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!

14 comments:

  1. I found your website shortly before Quinn... :( And I check it daily for updates on your health. I will continue to follow it, and wish for a quick recovery and remission for you.
    From your last post of when people ask how you are; meaning do they refer to the cancer to the loss of Quinn. I hope you and your family are doing well....as well as your hearts.
    Continued prayers, as I continue looking for updates.

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  2. My goodness, Eileen.... It's hard to read all this - I can't imagine how hard it is to live it all. I'm so sorry for this seemingly endless round of trials. I googled tichel and....WOWZAS! Nice work! And it was nice to see little Quinn today - love the photo of her little tongue peeping out at you. Our family prays for you every single day and will continue to do so .

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  3. I am continually in awe of you and your strength! Though I've never met Quinn, or you, I feel like I know you all. I miss Quinn and think of her often. I'm so sorry for the struggles you keep having to endure. I wish there was something I could do to ease your trials. Love and prayers from Green Bay, WI:)

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  4. I check this blog every few days hoping to read an update on how you are doing....how you are coping. I read back through older posts about Quinn often, as I just grew to love her through your stories! I wish you lots of heavenly visits from your baby girl, and lots of strength from your family as you take this next step along your journey!
    Lots of love from CA :)

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  5. So glad to see an update from you. I have been thinking of you and your family and always sending prayers and happy thoughts in your direction. Hope that you continue to keep your positive spirit. Loving those amazing pictures and memories of sweet Quinn!

    Love from Germany!

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  6. I have always wondered about these activities! I especially wanted to see pics of her convertible ride:) that was so cute.I giggled at the apple picture too of Quinn the worm, it looks so real! My fav picture is the one of her in the baby carrier with the pink blanket in front of her with you-beautiful. You news about the chemo-wow, to say it sucks is a major understatement-that is just awful Eileen. What can we all do-anything? I am glad you get the big weeks off and hope you feel great during those times. I am sorry you have to look for things like wigs and tichels, but I know if anyone can pull it off you can-you are beautiful. we love you guys-xoxo, Chelsea

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  7. Those photos are priceless Eileen!! I love every memory and all that you did as a family. You are not kidding on that pict hat outfit, i had to back at look at her cuteness factor about 10 times. I am sorry about the scary news on your chemo Eileen. Please know we are here for you. I know that is not much to offer, but we are. I am sorry you have to go through all that you do. Thank you for continuing to write. All our love xoxo Shannon

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  8. Just wanted to say I am thinking of you and your family and of course your little guardian angel Quinn.

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  9. Fantastic pictures! Thanks so much for sharing, Eileen. I think of all of you every day, wondering how you are all doing. Echoing everyone above, I am sorry about your chemo news. It does truly suck! I too wish there was more I could offer than good thoughts and much love. You made me smile with your comment about looking good so you can feel good - you are so beautiful, Eileen! Nothing can take that away! Sending loving and healing thoughts! xoxoxo

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  10. Eileen I never know exactly what to say. You are a tremendously strong person. I am in awe of your ability to "keep on trucking". After all you've been through, I'd want to just crawl in a hole. But you are a vibrant, amazing person who has dealt with the, as I call it, "black rain cloud" that seems to follow you with more strength than anyone I've ever met. You're thankful for every moment and you tackle each challenge that is thrown at you. My thoughts and prayers, as always, are with you and your family. Xoxox - Jillian

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  11. Eileen, I loved seeing these pictures...thank you! Please know that your story is really helping people. Whether they are going through trials of their own, or whether they need a reminder of what's important in life. And I pray that you can feel the virtual "hugs" that are being wrapped around you from all corners of this earth!

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  12. I've been thinking of you and your family. I'm sorry about the chemo news. Thank you for continuing to write and for sharing so many wonderful photos and stories. Sweet Quinn makes me smile. You are such an amazing family. My family and I are pulling for you. Hang in there. Sending hugs from Buffalo.

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  13. Thinking of you often… I wish for you any peaceful moment you can get….

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  14. sending big hugs and love to all five Linzers. Even though we'll surely never see any of you, we are sending our best...

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