Focus for the Cure

Woah, I finally (randomly-ish) found the "Focus for the Cure" segment that we taped last March and aired in May on WPTV (channel 5 local news). I was finishing up chemo and was exhausted that day. I had to lay down and take a nap before the interviewer arrived. And how weird is it to see me with no hair?

http://www.youtube.com/watch?v=o9QBAWVRj4U

(The doctor interviewed is my oncologist.)

One year ago...

Today is my cancerversary. One year ago I was diagnosed. What a milestone. With Thanksgiving tomorrow, it's a perfect time to sit back and be thankful for the year that I've had. The amazing, crazy, awful, beautiful, painful year.

Breaking News: Facebook is still dumb.

There have been a few breast cancer awareness campaigns floating around facebook. The first one that appeared last year, post your bra color as your status, I let slide. The second one that started floating around a few weeks ago, post where you keep your purse as "I like it on the...", made no sense to me. Now the third, post your shoe size followed by the word "inches" and a frowny face, is the worst of them all. These have about as much in common with breast cancer awareness as I do with Snookie from the Jersey Shore.

I have therefore decided I'm going to start my own awareness campaign: Know your risk of breast cancer. Play along, it'll be fun! (Do you know your risk? I sure do! It's 100%).

-If you are a woman, you automatically get 2 points. Men get 1 point.
-If you are over 40, add a point.
-If you had your first period before the age of 12, add a point.
-For every first degree (mother, daughter, sister) relative with BC, add a point. If they were younger than 50 at diagnosis, add another point. For every second degree (grandmother, aunt) relative with BC, add a half point. If they were younger than 50 at diagnosis, add another half point. If you have been tested and are BRCA positive, add 5 points.
-If you do not exercise regularly, add a point.
-If you are overweight, add a point.
-If you drink alcohol, add a point.
-If you use birth control pills (or other hormones), add a point.

If you have 1 - 3 points: Low Risk
Perform breast self-exams. Know what's normal for your body. At the age of 40 start getting yearly mammograms.

If you have 4 - 6 points: Medium Risk
Perform breast self-exams. Know what's normal for your body. At the age of 40 start getting yearly mammograms. Talk to your doctor about ways you can reduce your risk (healthy diet, exercise, stop boozin').

If you have 7 or more points: High Risk
Perform breast self-exams. Know what's normal for your body. Yearly mammograms can start as early as 35. Talk to your doctor about ways you may reduce your risk (healthy diet, exercise, locking up the liquor cabinet, prophylactic mastectomy, chemo/hormone suppressants).

*NOTE: These values are subjective and came from my brain and my 11 months of research into the fascinating world of breast cancer. Also, BOOM!

Over pinkification?

I've been thinking for awhile about what I wanted to say about Breast Cancer Awareness Month. I was diagnosed last November so this is my first one as a survivor, which makes it a completely different experience for me. As in, before it wasn't an experience at all. The pink ribbons were just on the edge of my consciousness. Sure, I was "aware" of breast cancer. It existed. I knew about it. But it was something that happened to old ladies, not something I had to worry about. I didn't need to worry about breast self exams. I had ten more years before I had to worry about mammograms.

I knew that pink ribbons equalled breast cancer awareness, but I wasn't at all aware of breast cancer. The treatments, the scars, the constant worry, the fighting for my life... this is what the pink ribbons mean to me now. Pink ribbons accost me wherever I go (my sister says "It looks like pink ribbons threw up all over the grocery store"). I would say they're a constant reminder, but how can you be reminded of something if you never stop thinking about it in the first place? Between my own treatments and checkups, managing after-effects, and volunteering for the Susan G. Komen Race for the Cure, breast cancer is constantly on my mind. I don't need the pink ribbon products in order to be "aware".

I especially don't need a pink ribbon product that says "5% of the proceeds to benefit breast cancer research...". The $4 is better spent being donated directly to a charity than to buy a product from a company that disguises their greed under the premise of being charitable. They use the pink as another marketing ploy. It makes sense, too. One in eight women will develop breast cancer in their lifetime and with all-time high survival rates, there are a lot of survivors walking around out there. Not to mention all the survivors' friends, family, co-workers, etc. who just want to show support. "Buy our $4 cereal and 4 cents will be donated to breast cancer research...". No thanks. I'll buy the generic and donate the dollar I save.

