in a good way – while everyone is different, the bilateral mastectomy was easier than C-section was for me.  I was out walking, had decent mobility with my arms over my head in short order, and was up and living life except for heavy lifting.  However, a few weeks later, my world started to crumble a bit – infection and fatigue did me in.  Not to mention all the Prince news which for some reason freaked me out enough (and with enough sleep deprivation, this seemed logical to me) I stopped taking my pain pills and muscle relaxers that had been prescribed to me following surgery.

Top all that fun off with Tom’s broken leg, trying to arrange a myriad of meetings with the various schools and programs we work with planning for summer and next school year programing for the trio, writing plans with our social worker for the kids, getting the kids to their various activities and trying to take part in whatever events we could while we could.  Guess what – I imploded.

One of the hardest parts of this cancer journey for me is that I am having a really hard time accepting my own limitations due to cancer.  I keep chugging along until I don’t, and then things get messy.  In this case, it was at my Grandma’s 95th birthday party, and I had a giant mental breakdown in epic fashion (ok, after the party at the hotel, but still).  It was unbecoming, it was ugly, it was sad.  My kids were concerned about me and rightfully so – they get it now.

That Monday, I arrived at my amazing Plastic Surgeon’s office, and owned every ounce of what had happened.  He looked at me and said “are you taking your medications?” and my reply was something like “no, because I don’t want to die like Prince” which seemed so perfectly logical at the time.  Huh.  Interestingly, just a few hours later, I was called due to a last-minute next-day 2-hour-cancellation with the rock star Oncology Psychiatrist they had suggested I chat with about ongoing medication needs through this journey – though she’s typically so booked up I wasn’t originally scheduled to see her for a few more months.  Amazing coincidence, right?  That said, she had a nice chat with me about addiction vs. dependence and how during my journey my medications are going to be vital to getting through all of this in one piece.  I liked her, and she also reminded me that my meds are not the same as Prince’s were anyway.  Ok then.

Chemo started, and I tried to make peace with the red devil.  I’m trying hard not to view these chemo drugs as an enemy but as a tool to taking out any remaining bad guys lurking around in my body.  Monday was my 3rd of 4 treatments with the Red Devil (aka AC chemo), and then I will begin 12 weekly treatments of Taxol, which I’m told is often easier on the body than AC.

Truly, my side effects while unpleasant are hardly the same as many bad made for tv movies I’ve seen from the 80’s or 90’s.  It’s kind of cool how they manage side effects and counteract white blood cell count issues (I wear a small device that gives me a shot of neulasta about 27 hours after chemo ends – can’t even feel it, but it strongly suggests that my bones kick white cell production in gear, and it works!).

I’m fatigued, the neulasta does cause some bone pain, my taste buds are weird and I caught an awful cold that got kind of serious in a hurry after my 2nd treatment.  It left me bedridden and isolated from everyone for nearly a week, and I’m still not over it.  I’m careful to not be in groups in enclosed settings these days, and have to miss more events and family functions than I’d like, but after being so lonely, it was kind of awesome hanging outdoors at the El Loro patio last week for a short time with some pals.  I mostly just cried about being bald, and yelled a few bad words out loud about this crazy journey, but they were cool with it.  People really are amazing when life gets ugly, aren’t they?

Speaking of – for anyone out there who is so inclined to offer help, support, labor or even some mild heckling – we need you this weekend!

Our amazing extended family has gifted us a gas fire pit.  It was especially kind as the kids were so sad we had to cancel our epic road trip to national parks of the west this summer.  No doubt – it will be rescheduled at some point, but this summer, we’re home bound more than usual.  The fire pit will be a way for us to welcome friends and family, and this weekend, we’re hoping to enlist some help in creating a 16 foot diameter circular paver patio in our backyard to put the fire pit on.

The plans are created, the supplies from Lowe’s are at the end of our driveway, we have step by step instructions and we’ve rented a serious electric tamper tool to help out with this crazy fun.  That said, Saturday will be our big project day – it’s supposed to be a warm one, so we’re hoping to get started early (note that when I say we, Tom aka “Hop-a-Long” can’t lift anything at all after he violated his original no lifting rules and then had to have surgery to implant a steel rod in his leg a couple of weeks ago).  That said, his talents are many, and there are plenty of ways Tom, our trio of enthusiastic random acts of kindness bestowers, and my somewhat inappropriate heckling and hope to provide an excellent spread to anyone who helps us in any way will encourage some volunteers.

If you are game, here is our wish list:  use of any shovels and/or wheelbarrows.  Volunteers willing to use a wheelbarrow or a shovel to carry supplies to our back yard and dig down 6 inches in our crazy clay soil to create a 16 foot circle shape.  Dump gravel and then sand in the circle, and then lay the paver stones.  If you have an hour at some point on Saturday – we’ll take you!  If you’d rather just leave your wheelbarrow at the end of the driveway with your name on it so we can return it and run away as fast as you can – do it!

While a bit unconventional, this is something that would mean the world to us.  We’ve been a bit isolated of late, and this will be a way to include our friends and family in our lives more easily, and give us a spot to welcome folks and create some very creative smore’s.

We’ll get started at 8 a.m. for any early birds and because it looks like it may be a warm one on Saturday.  If you think you can help out in any way (supplies or strength), just email me or my pal Heather who has foolishly agreed to help coordinate this craziness in hopes of achieving completion in one day.  Also – we want to ensure we have enough snacks (note the possibility of a unique signature cocktail!) or

Last, while it’s been a challenging time for our family as a whole, our kids are stepping up in new ways, and it’s kind of awesome.  We are overwhelmed by the kindness of the amazing people in our lives that have shown us compassion, good deeds, thoughtful notes and gifts – and helped us tremendously during the most difficult of days.  My humor is not as sharp, and I cry a lot more these days, but it’s an overwhelming experience in so many ways, I find it hard to process most of the time.  Plus I’m just kind of funky anyway.

Enjoying the friends and family in our lives is one of our core values (even when E asks how long you’ll stay and directs where you park), and that’s why we are so grateful to be able to create this backyard space on Saturday.  Should you be able to help – thank you.  If you’d rather not but can send good vibes our way – that’s ok too.  No doubt, we’ll be looking for ways to pay it forward as soon as we’re able!  Love ya, man!

Posted in Autism, breast cancer, compassion, parenting, Special Needs Parents

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 12th.  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!

Posted in Autism, breast cancer, compassion, parenting, Special Needs Parents

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 . . .

Posted in Autism, breast cancer, parenting, Special Needs Parents

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 49th 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!