The New (2016) Version of Me

 Any Felicity fans out there?



This post is long overdue.

These photos -- the first/best photos of me since cutting, losing and regrowing my hair -- were taken back in November. That feels like eons ago. Since then I've had two hair cuts!

New version of me, November 2015

This is 40. And a half.

A friend of mine, Elise, took these photos. I remember feeling happy and free and beautiful that day, and when I look at these photos I see that in my face.

But the truth is, I am still grieving my old self while I am learning to love my new self. It is hard to look at old photos and see the old me. The youthful me, with long, brown hair. I am not quite used to seeing myself with short hair. I am not used to seeing myself so gray. I am not used to seeing so much of my face. I am not used to seeing my body so soft. The newness is hard. Change is hard. 

When I opted to remove my ovaries and tubes -- to willingly enter menopause at 40 -- I didn't consider the emotional impact. I prepared myself for (some of) the physical changes, but I didn't prepare myself for how I'd feel about them. It's not just the hair, it's the aging that happened overnight.

I could just dye my hair (again). And I can grow it out. I can exercise more. I might do all of these things. And don't get me wrong, I do love me. I just got a hair cut I love (it's short and not wavy!). I don't even mind the sparkle. It's a process, though.

When she learned of my diagnosis, Elise offered to take family photos as a gift to me. We finally made it happen this past November when the whole family was in NJ. I think we were a little more than she bargained for: in addition to my husband and two boys, I brought along my parents, my sister, my brother in law, my brother, and Odin the dog.

The family.

Odin was my brother Pete's dog. Pete died in November 2013, and Odin now lives with my parents. Having Odin at the photo shoot was a way to honor Pete's memory and made taking family photos after such a great loss a little more bearable.

Look at this face! I love you, Odin!

In December I gifted to Elise a quilt for her new studio space. It was so good for my soul to make something for her to honor her gifts and our friendship. Would you believe I forgot to take photos of it? Here's hoping Elise reads this and sends me a beautiful photo to share with you. :)

If you ever have reason to be in Northern New Jersey, check out Elise Campbell Photography.

2015 Wrap Up -- Determination

WHEW! Happy New Year, friends! What a difference a year makes. Last January I was reeling from my breast cancer diagnosis ("Cruella") in December, learned that I carry the BRCA2 mutation, and was preparing for the first of four (!) surgeries. That time feels both far away and not so long ago.

I've been writing and re-writing my thoughts about 2015, and I haven't quite found the words to express what I'm feeling. I thought I'd be rushing to the new year, but as happy as I am to be closing the cancer chapter of my life, my feelings about the year are overall pretty positive. Seems strange, but it's true. I'm grateful to have learned so much about myself, and to have experienced the support and friendship of so many. SO many. I feel grateful and lucky.

Last year I chose "determination" as my word and I was certainly determined. I planned to make six quilts and finished 14. All while working a full-time job, parenting two small kids, and undergoing cancer treatment. (I made 12 in 2014 and didn't expect to beat that, but turns out sewing is excellent therapy.)

I planned to recap my 2015 goals and sewing to do list, but that seems boring so instead I'll tell you about some of my favorite finishes.

1. Greatest Hits: an improv scrap quilt of Anna Maria Horner prints, with a few Tula Pink prints thrown in. I struggled with this quilt -- couldn't figure out how to make it work. Usually I would force it to get to the finish, but this time I let it sit until I could see how it was meant to be. Finished in December 2015 and gifted to Caroline. One of three projects for the Q4 Finish Along.

2. Husband of the Year: a quilt for the Husband. My best work to date. Blogged. Also one of my goals for Q4 of the Finish Along.

3. Plus Quilt 4: a baby quilt for Maude. I loved the ease of pulling fabrics in the same color. This was no-pressure sewing at its best! See also my Cotton + Steel plus quilt and a quilt for T.

4. Unicorn Quilt for Jane: This was my first finish of the year, and it's one of my favorites. I'm so proud of how it came together. Blogged.