"So what, then, can I do to make people aware?". I'm very glad you asked that. I personally raise awareness by blogging, twittering, facebooking, and everything short of shouting my story from the top of a mountain (but only due to the distinct lack of mountains in Florida). "But Cristal, I don't have an inspiring story like yours to share." Yes, thank goodness for that! You can still get educated and spread the word. Breast self-exams: Do them and know what is normal for you. Get your mammograms after 40. Know your family history and know your risk. Boom, I just dropped an awareness bomb on you.

And now for your halftime entertainment...

.... ME!

Chemosabe Cristal: International TV star. (thanks W for the pic!)

(There I am! Just to the left of the lady in the pink wig).



As part of Breast Cancer Awareness Month (or, as I call it, October) the NFL is going pink to support Making Strides Against Breast Cancer. Late last week I received an e-mail from my local Komen affiliate saying that the first 100 survivors who replied would get a free ticket to the Monday Night Football game for the Dolphins vs Patriots and be on the field for the halftime show at SunLife Stadium. You bet I jumped all over that! And lucky for me, the median age of breast cancer patients is 61 so most of the survivors aren't as tech-savvy as a 29 year old with an awesome new smart phone.


They brought us down to the sidelines and had us line up while the players finished the first half of the game. Then a bunch of cheerleaders sporting pink performed while Kelly Rowland (of Destiny's Child fame) sang a few of her songs. When Kelly busted out with "Survivor", we walked down the field and the dancers unfolded a giant pink ribbon. Then the show was over and we were ushered off the field. It was such an exciting whirlwind of a night, and I can't believe I had the opportunity to be on the field!

Being in the majority is cool!

Let me just state that what brought on the topic of this post was my most recent PET Scan.

You spend most of your life thinking you're nestled safely in the majority of all statistics. If I told you that 0.625% of people will spontaneously combust, you're probably not gonna go running for the fire extinguisher. You'd probably wager big that you'd fall into the 99.375% of the people that would be just fine (I'd take those odds!). As a young woman, I had a 0.625% chance of getting breast cancer ("young" is considered to be less than 40). Right before my diagnosis I had been told over and over that it wasn't possibly cancer and that I was too young. The shock of diagnosis hit me, my family, and my friends *that* much harder.

Now I've finished treatment and because of my triple negative breast cancer, there is no further therapy I can do to try to prevent a recurrence. I have had all the odds stacked up against me: my age, the triple negative status, my BRCA gene mutation, and my stage IIIA at diagnosis. So I hit the cancer with everything they've got. The most potent chemo, the most severe surgery, and even a "boost" on top of all the radiation treatments are all that shield me from a recurrence. Now I am pushed into the world of "survivorship" and everywhere I turn I'm faced with frightening statistics. With my super-aggressive type of breast cancer, I'm looking at a 30% chance of developing a recurrence and a 15% chance I won't see my 35th birthday? And these are "good" statistics? Now if I told you that you had a 30% chance of spontaneously combusting, I bet you'd be standing ready with the fire extinguisher, a garden hose, and the fire department's phone number on speed dial.

Now you can start to see some of the anxiety that I, as a survivor, have to live with. Every ache and pain in my body I immediately think is a metastasis (spreading of the breast cancer to other parts of the body). If I have a headache, it's brain mets. If I have a pain in my back, it's bone mets. If I have pain under my expanders (which I should! the tissue has been cut out and fried by radiation) then I think it's a recurrence. So yes, I am very happy to be done with treatment but as long as I'm living under this constant worry then I don't feel "cancer free". (I have been told, however, that with each clean scan the worry lessens.)

Chemo curls

I get a lot of comments as people walk past my desk on my curly hair. Since I can't see the back of my head, I took a picture. I just thought I would share it with you all.



The most frequent question people ask me is "Was your hair this curly before?". First of all, weird that in less than one year's time I have met SO many new people. Secondly, no, my hair was not this curly before. It was somewhere between straight and wavy. If I blow-dried and straightened my hair I could wear it straight (but it was a constant battle against the Florida humidity). If I put product in my hair and used the diffuser, I could wear it wavy-curly.

Would you?

