Wrapping up Pinkapalooza (I mean, Breast Cancer Awareness Month)

Between being back at work full time, amping up my work outs in preparation for the Seattle Half Marathon that I may or may not run (do you have any idea how uncomfortable running with tissue expanders is? Probably not, but let me tell you...it's somewhat comparable to having an elephant sitting on your chest. Not that I've ever actually had an elephant on my chest, but this is how I imagine it would feel. Ah, I digress...) and taking care of this huge house that my husband insisted we'd grow into, I haven't had much spare time at all to tend to my very neglected blog.

I also haven't much to say about breast cancer, which is a really good thing, right?

I was honestly kind of dreading the arrival of October. As a new breast cancer survivor, the pinkfest of Breast Cancer Awareness Month can be kind of overwhelming...the proverbial salt in a very fresh wound. However, October has been a pretty great month for me. My energy level continues to increase. I stayed really busy, which helps this time away from Brian go by quickly. My amazing support group, the Seattle Young Survival Coalition, hosted our second annual Drink Beyond the Pink cocktail party/silent auction, and we raised over $26,000 to support young women with breast cancer!!! It was a great party for an amazing cause. Brian and I also signed up to do the Komen 3 Day for the Cure walk next year.

Our team, the Valley Girls & Guys, from my hometown, was the number one fundraising team in the NATION last year!!! Because of this amazing achievement, they (we) were invited to be part of the Seahawks opening ceremony for their Breast Cancer Awareness day on October 24th. We got to be on the field for the pregame festivities, and it was so.much.FUN!!! It's an amazing team, and feel so honored to be a part of it. As I've met my teammates, a lot of them ask if I know a survivor. When I tell them it's me, they're surprised/saddened/impressed. I definitely don't fit the typical breast cancer survivor profile (I'm short by about 20-30 years!) but I think it's really good for them to see that breast cancer DOES happen to young, healthy women. I usually get lots of questions, and I'm happy to answer them. I tell my story because I'm living proof that the money they work so hard to raise (most of my teammates are repeat walkers) goes to important research. I tell my story because awareness is great, and necessary, but what we really need is a cure.

To close with some good news, I had my first post-treatment check-up this week. I was pretty nervous going into it, but everything looks great, and I am marching forward disease-free! I can still use your prayers and good thoughts...getting through the next two years (my highest window for recurrence) is going to be a HUGE milestone for me, and I'll take all the support I can get to help me get there.

Did you feel your (or your wife/girlfriend/partner's) boobies this month???

My YSC Sisters at the Seahawks practice facility

Yay for positive BRCA news!

Patricia Prijatel, medical journalist and author of the fantastic blog called "Positives About Negative" (great title, right?!) has just posted some positive news related to Triple Negative, BRCA-1 positive breast cancer. As Patricia points out in her post, there have been a lot of funds and research effort dedicated to triple negative cancer because its lack of receptors has made it a difficult cancer for which to target treatment.

I've posted before that triple negative cancer used to be known as "the really bad stuff." Higher rate of metastasizing, no targeted post-treatment therapies like Herceptin and Tamoxifen to reduce recurrence risk, etc. I've also posted about how the BRCA-1 mutation predisposes carriers (like me) to an upwards of 80% lifetime risk of breast cancer. One would assume that a combination of the two of these would be pretty bad news (lucky me!)

However, this study from MD Anderson concludes that those with triple negative breast cancer and a BRCA mutation have lower recurrence risk and better survival rate than women who are triple negative without the mutation! All but one of the 77 triple negative cases had the same adjuvant chemo treatment, but the 15 women who had the BRCA mutation actually fared better than those without.

Unfortunately, the study did not state what kind of surgery the women had. My guess would be that those who knew of their genetic mutation had more aggressive surgeries (bi-lateral mastectomy vs. lumpectomy) and that might account for the higher survival rate. At any rate, it's great news for a triple negative, BRCA positive gal like me! This diagnosis hasn't been filled with many statistics in my favor, so I'll take this one!

To My Baby Sister

Studies have shown that a cancer diagnosis can be harder emotionally on family members and loved ones than on the diagnosee. They watch from the sideline, feeling pretty helpless as the one they love goes through physical pain and suffering with little relief. They can't prevent the hair loss, the nausea, the surgery pain and scars, and radiation burns. Some family members distance themselves, feeling useless or unneeded. I'm so glad you weren't one of those.

I know it had to have been hard for you to watch me go through what I did. I know it had to have been hard to deal with my mood swings, lethargy and emotion. But you did so with a smile on your face, a great listening ear, and all the hugs I needed. You stepped up and brought me to medical appointments because you wanted to be there...to be part of it (and because I needed both the support and a driver!) You worked your butt off to raise funds and train for these three days and 60 miles of walking because you felt the need to do more.

It wasn't necessary. Walking 60 miles three months after having a baby is a very impressive feat, and definitely something I didn't expect you to do. But you were determined, a quality that I've always admired in you. You wanted to make a difference...and believe me, you have.

It's been a tough year, for myself and our entire family. It's been filled with illness, uncertainty, and lots of emotion. But it's also been filled with love. I simply cannot imagine going through this journey without the support of my family. In my weakest moments, it was so comforting to know that I could rely on your strength.

