Not quite vindicated

My sister sent me a text on Thursday asking if I felt vindicated by the backlash against Komen. I responded by saying that vindicated wasn't the right word. What I am is finally relieved that maybe now I won't be alone in thinking that Komen isn't the world's greatest organization. That I won't be the only person in the store in October thinking that purchasing pink can openers and pink cookie packages won't stop breast cancer. And I won't be the only one with a bad attitude towards the Komen walk/run registration tables at the mall.

My hope from the Komen PR fallout is that 6 months from now, I won't be the only one who remembers.

I would also like to use this post as an opportunity to promote Breast Cancer Action, who is on the forefront of the raising awareness about the environmental causes of breast cancer. I should have mentioned BCA in my last post, but if you are looking to donate to or get involved with a nationally-recognized breast cancer organization who actually tries to help women, BCA is a good one to look into.

P.S. I hope this post makes sense. Insomnia does not help my writing.

Keep the Money Local

If you've been following the news tonight, or been on Facebook, you've probably stumbled across the announcement that the Komen Organization has stopped providing grants for breast exams to Planned Parenthood affiliates. If you have no idea what I am talking about, here is a link to NPR's version of the story. I have strong opinions about Komen. For now, I will just say, that I am not a fan and leave it at that.

But I do have a message for everyone (at least those ranting on Facebook status updates) who is attacking Komen for cutting funding to Planned Parenthood. If you really care about women with breast cancer, and want to do something for them, put your money where your mouth is, and donate to local organizations. The walks, runs, and pink merchandise raise money towards keeping the the Komen machine running smoothly. But how much of that money is actually helping the woman (or man) who has been diagnosed with breast cancer and going through treatment? Cancer patients need caretakers, drivers, meals, and a clean house. They don't need another stupid ribbon. They are already aware of the cancer. It bit them in the ass.

Almost every community has local organizations which exist to help ease the life stresses of cancer patients. In my small, rural town I can name two. One group provides wigs; the other arranges drivers to take patients to a doctor or to the chemo clinic. Save your energy and don't passive aggressively attack Komen. Find a better organization in your local community to give your time or money donations. I bet the organizers will be pretty darn thankful.

You Don't Know What You Would Do

USA Today published an article titled, 'Preventative breast cancer surgery has some docs alarmed." The article informs readers about the growing trend of prophylactic mastectomies. The article didn't tell me anything I didn't already know. Young women who are diagnosed with breast cancer are more likely to have their breast(s) removed. I had my first breast removed because the cancer was starting to spread inside of my breast. I had the second breast removed the next year. I don't regret my choice.

I am writing this post in response to the commenters on the USA Today website who are judging women who chose to remove a breast or two prophylactic-ly. Y'all suck. Until you have been diagnosed with cancer, don't mock or judge or know that you would never do what I and other women have done. You don't know what you would do.

New Fertility Resource for Cancer Patients

SaveMyFertility is a new educational resource on preserving fertility for cancer patients (men and women) and their doctors hosted by The Hormone Foundation, The Endocrine Society, and the Northwestern University's Oncofertility Consortium.

For more information, see article published on 6/7/11 on HealthCanal.com, "SaveMyFertility is the First-ever, Comprehensive Bilingual Resource for Preserving Fertility for Cancer Patients."

If you read this blog, you know that I am now dealing the infertility after effects of chemo. I wish resources like this one had been available to me prior to chemo. If you know anyone who is about to go through chemo, please make sure they (male or female) are aware of the potential effects to their fertility and that there are doctors and scientists who want to help.

