Friday, September 23, 2011

if you can't outrun it, overthrow it

I heard some statistics on the news the other day: 1 in 2 American males and 1 in 3 American females will get some form of cancer at some point in life. And 1 American dies every minute from cancer. Odds are great that you or someone in your family has/had or will have cancer. Sounds pretty hopeless doesn't it? Especially when you take into account that cancer isn't even the leading cause of death in the U.S. (heart disease is).

So what are we supposed to do with this information? Sit around and worry about every ache and pain, lump, cough, odd mole or bruise that pops up? Screw that. Well...please do take precautions such as annual checkups and screenings and do go see your doc if something unusual is going on. Heck, not everyone dies from cancer. The ones that find it early usually fair well. But in between time feel free to follow my 3 step plan to overthrow cancer:

1. Enjoy Life
Do something fun. Today. Follow up with more fun tomorrow. You deserve it. And when you're at work or school or whatever, daydream a little about the next bit of fun you're planning.

2. Love Your Loved Ones
You know those people you used to hang out with all the time before you became an adult and started the 9-5 drudgery and forgot how to enjoy life? Give them a call, or better yet, a skype. Send an email, or better yet, a letter! Spend some time with them, enjoying life together. Remind yourself why you love them and then remind them why you love them.

3. Get Insurance
When cancer hits or some other illness, you sure will appreciate having health insurance! Even better if you can find decent health insurance. It may not seem fair, but even when you have cancer, they expect you to pay for it. And it sure takes a load off your already blown mind not to have to worry about how you are going to pay for surgery or medicine or chemo or radiation. A lot of insurance these days are 80/20 or 70/30. That means you foot the bill for 20 or 30% of a lot of things. I have been lucky to have had a ppo or hmo that paid for 100% for most of my surgeries or tests with small copays.

Now that I look back at things, I think I prefer to stay with an insurance that will pay 100% even if it means I have less doctors to choose from. This broken leg cost over $21,000 (not including the 8 weeks of lost wages). Our out-of-pocket cost has been about $125 so far which includes the visit to the ER, 4 doctor visits and 2 xrays, surgery, crutches and a wheelchair rental, 1 physical therapy session and an ambulance ride. Yep, loving the hmo even more so because it is the cheapest plan offered. Go figure. Now I just need to look into buying some disability insurance because State Disability Insurance doesn't cut it.

Sunday, September 11, 2011

guest post: a few words from wondertwin

Today's post is written by my wondertwin. The term "wondertwin" comes from the superheroes cartoon we enjoyed growing up. People often ask me what it's like being a twin. Picture your imaginary friend coming to life. We shadowed each other for the 1st 18 years of life before we went our separate ways to college. We had the same friends, shared a bedroom, birthday cakes and presents and now we share diabetes and a brca mutation.  

Thank you, wt for sharing some of your feelings with us, and your wonderful photos!

A Flood of Emotions
There are some things that we can prepare for and some things that we can’t. I like to think I’m a spontaneous, carefree kind of person, especially since I am young(ish) and single and easily amused. In reality, I am the kind of person who plans ahead… Far, far ahead when I can. When my wondertwin was diagnosed with breast cancer and subsequently found out that she was BRCA2+, I started drafting my game plan before I even had my blood work drawn. Part of my decision to jump right into prophylactic surgery was my 33 year history of type 1 diabetes. I felt that with my extensive family history together with my BRCA2+ status, it was going to be when I get breast cancer, not if I get breast cancer… And one of my thoughts was, “What if I wait so long that when I get cancer, my gastroparesis (diabetic complication) is so bad that I’d aspirate on the table and they won’t let me have surgery?” (Did I tell you that I am a nurse? With an old, though mostly kicked, habit of anticipatory doom?) And so I prepared for avoiding cancer.
Before each surgery (BSO, then PBM, then expander exchange), I planned and planned and planned. At first I thought this was a bad thing even though it wasn’t interfering with work or my social life, but my counselor explained to me that in fact, it was a very good thing for me to be doing. I am prone to anxiety, and by making plans and discussing the procedures and logistics and follow-up, etc. with my physicians and support people, I was able to take some control over what was about to happen to me. The more control I took, the less anxiety I felt. (Which was really needed before the PBM, as my anxiety was batting about a thousand.)
One thing I did between the BSO and the PBM was to get a tattoo! Growing up, I never could imagine myself with a tattoo because I thought I would get bored with it too easily, but then I came across some blog entries by people with diabetes (PWD) who had gotten medic alert tattoos. Since I have evolved greatly since childhood and made peace (mostly) with my diabetes, this really sparked something inside of me. The 1st thing I said when I made up my mind to schedule the PBM was, “If I’m going to get my breasts cut off, then I’m getting a f@*ing tattoo 1st!” And so I researched tattoo artists and diabetes tattoos and came up with a plan. When I described my idea to the artist, this is what he came up with…

