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!