I went to visit my surgeon today, and he mentioned that bi-lateral mastectomies associated with BRCA+ gene mutation was in the news. I didn't know what he meant, so I looked it up and I found this:
http://www.medicalnewstoday.com/articles/200240.php

For women who are BRCA+ (like myself), having a prophylactic, or preventive, mastectomy can reduce their risk for developing breast cancer in the future. For us gene mutants, our risk for developing breast or ovarian cancer is very high compared to the rest of the population. Women with a family history (which I don't have) have begun to be genetically tested for the mutation, but then when they find out their results they're faced with the question of: what do I do now?

In my support group last week we were asked: If you could rewind time and have a prophylactic mastecomy, would you? My answer was a definitive YES! That would have made things extremely easy on me. In one surgery I probably could have had the mastectomy and the reconstruction. I would not have to go through chemo. I would not have to go through radiation. I would not have to deal with the long term side effects of treatment like anxiety, chemo brain, lymphedema, and possible infertility. I would have been done with it and moved on without skipping a beat. Unfortunately, I was never given a warning that this lurked in the future for me. Without a family history, there's not much reason to get BRCA tested. Even if I had the test and came up positive, I'm sure pre-cancer me would never think that something as unimaginable as cancer could possibly happen to me. I would have taken my chances and not elected for the surgery, betting that I'd be just fine.

It's like buying the warranty for your car... you don't need that, what could possibly go wrong?

Scanxiety

I went to visit my oncologist. She ordered a PET Scan for the end of September. This will be the first time I've been scanned since just after I finished chemotherapy. During my surgery they removed the tissue and tested it, so I know how well the chemo shrunk down the tumor in my breast tissue and lymph nodes. This scan will show that it did a bang up job keeping the cells from spreading anywhere else.

The worst part of the PET Scan is the diet. I have to be on a zero carb, high protein diet for the two days prior to the test. I can only eat meats, hard cheese, and a few vegetables. No fruits, no Diet Coke, no alcohol. It's rough. Then they inject me with radioactive dye, so I will be radioactive for a few hours after the test. The sheet that they gave me said "Sorry but no, you will not glow."


In addition to the PET Scan, they recommended that I get checked out by a dermatologist (always a good idea) and my optometrist, because being BRCA1+ is also linked to an increased risk of melanoma (apparently you can get melanoma in your eyes, I never knew that). Heap them on to the pile of doctors visits I already have.

Growing older (but not up!)

I'm celebrating my 29th birthday today! Most people lament getting older but, as we all know, I'm not most people. I'm one of the rare people who don't mind growing older, in fact I celebrate it! It's much better than the alternative! As I think back on my 28th year, it's amazing how much I've been through. I'm amazed that I haven't broken down or freaked out and not ever once given up.

So this year, these are the five presents I'm going to give myself that will give me joy:
1) Love everyone in my world. Let them know I love them. Let them know why I love them.
2) Cross items off my bucket list, then immediately add more.
3) Appreciate the beauty everywhere.
4) Give myself a break!
5) Stop feeding my body junk and get back to exercising.

Getting Through It

Someone on my message board sent this out. I loved it too much not to share.

http://1000awesomethings.com/2009/12/31/601-getting-through-it/

Keep on moving

Do you know what sucks? Moving.

Do you know what sucks more than that? Moving one week after you've finished radiation treatments and are still fatigued.

Do you know what sucks more than that? Moving one week after you've finished radiation treatments and are still fatigued and after you've had a bi-lateral mastectomy with expanders making it extremely difficult to even lift boxes.

Do you know what doesn't suck? My friends. They helped me move. :)

33 down, 0 to go!

8 rounds of chemo: $87,000

Bi-lateral mastectomy: $85,000

33 rounds of radiation: $65,000

Being done with treatment and cancer free: Priceless!!

My last radiation treatment was today. I know I have a lot left to do still with the reconstruction, but hey - the hard part is over!

To celebrate, I had dinner with a few friends last night. I tried to invite the friends who visited me in the hospital during my surgery, came over and cooked for me or hung out with me when I was sick with chemo, reassured me (for the thousandth time) that I do *not* look like an alien with no eyebrows, and just supported and loved me through the roughest time that I hope none of them will ever have to come close to going through. Having all of these amazing people around me is such a blessing. I don't know how I can ever repay them for everything they've done. Maybe I can work out a 30 year payment plan, that ought to cover it (plus interest).

