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!


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 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!

Bad Breast Cancer Day

bunny 3

Yesterday was a crap day.

Not even going to try to sugar coat that one, nor pretend that I dealt with it as best I could. In short – I didn’t.  I just fell apart – multiple times, in front of my children, my cats, and some random guys who were here pounding really loudly on my kitchen floor.  Yep, that was awkward.

So, here’s where I’m at. Really gross radiology appointment where I was first told I had a very suspicious mass that was likely cancer, followed (a few days later, no stress there) by a biopsy where I learned it was actually two areas, and then the phone call revealing both biopsy sites confirmed breast cancer.

Note – that few days between the radiologist telling me I’m likely in for one really difficult year to confirmation that it was indeed cancer was when the fear was craziest and I was barely functional. Really the only thing that kept me remotely able to get through the day emotionally was some serious anxiety medication from my health care provider that had me sleeping almost constantly.

Next was my initial meeting with my surgeon, and while that likely sounds super scary, it provided a small sense of comfort. She was soothing, honest and upfront about what she felt was going on – two fairly small areas likely not connected, and no obvious signs of spread to the lymph system from the radiology reports.  She was straight up about my need for mastectomy instead of lumpectomy, but to be fair, I think there was almost a sense of comfort about that just because of who I am and where my mind travels during the dark.  Knowledge is power, and she laid out something far better than what I had feared during those days between finding “something” and meeting her.

Then, the reconstructive surgeon appointment, which once again was oddly soothing. Part of it was just him – he’s very good, and deals with sad women thrown into this crappy situation all the time.  Still, his large 3-ring binder filled with before and after photos provided a small sense of comfort, and the visual confirmation that a year from now, my new “me” might be ok (depends on “side boob” according to my friend Sarah, but let’s save that discussion for another day).  Maybe the best part of that appointment was when he acknowledged that while this was emotionally devastating for me, that for him and for my cancer surgeon, I had what he referred to as “garden variety breast cancer”, and there’s this odd sense of comfort about being what they suspect is kind of ordinary in this situation.

Next up – surgery scheduling. Ok, here’s where the funkiness begins.  Both of my surgeons practice at different hospitals, but connect a few times a month for people like me.  They are also both kind of awesome, which is beyond fabulous for me, but not so easy in the hooking up for surgery department.  On top of that, my breast surgeon was out last week on vacation, so my very sweet cancer coordinator could only tentatively schedule my surgery which we penciled in for April 4th – my birthday.  She told me that the surgery was a bit later in the day than typical for my breast surgeon, and she didn’t anticipate a problem, but also didn’t want to interrupt her vacation to confirm so she said I’d hear back on Monday.

The trio has spring break this week, and (of course) the contracting company our insurance company has on board to help restore our dishwasher flood damage is starting their work this week. It was Monday afternoon before I realized I had not heard back, so I sent a quick email to my coordinator.  That’s when I learned that she is now out of the office on vacation, and her fellow coordinator is helping her out this week, so I forwarded my note to her.  It was late Monday by this time, so it didn’t surprise me that I didn’t hear back.

Yesterday (Tuesday) morning, I received an email from my coordinator’s partner, and that’s when I suspected an issue. Though I had explained that I was just waiting for my confirmation on the time for the 4/4 surgery date, instead her email was something like – ok, just confirming that we’re doing a double mastectomy with reconstruction, right?  And then letting me know that the surgery scheduler would be calling me shortly with further details.  Red flags were up – I took extra Prozac and made sure Elliott was up to date on his cannabis.

Late morning, I got the call – it didn’t go well. She told me she was confirming my surgery date for April 18th, and then I lost it.  Literally just freaked out – not in anger, zero to ugly cry in 2.2 seconds complete with sadness/confusion/alarm & exceptional discomfort.  I told her I was confused as we had been just waiting for a time confirmation on the 4th and she explained that the earlier procedure my surgeons are completing together on the 4th is a complicated case and they just couldn’t squish me in.  I was devastated.