Graduate Student Study on Cancer Survivors and Post-Treatment Life

Reposting from Facebook: Cancer survivors -- help with my master's research! Read the note below & email yacancerstudy@gmail.com. Please repost! 
Posted on 5/27/11

If you are a cancer survivor between the ages of 18 and 50, could you please take five minutes to fill out an anonymous online survey for my master’s thesis? I'm a cancer survivor myself and an Occupational Therapy student at California State University, Dominguez Hills.  I’m trying to improve the quality of life for those who are experiencing long-term side effects of cancer treatment. My research team has already completed phase I of the study where we interviewed young adult survivors about their experiences with post-treatment life. For phase II we have developed a survey, based on those interviews, that will attempt to see how widespread these experiences are and eventually develop a plan to help survivors improve their quality of life and successfully engage in meaningful activities. The requirements for participating in the study are a diagnosis of cancer between the ages of 18 and 50, chemotherapy and/or radiation as part of your treatment, and completion of your chemotherapy and/or radiation treatment within the last five years. If you or someone you know fits these requirements, please send an email to yacancerstudy@gmail.com with your age and the details of your treatment (surgery, chemo, etc…) and we will send you a link to the online survey. Please repost this on your Facebook page or email to any survivors you know. The more participants we can get, the more we will be able to make a case for this important type of treatment!

Cruel Marketing

I like the Gap Corporation. Very few other companies have expansive lines of clothing for tall women (I am 6' 1/2"). All of the Gap companies (Banana Republic, Old Navy, Athleta, The Gap) have tall sizes for most of their clothes. But this post is not  going to be one of my manic rants about how very few companies make clothes for tall women (which I can go on and on about).

A couple of weeks ago, the Gap began sending me emails promoting their new maternity line. One email is fine. It lets me know about their new product. Two is kind of annoying. But the third email upset me. And I know don't think the emails will stop at just three. Why does the Gap think I want to purchase maternity clothes? At no time have I done anything to cause the Gap to think that I am pregnant, or even planning to be pregnant. I haven't even purchased clothes at babyGap for my nephew or any other baby. Most people probably just delete these messages without a second thought. The Gap marketing team is probably just sending these messages to all women of childbearing age. But...

As someone who recently come to the conclusion that she will probably never get pregnant naturally, I find these emails to be unnecessarily cruel. I know that I am too sensitive these days. I cry easily at TV shows with fertility storylines, babies, and young families. I get upset when I see pregnant teenagers in the grocery store. Don't worry, I'm in therapy. I am working through these confusing emotions, but infertility is not unique to me. I may not be a spokesperson for the infertility movement, but I would like to ask the Gap to reconsider this campaign. Women experiencing conception difficulties may already feel alone, left out, and isolated. Everywhere I go, whether it be a restaurant or Facebook, I see babies and pregnant women. I don't want to also receive email reminders of what I'm missing out on.

To the Gap Corporation, I do have one suggestion: promotional flyers at ob/gyn offices. Pregnant women are a captive audience in the waiting and examining rooms. Some of them may not already be Gap customers, and might need some new clothes. If pharmaceutical companies can plaster their ads all over doctor's offices, why can't a clothing company?

Full Support

Yesterday I wore a real bra for the first time since September 2008. Since the mastectomy, I have worn a mess of medical bras, light weight Gap sporty bras, prosthetics inside and outside bras, and nothing. The wearing of the bra was as uneventful as it should be.

Last week I went to Nordstrom's for a fitting. I chose Nordstrom for two reasons: customer service and their prosthetic program. Prior to my catching the cancer, my shopping experiences in department store lingerie departments had been less than comforting. Once when seeking a minimizing bra to fit into a special order bridesmaid dress, the sales lady loudly informed me that I could "just duct tape 'em, honey." At other stores, the sales clerks were nonexistent or uninformed. The only store that was ever helpful was Nordstrom's.

I was a bit hesitant about foisting my chopped-up torso onto an unsuspecting sales person, especially since the only people to have seen my winking smiley face (my nickname for my scars) have been my medical teams, my husband, and my mother. So while I got the go-ahead to wear bras from my surgeon a few months ago, I put it off. In my hunt for a nice lingerie store in the area, I discovered that Nordstrom's has a Prosthesis Program. I called ahead to explain my situation and was told I wouldn't need an appointment. So last Friday, I first went to a spa for a facial, and then to Nordstrom's for a bra fitting. The sales ladies were wonderful. They barely batted an eye; just went about grabbing different bras, whipping them on and off me until we found 3 that I liked. Their only concern was if I had healed from my surgeries.

