Cancer? I don't even know her!

Focus for the Cure

2010-12-20T13:20:00.000-08:00

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...

2010-11-24T09:15:00.000-08:00

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.

2010-10-22T09:56:00.000-07:00

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?

2010-10-12T10:37:00.000-07:00

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...

2010-10-05T07:54:00.001-07:00

.... 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!

2010-09-27T12:07:00.000-07:00

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

2010-09-22T10:06:00.000-07:00

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?

2010-09-08T13:28:00.000-07:00

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

2010-08-24T06:43:00.000-07:00

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!)

2010-08-09T06:07:00.000-07:00

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

2010-08-03T07:51:00.001-07:00

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

2010-08-01T07:45:00.000-07:00

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!

2010-07-23T08:39:00.000-07:00

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

2010-07-16T11:00:00.000-07:00

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)

2010-07-09T07:43:00.000-07:00

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...

2010-06-29T11:19:00.000-07:00

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...

2010-06-21T10:38:00.000-07:00

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...

2010-06-14T09:20:00.000-07:00

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

2010-06-04T12:01:00.000-07:00

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

2010-05-22T09:54:00.000-07:00

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

Ta-ta to the tata's!

2010-04-18T22:32:00.000-07:00

There has been a recall on all 1981 model Cristal Hydo's for faulty parts. Tomorrow I'm taking her into the shop to get worked on.

I wasn't nervous until I started getting a lot of "good luck"s and "I'll be thinking about you"s at my last day of work on Friday. I'm not even sure why I'm nervous. I am positive nothing will go wrong and that I'll heal quickly. I have the best surgeon around and a great plastic surgeon as well. I guess since I've never actually had surgery before (except for wisdom teeth), I just don't know what to expect!

My friends and family have been great (as usual). Earlier in the week we had a "Ta-ta to the tata's" bowling party and I bowled a 144 (I have photographic evidence to prove it). I also picked out my new tata's:

Tonight my friends surprised me with a big dinner at Rocco's Tacos. My parents, youngest sister, and grandma are here for my surgery and to help out at home. I'm all packed and ready to head to the hospital in the AM.

Pre-op

2010-04-14T11:08:00.001-07:00

Days until surgery: 5
Number of eyelashes: 12 (11 on the left, 1 on the right)
Hair length: Still about 1 mm

I went in for my pre-op appointment this morning for my mastectomy on Monday. What I have to do to prepare is not take any medications that would thin my blood, do not eat or drink after midnight the night before my surgery, and wash the surgical area with anti-bacterial soap the night before and the morning of my surgery.

My surgery is first thing in the morning so I have to be there at 6AM. They will take me to pre-op, knock me out with anesthesia, and when I wake up I'll be in recovery. Seems simple enough, right? I'm getting a bi-lateral mastectomy (both sides taken out) and lymph node removal on my left side only. This is done by my breast surgeon. Then my plastic surgeon will put in tissue expanders and drains and they'll sew me back up.

I've been trying to figure out what I can do to prepare at home for my surgery. The recommendations I've gotten have been to buy cami's and button up shirts (a shopping trip? Deal!) because it'll be hard for me to reach over my head to put clothes on. Also helpful is to move dishes, food, etc on lower shelves because I won't be able to reach them for awhile. I have family members who will be staying with me so they should be able to help me with all the lifting and reaching that I need. I went into my closet and arranged it so all the button-up shirts are in one section. I don't know what else to do to prepare, so I'll just relax and wait!

Eye of the storm

2010-04-06T08:54:00.000-07:00

Number of days since chemo = 26
Number of days until surgery = 13
Length of hair (in mm) = 1

I'm sitting here in the eye of the storm waiting. This is an eerily calm period between chemo and surgery where I don't have a lot going on. I don't know what to do with myself, I only have about one doctors' appointment a week. My blood counts are bouncing back up. I can tell because I'm only sleeping 8 hours a night (yes, only 8). My little hairs are trying so hard to grow. I'm feeling better. I'm working full time.

