#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! 

Hair.

My long hair is now short. And by the time I get used to seeing myself with this cut, my hair will be gone.

I haven't had short hair in 13 years. The fear that I wouldn't like it, knowing it would take so many months to grow back, always holds me back.

One of my strongest memories of my first mom is the day she cut her hair. She had long, straight, beautiful golden hair. When she came home from the salon with a shoulder-length shag cut -- it was the early 1980's -- I sobbed. Big, heavy sobs.

Losing my hair is the part of this whole cancer saga I've dreaded the most. The doctors try to reassure me, "This isn't your mother's chemo!" (Note: I think when they say this that they momentarily forget my mom was a real person who was treated with chemo) -- but they are quick to add I will still lose my hair. And based on some ill-advised internet research, the other side effects aren't fun, either. Body aches, BONE aches, fatigue, nails falling out...

Nope. This isn't my mom's chemo, but it won't be a walk in the park, either. Of course, after reading this Los Angeles Times editorial (and necessary critique of breast cancer awareness trumping investments in research) by Laurie Becklund, I'm more determined than ever to get my A in cancer recovery. Because wow. While chemotherapy, treatment and diagnosis may have improved in the past 30 years, there's still a heck of a lot more to do before we can keep women truly safe.

This morning I told my kids I'd be getting a hair cut. "No, mommy! But you won't look like you!" M said. Fortunately he recovered by the end of the day and proclaimed the cut a success. And just as he's getting comfortable with the new mommy, we'll talk about the next mommy: bald mommy. Kids are resilient, I know. It still sucks.

I admit, it feels nice to have short hair. And while it will take many months to grow my hair back to this length, it will take a lot less time than it would to grow my long hair back.

She's here! It's a Janome Skyline!

She's here! Meet Kim Gordon, my new Janome Skyline S5!

Oh, she is such a dream. The 1/4 in piecing foot is accurate! She has auto tension control! There is an adorable bow stitch!

Look at all of those stitches! And the auto-thread cutter!

Just imagine the labels I could make!

I love Kitty, my Brother CS6000i. She is the machine who helped me learn and fall in love with sewing and quilting. She showed me how easy and satisfying it can be to make something beautiful. She has her own set of fancy stitches. And, perhaps her best feature, she is so lightweight! An excellent travel companion.

But Kitty has her flaws. She struggles with accuracy. Her throat space and lighting are lacking. I've fiddled with her thread tension endlessly, sometimes to no avail. She's kept pace with me as best as she can, but it's time to make room for a new family member.

Yes, it is a very good day to be snowed in. A VERY good day!

Okay, I've got to go now. Kim Gordon and I are still getting acquainted. But so far I can say this: her name suits her. She is BADASS.

The Big Update

I'm having a hard time writing this update. So I am just going to paste in the email I sent to a few friends last night. I'm feeling different today, but I can't talk about it just yet. So this will have to do for now. Happy snow day. Xoxo

Hi all--

I'll cut to the chase: I start chemo next week. I feel... Okay. Alternating between fine and angry. Did some angry sewing earlier (a baby quilt--hope it doesn't pass on to the baby!). Drank some wine. Ate some chocolate. It helps a little.

The cancer is stage 1 (0-4 scale; my type starts at 1 because it is considered invasive so stage 1 is the best I could hope for), so I am starting with a great prognosis. They now do personalized testing to determine risk of recurrence and responsiveness to additional treatment. This is the testing I've been waiting on since surgery.

I scored 25 on the oncotype test (read more here: http://www.breastcancer.org/symptoms/testing/types/oncotype_dx), which is right in the middle of the "intermediate" (ambiguous) range. So I have a 16% chance of cancer recurring (elsewhere) if I do tamoxifen (standard, hormonal therapy for my kind of cancer) alone, or I can add chemo and reduce the risk to maybe 10-11%. In other words, if i just do tamoxifen, there's an 84% chance I will be cancer free in 10 years. If I add chemo, 90% chance I'll be cancer free. It doesn't sound like much of a difference, but it is much easier to treat and "cure" it now than to wait and treat a cancer that may develop. Because once it is elsewhere... You know the rest. (And while it wasn't in my lymph nodes, there's no guarantee they just didn't see a cell...)

As Husband quipped, it's like going from a B to an A-. Which was both funny and helpful because I am definitely the person who would go for the A- over a B! Heck, let's try for the A.

Anyway, the doctor offered us time to consider, another mtg to discuss, but I said let's just do it. Get it done! I asked if he would encourage his daughter to do it and he said, I think sincerely, yes. So I had blood drawn today and next week I'll have a port put in and then next Thursday I start. Assuming my plastic surgeon clears me (but we assume so because I am 4weeks post surgery this Wednesday).

We met the social worker. She gave us books for the boys which we probably won't use; "mommy has cancer" is not a sentence I want to say out loud. Mommy needs medicine and will have a bald head, fine. But I want to laugh about how funny that is. I am not dying, I don't feel sick. And they are LITTLE! Too little. So we are going to normalize it as much as possible. 