If I could afford it, I don't know if I would shop anywhere else for bras ever again. I rarely leave a store feeling good about myself (a long boring story/rant about how clothing retailers don't make and/or sell  clothing for tall women and/or sell them in their stores), but I did on Friday. Thank you, Nordstrom's.

Chemo Killed the Radio Star

I don't know how to write what I want to write. My lack of writing for the past few months was not because I had nothing to say but rather I felt the topic was too confusing, too emotional, and possibly too personal. Luckily, I have my fur baby, Betsy, who has been my nurse/emotional support cat throughout this entire experience, in my lap as I write this post.

Once a cancer victim/patient (you choose) completes chemo and is done with surgery, the assumption of many is that the crisis is over. While the medical treatments relating to the diagnosis may have ended, the emotional healing has barely begun and side effects from chemo may have caused unseen and permanent damage. In one of my early posts, I mentioned a side effect of chemo for breast cancer patients: menopause. While going through chemo, it is common for the female patient to stop ovulating and getting periods. And it happened to me. The younger the patient, the more likely the odds that the ovulation will return after chemo treatments end, so we were optimistic.  Since chemo ended, my periods have been erratic. I have spoken to doctors and nurses, and read online discussion boards, and learned that it can two years for periods to regulate after chemo. My two year marker will be in April. April 8th to be exact.

I don't want to write a long post today. To explain my path and experiences over the past few months would take a while, and will try about it, just not right now. What I will say is that I think my odds of conceiving a baby naturally are low. I came to that realization yesterday. I am no longer going to be cautiously optimistic about getting pregnant. I know the two year marker is still two months away, but the statistical likelihood of my menstrual cycle suddenly normalizing that quickly is nil. And that makes me sad.

Breast Cancer is a money making industry

Article on the many unnecessary surgical biopsies performed in U.S. hospitals: "Study of Breast Biopsies Finds Surgery Used Too Extensively," by Denise Grady, published in the New York Times, 2/18/11

Still time to vote

If you haven't voted yet, or haven't voted in a while, don't worry, you can still vote for Casting for Recovery in the Pepsi Refresh contest. Right now, CFR is ranked #4 in the health category for the $250,000. I'll write about my experience later, but last month, I attended their Ohio retreat and had a wonderful experience. please help CFR win some money to help the program expand.

Moving Right Along

On Tuesday, we went to see magic fingers for a 6-week post-surgical appointment. As per usual, I have been healing wonderfully, and the surgeon is pleased with his work. He told me I am free to do what I want. No more restrictions on swimming, bathing, exercise or clothing. Yippee!!!

You simply can't do both

Breast Cancer Action, a San Francisco-based advocacy group that seeks to educate the public about potential causes of breast cancer, has a new campaign for Fall 2010. BCA seeks 6,220 signatures for a petition they will send to Eli Lilly, a corporation which makes both rBGH (a potential cancer causing hormone primarily used in dairy cows) AND breast cancer drugs. So far BCA has reached about half the signatures they need. The reason for 6,220 signatures is to equal one signature for each day that rBGH has been on the market.

Please sign the petition, and spread the word.

Private Quarters

For me, my cancer diagnosis has always been a private matter. I shared it with mainly friends and family. Due to my wedding happening two months after the diagnosis, I probably shared it with more people than I felt necessary, but I didn't want someone attending the wedding to learn about my situation at the wedding. If you were close enough to me to be there, you deserved to know.

At the time of my diagnosis and first surgery, I shared my situation with very coworkers. A few months later, when it came time to begin chemo, I felt that those who worked closely me deserved to learn about my medical status. And luckily, many of my coworkers respected my privacy and didn't gossip. Many colleagues didn't even realize what was happening until it was over, until I stopped wearing my wig. Being almost bald is kind of a giveaway. And I think there are many who still don't know.