How about you? What was your word for 2015? Did it ring true? Here's to your health and happiness in a new year!


Linking up with the 2015 Finish Along hosted by Adrienne at On the Windy Side.

Come On, Get Happy!

My little guy is always looking for a smile. "You happy, mommy?" he asks. "Yes, I'm happy!" I reply, no matter what I was just thinking or if I was frowning. He grins and hugs me, and I am healed. In those moments I remember it really can be that easy to be happy.

And I am really happy. Do you see the bow I am wearing?! Is it not amazing?!

2015 has already been a pretty big year, between my surgery and treatments, turning 40, and celebrating 15 great years with the Husband. Through it all we've been surrounded by love and friendship. The really, really good stuff. My job continues to be amazing, stimulating and supportive. Our house is a home. My family is healthy and happy. My head is surprisingly round and smooth, and chemo made my skin beautiful! I have many reasons to be happy.

So this weekend we celebrated life and love with a party that brought our friends together, new and old. My brother, sister and brother-in-law drove down to be with us. I hired a dear friend, Lisa at This Calls for a Party, to plan and host the event. And we partied! (A little too hard, if we're honest -- yesterday was a sloooooow day.) My one regret is that we couldn't bring ALL of our friends together.

My cancer diagnosis was really, really shitty. Chemo was really, really shitty. Surgery was no picnic. The doctors appointments continue to seem endless. There are two more surgeries and a lifetime of surveillance ahead of me. It wouldn't be hard to focus on the pain, the inconvenience, the what-ifs... But I refuse to be held hostage by fear. So when H asks if I'm happy, I smile. And magically, I am transported to happiness.

You happy? 

Digging a little deeper -- on community

I joined the BRCA Sisterhood, a private Facebook group for women who have a BRCA mutation or other hereditary breast or ovarian cancer(s). 

I know, I just said the other day that I wasn't looking to connect with other survivors. 

But the conversation I had with my colleague has stayed with me. Why have I resisted connecting with other women going through similar experiences?

I was afraid to admit this, but I think in part I fear being surrounded by cancer. I don't want cancer to define me, and yes--I am afraid of cancer. I want to run as far away from it, as fast as I can. 

A few weekends ago I attended my first DC Modern Quilt Guild meeting of the year. I joined the Guild almost two years ago but hadn't mentally committed to participate until recently. Earlier this year I started engaging with other members on Instagram. They embraced me, even though only a few could probably remember ever meeting me! And when I started documenting my cancer journey, they supported me. The Guild President sent me coffee and fabric for a head scarf. The Vice President reached out by email to check on me. And members cheered me on as I moved from surgery to chemo to recovery.

Attending the meeting in April felt like a homecoming. I nearly burst into tears, walking into the room, hugging friends I hadn't met in person before. Community is amazing. 

That's the thing I do need: community. And I am grateful to have found it in different places--work, home, with friends, online, at DCMQG. Within these communities are, of course, other survivors. But the nature of our community is different. Our relationships aren't defined by cancer. That feels significant. 

I don't know what my participation will be like in the BRCA Sisterhood... but I am going to give it a try. Already it is clear that the group provides tremendous support to each other, to women at all stages of the journey. They are there if I need them and heck, I may have something to offer as well.

I haven't figured it all out, but I'm getting there. It's a process, right?

Ring the bell

I am done with chemo! Done, done, done! 

"Ring this bell

Three times well

A toll to clearly say

This treatment's done

My course is run

And I am on my way"

Sure, by tomorrow I will be feeling crappy and sure, I'll miss out on a beautiful weekend, and sure, it'll be another 10days before coffee tastes good again, and sure, I still have two surgeries* to complete... but hey--I AM DONE! No more chemo!

This is big, right? There have been moments on this journey--heck a lot of moments--when it just didn't feel real. Right now it feels a bit like a movie. Like it's not happening to me. I am fine, I am healthy, I don't have cancer, what is happening?! But then I tell myself it is real. This is real. It isn't a stunt, it's not a movie, this is actually my life. How did that happen? (Don't answer that. I know: BRCA.)

