Friday, October 25, 2013

Falling Leaves

The weather is changing in NY, we've officially switched over to autumn.  I love the Fall - sweaters, crisp air and really fun activities.  

As we're doing each of these activities this year, I am constantly thinking of last year, the one and only time we did each of these with Quinn.  A number of these never made it to the blog, though they were all List items Quinn did complete, including apple picking, pumpkin picking and riding in a convertible!

Apple Picking
Late September we met up with three other families and went up to North Salem NY to go apple picking. It was a strange time - we had just returned from Duke two weeks before, had just made our final decision not to move ahead with the STC transplant, had just started seeing our friends and family again.  It could have been an awkward day but it was so so much fun!  (We liked it so much, we returned with one of those families this year.)   If anyone in the area is in need of a great apple picking place, Harvest Moon in North Salem is where it's at!

Quinn in a cut out cracks me up every time
the "big" kids
the original Linzer, Party of Five photo

Pumpkin Picking

Just one week later, we honored a five year old tradition and met up with my best friend and her family to go pumpkin picking.  We did break from tradition in that we did not hit up the most crowded place in all of pumpkin-picking-ville but instead opted to go a bit further east to a For.Real.Pumpkin Patch.  It was a great place, and was a lot of fun (but for the torrential downpour but hey, can't win 'em all).

can you even stand the cuteness of that outfit?!
family photo op, on the hayride out to the pumpkin patch
Reid, Colin and Dylan in the corn maze
Reid checking out Jordan as a witch
at the McDonald's down the road,
once we realized the rain wasn't going to (ever) stop

Riding in a Convertible

Quinn's (and Colin's and Reid's) Popsie owns a convertible and was so excited to take her out for a spin.  Mind you, this was before we recognized Quinn's love of a breeze but knowing it now, it was such a perfect thing for her to do!!  It was a gorgeous day, perfect for the ride.  Daddy rode in the back seat to make sure missy didn't get too fussy but she was so happy and comfortable, it probably was totally unnecessary.

love this photo - look at those grins!
so comfy, she even fell asleep!!
the boys trying to get in on the action

These types of memories, and photos capturing those memories, are aiding me in getting by each day.  It's been a rough go of it lately.  Two weeks ago I received my Oncotype score - the test that determines the likelihood of recurrence of the breast cancer and heavily weights the chemo decision on the part of the oncologist.  The score was 21, which falls on the low end of the Intermediate risk range - also known as "The Grey Area".  Of course ;)  

Brett and I visited the oncologist on Tuesday of this week.  My assumption was that she would present me with two options - one, to skip the chemo altogether and the other to take regular or even scaled down chemo to be sure we get it all.  I also assumed she'd strongly recommend the chemo because of both my age and my substantial family history.

I was sort of right - she did present two options, and she did strongly back the safer route.  What completely shocked me (us) was that the two options presented were actually a regular course of chemo, and a very aggressive course of chemo.  It was the very aggressive course that Dr. Theodoulou emphatically recommended.  The course that is complete with full hair loss (at day 16, to be precise) and tremendous fatigue, nausea and bone pain - a total of 8 treatments over 16 weeks.  
The goal is to get my risk of recurrence back down into the single digits.  The Oncotype has it at 13% (based on the assumption that I will take Tamoxifen for 5 years).  When adding in lymphovascular invasion - which showed on the pathology reports - as well as my age and my family history, Dr. Theodoulou actually put my risk of recurrence between 25 and 30%.  That's kind of crazy, considering I've already removed the problem area(s)!  Or so I thought.  What we also learned was that as much as 5% of your breast tissue is left behind following a mastectomy - otherwise, you'd just have holes in your skin.  

On top of this, radiation, which was previously taken off the table, is back on.  The oncologist is not comfortable making the call against and would prefer I see the chief of radiation oncology to be sure.  

Le sigh.

