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. :)