I'll Be The One In the Funny Hat

It is very interesting how people react to seeing a person - a woman in particular - without hair. Most people are very kind.

Friends are quick to smile and tell me I am beautiful. They laugh and giggle and want to touch my hat or scarf as if touching my long gone hair. It isn't a nervous laugh, but more of a genuine, it's-good-to-see-you're-okay kind of laugh. And I thought I would feel awkward and shy upon seeing each friend for the first time without hair. Instead it is usually a happy moment.

Strangers are even better. They exclaim with grand exaggeration how much they love a certain hat or the color of my scarf! Even though they don't know me, they want to somehow reach out and offer me encouragement during this challenging time. They don't feel free to address my illness directly, so they offer their praises to whatever adorns my head at the moment. It's pretty darned cute. I love this kindness from strangers.

There are a small number of people that can not acknowledge it at all and they really don't want you to acknowledge it either. They're afraid to say anything to you and become very nervous if you say anything about it. They are more uncomfortable in their own normal skin than I am in my wacky bald head! I guess it takes all kinds....

So just remember, if you haven 't seen me yet - I'll be the one in the funny hat.

On another note, chemo #3 is Friday. This round will mark the half way point! My oncologist says the middle sessions of your regimen tend to be the hardest. She said she used to believe there was a medical reason for it and would run multiple tests and exams on people. Now she believes it has more to do with the patient's attitude - feeling tired of the treatments and yet knowing you still have more to go. I'm hoping the halfway mark makes me feel accomplished vs. dreadful of the remainder. I still feel lucky that this has been so tolerable.

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Knowledge Is Power

I just want to say thank you to everyone for your phone calls and notes the last couple of days. Thank you for feeling my sorrow with me and for sending your words of encouragement. It all helps to lift my spirits. When I started this blog, I had no idea how much I would be wearing my heart on my sleeve for all to see.

The shock of the news has worn off and I am feeling steadier on my feet now. I am feeling less devastated and more fortunate to have the knowledge that I have. I have lots of time to explore options and make decisions. I had a goal in the back of my mind to close this blog on December 31st of this year; I would close the door on 2008 and on breast cancer at the same time. Something tells me I may have to extend that deadline... I will keep you all informed as I gather information and make decisions. Just know that this will be a long and slow process.

Well - I have survived my first full week without hair! I'm still fussing around with scarves and hats and haven't found the best combo yet. I have branched out from the orange scarf a bit, but it is still my favorite. I also found an old brown hat that belonged to my dad in the days when men wore hats. I think it's going to be one of my favorites as well. I wonder if I'll ever be brave enough to go completely bald in public??? Surprisingly enough, my hair is actually growing! How is that possible? It started falling out exactly two weeks after the first chemo. I'll bet the second round happens exactly two weeks after round two - which will be this Thursday. However, I think the stubble will be a little easier to lose than my long hair!

So... life goes on. Thanks again to everyone for their support.

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A Curve In The Road

Life threw me a bit of a curve ball yesterday. Part of me isn’t ready to share this news yet and another part of me can’t hold it in.

Many of you may remember that I submitted blood work months ago for the breast cancer gene test. Wednesday I learned that I am positive for the BRCA2 breast cancer gene.

Damn.

The numbers behind the BRCA2 gene mutation are powerful. If you possess the gene, there is a 56% -87% chance that you will develop breast cancer before age 70 and a 27% - 44% chance of ovarian cancer. If you have ALREADY HAD breast cancer, there is a 64% chance that you will develop it again. And we are talking about a new, primary tumor in a different location or different breast – not a recurrence of the first tumor.

These are BIG numbers. I am looking at a 64% chance of another breast cancer tumor! Shit!

Needless to say, I am now faced with the decision of removing both breasts and my ovaries. Of course I will explore all options and talk to many experts, but my initial reaction is to say “take it all.” I do not want to play those odds. It’s a butt load of surgery and it sounds horrible, but I do not want to mess around with cancer any more. Fortunately, the decision isn’t urgent. There certainly won’t be any surgery until after my chemo is complete at the end of August.

I am trying to look at the upside of this. At least I know about the risk and I have the option to take various actions. I can prevent the cancer from occurring. I am empowered. I also have the opportunity to help a lot of women (and men) in my extended family. The analysis of my DNA was comprehensive and required 17,000 individual tests. But now they know specifically where to look for the gene and anyone in my family can have a simple, inexpensive test to determine if they carry the gene as well. Looking at my family history, the gene most likely comes from my dad. He will be tested first. If his test is positive, we will notify all the other family members.