My reason for being quiet was because I never wanted to be defined by a few rogue cells that decided to take root and grow within my body. Once you tell people that you have cancer, the disease takes over your life. People begin to look at you differently. Conversations are awkward. I didn't want my life to be only about the cancer.

Today, NPR produced a piece about people who feel differently than me. In fact, one person is quoted as thinking that a television character who is private about having cancer is not believable character. "Turning Cancer, Other Diseases, Into Causes" discusses changes in society's attitude over the past few decades regarding sharing diagnoses and promoting disease awareness.

As I write this blog entry, I wonder if you might find me hypocritical for claiming privacy since I write a blog. My blog began as a way to share what was happening in my life with a few close friends so I wouldn't have to call everyone every time something new happened. As my medical adventures have began to die down, I've wondered if keeping the blog going was necessary. My psychologist encourages me to write a journal as a form of therapy, and this blog is my cancer journal.

And I keep my blog public, just in case someone out there, maybe recently diagnosed with breast cancer, worrying that they may be alone, possibly overwhelmed by a scary sea of rah-rah pink.

Please Vote!

Please vote for Casting for Recovery in the Pepsi-gives-away-money contest. The deadline for votes is August 31, and you may vote once a day. Thanks!
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High Hospital Fashion

If only my big 5-day post-surgical hospital stay were taking place a year later, my gown could have been a Diane Von Furstenberg (DVF) original. According to Newsweek, the Cleveland Clinic recently ended a trial period, which began in May, of high fashion hospital gowns designed by DVF and will implement them soon. Hopefully the gown will be more comfortable than ones I've worn for my hospital stays. Oddly, the gown looks nothing like a wrap dress.

For more details on the DVF hospital gown, including a photo, click here.

Six Easy Steps

Six Easy Steps to Getting Complements:

Step 1. Gain weight by eating whatever you want due to depression caused by a cancer diagnosis.
Step 2. Gain more weight by eating whatever you want under doctor's orders while undergoing chemo.
Step 3. Get bloated from steroids being pumped in to you system on a weekly basis due to chemo.
Step 4. Eventually lose the chemo steroid bloat.
Step 5. Have surgery which takes fat from your stomach and uses said fat to rebuild your breasts.
Step 6. Finally lose the weight you gained after your cancer diagnosis so you finally weigh what you did before the cancer diagnosis. (check the blog in a few days for a more serious post on how I actually lost my chemo weight)

Suddenly you will begin to receive all kinds of complements about how skinny you look, even if you weren't all that skinny before the cancer diagnosis.

So now you ask, "How should I respond to all of the complements on my weight loss?" Just smile and say thank you. We don't want to be sharing our secret, or do we?

Not so into sharing

According to a recent Wall Street Journal article, the Susan G. Komen For the Cure foundation will fight you if you want to use the term "for the cure." Komen also won't share the color pink. Gee if only it seemed like Komen did more than raise awareness of Komen, I might feel differently about their possessiveness. Komen won't share the phrase or the colors with other breast cancer organizations nor will they share with other cancer foundations and charities. In case you haven't read all of my posts, I'm not so into the pink brigade. I understand the issue from a business/branding angle, but you would think a charity would be a little more understanding. Than again, what do I know?

"Charity Brawl: Nonprofits Aren't So Generous When a Name's at Stake." Wall Street Journal, 8/5/2010. Accessed online on 8/5/2010: http://online.wsj.com/article/SB10001424052748703700904575390950178142586.html?mod=WSJ_business_LeftSecondHighlights#articleTabs%3Darticle

P.S. I'm still recovering from my surgery so my brain is not totally functional otherwise I would probably have a lot more to say about this topic.