I've had the pre-op meeting with my plastic surgeon so I have an idea of what to expect for surgery. To prep I basically need to avoid blood thinners and bulk up on vitamins. I'll be in the hospital for what I expect to be 2 days. Then lots of pain, sleeping, and healing.

I had my blood taken by the vampires today for the BRCA genetic test so I should get those results in two weeks. I also learned a new fun fact today: People with larger than normal heads are more likely to be genetically predisposed for breast cancer. The nurse practitioner measured my head, it's pretty normal sized.

It's a date!

2010-03-26T11:23:00.000-07:00

The date is set for my mastectomy: April 19th, 8 AM. I'm having my surgery at the Jupiter hospital. I expect to be there for about two days (the day of and the day after). First my surgeon will remove the breast tissue and perform a sentinel lymph node dissection. He's going to remove the first lymph node (and possibly a few more) closest to the breast, the sentinel or watchdog lymph node, and test it for cancer. If it's clean, he doesn't need to remove any others. The idea of doing this is to reduce the risk for lymphadema. Lymphadema is a pain in the butt side effect where the fluid won't drain out of your arm because the fluid-drainers (the lymph nodes) were removed. It's permanent and painful so we don't want any of that.

Next, the plastic surgeon is going to put in spacers. These will keep my skin stretched out while I'm going through radiation. The skin is very elastic, like a rubber band, so we're going to put in the spacers to keep the shape.

It should take me a few (~3) weeks to heal and I can start my radiation after that. Then when radiation is through I can start reconstruction.

It's the end of the chemo as we know it...

2010-03-25T07:00:00.000-07:00

... and I feel fiiiiine.

I've been criminally late at updating my blog lately. The fatigue has been hitting me through my past few treatments. First, my blood cell counts are low (so low that they almost didn't give me my last chemo treatment). Secondly, I'm having hot flashes at night waking me up every few hours. Not fun, not fun at all!

Well, I've been recovering from my last chemo (woo woo!). The achiness and neuropathy were just as bad as previous treatments, but have been fading away. As I said, my fatigue is pretty bad but I anticipate that it'll get better soon as my body rebounds from my last round of toxic chemicals. In any case, the chemo was a success and shrunk the tumor down an incredible amount. Hooray for modern medicine!

Hair grows about a half inch a month, so it'll be quite awhile until my hair grows back. I'm kind of relieved about this, because after my surgeries I won't be able to lift my arms to wash my hair. No hair means problem solved!

So the question on everyone's mind is... What's next??

The plan: bi-lateral mastectomy, radiation, reconstruction. A bi-lateral mastectomy means they are going to completely remove both breasts. Hey, the things tried to kill me... I have NO attachment to them now. Why, you ask, a bi-lateral mastectomy if the tumor shrunk down to practically nothing (I'm a mind reader today, I know)? That has to do with factors like the type of breast cancer I had (see my previous post on Triple Negative), the initial size of the tumor (11 cm), and my age.

I met with my surgeon and a few plastic surgeons to try to hash this all out. I currently don't have a date set yet for surgery, but will keep everyone posted!

Chemo 7 and follow-up

2010-03-09T11:52:00.000-08:00

Chemo #7 went off without a hitch. I felt nauseous after the pre-meds so they gave me Ativan and then it was night night time for Cristal. The next few days I spent in Atlanta for the Young Survival Coalition's Conference. I have had the same symptoms as the past few times... achiness, neuropathy, fatigue. My red and white blood cell counts are still low.

At my check-up, my oncologist ordered a couple of scans. First there was the CT Scan of my head. There is a chance of metastasis to the brain with Triple Negative breast cancer (that means that the cancer cells decide to take a family trip up to my brain, like what they see and permanently move in). Mine came back all clear. They didn't tell me whether they had found any grey matter in that head of mine though... hm...

Then there was the ever comprehensive (and ever expensive) MRI. The basic conclusion from the MRI was that the chemo worked (wasn't it supposed to?). They compared my previous scans to the current ones and the tumor had shrunk substantially. There were a few spots that still "lit up" on the screen.