So, in the midst of all this, the guys working on preparing our kitchen floors for installation left our front door open, and the kids could not find our rescue kitten, Franni, who loves to run fast and climb tall trees. That said, here’s the scene, sad kids in tears about not being able to find Franni (except Elliott who just kept yelling “2 cats is enough – just let her go”, exceptionally loud pounding and sanding machines creating a sort of fog, and some emotionally difficult news from my surgery scheduling friends.  All this, on the only decent weather day the kids are likely have this “spring” break in MN which naturally already has my mom guilt on high.  Suffice it to say GIANT ANXIETY ATTACK.

I couldn’t even form sentences, so I texted Tom with the details, and he immediately sprang into action. He called Carol, who is the amazing coordinator the biopsy radiology center has that actually chooses to work with crazy people like me.  She’s the kind of person I’ve always wished I could be more like, and has what I would imagine is one of the hardest jobs ever – calling people and telling them they have cancer.  Believe it or not, she does it as gently and with as much grace and compassion as is humanely possibly.  Rather than remembering for the rest of my life how horrible it was to get that phone call, what I know I will remember was the skill, care, compassion and heart that Carol utilized.  She’s just all around good people.

You see, Carol is the reason I even got in with my surgeon. As often happens in my crazy life, different paths collided, and the sweet nurse that works with the biopsy radiologist who had my case was an autism mom.  She even “got” what the heck I was talking about when I told her it would be difficult for me to drive up to Maplewood, get my original disk of scans, do an IEP meeting and then head off to a biopsy appointment in Edina.  She went above and beyond to help me (we even talked social IEP goals for girls), and she hooked me up with Carol.  Carol used to work with Dr. Bretzke, and had booked my appointment with her prior to even calling me with “the news”.  She’s that good.

So Tom detected this was kind of a big deal to me (yes, I’m deleting some vocabulary words here that shouldn’t be in print but you can likely imagine them and insert them right here) and reached out to Carol – they were also breast cancer bff’s by now. She somehow worked some magic with people who help coordinate two ridiculously busy surgeons and their schedules, and I am now booked for surgery at 2 p.m. on April 6th.  There’s a whole bunch of in-between that Tom hasn’t even shared with me about how this went down, but I’m certain it was gross.  All in all, Tom Kramer is all right, and I am lucky to have him.

The 2 week delay thing – well, it was just too much. I know that it’s just my anxiety, but in my darkest moments, I can just see those sneaky, creepy little cells cruising around and hiding somewhere and every day that I wait around with my poisoned, bruised (from biopsy) right breast gets more difficult.  Logically, that’s not consistent with what I’m hearing from my medical team, from the articles I’m reading, etc. but that’s just who I am, and the Prozac is not taking that away.  The boobs need to go, as that’s when I’ll get more concrete answers about what the heck is going on in there, and the best ways to keep it away.  Whew – I’m grateful my village worked some magic, and that the path ahead seems to be coming more and more into focus.  It’s just a journey I’m not so comfortable with in general, but no one is, right?

About 30 minutes after this fun, a migraine came on at full strength, the pounding and sanding in the kitchen got louder, and the meds got stronger. It was just not my day – emotionally and physically, I was dangling at the end of my rope – and feeling like a crappy mom who doesn’t know how to share any part of this process with my trio without scaring the crap out of them.  Autism and Breast Cancer are going to continue to be a very funky mix – I’m not at peace with facing both simultaneously yet, but it’s not my choice to make.

Frankly, everything about this is just overwhelming – people are truly good, and often junk like this brings out the very best in folk. It’s like having the creepiest thing imaginable (cancer in this case) remind you that no matter what, when something like this happens, your village appears, and shows up right now!  It’s humbling – it just is.

Ok – two small ASD related updates because let’s face it – my breasts have dominated my thoughts and this blog a bit too much of late.

