My inspiration, my beautiful girl

My daughter died today. She was 25.

She was my inspiration to fight my breast cancer. I did it so she'd have me around for a long time. And now she is gone.

She will continue to inspire me to every greatness I might achieve.

But not today. Not right now.

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We're making money for the cause!

I got my first royalty check in the mail today, and am I every excited. It’s for $32.37… granted that’s not a lot of money but it’s a great beginning.

Proceeds of all my online sales go as a donation to a local pharmacy that provides wigs and prosthetic devises to women, and my donation will help those who have little or no insurance to buy the personal care items they need.

Proceeds for the sales I’m making on my own are being put into additional book inventory, so I can keep a supply on hand and take care of local interest.

I expect that to pick up in the near future, as I’ve started marketing efforts. I have press releases out to local media with promises of interviews and well-placed stories. I’ve got a connection at a radio station in Lawrence and hope to go on-the-air for a live interview. And I’m sending a book to Oprah. Can’t hurt!

So, buy-buy-buy! Help me make a BIG donation to the cause.
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On being thoughtless

One of the good things about the passing of time is that it puts another day between me and my breast cancer. It feels and sounds terrible selfish to say that but it's an honest statement about how I feel.

Dave and I went to a find raiser last night for our new friend Laurie, who is battling a brain tumor. She had an MRI recently that shows no evidence of her tumor, and that's wonderful news. She's filled with optimism and hope, and has a strong network of family and friends helping her along her sally. I'm convinced that that kind of support is key to recovery.

Laurie made a note on her Facebook page yesterday that she hates having "chemo brain." It's hard to explain what that is... you're disconnected and out-of-sync. Forgetful and slow. That's what I remember about it; it may affect people differently. Sounds simple and perhaps even routine, like an ordinary bad day.

But chemo brain is different because it becomes the new normal. It's not like the morning you drank the night away. It doesn't go away with a couple of Tylenol and nap. Chemo Brain makes it hard to get into a rhythm and to keep that rhythm going. Because it hangs on, you get used to it in an uncomfortable way. You start to grow concerned that this is the way you will always be. Your new normal is something that isn't what you used to be at all, nothing you'd choose. The harder you to try to fight to get back to being yourself, the more comfortable chemo brain gets to living in your world.

I used to worry that I'd never be "Me" again and that frightened the hell out of me. I couldn't imagine how my family could love me, my friends like me, my colleagues respect me if I changed into someone I didn't want to be because of the poison that was running through my blood stream. I was turning into someone I didn't know and didn't want to know. I wanted to badly to be "Normal Me" again that I'd have given up almost anything God might have asked.

I mention all of this because someone posted back to Laurie's lament, "But it's funny to the rest of us."

Funny? That remark bothered the complete hell out of me. I wouldn't say it on Laurie's Facebook page, but that shows such a lack of respect. That someone would find amusement in her cancer is a reaction I can't get my mind around. And apparently it wasn't just the writer finding humor... who are "the rest of us?"

I joke about my cancer, but it's OK for me to do it because it's mine. I earned the right to joke about it because I'm a proud, card-carrying member of The Chemo Brain Club. I sometimes voice an affirmative about something and give the reason as "Why not, it won't make my hair fall out!" I've even blamed something silly I did on the lingering influence of chemo brain.

It's OK for me to do these things because I've been there. If you haven't then you can't. My blog, my rules, but come on, think about it... it's decent and courteous NOT to make fun of people who have cancer.

Maybe the person who made the remark earned the right to make jokes about chemo brain the way I did, and the way Laurie is earning her membership card right now. But I rather doubt it. I think instead the writer is one of those there-in-the-moment kinds of people who makes time to think about Laurie when it's convenient to do so.

It's these thoughtless moments that make it OK for other people to continue the thoughtlessness and foster insensitivity. I'm not asking you to embrace it the way I do, I'm just asking you to do what your mother (should have) taught you to do... if you can't say something nice, don't say anything at all.

Put another way, if you can't show a little support, shut the hell up and get out of the way. We're fighting cancer and you're name isn't on the invitation list. We'll talk to you later. Maybe.

I don't want to rant on this any more. I want to forget one person's classless unkindness and move on.