Back in the fall, before the diagnosis, I had dinner with two of my closest friends. I was telling them that I was going to have a mammogram and how I wasn't worried, just routine, cancer was my mom's story, it isn't mine. (Are you cringing because you know how that ended?!) The truth is, her story has always been my story. Her cancer -- and subsequent death -- is a defining chapter in my life. Finding out I had the BRCA mutation, that my mom likely had the BRCA mutation, was freeing. It explained this awful thing that happened to me. Not my cancer, my mom's cancer. If I had to have cancer myself to find that out, so be it. 

A colleague asked me the other day if I had connected with other survivors. "No," I quickly said. And then I stumbled to say why not. I hadn't thought about why not! (Why hadn't I thought about it?!) So I gave a rambling explanation that focused on these three things, all true:

--My prognosis was always excellent.

--I'm HAPPY and in a great place emotionally to handle a crisis.

--I have an awesome support network. (Thank you, village!)

But the most truthful answer, the one I just now figured out, on this last day of chemotherapy, is this: I have already survived cancer. It made me who I am. I've got 32 years of survivorship! I've GOT this. 

Suck it, chemo. 

*Two more surgeries: one to get my new boobs, one to remove my ovaries. Addition, subtraction. 

#100Days of Chemo

I've been wanting to write an update about my sewing, but I haven't been sewing very much. I did manage to piece a baby quilt, but I have no good photos. I've also made some progress on my scrappy Anna Maria Horner "Greatest Hits" coin quilt, but I don't have photos of that, either.

No, life here has been consumed by chemo. I'm one week in. Only 11 more weeks to go!

The last few days have been hard. The side effects I anticipated have mostly been mild. Some queasiness, some fatigue, achiness from the vitamin shot. Add to that interrupted sleep, an itchy scalp and a persistent bad taste in mouth, ruining everything I try to eat or drink. I just don't feel like myself. I know it's unreasonable to expect to feel "good" during chemo, but I hadn't considered how several days of feeling off physically would impact me emotionally. I feel anxious not knowing what's coming next. Will I feel better in the two weeks before my next infusion? Will the next cycle be worse? I'm angry that I had a tiny, stage 1 cancer and I'm subjecting my body to this torture. I've complained endlessly about my "chemo mouth," when I am generally not a complainer.  I've snapped at friends who were just trying to help or just  being nice, because I just want to be normal.

But there is good news. I am enjoying a cup of coffee today for the first time in a week. And I'm thus determined to have a great day. To focus on the big picture instead of the discomforts of the next 77 days. 

It's another snow day here in the nation's capital. I'd love to get the boys outside to enjoy the snow. We don't spend enough time in nature. It's criminal. I'd also love to get out some paint. It's grandma's birthday; maybe some card making? And there is sewing to do. I've got three baby quilts to make in April. Yikes. 

Happy Friday! 

Surviving Cruella -- Update/Recap

Post Shower Selfie!

Happy Valentine's Day! Today is a great day. Always good to start with good news, right? I took my FIRST SHOWER IN 3 1/2 WEEKS (ahhhhh), and I'm going sewing machine shopping with my BFF today! I cannot wait. I am going to give 3-4 Janome machines a test run. Hospital bills be damned, I am buying a fancy pants machine. Happy early birthday to me!

There's a lot happening over here in cancer land, and Monday is going to be a big day*. I've been thinking about everything that has happened over the last couple of months and thought I'd lay out the timeline. So let's recap, shall we?

4/12/83 -- The world loses a beautiful, witty, loving soul, mother, daughter and friend. My first mother, Christine Elaine, succumbs to breast cancer at 37 years young.

December 2013 -- I finally ask for and receive a referral for a mammogram. I am 38.

October 2014 -- I have my first mammogram at the GW Breast Center. It is quick and easy!