Today at work, they took down the "Cristal" tree. They decorated our Christmas tree in pink ornaments and kept the tree up this entire time that I've been going through treatment. Since I'm done and cancer free, we had a ceremonial taking down of the tree and BBQ lunch (plus a cake!). My boss said some really nice things and I got all misty eyed. Then I said some dopey things and told them all to go away before I started crying. I'm really lucky to be at a job where I have such great support and understanding.

Ok, enough sentimental ramblings for now.

Extra Innings

Well, the good news is I don't have radiation today. I've completed my 28 treatments. The bad news is, we're going to go ahead with the scar boost so I have treatments all next week. My skin looks really red and rough. There's a spot under my arm that is rubbed raw, and it hurts every time I move my arm.

Just for fun, here's a picture of my radiation "hickey".

Oh my my!

23 out of 28 (or 33)

Call me Crispy Cristal. I'm starting to get very burned and ouchie from radiation. There's a big spot under my arm where all the skin is rubbing off. My Radiation Oncologist informed me yesterday that he might like to do a scar boost, which would mean an additional week of treatment aimed specifically at the scar line. It depends on how my skin holds up. I'm not gonna lie, I was really really (really really really) looking forward to being done next week. I'll just have to do whatever's best and soldier on.

16 down, 12 to go...

More than halfway through my radiation treatments! I'm starting to get the pink "sunburned" square on my left side. It doesn't hurt very much except when the seatbelt rubs against my skin. My eyes keep getting heavier and heavier, so fatigue is setting in. I slept 10 hours last night and could still go for a nap.

Yesterday I had a checkup with the oncologist. She says it looks like I'm golden. She asked if it felt like I was cured, I said maybe it will when I'm done with radiation treatment. It's hard to switch mentality from "I have cancer" to "I had cancer", especially when there is so much fighting left to do.

My oncologist said to me "You're only 28? That's disgusting. Well, 29 should be a better year for you."

11 down, 17 to go...

After two weeks of radiation I'm still doing very well. I have just started having a tint of pink on my skin and my eyes are slightly droopy, but nothing very difficult at all. My Radiation Oncologist says the side effects will really start to hit me this week and next.

I experienced a few days of panic this week when I went to log on to my health insurance page and it said my insurance had been cancelled effective May 31st. I was pretty hysterical calling the health insurance company and my HR department trying to figure out what had happened. It had to be a mistake, right? They can't just drop you without telling you! It turns out that it was, in fact, a mistake. My HR had me entered into the system as terminated (I'm pretty sure Arnold Schwarzenegger had something to do with this) so they fixed the glitch. I have health insurance back and no break in coverage. Hooray! This got me thinking how much I treasure my health insurance right now. For most people it is a safety net, but for me it is the parachute when you're skydiving. I definitely had an "Oh S@#$" moment this week when I pulled the cord and the chute didn't open!

5 Down, 23 To Go...

I have finished my first week of radiation, and so far it has gone well. My appointment is at the end of the day, so I leave work and arrive there at 4:45. I change into a paper gown (I wonder how many trees I've killed with all the paper gowns I've worn this year), lay on the table for a bit and I'm done. It takes about five minutes to line me up and five minutes to zap me with the radiation. Every other day they put a gel pad on me that simulates skin, which brings the radiation field closer to the surface. Then once a week I see the doctor just to check in. It doesn't hurt at all and so far I haven't seen any of the side effects (red skin or fatigue). Here's hoping it stays easy!

Radiation Run Through

Today was my dry run for radiation. They sat me on a table for an hour while the radiation machine (usually nicknamed the cyclops because it has one big eye looking thing) took some pictures of me. They were trying to see where all my vital organs are so that they won't damage them with the radiation beam. They also gave me another tattoo today (my fourth). They look like tiny blue freckles. Since I'm an enginerd I call them my datum tattoos.

They say the worst of the side effects will be a skin reaction, like a sunburn, on the affected area and towards the end of treatment I will feel fatigued. It should be a breeze compared to chemo. I am going to have a total of 28 treatments, 5 times a week for the better part of six weeks. July 14th my treatments are DONE! :)

Relay for Life

A friend of mine sent me this picture. They made a luminary for me at the Ft. Lauderdale Relay for Life.