First up – E man. Remember all those amazingly long and depressing red couch posts over the past 2 years about how E and middle school don’t pair well?  Since last spring, he’s been hanging out in his smaller, more structured school, and while we worked through a road bump or two – he’s been having some rock star success.  Get this – I just received one of those IEP Progress Reports school sends out that usually make me want to puke detailing any progress toward specific IEP goals, and he’s already met 2 of his goals (remaining on-task with non-preferred tasks & appropriate social interactions including sensitive subjects).  Best of all, because of his hard work, determination and appropriate self-advocacy, he started attending Henrys middle school last week (no, I’m fairly certain Henry still has no idea and yes, we told him) for a 1st period math class each day, and it has been very successful thus far!  He told me he got to meet the Principal, but “not in a bad way – in a manners way”.  E man rocks, and so does medical cannabis.

Second, Ada’s IEP was last week. Sure, IEP’s and breast cancer may not seem fun, but I’m going to flat out say it – this was by far the very best IEP we’ve ever had for Ada.  Not because she doesn’t continue to face challenges navigating a mainstream setting as a girl with mild autism/language deficits, but rather because we’re all the on same page.  Her team just “gets” Ada, and we even got to brain storm with one of the amazing special ed. coordinators to get some social goal ideas for girls (this can be quite tricky), and she had some great ones.  Ada’s pride about her school and her blossoming social connections are hopeful, and I think we’re all prepared to hoist that bar just a little bit higher, and empower her to embrace 4th grade with zest. Ok – that was a bit overly optimistic, but I think you get it.  The girl is happy, holding her own, and continuously trying to boss the brothers around – win-win!

No, I’m not purposely leaving Henry out here, but he has inherited my anxiety and is not quite himself at the moment.  Positive goals & meetings forthcoming.  That said, he has used spring break to share with Ada why people laugh when talking about the planet Uranus.  I’m certain the 3rd grade educators will be thrilled with this development!

Last night, Ada and I were reading the new book our friends from Amazon delivered – “Have You Filled a Bucket Today?” which is a charming little story meant to encourage young folk to be kind and spread good will by “filling buckets”. The book maintains that every person has a bucket, but it is imaginary, and it can be filled or depleted based on your actions (you get the drift).  My sweet, creative, somewhat literal Ada G really enjoyed this story, but struggled with the whole imaginary bucket concept.  We decided to sleep on it.

This morning, I was doing paperwork on the red couch when she appeared at the top of the stairs holding a small stuffed t-rex, an overweight Siamese cat and mismatched pj’s and said “Mom, my bucket kind of hurts this morning”, and you know what? For some reason, that just made complete sense to me today.  My bucket kind of hurts too . . .

Breast Cancer, Autism & Home Remodeling – why not?


Ok – things are still gross (just want to throw that out there – I’m nowhere near ok with this craziness yet), but bit by bit, they are taking shape, and every once in a while, I feel like this is going to be doable. Most of the time, I remain kind of crabby and wallowing in self-pity, but I have found my way to inappropriate humor for fleeting moments, and for now, I’ll take that.

Yesterday, I got to meet my reconstructive plastic surgeon, Dr. Migliori, and he’s my kind of people. I had heard from my friend Sarah who has traveled a similar path that he was the bomb, and indeed, he really was.  He expressed compassion, he inquired about our children and how they were doing with all of this, he made discussing boobs as comfortable as possible, and best of all, he “gets” that ridiculous humor is going to be the key to me making it to the other side of all of this crap.

We looked at photos of lots of different breasts, which were all different women he had worked with, each with different “case numbers” below them and no doubt hundreds of cancer journey tales both different and similar to mine. It felt strange looking at breasts and envisioning what this process will look like and feel like during the different stages of reconstruction.  I needed to do that, but it was still funky.  Sure, it wasn’t horrific for this mom of 3 in her late 40’s to hear that in all likelihood I will be able to go running in a year without any form of “support” and be rock solid (I’m still frankly dismayed by this!), but I’d no doubt rather stick with what I’ve got and accept gracefully what age, experience and gravity have done to me.  Importantly – because of cancer that choice is no longer mine, and so, I’m trying with all my might to see any hint of faint rainbow at the end of this very ugly storm.