We saw the infusion room which is a big room with chairs around the perimeter. The infusions take @3-4 hours! The doctor said how I react to the first one will likely be how I react to future infusions. So that's good to know. 

I will have 4 infusions -- the least they do. There is roughly three weeks in between each one so it'll be about 12 weeks until I'm done. 

I don't know when I'll lose my hair. A few weeks in, I assume. I get a prescription for a good wig. Bald for my 40th! 

After chemo I will start the tamoxifen and take it until my ovaries and tubes come out. (Most women take it 5-10 years but I won't need it if I have no ovaries producing hormones.)

Thanks for all of your calls, visits, letters, emails, food, carpooling, babysitting, etc. I am so grateful. Thanks, as well, for treating me like a normal person. I won't make it through this if we can't laugh, if we can't have fun. My family won't make it through if we don't laugh and have fun! I don't want to cry over my lost hair (although I probably will). I do want to yell about it, and then I want to laugh about it. So you better be ready to crack some jokes and try on some wigs with me!

Love, c

Sunday Stash -- My Fabric Binge

I love fabric and color, print and pattern. It has been hard to resist buying all of the new fabric out there. Because there is so. much. loveliness. Since I've managed to amass quite the stash in just the last few weeks, I'm linking up for my first time ever to Sunday Stash hosted by Molli Sparkles.

I've had lots of time on my hands to dream of sewing, so my sister's friends sent me a gift certificate to Fabricworm, my first favorite online fabric shop. When I was just starting to sew, I would spend hours pinning fabric from Fabricworm to my Pinterest boards. (Now I spend that time sewing. Or buying fabric.) I spent the gift certificate the day it arrived.

Cotton + Steel overload!

Meanwhile, in recovery land, I developed an Instagram addiction. (Instaddiction?) And saw Stitch Supply Co., a new fabric shop, advertising a launch sale. So I bought some more. (You should check them out! What a great new indy shop to support!)

That beautiful AMH fat quarter (top) was a freebie!

And then my online cart at Stash Fabrics filled up with Anna Maria Horner prints I needed (NEEDED!). But I had too much fabric-buying guilt to click through to checkout. So my BFF sent me a gift certificate. She freely admits she is an enabler. So I bought it all. Free shipping with a $50 purchase, and you can buy quarter yards!

AM Horner goodness plus one Doe by C. Friedlander, one Mesa by Alexia Abegg!

But really... the whole fabric buying frenzy started with this haul from the Intrepid Thread:

Honor Roll meets Pretty Potent by AM Horner

I love the Intrepid Thread! I ripped open this package so quickly you missed the sweet handwritten note and the two free charm squares they threw in -- they come with every order! This pile might not look like much, but this is serious yardage. I usually buy half-yards but these Pretty Potent prints were on super sale so I bought whole yards, people. Helpful for a project I'm working on. You'll see soon.

At this point I have more fabric than ideas or space. I'm not proud of all of the shopping I've been doing (hangs head in shame), but I'm going to choose to think of this as the Pile of Potential. And isn't it pretty? The Pretty Pile of Potential.

There probably won't be any more fabric shopping for a while. I'm feeling better and we've got sewing to do. Plus, there just might be a fancy new sewing machine coming home soon...

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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.

Gratitude.

Sweet zip bags for two MVPs on Team Recovery

There has been a lot of feeling here lately. The other day the mail arrived just as I was about to sit down to tackle the long list of thank yous to family and friends who have sent love, support, and gifts of love and support. I brought the stack of mail in, sat down in my favorite chair with my favorite pillow, and a favorite record playing in the background. In the middle of the junk mail and hospital bills was a tiny brown envelope. And in that envelope was a beautiful necklace handmade by an old friend, sending her love from far away.

It all conspired to make me cry. Big, fat tears of love and gratitude -- and Percocet withdrawal. 

I am a highly sensitive gal, but I swear the Percocet withdrawal was messing with me. Because I must have cried a million times that day, for every reason possible. A few examples:

--This necklace is SO beautiful.
--My friends love me so much!

--My coworkers emailed to say they miss me.

--Last week's episode of Grey's Anatomy. Sick babies, sister bonding... enough said.

--This chocolate is SO good.

--This fabric is SO beautiful!*

--Honest Kids grape juice is the best juice EVER!

--This HuffPo piece by Carrie Cariello, a mother of an autistic child. It is beautifully-written and reminded me how much I love my nephew, and how courageous my sister-in-law is.

Do you see what is missing? There is no sadness, no feeling sorry for myself. Cancer stinks, but the universe is beautiful. I must have written that on eleventy thousand thank you notes.

And then, just as I was getting ahold of myself, the dog walker arrived. She is the girlies' BFF, no question. And she took one look at me, and gave me a hug. I cried (duh). Bonding with the dog walker. One more person I am so grateful for.

I think my emotions are finally in check today. It was a rough couple of days, no question. Turns out you can't just quit taking a narcotic. You really should follow the doctor's recommended withdrawal schedule. Imagine that. 

*Recovery is expensive! I went a little overboard with the fabric shopping. In my defense, there were two gift certificates involved. (See?! My friends love me.) Photos soon. So much loveliness.