So now I'm planning my surgery and reconstruction. I'm planning on a bi-lateral mastectomy (the suckers tried to kill me, chop 'em off!). It'll be about a month after the end of chemo. I'm still looking at reconstruction options.

You can pick your friends, you can pick your nose...

2010-02-22T10:03:00.001-08:00

I had a PICC line installed today. PICC stands for "Peripherally Inserted Central Catheter". For those of us who aren't medically inclined, a PICC line is basically a more permanent version of an IV. They inserted it into a vein in my arm, which goes to an artery and then on to my heart. It will stay in my arm for the rest of chemo (usually they last for a month or two). There are two tubes that hang out of my arm, one for taking stuff out of me (drawing blood), and one for putting stuff in me (chemo).

It was really easy and not painful to get the PICC line installed. I wish I would have known that sooner, it sure beats getting stuck a bajillion times every time they try to find my veins at chemo. They used some local anesthetic (like what they use when you go to the dentist) and then a few minutes later it was done. The downside to the PICC line is that I have to make sure it doesn't get wet so there won't be any germies... infections are not allowed, no sir! Also, I have to flush the lines out daily with saline solution. I wonder if I can put my Diet Coke into a plunger and just inject it straight into my veins?

New news is new news.

2010-02-18T19:20:00.000-08:00

I had a very eventful checkup with the oncology group. I'm very low on iron, so they ordered me to eat a steak for dinner. Deal! They said it was time to schedule an appointment with my surgeon. I also have a "treatment summary" appointment scheduled with my oncologist.

Since my veins have been disappearing and being difficult (it took three nurses four tries to stick me at my last chemo), we decided to have a PICC line installed.

Now, the most important part. I've been very achey with the Taxol and Abraxane. It makes it uncomfortable for me to sleep so I am exhausted. Then, there is the neuropathy (numbness and tingling in my fingers and feet). The neuropathy is a concern because instead of getting better over time, it only gets worse (and may be permanent). With the Abraxane, the neuropathy is more likely to reverse. The other option is to take smaller doses in more frequent treatments. This would mean I'd have three weeks of treatments, a week off, and then three more weeks of treatments, thereby extending my chemo for a few weeks. So the question is... if you had to get sick would you prefer a) a flu with a fever and the whole bit, completely knocking you out for two days, or b) a cold with a sore throat and the sniffles, but still being able to do most things for two weeks (and no cheating and saying you don't get sick or you get ebola in this hypothetical situation)? I guess I'd pick the flu. I'll just tough out the chemo for two more treatments (the side effects aren't unbearable, just uncomfortable).

Chemo #6

2010-02-12T08:03:00.000-08:00

Two more to go! The Taxol was making the bottom of my feet hurt (neuropathy) so they switched me to Abraxane. It's a natural (as opposed to the synthetic Taxol) protein so most patients handle it better. Plus the neuropathy is more reversible. It took three nurses four tries to find a vein. Once they started the benadryl, I was out cold. I didn't wake up until a half hour after my chemo was finished. I went home afterwards and slept some more. I'm very happy that these treatments don't make me nauseous, although I was just getting the hang of how to handle the nausea when they switched me. Now I have to find a way to deal with the achiness.

I put the FUN in fundraising

2010-02-03T07:58:00.000-08:00

Team HYDOOO did an amazing job with the Susan G Komen race for the cure! We ended up in 4th place (so far... they're accepting donations through the end of February) and raised $15,500. That's a whole lot of mammograms! The race was an incredible time. I got to ride in the pace car for the walk in the back of the Ford Mustang. They dropped me off a block up so I was able to rejoin the massive crowd for the walk. Thanks to Tim and the boys holding up pink foam fingers I was able to find them in the stream of people.