Very cute, but definitely not what I was feeling in my heart, and so I hit the drawing board and this is what I ended up with… My tattoo warrior. She is brave and strong and helped me honor my own courage. It was indeed empowering, and I still love it 1 ½ years later. (Side note: the warrior is ripping apart the medical staff and stomping out breast cancer while holding diabetes at bay.)

So when it came time to consider nipple reconstruction, the possibility of 3 D tattoos rather than skin grafts was a consideration. At 1st, I really thought that I would be doing a disservice to any future partner if I failed to get “real” nipples, even though the grafts would never be quite the same as the real things.  But after discussing the pros and cons with friends and family (is that love or what?) and discussing options with my plastic surgeon, I decided it was way more worth it to me to never have to wear a bra again than to have nipples permanently poking out! And it’s my own body, right? More research and more planning (but only a 2 week wait!) and these beauties are what I ended up with… Before tatts, 1 day after, and 1 week after. (Still peeling and healing.)


So where does the flood of emotions come in, and what is it that we can’t always prepare for?
Despite all of my planning and prepping before each surgery, of course there were elements out of my control and unforeseen circumstances that nobody could have completely prepared for. As the day of my tattoos approached, I was so excited I thought I was going to wet myself, yet there were times that I was nearly overwhelmed with sadness. I mentioned to wondertwin that I must be reliving the feelings I had before my PBM, as if I was starting this whole sad mess over again instead of getting my gift wrap and celebrating the end of it all, cancer free and cancer won’t get me.
That morning, I had my purse packed with measuring tape (and instructions from the plastic surgeon on anatomically correct nipple placement), some 3 D temporary nipple tattoos (to assist with size and coloring), my favorite diet Snapple (The Amazing Race), and a snack in case my blood sugar started dropping. I had my glucose meter handy and was even wearing my brand new continuous glucose monitor (CGM) that had arrived the day before. My blood sugar quickly started climbing from a fairly low number in the 70s up into the 200s. I wasn’t anticipating this, but quickly realized that I was feeling as if I was headed off to yet another surgery (and my last one started with a very bad pre-op experience with the anesthesiologist) instead of to my friendly neighborhood tattoo artist who is very, very kind to me. So I wasn’t prepared, yet I was… I was equipped with the knowledge and power to respond to the threat. I calculated a correctional insulin dose and upped the rate on my insulin pump. I tested again when I got to the tattoo parlor and took another insulin dose and guzzled down my diet Snapple to help flush out any ketones that might be lurking about. I checked my CGM receiver often and took my blood sugar reading when my tattoo artist stopped to mix new colors. It took some time, but eventually everything evened out. (The peach dumplings that night certainly didn’t help. Oh yeah, the dough was made from potatoes!)
We can’t anticipate everything that is going to happen to us in life, but we can take what has happened to us in the past and learn from it and apply it to the future. I am lucky to be surrounded by people who love me enough to share their experiences with me and who allow me to share mine with them… Sometimes the best laid plans really DO work out.

The hospital where I had all of my surgeries had to be evacuated in 2006 during the “100 year flood”. A plan was developed which involved erecting a 7 million dollar flood wall around the hospital, which was completed earlier this year. A week after my tattoos were done another flood, even more damaging than that in 2006, hit the area and 20,000 people in the county were evacuated. The hospital was saved and remains open during the state of emergency.