On another cancer note, I'm going to Maine on Wednesday to spend the day with another friend who is in treatment with a brain tumor. She is having a very difficult time. She's been robbed of the lost the sight in one eye and is hopeful that her treatment will stop the tumor from stealing the sight in the other. When I spoke to her last week she sounded so tired... not just physically, but mentally--as if just talking and focusing on out conversation was a supreme effort. Talk about chemo brain.

She and her husband were given a week in Key West as a get-away, and they are there now. I'll call them tomorrow and confirm their return plans and get the time and location for her Wednesday treatment. It's going to be a difficult day and I'll be honest and tell you that my head isn't looking forward to it. But I also know that my heart knows it's the right thing to do and that my hart wouldn't have it any other way.

It's the little things that people did for me that helped my head find its way back from my cancer experience. It was the small gestures and the kind words that I placed on top of the foundation of love and support that my family worked so hard to build. It takes something as simple as a smile and a gentle touch of a hand. It takes listening. That doesn't mean agreeing, just listening--that is so important. And sometimes in just takes being there, in the same room or the same space. Just being there and letting the togetherness fill the space in place of talk and voices.

No one earning a membership card to the Chemo Brain Club needs ridicule disguised as friendship.

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A new me!

I'm looking and feeling different today. I have a breast form for my bra. It fills me up enough that I don't look lopsided any more.

Funny thing is, I didn't think I needed the help. Like so many other aspects of my disease, treatment, and recovery, getting a little help in the image department didn't seem important. This is what it is and I am what I've become. So what if the right side lags behind the left in size? I'm still me, right?

I thought so, and I thought everything was good the way it was.

At my last visit with my surgeon, I joked with him that he ruined me for bra shopping. "Do you have any idea how hard it is to buy a bra that fits?" I asked in a mock accusing tone. He pulled out his prescription pad and wrote me a script for 5 mastectomy bras, all the while apologizing for not having done so sooner.

"You're entitled to one of these every year," he said.

Earlier this week, the Pretty Girl and I went to Lady Grace in Danvers and spent an hour with a wonderful woman named Suzanne. She measured me for a bra to fit my left (full) breast, disappeared, and came back with a form to fill the gap on the right.

It's pure magic. Fits perfectly. Makes me even. Makes me very happy! The form is made of silicone, feels like real skin, and has a built in nipple. It comes with a two-year warranty. Pretty damn cool.

Turns out that everything wasn't fine. I wasn't fine with my appearance, and in a way that bothers the hell out of me. There's this sense that--to hell with you and yours if I'm not good enough the way I am.

But I'm also growing wiser as I age and live with breast cancer as a part of my life (granted now it is in the past, but it's still part of what I've become). The wise side of me is trying to understand and accept that it's OK to be humbled by all of this, and it's OK not to be a rock all the time. Not that I'm weak, far from that, but it's OK to let it overwhelm me now and again.

That's what happened this week. Once again the breast cancer became something to deal with, not hide from. I let it take front stage and be the point of discussion. And this time I got to walk away from it feeling better about myself and the way I look.

A win-win.

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The book is a hit!

I've had amazing feedback on the book. The comments that mean the most to me came from my mother, who never read my blog. She just couldn't bring herself to face it and I never pushed or asked her why. I figured she'd get into it when the moment was right. I guess being healthy and publishing the story brought her to that moment.

She said she particularly liked my use of humor. I know I laughed out loud a couple of times when I read it. I've always hid behind humor and used it to defuse tension. Perhaps it wasn't always appropriate, but I am what I am.

My cousin Melissa is taking part in a breast cancer walk tomorrow (Sunday, Oct 18) in Manchester NH. She's been participating in this event for 25 years and in honor of her mother, Natalie, who died in 1985. That's the aunt I refer to along the way when I talk about my family history (my aunt Nat and her mother, my grandmother, Ruth).

Melissa called the other day and asked for as many copies of the book as I had to give her. She's taking them to the walk tomorrow. We'll see whether it sparks any more sales.

It fills my heart to know that the book is touching people, whether they've faced this themselves or love someone else who has gone through it. Every story reminds me of my good fortune to have gone through it and come to the other side in good health.

(On a side note, I heard a radiation therapy professional refer to patients "cured" through therapy. I'm not sure I'll ever believe that the words "cancer" and "cure" can fit it the same sentence. I'll hope, however, that it really happens--and happens soon.)