The local (channel 5) news interviewed me the day before the race. Tania Rogers was a sweetheart (her husband works with me at Siemens too) and did a great job with the segment. I had a bunch of strangers come up to me the day of the race and say "I saw you on the news!!". Here's the link:
http://www.wptv.com/content/news/topstories/story/Race-for-the-Cure-breast-cancer-Cristal-Hydo-Te/YdqVSht2-E6-rBE006eLJw.cspx

After I finished the race there was a survivior ceremony. It was really nice. They gave us a pink carnation and brought us on stage for a few songs. Palm Beach Post's video of the survivor ceremony (look for yours truly a few minutes in):

http://www.palmbeachpost.com/news/race-for-the-cure-2010-203874.html

So... now what do I do to save the world? ;)

New Chemo Regimen

2010-02-02T11:27:00.000-08:00

I am more than halfway through with my chemo treatments! I finished my AC (Adriamycin and Cytoxan) and have moved on to the Taxol. Usually the Adriamycin is the hardest to tolerate, and causes the worst side effects as far as nausea is concerned. My oncology nurses were surprised I was still able to work while undergoing AC.

The Taxol was a lot easier on me. They started me with an IV bag of anti-nausea and benadryl (some people have an allergic reaction) which actually made me nauseous so they gave me some Ativan to help with that. After that it was night-night time for Cristal. I haven't had any nausea or queasiness. I haven't even needed my anti-nausea meds. Yippeee!

The worst part about the Taxol is that it causes achiness. My ankles and knees hurt which makes it difficult for me to sleep comfortably at night. This really doesn't help with the fact that I'm fatigued to begin with. Plus, weirdly enough, the bottom of my feet hurt so it makes it annoying to walk around.

Other than that, things are going ok! I'm in the home stretch for chemo.

Cashing in on Karma

2010-01-26T09:30:00.000-08:00

It's amazing the outpouring of support I have received through my treatments thus far: cards, gifts, donations on my Race for the Cure team, well wishes by the heap, whole churches praying for me, animals sacrificed (ok, maybe not that last one). It's been incredible being able to see just how many lives I have touched in my 28 years causing trouble on this earth. I feel as if I'm cashing in on all the good karma that I have been building up. I've been a friend, volunteered for charities, gone out of my way to do nice things for other people and it's all coming back to me tenfold.

I started a team for the South Florida Susan G. Komen Race for the Cure a few days after my diagnosis. I used the race as an upbeat way to break my diagnosis to most of my friends and family. It's funny when I think about it now, but at the time I wasn't even sure I could get 10 people to sign up. My friends just took off with it and I've gotten 101 people on my team (and there are people who missed the deadline and wished they could join). We've been at third place overall for amount of money raised for the cure... currently we have close to $13,000! The two teams ahead of us are big companies (FPL and South Florida Waste Management), and I think it's incredible that we've gone toe-to-toe with them.

All this fundraising has not gone unnoticed. The Susan G. Komen Race Committee read about me on my team page (http://www.komensouthflorida.org/2010rftc/hydooo) and were tracking my progress. I had the fortune to meet them at a survivor celebration, and I was not prepared for all the fuss that they made over me! Since then they have joined my army of supporters, and have opened up incredible doors for me.

When our local newspaper, the Palm Beach Post, wanted to interview someone connected to the race that had done a lot for the community, the ladies at Susan G. Komen immediately sent them in my direction. The article can be found here:
http://www.palmbeachpost.com/health/cancer-victim-s-race-team-of-100-has-193571.html

I don't like that he refers to me as a cancer victim because, as anyone who knows me can testify, it's cancer that is the victim of me in this situation. Cancer really didn't stand a chance. Also I don't like that he wrote I have sad times and wonder "why me?" because it really isn't true. Well, it's true that I have sad times. I'm like everyone else; I have good days and bad ones. But never - not once - have I wondered "why me?". Overall, though, it's a nice article. I've gotten a lot of recognition for it from friends and even from strangers. I'm famous! I wonder if I'll get a stalker? ;)

There are more good news to come... stay tuned...

Negative Negative Negative

2010-01-11T08:00:00.000-08:00

So you know how you thought that breast cancer was breast cancer? Yeah, me too. But apparently there are different subtypes depending on whether they have the genes for estrogen/progesterone receptors (ER/PR) and human epidermal growth factor receptor 2 (HER2). A receptor is a protein that lives inside or on the surface of a cell and binds to something in the body to cause the cell to react. The most successful breast cancer treatments are hormone-based drugs that directly target these receptors. So a person with a ER, PR, or HER2 positive subtype would see a lot of success with something like Tamoxifen or Herceptin.

