Bad Breast Cancer Day

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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 . . .

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