Most of all, he was kind, he acknowledged how painful, icky and jarring it is to be thrust into all of this craziness so abruptly, and he assured me that while he could not take all this grossness away, that he could do his best to help me feel like a new version of me complete with tattoos if I choose. Wow.  He really does “get” this, and I am beyond lucky for the chance to work with him, and with my breast cancer surgeon, Dr. Bretzky.  They team up for this type of project – roughly 1 ½ hours per surgeon, which frankly seems remarkable to me.

After the scheduling teams chatted, they reached out to me this afternoon to let me know we’re tentative for April 4th.  Ironically, that’s my 49th birthday.  They asked if that was a problem for me, and I said no – these rogue cells need to be gone, and that seems as good a birthday gift as I can imagine this year.  Game on.

It’s been a crazy few days filled with ups and downs and kind reach outs and seriously whacky situations galore. My aunts came to town in an attempt to cheer me up despite me sharing what a crappy place I was in.  Indeed, they did get me out into the sunshine, made me laugh, helped me do fun junk with my offspring, and prepare our toes ready for spring.  Sometimes I was a crying jerk, but that’s not that unusual to be fair.  I don’t deserve them.

Sunday afternoon, Ada shared with me that she didn’t want to hug me as she didn’t want to catch my cancer. She also said that Elliott told her I was going to die soon because of cancer.  This caught me off guard, and I tried with all my might to keep it together while bringing the trio up to speed on what we know and don’t know at this point.  Our discussion was honest, and while I can’t promise my kids I’m going to be fine, I did let them know that everything I’m learning from my medical team thus far is positive.  I hope to be here causing great problems for them well into their adulthood.  Come on – they owe me that!  This situation reminded me this needs to be an ongoing dialog done regularly.  Just another new spin on ASD for our family – we’ll just need to keep learning together, and we all have a long way to go figuring out how to do this.

Yesterday, my friend Kris came over and was an enormous help distracting me before my surgery consult apt. Our kitchen/living room area is still completely ripped up/nails exposed floor as we had decided weeks ago to take this opportunity (given to us by our faulty dishwasher last month) to make some additional changes to our kitchen layout.  While this kind of thing overwhelms me anyway, throwing in breast cancer as we prepare for home renovations is just plain crazy pants.  She had me out taking photos of light fixtures, carpeting, and even cabinet hardware, and I only cried a few times.  She easily downsized our giant bag full of samples and craziness into a small ziplock – and that really does rock!  Without her, Elliott and Ada would have bright pink everything.

Today I got to accompany Ada’s class on their field trip to the zoo. It was actually quite fun to just forget about all the ugliness of thinking/planning the upcoming months and just hang out with 3rd graders watching penguins bicker about who got the biggest fish snack.  She loved it, and sometimes it’s nice for me to just recognize how far she has come on days like this where all the kids just enjoyed one another and laughed and negotiated where to go next and which animals smell the worst.  I need to remember this day when math makes her want to resign from school again.

While the field trip was fab, we did have a fascinating exchange at the bus stop this morning. Ada and I were chatting with one of our neighborhood pals waiting for the bus, and out of the blue Ada looked at me and said “Mom, I’m not going to touch your breasts – you know, because of the cancer” – yikes!  Just then the bus pulled up and while our friend looked a bit freaked out, I’m quite certain I did as well.  Just another reminder that we’ll need to find a way to work on socially appropriate breast cancer dialog or our check-out friends at Target are going to be hearing all about my breasts in no time.  Wow.

Most of all, this remains a roller coaster. I have so many thoughtful, heartwarming, and encouraging messages/notes/emails from people that I haven’t even come close to responding in a timely manner and thanking them.  I feel like a big jerk as I hate not feeling like I’m using my friendship skills and manners, but right now, I’m just not able to be on top of things.  Trying to get things – yes, even big-deal-important things – in order before surgery and whatever comes next is stressing me out a lot.  I know I can’t keep up with what I do now, but how the heck can I not?  We will muddle through, I know we will – but I hate that this is all happening, and I can’t help it.  It just blows – and I can’t pretend it doesn’t.  Ugh.

Ok – tomorrow morning is Ada’s IEP. I am less prepared than I’d like to be, but I have faith it will be ok.  Besides, who knows what all these wonderful people have heard from Ada about my breasts?  This could be a fascinating discussion – wish me well . . .