I'm triple negative, which is more agressive and seen in only ~17% of breast cancer cases. This means that traditionally it's less responsive to treatment so they've been hitting me hard with the chemo (bring it, I can take it). It's also diagnosed more frequently in younger women and women with the BRCA1 gene mutation.

What does this mean? At this point in my treatment, not much. The type of breast cancer I am fighting is an aggressive SOB but I'm kicking it so hard into next Thursday that it's crying home to momma. In triple negative breast cancer the cells divide quickly, and the point of chemo is to stop cell division (hence the reason for the hair-loss) so it is very successful. And my last checkup is sure proof of that!

Feel Your Boobs People

2010-01-08T07:14:00.000-08:00

I was on facebook last night cruising through brilliant comments from the elite thinkers of our generation and I came across this gem. Someone had commented that breast self exams are useless, they heard about it on Dateline. My first reaction: Are you kidding me?

Voila, the article:
http://www.msnbc.msn.com/id/25679831

"..a new analysis confirming that the breast self-exam (or BSE) truly doesn’t make much of a difference after all."

Ok, time for the second response: Are you kidding me??

Women in their 20s and 30s rarely get breast cancer,” he says. “But they do have a lot more benign lumps and bumps. It’s not worth emphasizing breast self-exams for women at this age.”

True, I just yesterday had a discussion with my oncology nurse about this same topic. Breasts are dense and fibrous at younger age, and they tend to un-dense with age. This means that mammograms are more effective for women in their 50s than in their 20s. The picture is just too dense for younger women. It's like trying to see a polar bear in a snowstorm at the north pole or chilling on a grassy football field at halftime. Plus in young women there are all sorts of things that cause lumps. Heck, I'm sure just thinking about lumps causes lumps.

It's this exact thinking, however, that almost got me in hot water. I found a lump, went to my OB/GYN and he dismissed it as excessive caffeine intake. Now, to be fair, 9 times out of 10 (or maybe 99 times out of 100) that is the case. For me, it wasn't. The important thing is to know what's normal for you and elevate concern if you start to see other signs. For me in addition to finding a lump I had itching, pain, a red spot, the breast was swollen, and my nipple was flattened. Now, my OB/GYN still didn't think that it was a concern, but luckily I am a persistant pain in the butt and was referred to a surgeon sent directly from the heavens to save me so I was able to catch it (even though it was advanced, it wasn't too late to treat).

So feel your boobs my friends, or I'm coming over there to feel them for you. And, most importantly, educate yourself. Know your risk, know what's normal or abnormal for you, know the warning signs. And don't be afraid to be a persistant pain in the butt if you know something's wrong. I'll back you up.

All's well on the western front

2010-01-07T08:41:00.000-08:00

I went in for my checkup this morning and everything is going great. The nurse practitioner could not even feel the tumor at all, and this is just after 3 treatments. Of course we're going to finish up with the remaining five because after we kill the cancer we're going to kill it a few more times for good measure.

The nurse practitioner was really pleased at how little of the side effects I've been seeing. My energy levels have been good. The nausea hasn't been too bad. My white and red blood cell counts are really good. I haven't had fevers. She says I'm a testament for someone else going through treatment. I guess I'm the 'best case'.

She also told me that the current cocktail mix (AC) is usually worse on people, so that means one more of the bad kind and then smooth sailing. I might have a bad reaction to the Taxotere, but since I've been kicking this like a rock star so far I'm banking on things going well.

Chemo #3 - Happy New Year

2010-01-01T09:14:00.000-08:00

Well the holidays were pretty busy for me. My family came to Florida to visit (a trip that was planned pre-diagnosis) so I had a full house. In addition to that we drove to Ft. Myers to visit grandma and to Key West for fun. And in addition to that I had a doctor's appointment and a chemo treatment.

Christmas Eve: Checkup
All good news so far! The tumor has shrunk from 11 cm (about the size of a fist) to less than 2 cm (less than an inch... I don't know why they measure in metric). My white and red blood cells are holding up pretty well. I decided on shaving my head that day because the tiny pink hairs were falling out en masse, so I'm rocking the bald/hats/scarves look.