November 2014 -- I return for follow up imaging, spend four hours at the Center, and learn I have a lump that needs to be biopsied.

December 9, 2014 -- I have a needle core biopsy. The radiologist expresses concern and offers that she will rush the results.

December 12, 2014 -- Husband and I return to the Center and hear for the first time that I have invasive ductal carcinoma in the right breast. The tumor is tiny but must be removed either through lumpectomy or mastectomy before it spreads. We name it Cruella De Vil.

December 15, 2014 -- MRI confirms the tumor, does not show lymph node involvement, and finds a second, small, ambiguous growth to be biopsied if not removed via mastectomy. I plan for genetic testing to help me decide lumpectomy or mastectomy.

(Holidays, merry, merry)

January 2, 2015 -- Genetic test results confirm I carry the BRCA2 gene mutation associated with a higher risk of breast and ovarian cancers. I learn I will have to have my ovaries and tubes removed, in addition to removing/treating the breast cancer. I am relieved and decide on a double mastectomy.

January 21, 2015 -- I have the double mastectomy surgery; no implants but the plastic surgeon saved my nipples. My lymph nodes are clear -- the cancer is stage 1, hooray! I feel sore, nauseous, overwhelmed, and optimistic. The Village kicks into high gear with visits, flowers, food, gifts, and lots of love and support. 

(recovery, recovery, recovery)

February 5, 2015 -- We meet with a high-risk oncologist about my BRCA2 status; she says "a short course -- 12 weeks --  of chemotherapy" is a distinct possibility because of my "young" age. I am completely confused by her description of how the oncotype test works. 12 weeks of chemo sounds like an eternity. Treating cancer when my breasts are gone and lymph nodes are clear seems excessive, but I agree to reserve judgement until we know what we are talking about. 

February 7, 2015 -- Percocet withdrawal knocks me on my butt. I cave and re-dose, vow to follow the doctor's slow withdrawal plan.

NEW: February 12, 2015 -- The second/final drain is removed and breast expansion begins! I haven't showered in 3 1/2 weeks; I plan an epic shower for Saturday, 2/14.

NEW: February 13, 2015 -- The oncotype results are finally in! The patient navigator can only tell me I am "kind of in the middle" and will need to discuss with the oncologist. Chemotherapy seems even more likely. I again try and fail at Percocet withdrawal; slow down even more. 

Now that we're current, here's a look at what's next. 

*February 16, 2015 -- Husband and I are going in for our first meeting with the oncologist who will treat me (as opposed to the high-risk oncologist who helps me evaluate my overall cancer risk and planing vein my BRCA2 carrier status). We will receive the actual oncotype test result, discuss what it means and what my treatment options are. 

February 17, 2015 -- My first day back to the office in a month!

There is still a lot TBD for 2015. 

Under Construction -- my new boobs!

TBD -- The actual treatment plan and implementation.

TBD -- The oopherectomy to remove my ovaries and tubes.

But one thing is certain: I am kicking Cruella's asssss and we're going to celebrate the heck out of it in April.

This post is not about quilting.

Today is a bad day. My nerves are misfiring, and my body aches--not unlike having shingles. My head aches. My emotions are uneven.

The other day we met with my high-risk oncologist, the doctor who will help me--a "young," BRCA2+ cancer patient--navigate my treatment and surveillance for the long-haul. Unlike my breast surgeon who has danced around the topic of chemo with me, this doctor indicated it is not only possible, it is likely. Somehow I am supposed to be reassured by the likelihood of a "short" treatment: 12 weeks. Three whole months! 

I am really struggling to understand how it could be necessary to make my body sick when I have already removed the entire breast (both of them!), the offending tumor of less than 1cm, and a clear sentinel lymph node. 

Maybe the test will come back and I won't have to suffer the indignity of chemo. It probably isn't worth worrying about just yet. But when my body feels like crap, the emotions start running. And it's just too damn hard to stop them.