The Plan – thus far

It’s still gross but I do feel better.

Ok – got to meet my breast surgeon today, Dr. Bretzke. First, I kind of liked her.  To be fair, I know that is far from critically important, and I’d rather her ultimate strength be in the surgical area and would admire her regardless.  Still, it’s just a bonus that I feel her confidence and strength and knowledge spinning all around when I share space with her and she’d be a fascinating person to chat with over wine.  Alas, my time with her will not be as light hearted and interesting, and for the most part, I’ll likely be asleep when we meet again, but I’m feeling more and more like my path is becoming a bit more visible.

First, she handed me a copy of my pathology report. It’s seriously funky and long and not super uplifting reading material, but she helped us interpret which was very kind.

I have 2 tumors – 1 at 9 o’clock (yes, they use clock terminology), and 1 at 12 o’clock. Based on the testing thus far, it appears that they are 2 separate tumors, however, it is possible that they are 1 larger tumor, and we won’t know that until surgery.

As far as hormone testing goes, both tumors are Estrogen and Progesterone receptor positive, which I’m told is a good thing because there is a clear treatment to inhibit redevelopment, and that was the 1 absolute she shared today. I will need to be on a hormone medication for the next 5-10 years following cancer treatment.

The other test they did was more inconclusive. It’s a test for HER2 – one of the biopsy sites was inconclusive, so we won’t have results until after surgery.  This also makes predicting what steps follow surgery more challenging at the moment.

Ok – surgery. Yes, I need it.  I’m not a great candidate for a lumpectomy because of the 2 tumor locations not being close together.  She recommends a mastectomy of the right breast.  I asked about the left, and she said it’s my call.

Because anxiety and I are not friends, and I would constantly be worrying about my left breast (not to mention symmetry issues – right side would be 20-year-old Kammy and left side would be following-3-offspring Kammy – yikes!), they are both exiting stage left and my new friend, Dr. Miglioni, will help me with reconstruction. This is clearly someone I need to befriend, and have Elliott bake brownies for!

Surgery is likely to take place in about 2 weeks – however, the exact date can’t be scheduled until I meet with Dr. Miglioni, the reconstructive surgeon (reconstruction occurs immediately following mastectomy – one surgical team leaves, the next comes in), so it all kind of happens in synch, which kind of amazes me.

They will do lymph node testing during surgery, and further testing on the tumors that will guide treatment moving forward, but those results won’t arrive until a few days following surgery. As of right now, Dr. Bretzke is considering my case to be clinical stage 1, but if the tumors are actually 1 larger tumor and if my lymph nodes do test positive, that will change to stage 2.

She has already referred me to a medical oncologist who will help us decide whether chemo or radiation are next, and after that fun it will be further constructive surgery and then hormone treatment.  All in all, she feels like my journey in the immediate sense will be approximately a year if all goes well (pounding on wood).

So – it’s not a party, but I have to say I feel so much better after meeting Dr. Bretzke and the amazing team of coordinators and nurses from the United Breast Center. This journey continues to have some unknowns, but I can say that today feels a heck of a lot better than yesterday, and that’s a start!

Most of all, our village has been overflowing with messages of hope and healing and good vibes like crazy. The kids are hanging in there, Tom found a Packer Backer (my nurse coordinator) and I have chocolate.  But above all, in the face of serious ugliness, I feel immense gratitude for the boatloads of amazing people in my life.  For an introvert – I’m genuinely surprised and humbled to have connected with so much amazingness in my life. Who knew?  Kind of heart warming to feel supported from near and far, and I thank you.

This is still going to be gross, and I’m still in need of your positive vibes when you can spare them, but there is a lot more hope today than yesterday.

In short, love ya, man.


The Big “C”

Yesterday I was diagnosed with breast cancer. That’s gross to even type.

The past week has been pure awful, and believe me when I say I’m trying to sanitize it here. I’ll give you the down and dirty, as that seems as good a place as any to start.  Here goes:

I’ve been doing annual mammograms since 40 – even had a baseline at 35 as requested by my doctor. Twice in the last 3 years, I’ve been “called back” for further testing, and told that I have dense breast tissue, and that I would likely be someone who gets called back more frequently.