New Years Eve: Chemo #3
This time around the treatment knocked me out. I was asleep almost the entire day, woke up 5 minutes before the ball dropped and to watch the neighbors shoot off fireworks, and then back to bed. The nausea was a little worse than last time, but I'm doing well with all the other side effects.

I haven't chosen a New Years Resolution... I think getting rid of cancer is a pretty good one (and one I have to keep for once!). Right now I'm just focusing on getting through treatments and trying to enjoy as much of life as I can. Happy 2010!

All your hairs are belong to us.

2009-12-22T06:22:00.000-08:00

I don't feel sick. Aside from an altercation with a rogue body part of mine, I feel perfectly normal. To look at me, you'd never know that I had cancer. You can't see the toxic chemicals coursing through my veins. You can't see the invasive tumor in my breast.

Until now...

My hair has been falling out in full-force. This has been quite traumatic, although I don't think people understand why. It's not a vanity issue. I don't need hair to feel pretty. This is the first physical mark of my cancer. From now on, when people look at me they'll see a "cancer patient" and associate me with the stereotypes that go along with it. And I don't feel like one, not at all.

To prepare myself for the eventual hair loss, I first dyed my hair pink. The next step was a short pixie cut and another round with pink hair dye. I'm glad I took that route. Seeing the short pink hairs fall out in the shower makes me feel like it's not actually my hair. My family keeps pressuring me to shave my head, but I just don't want to do it. Not until I have to.

A lot of people have suggested wigs, but I don't see a point in them. Are they supposed to make me less self-conscious? Because I will constantly be worried about people noticing that it's fake or off-centered or sticking up in the back. They're itchy and uncomfortable. I'm going to prefer hats and scarves.

I guess I just have to sigh and remember that I am more than my cancer. That sounds like a cliche, but it's still true.

Sugar Feeds Cancer

2009-12-15T11:39:00.000-08:00

Every time I eat sugar-free candy, I hate the world just a little bit more.

I've been cutting back on my simple sugars (candies and alcohol have been the main problems for me) in order to starve this sucker inside of me. I've been working hard to say "no" to the free chocolates in the break room. I try to have visions of blueberries instead of sugar plums dancing in my head. It's already working, he's wasting away to practically nothing. He's getting as skinny as an Ethiopian, I can tell. Other than reducing sugar, I haven't had much of a restriction on my diet. Generally, I'm supposed to eat more protein and more vegetables/fruits. I'm still allowed my heavenly Diet Coke (in moderation, of course).

Now, for the hard part..... a life of sobriety. A study that was recently released says that drinking alcohol more than 3 drinks a week is linked to the recurrence of cancer (and an increase in the d-word of breast cancer). Since I was diagnosed, I have had a grand total of one whole beer. You can imagine how dramatic a difference this is for a single 28 year old. *sigh* This completely changes my life. Kickball games? Tailgates? Concerts? I can look forward to being the permanent designated driver, and forever the sober one trying to instill reason into a bunch of drunk imbeciles. Oh how I'll miss being one of those imbeciles.

Pour one out for me, my friends.

Cancer Threat Levels

2009-12-11T07:00:00.000-08:00

I had my first blip on the worry radar. I came home from work with chills and a fever of 101.5 oF. My oncology nurse told me when that happens, to call the doctor on-call and go to the hospital. Why is a silly fever such a concern? My immune system is being torn down by these chemo drugs (an unfortunate side effect) so fighting infections is like Delaware declaring war against the U.S. Sorry, little friend, it's not going to end well.

We called the doctor and he said to take Tylenol and go to bed, and if I still had a fever in the morning (I didn't) to go to the hospital. *phew* Got through that one. Then I noticed how much it had worried my friends (they were ready to drive to my house in the middle of the night and take me to the hospital themselves), which got me thinking about how to manage other people's worry.

Thus was born... the "Cancer Threat Levels".