At Home Recuperating

Surgery was uneventful. Phew! On Tuesday, Brandon and I arrived at the surgical facility at 6:30am, were checked-in immediately, and minutes later I was whisked back into the surgical prep zone. The nurse assigned to prep me was the same nurse as last time (although this time she didn't tell me to stop being a brat). My surgeon arrived soon after, we discussed the surgical plans, and he marked up my torso with a purple pen to note the plans. Brandon was then brought back to see me for a few minutes. Within an hour or so, I was being sedated and wheeled into surgery. I am always amazed at how quickly the sedatives work via the IV.

The surgery lasted a couple of hours, I'm not sure exactly how long. My memories of post-surgery are a little vague. The nurses gave me a pain medicine which made me very dopey and sleepy, and caused me to forget to breathe. The nurses reminded me at least twice to breathe. Brandon was eventually brought back to be with me. The nurses eventually fed me ice chips, tea, and Lorna Doones. I was told that the Lorna Doones may be phased out from the hospital, and this upsets me a bit, so if I am called for a survey about my experience, I will make a comment about keeping the Lorna Doones. I think I was released from the hospital about 1:30ish. The drive home was uneventful. I drank my smoothie and dozed. Brandon and I arrived at home about 3:30ish, and I haven't been back outside since.

Prep Work

Before my surgeries, I madly attempt to make my house a more hospitable destination for healing. Since Brandon will not be home with me during the day, I need to know that food and entertainment will be easily accessible. Yesterday, we went to Trader Joe's, where I stocked up on cheese, hummus, crackers, chips, and fruit. After five surgeries, I know what I like to eat when I'm at home and don't feel well. Today has been whirlwind of activity around the house. And now I am exhausted, and drinking my last glass of wine for a few weeks.

Today's To Do List included the following tasks

• Multiple loads of laundry, folded and put away. Now I do laundry often, but usually I let the clean clothes pile up on the guest bed until it is time to do laundry again (meaning that the pile is gone).
  
• Found old VHS tapes to watch. I plan to spend time on guest bed since it is in the "coolest" room in the house. The VCR is in the same room, so I plan to watch some of my old VHS tapes. So glad the movies weren't purchased at the yard sale nor did I give them to Goodwill.
  
• Prepared and/or cooked the following items for consumption during the upcoming week: chopped cantaloupe, chopped and blended gazpacho, zucchini cake with chocolate chips, and cleaned sweet cherries. Also put ginger ale and sparkling water cans in fridge. And then cooked fresh peaches in grapeseed oil with leftover pulled pork, and corn fritters for dinner.
  
• Tore out recipes, decorating tips, and party ideas from old issues of the Martha Stewart magazine before tossing the magazines in the recycling bin. Not really a necessary pre-surgical task but something I'd been meaning to do for about a year. What would be a better time than when I've got a billion other things to do? I certainly can't think of one.
  

I keep thinking that I have forgotten something. And even if I have, it is not the end of the world. But I hate being entirely reliant on someone to do basic tasks for me. I won't be able to drive for a few weeks. I may not be able to sit up by myself. I won't know the full level of my limitations until Tuesday when I wake up from surgery. So I plan and prepare for the worst.

Thank goodness someone out there is less lazy than I am

Sometimes I don't read my magazines on delivery day. Sometimes, I let the publications pile up in the corner by the couch until they are about to collapse. Once the pile reaches a potentially harmful height, I kick off a mass reading spree infusing my brain with entertainment news, desirable travel destinations, and more recipes than I have the time or energy to cook.

Today I read my Cleveland Clinic newsletter, Catalyst, volume 8, issue 2, Summer 2010. Turns out an immunology researcher at the Clinic has found a way to prevent the development and halt the growth of breast cancer tumors in mice, and may figure out the way to do the same in human women. The key word in the prior sentence is may. But nonetheless, a pretty awesome development in the world of medicine. Maybe I should read my magazines sooner.

For more information, check out this online article, "Cleveland Clinic Researchers Develop Prototype Vaccine To Prevent Breast Cancer" (5/31/10).