I'm having breakfast tomorrow with Tanya and Debbie, my Sistas. We're overdue to be together. I'll post a photo.

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Good news on the BC front

Found this in the newspaper this morning:

LOS ANGELES - US breast cancer deaths have declined about 2 percent a year since 1990, according to the American Cancer Society.

Its report estimates 192,370 women will be diagnosed with the disease in 2009 and 40,170 will die from it. Only lung cancer accounts for more cancer deaths in women.

Death rates in black women have started to fall at the same rate as those for Caucasians, but remain 40 percent higher.

Based on the latest data, survival rates for women with breast cancer are:

■ 89 percent at five years after diagnosis
■ 82 percent after 10 years
■ 75 percent after 15 years

I like what I read. Anything that's positive is a good thing. Among the positive lately is good news for my friend Elaine.

I'm getting nice feedback on the book. It's exciting and its humbling.

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THE BOOK IS HERE!

My book is officially available at www.lulu.com (click for a direct link to the page) and will soon be on Amazon.com.

I'd love to come an do a reading for your group! Drop me a comment and let's talk!


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Another extraordinary woman

I met someone special yesterday, a beautiful baby girl named Grace.

She was baptized at church yesterday and our minister invited me to “receive” her on behalf of the congregation. When he concluded the ceremony he walked up the center aisle with Grace, stopping along the way to show her to the congregation. I was standing at the back of the sanctuary at the top of the aisle and he handed her to me. I walked back down the aisle with Grace and the minister, then stood with her family while the minister said another prayer. Then he turned to me and said, “OK, you have to giver her back now.”

Laughter. Wonderful laughter.

Every child is special. But this one is a little more so, I dare say. Her mother, Laurie, has been diagnosed with Ewings sarcoma and is putting up the fight of her life. She should be enjoying motherhood. Instead she’s having chemo, and lots of it. She says she feels good but she’s tired. I’m not surprised.

She wrote last night and thanked me for taking part in the service. She says she reads my blog and look up to me and admires my strength. She closes her signature with a quote from the blog:

"This isn’t easy. Not one bit. But we make it through because we are strong and we’re so worth the fight."

It’s not easy. For some it’s harder than it is for others. You know how I feel about my fight. Laurie’s, I imagine, is harder than I ever thought mine might ever be. I hope Laurie will be a lucky fighter, like I was. Like I am.

So this morning I’m thinking about Laurie and Grace. When she’s older Grace will be very proud of her mother. Right now they just deserve to have time to be together like all mothers and daughter should have. Time to do everything or nothing at all, whatever the spirit wants the day to be. Carefree and in the moments. Without chemo, drugs, doctor, worry and dread.

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Excellent news for a Cancer Sister

My friend Gail (my Gail with the brain tumor) got wonderful news today. Here is the message her husband sent:

"Gail had an MRI this morning at Dana Farber in Boston. Scan showed about 50% reduction in tumor from last scan 8 weeks ago. Same reduction both in temporal lobe (original tumor location) and in vicinity of optical nerve (where last scan showed tumor had spread).

"This is better than average result for patients like Gail who begin taking Avastin after recurrent tumor growth. FDA recently approved Avastin for recurrent brain tumors based on studies showing 26% of such patients having 50% or more reduction. Gail is pleased that she is in the group with such good results! We are all greatly relieved..."

Isn't that fabulous news? I'm so excited for Gail and her family. When you're walking the fine line, you look for every bit of good news. It carries you forward with a momentum that I just can't explain. You have to go there to understand.

Whatever. It's great news and that's the only thing that matters.

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A very difficult day for a BC sister

I got an email today from a friend of a friend who is going through a tough time with her breast cancer treatments. It’s an important mail to share. My response follows.