I dreamed about my first mom last night. It was a saying goodbye dream, although it has been nearly 32 years since our actual goodbye. In the dream I asked her how she chose my name. She considered it and replied that the name meant strength and courage, and something about surviving what will come next. So many nights I hope to dream of her and she doesn't come to me. But last night she came, when I needed her most.

The first five days

Surgery complete and recovery in process!

The surgery was a long 7 hours. When I woke up I was groggy, nauseous and sore. The nurse was cranky. I had to wait nearly five hours for my room. But my doctors and husband came by and I was able to comprehend the good news through the narcotic fog: no cancer in my lymph nodes, and both nipples saved! No implants, though. I will have to go through the long, usual expansion process. And, chemo still hasn't been ruled out. 

The first 24 hours after surgery were awful. The anesthesia kicked my butt and I couldn't shake the nausea. Every hour someone came in to take my vitals, give me pills, or poke me. My arm ached. My skin was itchy. 

Once I ate solid food, got some Valium and a little sleep, i started to feel better. The second night I convinced a doctor to do something about the tape and itching and the nurse scrubbed off the iodine that was making my skin crawl. A little more human. On the last day I switched from a morphine drip to Percocet and I felt even better. Ready to go home!

My parents were able to visit, my husband, my sister, my mother in law, and my best friend. Having them near was so important. The nurses were amazing. I hated being helpless, needing to ask for help to stand, to wash, to eat. So much I used to take for granted.

When I came home I cried when I hugged my kids. I slept a full night. I opened an assortment of gifts and read emails that reminded me I am loved. I watched the most recent episode of "Parenthood" and had a good, long, cathartic cry. All of the pent up emotions, the overwhelming feelings, released.

It took me a few days to look at myself in the mirror. To face my stitches. My breasts are mostly gone, but I look okay. And with a few days behind me, I know I will be okay. If chemo is next, so be it. It used to be the thing I feared most. But I'm a survivor. I just keep keeping on.

So many people have stepped up to help. The village is strong! I am so grateful. Food, kid care, books, treats, socks, flowers, and more. So much beauty in the village. So much love. I am spoiled.

Tonight H, my little guy, sleeps beside me. He may not return to his bed for a few days yet. We are needing each other right now and it's more than ok. M, my big guy, is processing the changes. He is smart and sensitive and kind. He leans on his father and his grandmother, but he comes to tell me he loves me. He needs me in different ways, and in time we will get back to where we were. For now I remind them both I am not leaving. I am here. 

Me and Angelina

Friday I met with the genetic counselor and learned that I have the BRCA2 mutation. The news was both surprising and not surprising. I suspected it, given that my mom and I both developed cancer before 40. But I had also reserved some mental space for Cruella to be just a really unfortunate coincidence.

So what does it mean? My takeaways from the genetic counselor:

1. There's a high risk I'll develop another, unrelated breast cancer. Some research suggests 60%?
2. There's a higher than normal risk of developing ovarian cancer--about 20%.
3. I can either have a double mastectomy or treat the current cancer and follow up with an MRI or mammogram (alternating) every 6 months. (And then treat any new cancers that may develop.)
4. I should have my ovaries and Fallopian tubes removed to prevent ovarian cancer.

I really didn't prepare myself for that last bit of news. Take out my ovaries?! Wow. Medically-induced menopause. I need to treat the cancer first, but I'll likely be having the oophorectomy later this year.

I'm pretty certain I will have a double mastectomy. I'm putting off thinking about what that will be like, how I will feel, what the recovery will entail. Right now I'm in decision mode. Trying to not FEEL. It's just too big.

(Angelina Jolie inherited the BRCA1 mutation. You can read about it in her own words here.)

***

I spent a few hours this weekend sewing up a new library tote bag and a couple zipper pouches (including this adorable coin purse) for my BFF's birthday. Three different zipper methods in 24 hours. Whew! I used this AMH honor roll print with this linen mochi dot by MoMo for Moda for the tote. Love both of these fabrics mucho much.