This news was hard. I was so happy with the lumpectomy. Bi-lateral mastectomy? Ugh! I am emotionally devastated and my head is in a thick fog. There were plenty of tears yesterday and neither Ben nor I went back to work after the 10 a.m. appointment with the geneticist. I wasn’t able to maintain my composure or concentrate on anything. We drove out to the lake and watched our son who is participating in the Junior Learn-to-Sail program this week.

Today I am exhausted and very unfocused. I didn’t sleep much. I thought I was over the hump and now there is another whole game. I know - I know things could be much worse. I know I will be okay. Like everything else, it will just take time.

If you are interested in learning more about the BRCA2 gene and what it means, go here:
http://www.myriadtests.com/result-br1-positive.htm

Chemo 2 is Done

Well, I made it past chemo number two without much problem. My reaction was pretty much the same as the first time. I fought the nausea for several hours after the infusion and then felt tired, irritable, and hung over the next two days. I hate the nausea part but the rest of it I can tolerate. The weird part about the nausea is that even after it’s gone, if I think about it, I start to feel queasy all over again. It takes a few days to get it out of my mind.

The hair… is gone. It became such a mess I had no choice but to shave it all off. My sister-in-law, Diana, brought clippers to the house and shaved it for me. I have to tell ya – it is weird being bald. The loss made the weekend a little harder to handle. It’s a lot easier to talk the talk than to walk the walk – if you know what I mean.

For the first 24 hours, my head felt like it had mentholated cream all over it; it was tingly and cool. And my scalp feels very tender and vulnerable. There is still some stubble left so right now it feels rough like a cat's tongue! I’ve never been very good with accessories so this whole scarf and hat thing has me rattled. So far, I am clinging to one orange-ish scarf in particular. Every outfit will have to match this scarf because it’s the only one that feels comfortable!

This will take some getting used to….

Stress

Feeling a little stressed today. Chemo number 2 is Thursday. I went to the doctor this morning for my blood draw. They have to make sure your blood counts have rebounded from the previous treatment before you can proceed with the next. Once again, my paperwork got "lost" and I waited 2 hours for my appointment! Argh.... I had to ask the desk 3 times before they finally figured out the breakdown in communication. The doctor was very apologetic and said she would explore why the wait had occurred.

The doctor gave me a good report and said I was "ahead of the curve" so far. She said subsequent treatments usually follow the same course as the first treatment, so I should expect the same side effects and response time. I like knowing what to expect.

I'm not as worried about the chemo, but I feel like I am leaving way too much work undone. I know the world will go on without me and everything will be okay in the end, but I'm having trouble turning off my guilt meter.

One of my tasks for the weekend is to shave my head. The fall out is becoming too messy and bothersome. God, that's gonna be weird. What was that damn mantra?

My sister will be here again and it will be nice to have her back. She is such a trouper to come here from Nashville - which is not a short drive. I'm sure we will have a fashion and accessories session to deal with my bald head! She is much better at those kinds of things than I am.

Wish me luck! I'll let ya know how it goes.

Losing Your Hair Is Not A Tragedy... But It Is A Little Painful

Well, it's past midnight and I am having trouble sleeping tonight. I have a lot of things on my mind - plus - my scalp hurts. Yes, I have begun losing my hair. It is falling out by the handful. My scalp is itchy and tender all over - it's similar to the feeling you get when you wear your hair in a tight pony tail for too long.

Earlier today I got my sister in-law, who is a hair dresser, to cut it short for me. I figured a short hair cut would help to ease the transition to complete baldness. I started to tear up a little as I prepared to go, but I repeated the mantra a few times (see previous post) and pulled myself together.

I've had long hair since I was in Jr. High so the short hair feels really weird. I even scratched my neck with the comb because I'm not used to stopping that short! The hair is wild, unruly and extra curly. I have no idea what to do with it! In the end, it doesn't matter much. It is coming out so fast that I will be ready to shave it completely in a day or two.

When I got home from the hair cut, Ben and Eli had prepared a scavenger hunt for me. Written clues led me to various hiding places in the house where I found new scarves and hats to cover my bald head. It was extra sweet of them to try and cheer me up. I played along, but I must admit that it was kinda hard to be playful at that moment.

The emotional investment most of us have in our hair is strong. It is such a part of our identities. (Who of you can think of me and not see my hair falling across my left eye?) Hair represents health, hygiene, and how well you care for yourself. It is sexy, flirtatious, and something that makes us unique from one another. You don't have to remind me that the loss is temporary or tell me that bald is beautiful. I'll be just fine. I know that losing your hair isn't a tragedy.... but it's at least worth a big whine:)