I was able to secure a schedule that leaves my 'off' weeks on those of Halloween, Thanksgiving, Hanukkah, Christmas and Colin's birthday, which was incredibly important to me.  After my one day wallowing allowance, I have researched wigs, ordered tichels* and favorited some great makeup videos on YouTube.  

I can't control much anymore, but at least I can do my best to keep things as stable as possible for our family, and allow myself to look the best I can so I feel the best I can.  And at least I have the thousands of videos, photos and memories to pour over and keep me occupied.

miss you Monkey!!
photo credit: Forever Fireflies

*tichel: for any of you who are going through hair loss (or impending hair loss) due to chemo, I would highly recommend googling tichel to look for headscarves / coverings.  All of the ones I found were very, er, cancer-esque.  Then I realized I wasn't coming across any Orthodox websites!  Those women spend their entire adult lives covering their hair (and in wigs - that'll be a post for another day, once I actually get mine) so they've got to know the best.  The name they use is a tichel and beautiful, soft, breathable fabrics come up in a search - try it!

Thursday, October 3, 2013

Still Kickin'

Thank you for all the check-ins, it is so sweet that there are so many people who continue to be concerned with our well-being.

I had the bilateral mastectomy on Wednesday, September 18th as scheduled.  Thankfully, also 'as scheduled', the sentinel node biopsy came back benign.  This means that the cancer did not get into the lymph nodes, which is when things begin to get really scary.  There were far more DIC (ductal invasive carcinoma) than even showed up on the scans and at least some of them did permeate the vessels.  This all but guarantees I will require chemo. But, to be sure, there is still some testing on the tissue underway - confirmation of the initial diagnosis of ER/PR+ HER2- and, pending that confirmation, Oncotype-ing - a test that defines the likelihood of recurrence.  All of this, plus a plan will (hopefully!) be available to me on October 22 at my oncology appointment.

The healing process is taking some time - understandably - and there are days when I feel great, followed by days when I feel pretty crappy.  One might deduce that I push too hard on the good days, but those are just sissies talking ;)  All in all, I am physically doing considerably better just 15 days out which is encouraging on the cancer front.

I'm not doing all too well on the Quinn front.  My biggest beef with this whole breast cancer crap is that I am being robbed - once again - of time 'with' Quinn, this time for grieving.  A friend so poignantly put it - Did you ever think in a million years that something would happen in your life to make cancer seem like no biggie??  This should have been the worst thing that ever happened to us.  Yet after losing Quinn, I can barely muster the interest in the Rah-Rah Pink support to acknowledge that it's more than a pain in the ass.  When people ask how I'm feeling or doing, I have to mentally switch gears because now 99% of the time, it's about the mastectomy and not about Quinn.  

In the past 55 days since she's been gone, so much has changed and that in and of itself is just nonsense.  All of this with my health, the boys have gone back to school -with Colin starting Kindergarten, and, worst of all, the world has lost two more beautiful babies :(  One was another child with NPA, whose family chose to battle privately but who Brett and I had the opportunity to meet back in January.  Another was the six year old son of my friend from college who battled a rare cardiac illness his entire life.  Please keep both of these families in your thoughts, especially sending them good thoughts for peace - they will all need it.

The show must go on literally meant immediately and it feels terribly unfair to leave Quinn behind so quickly. I'm meeting new parents at Colin's school and, though they are admittedly few and far between, there are still some families in the area who don't know about us, about Quinn.  And I find myself repeating the same thing to the same seemingly innocuous, actually horrendous question - "How many kids do you have?".

I did have the foresight to anticipate the gut wrenching reaction this inevitable question would cause me over and over and over as I used to lay awake, before Quinn even passed, debating how to answer the question to well-meaning strangers.  But now, there is no question.

Three.  I have three children.  I offer details when asked, and always refer to her as "my daughter, Quinn."  Because everyone should know her name - she was just too amazing not to.

So, there is my update in a James Joyce-style stream of consciousness.  Thank you for caring so much. And as always thank you for remembering Quinn - nothing means more to us than that.

Some older photos I recently came across:

photo credit: Forever Fireflies