During a regular visit with my health care provider recently, I shared with her that I felt something funky in my right breast, and she suggested I get it examined, and wrote out the order. Last Friday, I went in for the testing, and learned that I had a “highly suspicious” area that needed to be biopsied – so that happened on Monday.  Tuesday about 4:15, a very sweet nurse coordinator named Carol called to share the results with me, and I learned I have breast cancer.  (Yes, I’m leaving out a crap load of screaming, crying, a new anxiety medication that has had me sleeping roughly 20 hours/day, and every horrible thought you can possibly imagine – but that goes without saying, right?)

Here’s what I know so far, and it’s not much. I know that they biopsied 2 areas, and both have tested positive for breast cancer.  1 is called Invasive Ductal Carcinoma – Grade 1 and the other is Micro Invasive Mammary Carcinoma – Grade 2.  There will be further genetic testing results that guide the course of treatment and mean lots of crazy stuff that will be available tomorrow – but I don’t know more than what I’ve shared above for now.

I have an appointment Thursday with an oncology surgeon named Dr. Margit Bretzke who works through the United Breast Center in St. Paul. They are trying to hook me up with a Cancer Care Coordinator from the United Breast Center who helps to coordinate and troubleshoot a lot of things I can’t even begin to imagine at this point.  I’ll be grateful for that help to be sure.

We did share this news with the kids last night, though in super simplistic terms. They had been seriously lobbying to go to IHOP for the national Pancake Day shindig yesterday, and given the circumstances, it seemed like a better path to communicate about this craziness than anything else Tom & I could come up with at the moment.  I did use the word cancer, and told them the doctors need to remove some unhealthy parts from my right breast, and that I would share more as I learned more.  Henry “gets” it, and has had a teacher who walked this path and honestly shared with her students, so that helps.  E listened, said “ok” and then wanted help making a Cub Foods list.  Ada said “Eeew” several times, and I asked her why she felt that way.  She said “is anyone going to have to see your underwear?” and I told her likely not right away, but I would do my best to keep her in the know.

I’ve been fairly forthcoming here on the red couch in past years about my ongoing struggle with anxiety as it relates to parenting. It may not be a huge surprise that since Friday, I’ve been an emotional basket case, doing my very best to hold it together for our kids.  Even though the news was not what I had hoped, there is an element of comfort knowing for certain that I have cancer, and I hope as we learn more, and the next steps of this journey begin, that I’ll get my fighting spirit and sense and humor back – right now, I’m feeling kind of down and a little bit like life is kind of throwing some serious ugliness my way.  Self-pity – maybe, but for a few days, I’m going to let myself be ticked that in addition to autism, my kids need to cope with this.  After that, I hope I can find a pinch of humor in ridiculous situations, and that Tom & I will find a way for this bend in the road to teach our kids about perseverance, facing challenges as a family and how we can help one another, and most of all, the importance of a strong village.  The need of a village is not new to us as a family navigating autism – now we just need to add on in new and creative ways.

Most of all, I’m asking for a few good vibes if you can spare them. I’m not exactly certain what I am even asking for, except that reading things on the internet is not comforting.  Maybe that Dr. Bretzke will have news that is not even more devastating – and I say that knowing full well it is likely to get worse before it gets better.  Maybe that these crazy hormone tests come back well – whatever that means.

Last but certainly not least – I am thankful for all the amazing people in our lives who are able to support our family in word, deed or thought, over this next portion of our journey. My gratitude has always run deep for being lucky enough to connect with such a wide variety of awesome people, and now that feels truer than ever.  It really does take a village – heck, maybe even two!  Thanks for being part of mine.

Yesterday, as I was wandering aimlessly around the house, nervous and scared, I stumbled on a painting that Ada had been working on, and it made me smile. The inscription at the top reads “The world is full of cool stuff” and I love that her creative spirit is filled with such positive energy and beauty. I’m going to do my best to remember this even during the difficult days yet to come . . .