She wrote…

I haven't reached out prior to this because, for the most part, I've been doing fine....this weekend I've hit a wall. All weekend my stomach has been upset in anticipation of my first 4 hour Taxol treatment Tuesday (I've had 4 Adriomycin & Cytoxin doses thus far which were about 2 hours and now we are switching), and my husband just pointed out that it's not until next Monday that I have my chemo! this week is just a blooddraw to check my numbers....I'm feeling like a kid who doesn't want to go to the Dr's, I think if I was the one driving I'd be late constantly because I dread it so much...it's so much so that even though I don't get nauseous with the chemo meds, I actually get nauseous the day or 2 prior to chemo..it's all psychological but I can't seem to control it....and I actually have not had it that rough at all. My numbers have been great, I haven't experienced nausea or vomiting..all I've had to contend with really is heartburn and the hair loss...and I still have some hair (although I look like an old lady in need of her perm and tease!)

I'm just dreading the 4 hour treatments so much that I want to cry sometimes, and it's really not rational because they keep telling me how the AC was so much worse and if I made it through that the Taxol will be a piece of cake...Everyone says just focus on the positive, think good thoughts...I've been so positive all through this and I'm nosediving all of a sudden and I feel as though I should be soaring because I am halfway through and it's suppose to be an easier medicine but just can't get those wings to open and thus instead of soaring I'm nosediving.....

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And I responded:

I'm glad you wrote. Sounds like you're having a just awful horrible time and I'm so sorry.

I think it's everyone's job to tell you how great you're doing and how the next step will be easier. It's their job to ell you to be positive and to think good thoughts... when all you really want to do it tell them all to go to hell. Am I right?

This isn't easy and it isn't a piece of cake. It's hard and it's difficult and it's no fun at all. You know it, and I know it and deep down inside a lot of the people who are telling you to be positive... well, they know it too. But being positive and upbeat is what they are supposed to do. It's their way of getting themselves through what you are going through. You have the hard job, enduring the treatment, watching y our physician shelf change, losing your hair and your appetite, feeling off balance and just not like yourself. Their job is hard too, because all they can do is stand by and watch all these crappy things happen to you and there is nothing they can do to stop or change it, so they put on the cheery face and try to be positive and happy.

I did the same two drugs, A & C, four treatments, three weeks apart for the first three and then two weeks between treatment three and four. That last one was MISERABLE! My treatments took about 3 to 4 hours at a time. I didn't do Taxol (I think that's a drug given to women who have no yet gone through menopause, but I could be wrong...) So, you're waking a path I didn't have to go down. I can't relate exactly to the Taxol, but I hear you LOUD AND CLEAR on how hard this is and I understand how much you really don't want to continue. But you really have to, and I know you know that.

Seriously, I'd ask your doc if there is something you can take before your treatment that will relax you a bit. Seriously... My doc told me the offer was on the table, if I ever needed anything to get into and through treatment.

Here is one other thing. You say you are nosediving. Don't beat yourself up over that. You are entitled to have low points. You can't expect to be on top of your game all the time. You need to allow yourself the time and opportunity to withdraw and just be inside your own head for a little while.

My advice would be to NOT focus on the feeling of nosediving versus soaring. Can you give it another name? Maybe instead, think of it as having strong days and not-so-strong days. Great days and not-so-good days. It's a game of words, and certainly the rotten days are just that... rotten. But call them something that's not so daunting. How about if you call a good day by your favorite dessert name, like, "Today is apple pie!" and call a bad day by something you really don't like as a dessert, like, 'Today sucks like green jello."

It's word games, but they help you over the hump.

One more thing... and this is really important. When I was at your point in treatment (just done with my four A & Cs), I was worried (truly) about my mental health. I felt like I was off my game, a step or two behind everything, not sharp, not focused. Do you know what I mean? I was SO worried that I was never going to get back to being myself, that I would always feel out of touch and fuzzy.

That didn't happen. I got myself back. I got back my focus and my clarity. I honestly feel stronger and more collected that ever. Really, I mean that. I am NOT just saying this to help you over a rough patch. It happened for me. It will happen for you.

This uncomfortable place you find yourself in is normal and natural and to be expected. The most important thing you can do right now is accept that it's OK and normal. The next most important thing for you to do is to reach out and ask for some help getting through it. You took the first step when you wrote to me for some help. Now you need to take another step and call your medical team. Ask your doc or your nurse at the oncology center for some guidance on what you can take to help you relax as you get ready for your next treatment. Call them tomorrow.

And stay in touch with me. I'm really glad you wrote.

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This isn’t easy. Not one bit. But we make it through because we are strong and we’re so worth the fight.

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