Cancer Threat Pink: All is good
Cancer Threat Yellow: Slightly elevated worry (i.e. fever), no hospital visit, being monitored
Cancer Threat Orange: Elevated worry, going to the hospital
Cancer Threat Red: Hospital admittance, get your butts over to my bedside and take care of me

"Worrying is like a rocking chair. It'll give you something to do, but it won't get you anywhere. Write that down."

Chemo Sabe Cristal, the Cancer Warrior

2009-12-04T07:41:00.000-08:00

Chemotherapy wasn't nearly what I was expecting. I took this picture to show my worried friends that it isn't as scary as it sounds. I spent four hours with an IV in my arm just reading, watching a bit of Food Network, and listening to music.

First, they start me with an IV bag of anti-nausea medication. Then they flush it through with saline. Next was a plunger full of Adriamycin (which is bright red), and more saline to flush it through. Then an IV bag of Cytoxan, and yet again more saline to flush it through. By the end I had to pee SO BAD (which, fun fact for ya, came out red from the Adriamycin). My cheeks were puffy from all that extra fluid.

On the way home from the hospital the first of the nausea started to hit me. I had to ask my father not to accelerate or break very quickly or I wasn't going to make it the five miles back to my house without getting sick in my car. For the rest of the night I was feeling pretty miserable from the nausea. But, being me and completely insane, instead of resting that night I had a few friends over for a hair dyeing party. What color did I dye my hair? Pink. To handle the shock of losing all my hair, I decided that my first shock was going to be a fun one.

A woman with a plan

2009-11-27T13:04:00.000-08:00

After seeing my oncologist my head was spinning. They sat me down for hours and explained EVERYthing. I'm doing neoadjuvant chemotherapy, which for the rest of us means chemotherapy before surgery. Then I will have surgery, and then radiation. Why chemo first, you ask? Since I am young, my cells are dividing pretty quickly which means that the chemo will be more effective. The chemotherapy works by stopping quickly dividing cells, which is why hair loss ends up being a side effect. Speaking of side effects, the oncology nurses explained the many many side effects that I will be dealing with as I go through this. They also gave me a fistful of prescriptions to get filled to manage the nausea.

The next steps are to get a PET Scan to see if the cancer has metastasized, and to get an Echocardiogram to see if my heart can handle the treatments

My chemotherapy drugs of choice:
Adriamycin and Cytoxen (for four treatments, two weeks apart)
Taxotere (for four treatments, two weeks apart)

My anti-nausea drugs of choice:
Emend, Phenergan, Zofran, Decadron, Ativan (optional)

Baby got background info

2009-11-24T12:15:00.000-08:00

I've had a lump for awhile (August is as far back as I remember because I had it on my 28th birthday) but when I went to see my OB/GYN about it he said "Oh, I don't feel it now. It's probably because you drink too much caffeine. You know that new tea place opened up in the mall? Girls drink tea and they don't realize it has a lot of caffeine in it." I thought to myself "You know what? I do drink an insanely large amount of Diet Coke" so I gave up my BELOVED Diet Coke for two grueling weeks. In those two horribly terrible Diet Coke free weeks I started getting some pain. I went back to my OB/GYN and I said to him "No sir, something is wrong". He thought it was an inflammation and an abscess (which is extrememly rare in women who aren't breast feeding) so he put me on antibiotics and sent me for an ultrasound (where they ended up doing a mammogram as well).

The report from the mammogram and ultrasound seemed to agree with him that it was an inflammation and abscess, so the OB/GYN went on vacation and referred me to a surgeon to have the abscess drained. I saw the surgeon on friday 11/20 and when he reviewed the films and the symptoms he told me that it didn't look like an abscess. He tried to get me in for an MRI friday afternoon but the radiologist said "Pssshaw, my weekend has already started" so Monday morning bright and early at 7AM I had an MRI and that's when they found my swollen lymph node (but it still wasn't entirely clear what was going on).

Monday at noon my surgeon did a biopsy and Tuesday 11/24/09 at 4pm he called with the results. I was positive in both my lymph node and my breast for "Poorly Differentiated Ductal Carcinoma".