When I received my diagnosis, my first thought was "how could this happen?" My second thought was "I'm glad it was me and not my baby sister." Not because I didn't think you could make it through all of this, but because I never want you to have to.

I am grateful for every step you take, and every penny you've raised. I am forever grateful for our relationship. So honored to call you my sister...my friend.

Lovelovelovelove,

E

I've been in hiding

Well, not really. But I've definitely taken a HUGE step back from anything and everything breast-cancer related for the past month or so. Brian was able to come home for a few weeks, and it was absolutely AMAZING to spend time with him and not have to worry about a single medical appointment. We took a trip to the East Coast and really enjoyed ourselves. I hadn't been there in a few years, so it was really nice to see his side of the family; and to walk around the Naval Academy yard and reminisce about our wedding there.

Besides that, I just needed a break. I've pretty much completely immersed myself over the past year in all things breast cancer...research, information, medical trials, support groups...not to mention 49 weeks of active treatment. After I finished treatment, I really just needed to try to regain some semblance of normalcy in my life. I'm pretty sure reality laughed in my face at my assumption that I could return to status quo.

Everything is different. Yes, I live my life and try not to dwell on the fact that I just spent over 11 months actively fighting a potentially deadly disease. I try not to be frustrated that, when last year I could easily knock out 55 pushups, right now I am up to 2.5 pounds in my resistance training; or that I used to wake up at 4:30 every morning to work out, and right now waking up at 5:30 (sometimes 6) is filled with dread and mid-day exhaustion. Now, when I feel pain, like I did last week at the base of my neck, I instantly fear the worst, then have to talk myself back to a somewhat rational state. I wonder if the slice of wedding cake I had last weekend is going to regrow a tumor. I wonder frequently if I'll have to call (or worse, email) my husband while he is deployed and tell him news that would terrify him.

I went to my first support group meeting after finishing treatment, and was pretty amazed at how quickly I had switched roles from a supportee to a supporter. There were several women there just starting their course of treatment, and I was the one with experience and tips to offer them. It seems like just a short time ago, I was crying trying to figure out how to deal with losing my eyelashes or possible infertility. I'm not sure I was really ready for that transition.

I realized on the way home from the meeting that I'm living a completely new normal. I'm no longer a breast cancer patient; I'm a breast cancer survivor. I'm still trying to come to terms with that, and what it exactly means. That some days I will be fine and other days I'll be emotional and tired and cranky and fearful. Hopefully, as both my body and mind heal from the trauma of the past year, my fine days will start outweighing the not so fine ones.

Thanks for sticking with me through this journey. I am incredibly grateful for your support and encouragement...

Remission

After 11 months and 11 days, two biopsies, 2 mammograms, 2 PET scans, 3 MRIs, 18 rounds of chemo, a major surgery, and 28 radiation fractions, I am officially DONE with active treatment.

Obviously, the reward is sweet: remission. It means no daily trips to Seattle, no weekly visits with the doctor or weekly pokes for blood draws and port accesses, no more medicine cabinet full of antiemetics, pain meds, acid reducers, and muscle relaxers. However, it also means that for the first time in 49 weeks, I am doing absolutely nothing in terms of killing cancer cells or preventing their return.

For as happy as I am to be done with treatment, I am nearly equally as scared. A lot of cancer survivors really don't like being referred to as a fighter; that cancer is some kind of battle to conquer and beat. It implies two things: that we, as sufferers of this disease, had some sort of choice in the matter; and that those who succumb to cancer didn't fight the battle hard enough. Obviously, neither of those is true. However, I kind of feel like the allegory fits me and my military background better than most. I was at war with a disease. I fought it with the support of my medical cadre and the love of my family and friends.

The battle is over; the enemy is gone. But the carnage remains. I come off of the front line with my head held high, exhausted from the fight but still proud. I have suffered wounds...some are visible, some not so much. I know that time will heal both, but I will forever, both physically and emotionally, wear the scars of a breast cancer survivor.

Remission is a sweet, sweet word, but I'm not sure I'll ever be cured.

Thank you, Christopher Hitchens

I stumbled across this fantastic piece by Christopher Hitchens, "Topic of Cancer" in the September issue of Vanity Fair . His eloquent description of the emotions associated with diagnosis of cancer and physical symptoms of the first couple of rounds of chemo is spot on.

In other news, only FOUR radiation fractions left until my treatment is officially o.v.e.r!!!!!

Not for the faint-hearted

I just started my fourth week of radiation today...I have eight fractions left, and then I will officially be DONE with active treatment and in remission!

I met with my radiation oncologist at my weekly appointment on Thursday. At that time, my underarm was an interesting shade of blackened red, but the skin was still intact. She actually said she was impressed that my skin has held up so well through all she's put me through (I guess that was a compliment?!) She told me she'd stop the bolus (YAY!) and also gave me silver cream (and described it as Neosporin on steroids!) to use if my skin breaks open. Sure enough, by Saturday, it did. There's some lovely fresh pink skin poking out under the charred mess over it.

I took a picture just to have it, and figured I'd post it here in case you're curious about what a radiation burn looks like. It's not terribly pretty, so if you're squeamish or faint-hearted, do not scroll down. I guess the good news is that since I don't have much feeling under my arm from my surgery, it actually hurts a lot less than it looks like it would!

My underarm after 20 radiation fractions: