Open your mind, Open your life!

Got My Squishy Boobs Today!!!!!!

2007-11-19T21:24:00.001-05:00

I had my exchange surgery today for my permanent silicone implants and I think I'm pleased with the results. Still bandaged up along the front, but I can tell by the shape and size that I will love my new boobs. I appear to be back to my normal size ... roughly a 34C!

The day started very early with me having to be at South Miami Hospital by 7:30 am. My surgery finally got underway around 11:30 am. I was in recovery around 1:30 pm, and eventually made it home by 5:30 pm. I feel a little loopy still from the anesthesia, but no real pain to speak of. Just a little sore.

Dad and Joan, of course, were there with me all day. My new boyfriend, Leighton, was also in attendance which was a BIG, HUGE DEAL for me. I guess I've been so conditioned by my past relationships to be rather independent (which doesn't say very much about my choices, huh?), it seems so weird when someone I'm dating WANTS to actually be there for me. I told him a couple weeks ago that this would be an outpatient procedure, but he was nevertheless insistent that he would come, read a book, and wait with my family for me to come out of surgery. I almost had tears in my eyes when he said this and I thanked him for being so sweet. He seemed so puzzled by my response, stating, "Babe, where else would I be that day?" This is the first time in a very, very long time that I have felt so completely loved and supported by the man in my life. This is also part of the reason I have not been posting on my blog as of late. (smile)

I feel so happy to have a renewed sense of normalcy in my life now ... new boobs and new love! YIPPEEE!!!

YSC Affiliate Leadership Conference

2007-11-18T22:35:00.000-05:00

I went to Houston this weekend to attend a leadership conference for the Young Survival Coalition, better known to everyone as my online breast cancer support group. My girlfriend, Julie, (who I met through the YSC) recently decided to start a local community volunteer group here in Miami. She asked me to assist her in getting the organization up and running -- formulating ideas for the group's exposure and fundraising activities. For all that Julie and I have been given in the way of emotional support at YSC, I think it's a perfect way to pay it forward. As founding members of our local group, we were required to attend this leadership conference in Houston. This annual conference provides all affiliates an opportunity to meet and network.

The conference was so well organized and well attended. Honestly, I was a little surprised. I always thought of the YSC as more or less an "online support group." It never really occurred to me that this was also a rapidly growing organization structured much like any other corporation with a CEO, Presidents, employees, etc., with a mission for research and advocacy. In fact, The Young Survival Coalition is the only international, non-profit network of breast cancer survivors and supporters dedicated to the concerns and issues that are unique to young women and breast cancer. Through action, advocacy and awareness, the YSC seeks to educate the medical, research, breast cancer and legislative communities and to persuade them to address breast cancer in women 40 and under. The YSC also serves as a point of contact for young women living with breast cancer.

Unlike their post-menopausal counterparts, young women diagnosed with breast cancer face higher mortality rates, fertility issues and the possibility and ramifications of early menopause. The YSC seeks to change the face of breast cancer by: advocating to increase the number of studies about young women and breast cancer; educating young women about the importance of breast self-examination and early detection; and being a point of contact for other young women with breast cancer.

Incredibly, the organization was founded only 9 years ago in 1998 by three young breast cancer survivors, Joy Simha, Roberta Levy Schwartz, and Lanita Moss (pictured above left to right between me and Julie). All under the age of 35 at diagnosis, they were discouraged by the lack of information and resources available to young women, and concerned about the under-representation of young women in breast cancer studies.

It was such an honor to meet these ladies in person and to be able to express how much the YSC meant to me right after my initial diagnosis and during my treatment. Lanita was visibly moved by what I had to say (although that glass of red wine could have had a little something to do with it too ... kidding), and she told me it warms her heart to know that an idea that was tossed around at a coffee shop in New York City would become what it has. She said it seems so surreal that this organization has grown in the way it has and that it is getting fast recognition among the likes of more notable breast cancer non-profit groups such as the Susan G. Komen Foundation.

They say that you have to be the change you wish to see in the world. This conference encouraged me to feel through my local participation in the YSC, I can at least be a small beacon of hope and change for other young survivors.

Race for the Cure Miami 2007

2007-10-25T00:49:00.000-05:00

I participated again this year in the Susan G. Komen Race for the Cure in downtown Miami which was held this past Saturday, October 20th. Last year was the first time I had attended the annual event -- four weeks after learning of my own breast cancer diagnosis. My father did the entire 5k walk with me last year without complaining at all. He didn't even complain that he got no breakfast before we left the house at 6:30 in the morning. (That's how I KNEW this man loved me! Ha, ha.)

Each year, it is such a powerful experience to be among so many thousands of people who come out for the event! The Survivor Ceremony above all is the most emotional part of the day. It is bittersweet to see and stand among so many survivors ... but then it reduces you to such tears to know that so many women have been afflicted with this disease at all, and how unspeakable it is that so many have also lost their brave fight to this beast.

I am almost ashamed to say that last October was the first time I had truly ever noticed all the pink ribbons and advertisements about breast cancer awareness. I thought to myself that maybe it had suddenly become so much more commercialized in 2006. (Now I conclude it's sort of like until you purchase that bright yellow VW bug for your own driving pleasure, you never notice any other bright yellow VW bugs on the road. Unless, of course, it's a Truly Nolen vehicle, but then how could you miss the mouse ears and tail that go along with it?) It should come as no surprise that breast cancer awareness is a cause that will forever be a meaningful part of my life now. Accordingly, I was determined this year to help raise money for the Susan G. Komen Foundation which is the world's largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures. Thanks to events like the Komen Race for the Cure, nearly $1 billion has been invested to fulfill its promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world.

I was so genuinely touched and overwhelmed by the kind, generous donations so many of my family and friends made to my personal fundraising goal of $1,500.00 this year. In fact, I well exceeded the goal and raised close to $2,500.00. Thank you again to all of you wonderful earth angels who joined me in the effort to move towards eradicating this dreadful disease!

It was also a source of great personal pride that I was able to actually RUN the entire 5k (or 3.1 mile) race this year! Yes, ME! The one who always says, "There's only ONE thing I think about the entire time I run. That is 'When can I stop????'" But I did it, after training on outdoor runs with my cousin, Tanya, for approximately 4 weeks. I finally figured out how to run without being totally exhausted. I just had to slooooooowwwwww down my pace to damn near a shuffling of my feet. I started out training at a 17-minute mile pace, and now I can run at something closer to 13 minutes per mile. Ultimately, I completed the race in 48 minutes, but at least 3-5 minutes of that time could be shaved off because of how difficult it was to get around the crowd of people at the start line who were walking. My friends, Andrea, Allison, and Nell, as well as my cousin, Tanya, kept me motivated during the run. I literally almost quit coming back over the uphill drawbridge near the end of the race, but then I thought of all the names I was wearing on my back and stayed motivated to run until the end.

It was with tremendous sadness that just days before this year's race, I learned I would have another name to honor and add to my memoriam list of women who have lost their courageous battle with breast cancer. My dear friend/former boyfriend, Glenn ("Gumby") Harris, sadly lost his mother, Gloria Harris, on October 3, 2007. I have known Gumby for close to 20 years and have always had great affection for his family, particularly his mother. She was such a kind, gentle, beautiful soul ... not to mention how incredibly pretty she was. It brought me to such tears when I first learned the news and I even type through tears now. She is a new angel to watch over us all now. My love to her and my wish for peace to her entire family.

My thought, as I ran this year with all those names on my back, was that it is best to honor the memory and legacy of all those who have lost their lives by living well. But as my friend and YSC sister, Julie, pointed out, "It is still just too many names."

Janice, Nell, and me before the race.

My girlfriend, Renee, who organized our team this year.

We raised $5,937.00 as a team!

Renee is a franchise owner of "The Art of Exotic Dancing for Women -- A New You" and was a proud sponsor of this Komen event.

My cousin and running buddy, Tanya.

Allison, Andrea, me, and Tanya.

(These sweet chicas stuck to running with me until the very end.)

My younger cousin, Alyssa, and her girlfriend, Tiffany.

HOT and WORN OUT after the race!

WE DID IT!!!!

(Andy from FSU law school hydrating behind us.)

My sorority sister and fellow BC survivor, Bery, with me.

Allison, Lilliana, Marlon (his wife, Carla, is another survivor), and me.

Me, Julie (from my YSC support group), her sister, Claire, and their two friends.

Julie has the BEST reconstruction I have ever seen!

(I will be thrilled if my hooters wind up looking that good. Damn!)

Julie organized her team after I had already committed to another,

but all the money goes to the same great cause in the end.

Sweat or no sweat, I couldn't believe Allison was having chills in 90 degree weather!

The highlight of my day (everyday) ... FOOD!!!!

Breakfast at News Cafe on South Beach after the race.

My Fifteen Minutes of Fame

2007-10-05T15:55:00.001-05:00

Do you remember I said early on that I was going to be a star when I got finished with my chemo treatments? Well, it's official. I landed my television appearance today!

Here's the skinny. I was recently interviewed by a syndicated columnist and humorous relationship expert, Lisa Daily, for an article she was writing for LifetimeTV.com. Since the month of October is typically all about breast cancer awareness, the topic of the article was Dating with Breast Cancer. This all came about when my friend, Jackie, a publicist, forwarded me an e-mail query from Lisa Daily seeking interviews with women who dated during their breast cancer treatments. If there are two things I know a great deal about, it's breast cancer and DATING! I wound up speaking with Lisa over the phone for nearly half an hour, entertaining her with my "Carrie Bradshaw" (Sex in the City) dating experiences. Everyone who knows me knows I am a fairly open book, and I'm willing to share most things about my life -- good or bad -- if I feel it will have some relevance or positive significance for someone else. So I opened up to Lisa and at the end of the conversation, she thanked me for being so honest and assured me she would be "delicate" with me in the short article. This actually gave me a little pause because while our interview was very conversational, I wondered if perhaps I had revealed too much. I really don't mind putting myself out there when I talk of my experiences, but I would never want to cause anyone (particularly someone I may have dated and cared about meaningfully at one time) any embarrassment. I'll come back to this point.

In conjunction with the article, Lisa asked if I would be willing to come to Tampa to tape a television appearance for a morning talk show that she appears on each Friday. So that's what I did today! The show is called "Daytime" and it has two hosts, Dave and Cyndi ... very nice people who I met during the taping. The show also has an entertainment host who was bouncing around like a little firecracker! She was soooo full of energy and I kept staring at her because she looked sooooo familiar to me. Turns out, she was Lindsay MacDonald who used to be on my all-time favorite MTV show, "The Real World (Seattle)." (I think I finally came to terms with the idea that I was too old to keep watching "The Real World" and I stopped three years ago with the Philadelphia season.) Everyone was really great and made me feel right at home. In fact, the set literally had the feel of being in someone's home ... like sitting around the kitchen table.

The taping itself only lasted for perhaps a 5-6 minute segment. I was asked a few general questions by the hosts regarding my dating experiences, and then Lisa was also there to lend her comments and advice. I think it went very well from the bits and pieces that I can clearly remember. At least, that's what I was told. I was very nervous throughout, so much of the interview seemed like an out of body experience. I probably would not have been as anxious if I had not been told just moments before the taping that it was going to air in 10 small markets (e.g., Jacksonville, FL; Raleigh, NC; Macon, GA; etc.). I had initially thought it would only air locally in Tampa, which was plenty big to me!

When I got back home, I found the article Lisa wrote online. She had mentioned to me that she was limited to 500 words, so much of what I said had to be condensed and I wasn't the only individual she interviewed. While the quotes in the article do accurately reflect things I said, I was admittedly a little surprised by the context. I think the way my dating interactions were characterized in the article sound much worse in print than they ever were in reality. I debated about whether I would even post about this on my blog. But since it's the first web link that comes up under a google search of my name now, I might as well. LOL.

Here are a few disclaimers though. First, I never viewed any of my dating experiences as being "horrible" ... they just simply were what they were, and like everything else in my life, I just try to keep things moving forward. Second, I never dated or went out with the guy who fell asleep or feigned being asleep on the phone, after I worked up enough nerve to tell him about my mastectomy. He was so insignificant in the scheme of things, but I did find the story pretty humorous which is the only reason I mentioned it to Lisa at all. Lastly, I want to say that I feel pretty badly the first guy mentioned in the article found and read it by chance. He feels the article wrongly portrays him as having abandoned a relationship with me because of my surgery. We ultimately had a lengthy discussion about it, and I apologized for it sounding much more insulting than was actually the case. We did not end our romance because he wasn't able to handle what I was going through. In fact, we dated all throughout my chemo treatments and he was never put off by any of it. It's just that sometime during my recovery from surgery, it became evident to me that a romance between us was not going to work because of the emotional state of mind each of us was experiencing in our respective lives. Moreover, we never had an express conversation about breaking up, but to me, it was implicit in the fact that virtually no efforts were made to see eachother. So while it is true that I have not actually seen him since the day after my surgery, we have spoken many times by phone and remain friendly. As he puts it, A had nothing to do with B. And he's right. So I'm sorry if the article seems to imply that he was a coward about my cancer journey. The truth, according to him, is something more akin to the fact that he was concerned if we continued to spend time together, it may have generated mixed signals or may have been misleading given our history. I do understand his point of view, but we are different people and obviously handle our struggles very differently. Like I told him, perception is reality. I think we may still have a minor difference of opinion in terms of how to be a good friend when a romance can't continue to flourish. But to be clear, I do not think him a bad person or condemn him in any way.

How appropriate!

2007-09-28T17:02:00.001-05:00

ONE YEAR CANCERVERSARY!

2007-09-13T15:44:00.000-05:00

Today marks my one year of survivorship. I almost can't believe it was a year ago today that I learned I had breast cancer. And what a year it has been!

I've lost
my breasts
my hair
a few friends along the way
beauty
mental clarity
so much

I've gained
humility
compassion
weight
tremendous respect for my parents
true knowledge of who my friends are
new friends
a sisterhood with other survivors
scars
a realization of how resilient I truly am
perspective

I have also decided that I am not going to do radiation afterall. After much thought and discussion with ALL of my doctors, I am comfortable with this decision. My half hour conversation with Dr. DerHagopian two nights ago gave me a great deal of comfort and peace. He wasn't the least bit surprised that 2 rads oncologists would recommend radiation, even though they wouldn't commit to a strong recommendation for it. His comment was, "Look, radiation oncologists will want to give you radiation just as medical oncologists will want to give you chemo and we surgeons will want to open you up. We are all biased by our respective trades." I told him I was struggling to understand why I should be in any more of a "grey area" for radiation than people who have positive lymph nodes but are still not subject to rads. The reason I was given for being in this grey area is because I apparently had 4 areas of foci for lymphatic invasion seen where the primary tumors were. Dr. D explained however that none of these areas were seen distantly from the primary site and my clean margins are very promising. He said he did not "slice through" any areas where cancer cells appeared close to the edges. He also said the only way one could have positive lymph nodes in the first place is if one ALSO had lymphatic invasion at some point. In other words, it is ONLY through the lymphatic channels cancer cells can travel to reach and deposit in the lymph nodes. Therefore, if the radiation guidelines call for at least 4 positive lymph nodes to require radiation and I did NOT even have a positive sentinel node, I should be fine.

Dr. D also pointed out some other cons with radiation that I had not considered. For one, there is always radiation scatter to the heart which could pose risks of cardiac damage. (Recall that in my case the tumors were in my left breast close to the chest wall area.) Moreover, I am getting Herceptin infusions once every 3 weeks which also carries cardiac toxicity risks although this would only be temporary. It is unknown what permanent effects radiation scatter may have on women who are also getting Herceptin at the same time. Radiation also minimally increases the chances of developing pneumonitis in the lungs. In fact, Dr. Samuels, the rads oncologist I consulted, disclosed that I would most certainly be subject to developing scar tissue in 10% of my lung tissue as a result of radiation. It would show up on any future x-rays, but that it would not impair my breathing in any way. Dr. D also discussed how rads can cause an increased risk of arm edema or lymphedema -- an accumulation of lymph fluid in the soft tissues of the arm which can lead to substantial functional impairment. Finally, there would be the effect on my reconstruction, possibly impeding a good cosmetic result. Like I said before, the odds of a local recurrence in my particular instance are small and I am comfortable taking this low level risk, especially in view of the hormonal treatment I am continuing (which is most important for the type of breast cancer I had).

I recognize all of this medical lingo can be rather confusing. I know for a fact that it confuses the hell out of my poor father ... he just wants the bottomline. After discussing my consultations with him earlier this week, he attempted to boil it down to simple terms he could understand. He asked me pointedly if having breast cancer and then not doing radiation is an automatic death sentence. I tried to assure him that there are LOTS of breast cancer survivors who battled this in the 1970's when the types of treatment available today weren't even around. I provided the example of Betty Ford who I know had a mastectomy, but I'm not sure if her treatment plan included anything else. The woman is close to 90 years old and is still going strong. My dad said, "Yes, but that's only ONE example."

So Daddy, here is an extensive list of other famous breast cancer survivors ... just for you! Someone posted this in a thread at YSC. These are suvivors who are still alive. It is sad to see so many women who have had to stare down this dreadful beast of a disease, but nevertheless encouraging to see a long list of old time survivors! Please note you may also see some men who appear on this list. It is no mistake ... no typos. Yes, it's true that even MEN are susceptible to developing breast cancer. The risk is relatively low, but it does still occur.

Elizabeth Agassi, mother of American tennis champion Andre Agassi
Tami Agassi, author and sister of American tennis champion Andre Agassi
Barbara Allen, American politician, Kansas State Senator
Anastacia, American popular singer
Cheryl Aranda, American singer/songwriter
Dame Eileen Atkins, esteemed British actress
Carol Martineau Baldwin, mother of American actors Daniel, Stephen, William, and Alec Baldwin, and foundress of the Carol M. Baldwin Breast Care Center of the University Hospital and Medical Center at Stony Brook
Kaye Ballard, American actress
Brigitte Bardot, former French actress and current animal rights activist
Allyce Beasley, American TV/comedic actress
Jami Bernard, American author and film critic for the New York Daily News
Aisha Bicknell, daughter of British actress Rita Tushingham
Shirley Temple Black, famous Oscar-winning American former child star & former U.S. Ambassador to Ghana and Czechoslovakia
Raelene Boyle, Australian athlete
Rhona Brankin, British politician, Member of the Scottish Parliament
Eileen Brennan, American actress
Nancy Brinker, American founder of the Susan G. Komen for the Cure
Edward Brooke, African-American former U.S. Senator
Edna Campbell, African-American professional basketball star
Robin Carnahan, American politician, Missouri Secretary of State
Diahann Carroll, African-American actress, singer
Pattie Daly Caruso, mother of American television personality Carson Daly
Beth Nielsen Chapman, American singer-songwriter
Mary Jo Codey, former First Lady of New Jersey, school teacher and wife of former Governor of New Jersey Richard Codey
Sheryl Crow, American singer/musician
Fran Dalessandro, a 2003 Cancer Research and Treatment Fund Survivors Hall of Fame inductee
Margaret Daley, wife of American politician Chicago, Illinois Mayor Richard M. Daley
Marina Dalglish, founder of the Marina Dalglish Appeal and wife of former British international football player Kenny Dalglish
Jo Ann Davis, U.S. Representative from the State of Virginia
Ruby Dee, African-American actress
Betty DeGeneres, American author and mother of American actress and TV host Ellen DeGeneres
Elisabeth DelPadre, mother of The View TV talk show host Elisabeth Hasselbeck; Hasselbeck's two grandmothers and one aunt are also breast cancer survivors
Simone de Oliveira, Portuguese actress/singer
Diana Dill, British-American actress; ex-wife of American actor Kirk Douglas; mother of American actor Michael Douglas
Kelly Jo Dowd, American mother of 13-year-old American golf protege, Dakoda Dowd; cancer has metastasized
Susan Duncan, Australian author
Elizabeth Anania Edwards, American lawyer; wife of former U.S. Senator from North Carolina John Edwards
Julie Ege, Norwegian actress
Barbara Ehrenreich, American author/ethicist
Jill Eikenberry, American actress and wife of American actor Michael Tucker
Linda Ellerbee, American TV journalist
Melissa Etheridge, American singer and prominent lesbian

Marianne Faithfull, British singer from the 1960s
Edie Falco, American stage and TV actress
Deanna Favre, creator of a breast cancer foundation and wife of American football quarterback Brett Favre
Caitlin Flanagan, American magazine writer, editor and book author
Peggy Fleming, American Olympic champion figure skater
Betty Ford, former U.S. First Lady
Wenche Foss, Norwegian actress
Maria Friedman, British actress
France Gall, French singer and wife of late French composer Michel Berger
Nikki Giovanni, African-American professor and poet
Liza Goddard, British actress
Ernie Green, African-American former professional Cleveland Browns football player
Christine Gregoire, American politician; current Governor of Washington State
Nanci Griffith, American singer/songwriter
Lucy Grijalva, writer of romance novels
Shelly Hamlin, American professional golfer
Jane Hamsher, American film producer, author and liberal blogger
Sheila Hancock, British actress and wife of the late British actor John Thaw
Julie Harris, legendary American stage actress
Heidi Heitkamp, North Dakota politician and lawyer
Lydia Clarke Heston, former actress; wife of American actor Charlton Heston
Darby Hickson, graphics designer; 2nd wife of Deputy White House Chief of Staff Karl Rove
Amy Pasternack Hughes, mother of Sarah Hughes and Emily Hughes
Marsha Hunt, African-American singer, novelist, breast cancer activist and mother of Mick Jagger's first child, Karis Jagger
Laura Ingraham, American radio host/pundit
Kate Jackson, American actress
Kim Jagd, American assistant coach of the UCLA Bruins women's volleyball team and former UCLA (University of California, Los Angeles) volleyball player
Ann Jillian, American actress, entertainer
Betsey Johnson, American fashion designer
Melanie Johnson, former British Member of Parliament
Jennifer Jones, American Oscar-winning star actress
Susan Ryan Jordan, mother of American actress Meg Ryan; Jordan is a 27-year survivor
Barbara Joss, Australian writer
Susan Kadis, Canadian politician in the Canadian House of Commons
Phyllis Kagan, mother of CNN television news show host Daryn Kagan
Sonia Kashuk, makeup artist/cosmetics businesswoman (as per October 30, 2006 People Magazine); had lumpectomy and later decided on a prophylactic bilateral mastectomy
Joan Kennedy, former wife of Senator Edward M. Kennedy (Massachusetts); had surgery and is continuing treatment
Linda Kerr, mother of American golfer Cristie Kerr who plays on the LPGA Tour
Janelle Kidman, mother of Australian actress Nicole Kidman
Becky Krimstein, American video and film producer and breast cancer activist
Barbara Krueger, mother of American TV personality Kandace Krueger
RuthAnn Lobo, American author and mother of American professional basketball star Rebecca Lobo
Sondra Locke, American actress
Adamari López, Puerto Rican actress; diagnosed in April 2005
Geralyn Lucas, American journalist, television producer, and writer
Jennifer Lyon, American contestant on the CBS reality television series Survivor: Palau
Marisa Acocella Marchetto, American writer, cartoonist and memoirist
Matuschka, a/k/a Joanne Matuschka, American fine art photographer and breast cancer activist
Rue McClanahan, American TV/stage actress
Doris McCormack, mother of Canadian actor Eric McCormack
Jane McGrath, wife of Australian cricket champion Glenn McGrath
Judy Eason McIntyre, African-American politician - Oklahoma State Senator
Amanda Mealing, British actress
Tucker L. Melancon, male United States District Judge, Western District of Louisiana, 5th Circuit since 1994
Wendy Mesley, Canadian host and reporter for CBC Television
Kylie Minogue, Australian singer, actress
Hala Moddelmog, American president and CEO of Susan G. Komen for the Cure
Diana Moran, British model, fitness expert and journalist
Shelley Morrison, American actress; currently battling breast cancer, also battled lung cancer
Sharon Murphy, mother of American actress Brittany Murphy
Jenni Murray, British BBC presenter
Janet Napolitano, American politician, Governor of Arizona
Kitten Natividad, Mexican actress,
Jocelyn Newman, former Senator from the Australian Parliament for Tasmania
Phyllis Newman, American TV and Broadway actress/singer; widow of American playwright Adolph Green
Olivia Newton-John, UK/Australian singer/actress
Jerri Nielsen, American physician who famously treated herself for breast cancer while stuck in the South Pole after discovering a lump on her breast
Cynthia Nixon, American stage and TV actress who played Miranda on "Sex and the City"
Linda Nolan, Irish-born singer, actress and former member of the 1970s pop band, The Nolans
Sandra Day O'Connor, first female U.S. Supreme Court Justice
Claudia Price, inflammatory breast cancer survivor and mother of African-American R&B and soul singer Kelly Price
Nancy Priddy, mother of American actress Christina Applegate
Dina Rabinovitch, British journalist and writer
Judy Rankin, American Hall of Fame professional golfer
Betsy Rawls, American Hall of Fame professional golfer
Claire Rayner, British journalist
Nancy Reagan, former U.S. First Lady
Lynn Redgrave, Oscar nominated British-American actress
M. Jodi Rell, American politician, Governor of Connecticut
Kathleen Reynolds, wife of former Irish taoiseach, Albert Reynolds
Wendy Richard, British actress
Cokie Roberts, American journalist, ABC News
Dede Robertson, wife of American Christian evangelist Pat Robertson
Robin Robertson, American journalist, Good Morning America
Margaretta Fitler Murphy Rockefeller a/k/a Happy Rockefeller, American socialite and wife of the late former N.Y. Governor and U.S. Vice President Nelson Rockefeller
Betty Rollin, American author, retired TV correspondent
Richard Roundtree, male African-American actor
Linda Saarloos, mother of Oakland Athletics baseball pitcher, Kirk Saarloos
Lynn Sherr, American writer and TV correspondent for ABC News
Debra Shipley, British politician - Labour Party member of Parliament
Claire Shulman, former Borough President of Queens, New York City
M. Kay Siblani, Arab-American co-founder and executive editor of The Arab American News
Jean Simmons, British-born U.S. actress
Carly Simon, American singer
Jaclyn Smith, American actress, businesswoman
Suzanne Somers, American actress
Stephanie Spielman, wife of American NFL linebacker Chris Spielman
Karin Stanford, African-American professor and writer
Janet Stark, mother of American former tennis champion Jonathan Stark
Koo Stark, American soft-porn actress who had a controversial relationship with Prince Andrew of the United Kingdom
Gloria Steinem, American feminist activist; stepmother of British actor Christian Bale
Helen Stewart, wife of former British Formula One racing champion Jackie Stewart
Lynne Stewart, American lawyer/activist
Gloria Stuart, legendary American actress
Sarah Susanka, English architect and author
Ruth Ann Swenson, American soprano opera star
Jane Tomlinson, British cancer fundraiser 1st September 2006, completed 4200 mile cycle journey across the USA
Jools Topp, New Zealand folk singer, one of the Topp Twins
Linda Tripp, former U.S. Government federal employee and Monica Lewinsky's former confidante
Dawn Upshaw, American soprano diva
Ann Veneman, former head of the U.S. Dept. of Agriculture
Suzyn Waldman, American sports commentator
Marcia Wallace, American comedic actress
Jenna Welch, mother of American First Lady Laura Bush
Mickey Wright, American Hall of Fame professional golfer
Kay Yow, American head coach of the women's basketball team at North Carolina State University

Got naked for the 2nd rads oncologist today

2007-09-10T18:31:00.000-05:00

Well, not ALL the way naked. It's all become so clinical now the way I remove my clothes to show people my breasts (and I don't mean just for my doctors). I have a few pictures on my digital camera that I took of my final tissue expansion approximately a month ago. I keep forgetting to delete them now that I've downloaded them to a safe file on my personal computer. So everytime friends pick up my camera to click through my photos, I run the risk of having them view shots, from all different angles, of my naked torso. It's interesting that my breasts no longer feel like a true part of me. Perhaps that's why I think nothing of having people view them or feel them for that matter. In fact, I allowed my next door neighbor to touch them last weekend when I ran into her outside and she inquired if I had been ill recently. All those flowers that were being delivered to her door while I may have been away from home must have given her some clue. I flash my boobs now for anyone who's curious, but I still guard the photos of my old boobs as if they are sacred. Well, they are ... to me. ;-)

Today I consulted with Dr. Judith Samuels, a radiation oncologist at Mount Sinai Hospital in Miami. She was actually my second opinion, following my first consult with Dr. Ana Botero at Memorial Regional Hospital in Hollywood about two weeks ago. In a nutshell, Dr. Botero said that although there is no ONE compelling factor in my case to warrant radiation, she would recommend that I do it because of my age (I'm young, have my whole life ahead of me, ... yadda, yadda, yadda) and it would just be one more weapon in my arsenal to mitigate the chances of a local recurrence to the breast. She did agree that I don't fall within the normal guidelines for radiation. In other words, I did not have a tumor greater than 5 cm and I did not have more than 4 positive lymph nodes. Moreover, she agreed that I have been "extremely aggressive" already -- insofar as I have done chemo, had a mastectomy, and continue to treat with Herceptin infusions (until Feb. 2008) and Tamoxifen pills for the next few years.

I inquired where she would radiate if all the breast tissue was now gone. She said she would do a standard treatment, focusing the radiation beams to the chestwall, axillary (under the armpit), subclavical (near the collarbone) areas, as well as the site of the mastectomy incisions since these are the areas where a local recurrence would typically occur. She seemed convincing enough when she said that the lower level dose of radiation I would endure over a 5 week period would not significantly interfere with my reconstruction. Dr. Botero said she and her team do an excellent job of monitoring the skin and could provide for a few days off if it appeared the skin was beginning to burn or blister. She said I might be prone to some tightness of the skin, but that I would not be at absolute risk for capsular contracture (where the scar or capsule around an implant begins to tighten causing severe pain). I raised an eyebrow to this however. I know from reading quite a few anecdotal posts on my online support group that most women who were subject to radiation following mastectomy often times had to take muscle from their back (a lat flap) to cover their implant. Dr. Botero seemed puzzled when I brought this to her attention, almost as if she had never heard of a latissimus dorsi flap procedure. Hmm? Red flag there.

Dr. Botero was very thorough and patient with her time, spending a little over an hour discussing my case and all the factors she considered. The problem, she said (as did Dr. Samuels today), is there is no good, RECENT data concerning women who have chosen to forego radiation for lymphatic invasion who are ALSO doing systemic treatments such as Herceptin and Tamoxifen. The current radiation guidelines stem from a retrospective study conducted in 2001, using data on women during the 1990's before Herceptin (a wonder drug for reducing the risk of recurrence) was even around. Dr. Botero mentioned that although the current guidelines use 5 cm as a benchmark, she is more inclined to use 3 cm as a determinant. Although my tumor was no greater than 3 cm, the entire area involved before chemo including DCIS (i.e., precancerous lesions) was 4.2 cm as confirmed by an early MRI. She will not concern herself with how much the tumor may have shrunk during chemo; she is only concerned with what existed in the first place. For all these reasons, Dr. Botero said she would recommend radiation, but she would not STRONGLY recommend it. It is ultimately up to me.

I chose to see Dr. Samuels today because I had heard so many wonderful things about her -- that she is bright, thorough, and sensitive to a woman's reconstruction concerns. Furthermore, she is part of a comprehensive cancer center where most cases are brought before an entire tumor board and I would have the added benefit of hearing the opinions of any other doctors who differed from her own. Dr. Samuels is a friendly, compassionate, supportive woman who seemed to understand how much I've been struggling with this issue. She reviewed my entire medical file and films before opining that there is nothing about my situation that makes a compelling case for radiation. However, she feels that my age and the evidence of lymphatic invasion in the breast tissue that was removed makes my case a bit worrisome.

Dr. Samuels was also respectful of Dr. Botero's overall assessment, but stated that she wouldn't be as "cavalier" regarding the potential effects radiation could yield. For instance, she said even in women who have done breast augmentation for purely cosmetic reasons, they stand a 50% chance of capsular contraction. Most assuredly, radiation will increase this risk somewhat. Also, she does believe I would have some noticeable difference in appearance between the radiated side and the non-radiated side. Furthermore, in Asian and black women, the skin has a greater chance of appearing permanently darker on the radiated side ... most likely the result of greater melanin. She did not sugarcoat this aspect, although she said people can differ as to what appears to look good or not. There's no question that I want to do everything to save my life, but certain things I feel have to be weighted against other aspects that are still important to me at this stage of my life. I am a single girl and I make no apologies for having these cosmetic concerns in view of everything else I have already done and put at risk in an effort to be aggressive about this.

To help me make a better informed decision, Dr. Samuels is going to contact the pathologist who reviewed my breast tissue slides following surgery to determine how extensive the lymphatic invasion actually was. Apparently, there are roughly 19 slides that were reviewed. Dr. Samuels said if there were just a few cells contained on 1 slide vs. all 19, that may help give me some peace of mind about my almost made up decision to forego rads. She feels as I do that Tamoxifen and Herceptin are 2 very aggressive, systemic treatments that would likely take care of any remaining cancer cells that could be looming in the subcutaneous tissue of my breast. It's all a crap shoot (pun intended), but I feel the odds are more or less in my overall favor. I am going with my gut on this one, but in the meantime, I await Dr. Samuel's call the end of this week.

SIDEBAR: I e-mailed my surgeon, Dr. DerHagopian, after my first consultation just to keep him apprised of the situation. He usually picks up the phone to give me feedback, since he's someone more akin to Two Finger Tony when he types. I guess it may have been too late to call me, so this is what he wrote back, "i prob. would not radiate, bob d." Now I have great respect for him and his opinions, but I couldn't help chuckling to myself about what HE would do with his breasts.

Talked down off the ledge

2007-08-20T09:49:00.000-05:00

Okay, so to update ... I am doing okay and feeling much, much better about my lymphovascular invasion (LVI) scare that could potentially warrant radiation therapy. I think what was most upsetting to me last week was just how news I'm not expecting sends me into so much of a tailspin. I HATE the feeling ... it's a complete mindf*ck ... as if contending with the physical aspects of treatment haven't been enough. It's an exhausting mental exercise.

Anyways, my support group members at YSC are phenomenal. I seriously don't know where I would be in this experience without them. I posted what happened last Thursday after seeing my oncologist. Besides all the big (((((HUGS))))) and words of compassion and support, I found some relief in the encouraging words of the following women:

Laura -- Camille, Repeat after me: "calm blue ocean... calm blue ocean... calm blue ocean..."OK. LVI. Very common. Yes, it's better not to have it, but I'd guess that most tumors over 2cm have LVI - at least that's what I've seen on these boards. I can think of maybe one or two women who didn't have it, but pretty much everyone else did - including me.I'd be shocked if your onc thinks you should have radiation because of LVI. The entire reason to do chemo and tamoxifen is for this very thing - tumors shed into the blood and lymph channels. The thing to keep remembering is that try as they might, those cells were UNABLE to set up shop and grow in your lymph nodes. Probably it's because either they weren't programmed to spread, or your immune system recognized a rogue breast cell and killed them. Nodal status, not LVI, is still the most important prognostic indicator. I had LVI and two good sized tumors and no one ever suggested I do radiation. My onc actually said that he wouldn't know what to radiate. The chemo and endocrine therapy will do their job. You have nothing to radiate.

Pam -- I echo what Laura said...radiation is not necessary. I had a positive node and didn't get radiation...I had 3 opinions on it. Don't think being "aggressive" means doing any everything that's available. All of these treatments have potential long-term consequences, so you must weigh the good and the bad. My uncle died as a result of radiation poisoning, so it wasn't something I was going to do "just in case". I think you're fine without it and you should look forward to your reconstruction in a few months!

Tracy -- Ditto Laura and Pam....LVI does not radiation make....unless he plans on putting your whole body in a microwave..lol. Chemo did its job. Radiation is for local stuff. Sorry you had such a blow. I wouldn't mess with the recon. Love, Tracy

Kerri -- Camille, Here are (((hugs))) for you. I just got through rads, and while I'm not sure what the best road to take may be for you, here is a reassurance that rads are so much easier than chemo. Not easy per say. Just easier than Chemo. My feeling was to go the aggressive route, since I am young (probably not as young as some of you, but still...), and I was willing to do whatever it took to give me the best chance in survival. It's different for everyone, but I did want you to know that while rads are a pain, your skin gets difficult, and it's tiring, in the end if it's the recommendation, it's worth every day of "pain in the ass" that rads may take. Also a quick note. I had silicone implants before BC, and rads have not damaged them (thus far of course).

Julie -- Camille, gosh girl, this sucks! I imagine you feel very disappointed . . . and a little scared. Keep in mind, you had no positive lymph nodes. That is GREAT!!!! Well, you know I am no doc but my inclination would be like yours -- what would regional therapy (rads) do to help vascular invasion? It would seem that systemic therapy (chemo, bio and hormone therapy) would be the treatment for that. My sense is NO rads. The radiology onc. is the final arbiter. If he/she says yes to rads, get a second opinion. Just in case you do need a second opinion, there is a great radiology oncologist at Mt. Sinai that I saw -- Dr. Judith Samuels. She is very bright and thorough, yet also sensitive to a woman's desire to preserve her reconstruction. Every case is presented at a weekly oncology meeting of all the docs at the comprehensive cancer center so you have the added benefit that everyone discusses your case and provides input. She will let you know if any docs have different opinions than hers.

Marcelas -- Camille, I know what you mean about being sent into a tailspin with new information. It seems that's the way this process goes. I am sorry for you. I had mulitfocal IDC (ranging from 3mm to 9mm - at least 4 tumors), DCIS and lymphovascular invasion and 1 positive lymph node and I was told by 2 different oncologists that radiation was not necessary for me. That said, every case is different. You need to get another opinion and go from there. Good luck with your decision.

So I decided I will arrange an appointment with the radiation oncologist my med onc recommended, and if necessary (i.e., I don't hear what I want to hear ... hee, hee), I will set up another consultation with the one Julie recommended at Mt. Sinai. I am hopeful based on what so many of these ladies have said that my situation will not warrant radiation. And if it does, like everything else, I'll deal with it. It does make a lot of sense to me that they wouldn't have any idea about where to radiate ... unless, like Tracy said, they put me in a microwave. Ha, ha.

"Calm blue ocean ... calm blue ocean ... calm blue ocean."

MINDF*CK

2007-08-16T19:04:00.000-05:00

I saw my oncologist today for routine follow-up and she said she would like me to consult with a radiation oncologist to discuss some findings on my final pathology report. Apparently, the final report indicates the breast tissue removed during my mastectomy showed evidence of possible lymphovascular invasion (LVI) ... my tumor had characteristics of cells trying to escape through the small blood vessels in the breast tissue.

My breast surgeon was very reassuring about this when I saw him a couple weeks ago, stating that he got clear margins and my sentinel node tested negative. Under the normal protocols, he said I shouldn't be a candidate for radiation because the two tumors I had side by side were less than 5 cm and I didn't have lymphnode involvement (although only the one sentinel node was taken). Usually, you need more than 4 positive lymphnodes to warrant radiation therapy. Nevertheless, he still urged me to discuss the LVI in the pathology report with my medical oncologist to be sure.

My onc today said that's it's true I don't fall within the normal guidelines for radiation, but they just don't know enough to say what to do for LVI ... in fact, there is no protocol ... but I'm "young," yadda, yadda, yadda. She said I could still have LVI without ever having positive lymphnodes. So obviously, if I want to do EVERYTHING to be aggressive, I guess I should entertain radiation ... even though I had a mastectomy, I did chemo, I am doing biologic therapy (Herceptin), and I am doing hormonal therapy (Tamoxifen).

But if I have LVI, how is radiation (regional therapy to the breast area) going to help microscopic cancer cells that may have already escaped through the blood vessels to distant areas outside the breast (like to the lungs, liver, bones, or the brain)?? Isn't this what chemo, Herceptin, and Tamoxifen (systemic therapy methods) are for?? Isn't radiation only intended to stop cancer cells in their tracks if there are any left behind in the breast? I just wonder what the percentage benefit would actually be if most of my breast tissue is already gone. Risk vs. benefit ... how did my life come down to this?

Maybe I'm just in denial, being naive, vain, reckless ... fill in the blanks ... but my honest feelings (today) are that I don't want to mess with my present recon. (Radiation will likely damage/tighten the remaining muscle and tissue in my breast, thereby possibly impeding a good result for implants.) One of the upsides to me about opting for the mastectomy ... if you can believe there IS an upside ... is that I was going to be able to avoid radiation -- something the oncology protocols would have MANDATED if I had only had a lumpectomy.

I just got the good news that my exchange surgery for implants is scheduled for Thanksgiving time and I was feeling soooo good about that. Now I feel like the rug is being pulled from under me again. This whole emotional rollercoaster is really too much at times. It all feels like such a crap shoot because of this beast's unpredictable nature. Breast cancer is predictably unpredictable. I just wish someone could look in their crystal ball and tell me what's the right thing to do, promising me I will never, ever have to worry about cancer again. I'm so tired of this ... really, really tired.

(Now here come the tears.) (:-(

Today's Funny

2007-08-14T12:24:00.001-05:00

You know, this reminds me of the time my 5th grade class incubated and hatched baby chicks. At that tender age of 10, I didn't make the connection that eggs could actually become baby chickens. We eventually learned through this experiment that the gooey, white spot on the yolk is where an embryo can begin to develop if the egg has been fertilized and incubated. Uh, I stopped eating eggs COLD TURKEY! It was THREE whole years before I suddenly began craving scrambled eggs with cheese again. So now, I just try not to think about it. Denial is the greatest coping mechanism for any issue. Just my two cents. (smile)

Thanksgiving comes early!!!!

2007-08-03T14:53:00.000-05:00

New boobs are scheduled for Monday, November 19th ... the week of Thanksgiving! I am almost jumping out of my skin with excitement!!!!!

Today, I met with Dr. Marshall, my plastic surgeon. It's the first time I've seen that chic since my surgery in May. Whoa! Yes, she is just that busy. I'm okay with that, however, because I know how well-respected she is and what a great job she has done and will continue to do for me down the road. She told me Dr. DerHagopian, my breast surgeon, had called her about getting me an earlier date for surgery. I believe now she would have accomodated me even without his input. She's such a great lady -- very compassionate, gracious, and KNOWS HER STUFF!

I brought numerous pictures with me to show her how I'd like to look with the implants. I do not want stripper boobs, but I do wish to fill out my clothes as nicely as I did before I had breast cancer. To facilitate this discussion, I showed her perhaps 15 (or so) pictures from various Playboy magazines, Victoria's Secret catalogs, and even some pics I printed from the reconstruction thread on my online support group message board. I showed her examples of what I liked and what I didn't like. I want cleavage, but not with the girlz too close together and not too far apart. I want good projection, but I don't want them sitting up toward my neck either. Given this exchange, Dr. Marshall has a fairly good idea of what I want now, even though I trust her judgment. She believes she will likely use high profile, high projection silicone implants with around 500 cc's of cohesive memory gel. The memory gel has a "gummy bear" consistency so that even in the unlikely event of rupture, the silicone will stay in place rather than leak anywhere into the body cavity. (Silicone is what most people prefer because it's much more natural feeling than saline implants. Also, silicone no longer has the bad rap that it did in the 1980's when all those baseless class action suits were filed. Ultimately, plaintiffs had a very difficult time proving any toxic effects produced by the presence of implants and those lawsuits against the manufacturers went away.)

Dr. Marshall also mentioned she will do a little liposuction on a small pocket of fatty tissue I have on the upper part of my right breast at the time of surgery. She said that will just even things out with my other side. I wouldn't have even noticed this without her pointing it out. Just goes to show what a good eye this woman has for detail! She said she will also start working on my nipples (twist and stitch method from the incision line) and do my areola tattoos at the same time. This thrills me even more because I will be looking more natural sooner than I had ever imagined!! I honestly thought the tattoos and nipples would come at least 2 or 3 months later based on other people's experience. Dr. Marshall says I won't be complete, but she will at least begin this process and finish it up on an outpatient basis in her office later. She told me she is also going to start working on the "paint" for my tattooed areolas. She likes to match the areolas to the color of the lips, but I had on bright red lipstick at this appointment so she'll have to match it another day. I had to laugh because it was almost like having a discussion about paint swatches for my home! You know ... like do I want a flat paint or glossy finish?? I told Dr. Marshall she should be sure to use primer and give me a semi-gloss since it will be easier to keep clean! Ha, ha. Seriously speaking, I don't think I want my areolas the same color as my mouth ... that's wayyyy too pink for my taste ... I'd much rather them be in the brownish family, like my old ones. And remember, I took pics the night before my surgery so I wouldn't forget how they looked! I'm going to insist on a close match to what I had before when the time comes.

In the meantime, my tissue expanders have been getting filled with saline every two weeks and Dr. Marshall estimates I will have probably 2 more fills to complete my expansion. I am very pleased with how EVEN my breasts are looking now and they look fairly natural in my bikinis and clothes as well. They are so hard though ... I can't wait for the implant exchange that will leave me with more natural, squishy boobs!

I plan to do Race for the Cure the end of October here in Miami and I may travel to New York in early October to do Avon's 30-mile breast cancer walk. (My friend, Price, had suggested I do the walk with him since he's proposed to do it in my honor. Awww!) Good thing I won't have to worry about these tough tissue expanders bouncing around. But I'll be joyfully bouncing around by Thanksgiving this year! YAY!!!!

Sheep's Ass Hair

2007-07-31T11:06:00.000-05:00

I had my first haircut on Saturday. I HAD to do it. My hair was growing like a weed and getting completely out of control, especially on the sides around my ears and around the back of my head ... it was beginning to look just like a sheep's ass. I had been wavering for the past couple weeks about whether to trim it or just let it grow ... even if it was growing wild. I have been soooooo grateful just to have hair again! Now it is much shorter (around the sides and back), but it looks much more chic in my opinion. I'll have to get a pic up soon to prove it. ;-)

And I can't believe THIS GUY ...

2007-07-25T11:24:00.001-05:00

... is still around!! When does this U.S. nightmare end?

EVEN MORE OFF TOPIC: Anybody seen Michael Moore's "Sicko?" How was it??

OBAMA GROUPIE!

2007-07-18T22:53:00.000-05:00

Coming out the ladies room, I figured this is as close as I'm going to get ... lemme snap this now since, afterall, I didn't bring my paparazzi lens.

Who knew ultimately she'd be up close and personal ... and so warm and friendly to boot?!

I attended a fundraising luncheon today for the Obama campaign with some friends in Boca Raton. Michelle Obama was on hand to give a speech about growing up in a working class family on the south side of Chicago, attending public schools, the values her parents instilled in her and her brother, Craig, her amusing first impressions of the man who later became her husband, the common interest they had in community service, the priority they continually give to successfully raising their 2 daughters, and the shared vision they have for the country and improving the lives of all Americans. She described how the Barack Obama she has always known has always been so consistent in choosing principle over money and power. This dates back to his days following graduation from Harvard Law School when Barack moved to Chicago and chose to work as a community organizer and civil rights attorney.

Michelle explained she and Barack always understood, even as young people, how fortunate and blessed they had been in their own lives. They recognized and felt a responsibility to make a difference in the lives of other people -- not just to go about living a good life of their own. What struck me most was just how genuine she was and how heartfelt her words were. I have so much respect for her as a working mother ... and even more respect for her selflessness and the family sacrifice she is making to share her husband with the rest of us for the common good of the country.

Following her speech, Michelle slowly made her way around the room and took the time to speak with each supporter individually and allow for picture taking. She is such an amazing, awesome lady! And she will be an amazing, awesome FIRST LADY as well!

Recent South Beach Pics

2007-07-09T00:14:00.000-05:00

I took these pictures Saturday afternoon at the beach. Just thought I'd give you guys some idea of how my hair is progressing. Turtle, turtle ... but overall, I'm happy with it. Yes, I got BURNED UP out there despite all the cloud cover. I just really did not think to reapply sunscreen after I came out the water ... the clouds were deceiving, but I should know better how UV rays work. Yikes!

Further updates. I had my first "expansion" of the tissue expanders on June 27th. It was very, very tolerable ... not bad at all really. It's still too early to say how the remaining fills will go and whether they will be pain free. However, during this first expansion, I only felt a small amount of pressure building against my pectoral muscles as the saline was injected. At first, the nurse only wanted to do 30 cc's of saline since it was my first one. I INSISTED that she put in the 60 cc's I had been promised. My attitude was "fill 'er up!" So I now have 120 cc's of saline with approximately 180 more cc's to go (my tissue expanders hold 300 cc's). I am going to ask for 80 cc's at my next appointment (this Wednesday) since 60 cc's was so manageable. I still experience some tightness in my chest wall area, but I seem to notice it much more when I first wake up in the morning. Once I get up and get going, it's not so bad. Either the skin is loosening up a bit, or I've simply grown accustomed to the ever-present tight feeling and have learned to ignore it.

You can see from my beach photos above that I have some projection now ... I'm looking less like a flat chested penguin. The downside is that the "ports" through which the saline is injected sits right on top of my breasts. If you look carefully, you can see the port on my right side which makes me look like I have a big ole bump in my chest. The one on the left side is not as obvious for some reason. My plastic surgeon told me she prefers to have the ports positioned there, as opposed to on the sides (where it would be better camouflaged by clothes), because it seems to cause some people discomfort. But how many times have I crammed my toes (and my bunion) into a tight ass Charles David shoe simply because it was hot shoe?? I am willing to sacrifice comfort for style sometimes! No, but seriously ... my concern is that as I get more and more saline in the expanders, I am fearful these ports will protrude further and/or even possibly come through my skin. The nurse says it won't happen, but I can see it projecting so prominently, right under my skin. Hmm?

Also, I got back in the gym last week and attended a few spinning classes. I am determined to get this weight off! Plus, I just need to make exercise a standard part of my life now. If I could just give up my coca-cola addiction though! Damn, it's HARD. I'm not a coffee drinker, but it would be tantamount to asking someone who is to forego the caffeine. I'm not sure if it's the caffeine to which I'm actually addicted ... I just LOVE the TASTE! And the stronger the burn in the back of my throat, the better! It's a sick addiction I have to overcome, I know.

The Village Called ...

2007-07-03T11:20:00.001-05:00

... apparently, their idiot is still missing. If you see him, do not approach him ... please contact local authorities IMMEDIATELY!

Penguin Gut

2007-06-19T18:00:00.000-05:00

I've lost 7 pounds of chemo weight!! But now that I appear to be somewhat flat chested in my clothes, I look like I have penguin gut. (smile) It's actually the least of my worries, if I can say I have very many worries these days.

My recovery from surgery is going very well. I had my final drain pulled last week Wednesday and I can now comfortably sleep on my sides. Who would have given much thought to being able to sleep on your sides, huh? I don't have any pain, but I am experiencing a great deal of discomfort in my chest wall area. It feels very, very tight in the middle of my chest (cleavage area) and near my sternum and upper rib cage area ... as if someone is pulling a huge rubberband around me. I am conscious of this feeling at all times, although it doesn't bother me until I lie down to sleep. I guess my chest muscles are pulling toward the side when I lie down, so I have to sleep propped up on pillows at somewhat of an incline ... maybe a 45 degree angle?

I have so far complained about the annoying tightness to each of my doctors and have been provided with numerous prescriptions. Many of my support group members praise valium as a wonder drug to relax the muscles and allow for sleep. When I asked for this at my last plastic surgeon's appointment, I was given a script for a muscle relaxant called flexeril instead. The flexeril doesn't readily appear to work for me though ... it only makes me sleepy, presumably just so that I forget all about the tightness in my chest. It's hard to imagine how much tighter I will feel after my first fill of the tissue expanders next week. I was told I was filled with only 60 cc's of saline at the time of surgery. For some reason, I guessed there was more than that. Apparently, my tissue expanders can hold 300 cc's, so I will have about 4 appointments where I will receive 60 cc's each time. Yikes! I did ultimately convince my oncologist to write me a script for valium, insisting that I will only use this potentially addictive drug for my expander fill appointments.

What else? Oh, I have been instructed to do certain arm exercises so that I don't get a "frozen shoulder." I have some pain in my left arm pit which radiates down the length of my left arm because of the sentinel node that was taken from that side. I suppose for a couple weeks following my operation, I was "guarding" that arm and keeping it in a bent position close to my side. As a consequence, I am experiencing some "cording" in the arm or a tightening of the tendon(s). I can feel 2 thin rubberband-like veins (the best way to describe it) in my armpit and it hurts like hell to stretch. I can only lift my arm as high as my shoulder, but if I attempt to keep it straight while lifting it ... I start to see stars! Dr. D. has threatened if I don't do my exercises, he will send me to a physical terrorist ... I mean, therapist. So I'm doing them now ... somewhat. It's easier in the shower when the water is hot ... I just take my fingers and crawl them up the wall as high as I can. Then, I try to swing the arm back and forth. It hurts the most when I lift my arm straight out to my side. Ugh. I'm just afraid something is going to pop, like pulling a muscle ... although I've been told I won't.

Anyways, I am nevertheless driving again! I've been driving Dad's car for the past couple days since it's an automatic (with power steering). Today was the first time I attempted my stick shift in my own car! Funny how much I missed driving my car ... one of life's small pleasures. I didn't have a chance to blast my stereo though ... Dad was with me, running errands ... and he can't stand to listen to my "bongo, bongo music" (as he calls it). There's always tomorrow though!

Oh, one more positive note ... I ran down to Dr. D., at my follow-up appointment last week, just how distraught I was about Dr. Marshall's office giving me a March 2008 exchange surgery date. He interrupted me halfway through all my long-winded babbling and said, "Camille. You can cut to the chase with me. You want me to call Dr. Marshall and get you an earlier date, right? Consider it done." I love that man! He's so sweet .... and he saved my life. And I'm not ashamed to say I have a huge crush on him. (:-) Here's the only pic I can dig up on him on the web, probably taken several years ago (he has a full head of gray hair now):

Dr. Robert DerHagopian is the one in the upper right corner.

My hero ... my sweetie pie!

I'm home ... and CANCER FREE!!!!

2007-06-07T23:48:00.000-05:00

And this was me leaving the hospital last Friday! Ha, ha.

Actually, this is how I felt once they got me off that foolish liquid diet I was on for a day and a half. Imagine chicken broth, jello, hot tea, and an italian icey for lunch, dinner, and then breakfast again?!?! I threatened to leave the day following surgery if they didn't finally find me some REAL food. It was the highlight of my day when my lunch arrived, consisting of baked chicken, wild rice, zucchini, salad, chocolate cake, and a COKE!!!

Okay, I digress. The surgery went very, very well last week. Dr. D. was able to get good, clean margins around the cancerous breast tissue and the one sentinel lymphnode he had to take from under my armpit was dissected and confirmed that no cancer had spread. I woke up in recovery with much less pain than I anticipated ... just a tight feeling across my chest wall area and soreness on the sides where 2 drains were placed on the left and 1 drain on the right. Dr. Marshall placed tissue expanders where my breasts used to be and inflated them somewhat, but I still don't know how many cc's of saline are in there. I was given a sleeping pill my second night in the hospital, and was apparently "unconscious" when Dr. Marshall came to visit me. She came back very early the following morning to examine my dressings, but I was still a bit out of it from the sleep medication and I just couldn't think of one thing to ask her about the surgery.

By Friday afternoon, I was home in the comforts of my own bed. I think Beijing senses she has to be careful around me ... she sleeps at my feet or at my side, but she hasn't jumped on my chest as she usually does, wagging her tail in excitement, the moment I open my eyes in the morning. She's such a sweet dog!

My week has been fairly uneventful. My pain medication (percocet) which I was taking every 4 hours the first few days would leave me groggy and sleepy. Hence, I spent a lot of time in bed sleeping and watching movies. My mobility and range of motion has improved greatly. I wasn't able to raise my arms the day after my surgery, so I had to be fed by someone. I can now get my arms up at least to shoulder level, so I can feed myself now and do most things that don't require heavy lifting independently. However, I still need my stepmother's assistance to take a sponge bath each day, I am still under orders not to lift anything over 5 lbs., and there is no driving for at least 2 weeks.

Today was my first day out the house. I even left without my smuggled Asian hair for the first time since November! Truthfully, my hair still needs to fill in or thicken up a little more on top as well as at the base of my neck, but after everything I've been through lately ... I frankly just don't really give a sh**. (:-o Oh, but my eyebrows are back (almost overnight) ... and my eyelashes are starting to sprout again too. Here's how I looked today ... FYI, I stuffed my surgical bra with socks (like I was 12) to camouflage the outline of my drains. My parents commented that I must be feeling well, since my vanity is back. LOL. Consider this my first hair update:

I had my first follow-up appointment with my plastic surgeon's office this afternoon and the nurse took 2 of my drains out. It didn't hurt too badly ... just stung a little when she clipped the stitches around them and slowly pulled them out from my sides. I still have one left in where my sentinel node was taken because it's still continuing to drain more than 25 cc's of fluid. In a word, the drains are NASTY, but they help prevent infection by draining extra lymphatic fluid and blood so I am trying to be patient. This last drain will come out next week. I would take a pic to show you, but it's probably really too much information. Basically, the drains have long rubbery tubes that are about 2 feet long and the bulbs on the end that catch the fluid are shaped like grenades. I've been tucking them into my surgical bra so they don't get snagged on anything ... like a doorknob, for example.

I thought I would be more emotional about having the bandages off today and really seeing myself well for the first time, but I was actually quite okay. The worst emotional day in this process so far was probably the day before my surgery. I just couldn't stop thinking about not having my breasts anymore. It also seemed so surreal and frankly unnatural that I was voluntarily driving to the hospital the next day, putting one foot in front of the other, to donate my favorite body parts to science ... or whatever it is they do with approximately 1-2 pounds (?) of breast tissue. The night before my surgery, I had my stepmother take some pics of my boobies ... just so I could remember them and maybe also so I could remember exactly the shape and color of my areolas for my later tattoos. Funny enough, when I saw my breasts on my digital camera, I couldn't help remarking, "Oh. That's what they really look like?? Gee, they're not as hot as I always thought they were afterall." Whoo hoo! LOL. And this wasn't just what I told myself to feel better about things either ... seriously, I never realized my left boob was that much bigger than my right or that it even hung a little lower than the right. In essence, they weren't all that photogenic and as far as any Playboy photo shoots I may have entertained (remotely in my mind, that is) ... that ship had LONG sailed.

So my heavy-duty bandages are off now, but there are steri-strips or surgical tape that remain over my incisions. I will have my first "fill" of the expanders in another 3 weeks ... they want me to heal a little more before injecting more saline. After my appointment with the nurse today, she strongly advised me to meet with the office manager to schedule an implant exchange surgery date. I questioned whether I really needed to do this today, so far ahead of time, given the fact that my tissue expanders will still have to stay in for another 4-6 months. Well, Dr. Marshall is apparently very popular and well-respected because they actually book this far in advance for her surgeries.

The office manager was very matter-of-fact and seemed to be overwhelmed with work because she barely looked at me when she asked me what date in February would I be available for surgery. I didn't think I had her her correctly. FEBRUARY? As in NEXT YEAR FEBRUARY?? Seriously??? She looked at me blankly and said, "Well, you have to have those (expanders) in for 6 months anyway which takes us to December. Dr. Marshall is gone for 2 weeks on vacation and she is solidly booked through January." Now I know I'm not good at math, but I count 4-6 months from May and come up with dates between September and November. This was merely her way of telling me to just forget about it obviously. We already have a family trip planned for my dad's 70th birthday next February ... a cruise that leaves from Buenos Aires, Argentina and we will be away for 3 weeks. Although the implant exchange is an outpatient surgery and takes less recovery time, I cannot have surgery and then recuperate on vacation. So I basically had another emotional meltdown when I was told my surgery date will be March 17, 2008 -- almost another year away before I can finally put this whole thing behind me! (:-( My eyes got glassy ... and then the tears started to flow ... I couldn't get them to stop (sigh). I guess seeing all this caused a little ice to melt in the Ice Princess and she assured me she would flag my appointment so that if there were any cancellations in January, I would have first priority.

I was visibly upset leaving the office, and Dad kept asking me what was wrong. I couldn't speak because I knew I would start crying again, so I just turned away ... walked to the elevator and waited for it to arrive. While we waited, Joan briefly summed up what happened, and Dad's first response was, "So what's wrong with March?" To which I responded, "Just leave me alone, Dad." I knew he didn't get it (not at first) and I just dismissed him as being a man anyway ... why would he understand how important it is to me to have completed new breasts by the end of this year? Haven't I been through enough? (Something I really don't like to ask out loud because I KNOW it could be a whole lot worse.) Nonetheless, my expanders will make me look like I have breasts in clothes, but they will be a lot firmer and less natural than my implants ... and the nipples and tattooed areolas can't even be addressed until I've healed somewhat from the implant exchange. The awkward silence in the car and more time to stare at the passing palm trees eventually calmed me down. I melted even more when my father said, "I just don't like to see you cry. But I can understand how you feel. You have your mind set on something, and then they always seem to change it on you." My father finally understood why everything seems so much more disappointing to me when I'm told I can expect one thing and then the rug is pulled from under me. And he's been a witness to it so many times in just the past few weeks. Joan always knows when to just stay quiet and put her arm around me. My father is ALWAYS well meaning, but most of the time he is what I call a "solutionist" for all my problems ... as most men are ... so if it's on his mind, it is also on his mouth. (smile) I don't think I even shock him anymore by what I say, but I decided this was still the perfect time to announce, "AND I WANT TO HAVE SEX! And I want to be able to enjoy it and feel comfortable with my clothes OFF ... BEFORE NEXT YEAR!" Ha, ha. Well, it's the truth. My father just gave it right back to me though, quipping, "Well, you'll just have to leave your top on." So then I went into my prolonged discourse about why having lots of sex is good for you ... that it releases endorphines and makes you happy. And I deserve to be happy. I know my father thinks I'm kooky ... and admittedly, I do still enjoy trying to shock him like I did when I was 16. We have a different relationship now though, so it doesn't really seem to work the same. Growing up, he always said he wasn't my buddy or my friend, and this wasn't going to be a democracy ... boy, was he wrong!

In any event, I am still hopeful and prayerful that I will get an earlier surgery date. I didn't mind pulling strings initially to get an appointment with my plastic surgeon, but it does makes me feel uncomfortable to lean on her to accommodate me for an earlier surgery date when I know there are so many other people who are in line just like me to get their cosmetic results rolling, just so they can get on with their lives. We'll see what happens.

WEDNESDAY MAY 30, 2007

2007-05-31T09:31:00.000-05:00

To all Camille's circle, I am posting this for her. The surgery went well. In her own words, she is "UNDER CONSTRUCTION". She has received initially great news about the biopsy during surgery. She has a great sense of humor and is looking forward to moving on with the recovery.
Thanks to everyone for all the good thoughts
Joan Coke

Screw Cancer!

2007-05-29T17:11:00.000-05:00

And screw my good eating habits too ... for today anyways. I had a big, fat, chunky hamburger with cheese, greasy french fries, and a Coca-Cola that burned the back of my throat for lunch! Mmm, mmm, good!!!

Tomorrow is my surgery. I have been very emotional today ... so I ate emotionally too. It was worth it ... to me.

I've been holding up rather well since my lumpectomy was scrapped at the last minute. I had a very enjoyable Memorial Day weekend with some friends who stayed with me ... we even did a spa day at the Ritz Carlton. A little on the pricey side (even with a friend's discount), but the champagne flowed generously so I didn't complain ... and this time I wasn't so buzzed that I mistakingly washed my hands with the green mouth wash (like I did the last time I was there). I did, however, forget to turn in the locker key. Oh, well ... who needs locker #32 in view of the other 250 lockers available at the Ritz Carlton anyway?

Last night, after my friends left me at home alone, I realized what I'm really going to be doing tomorrow ... and how different I will actually look and feel. Gosh, this sucks. I had to go to Target last night, minutes before they closed (yes, denial), to buy some pajamas that button down in the front since getting my arms into pullover nightwear may be challenging. I cried driving home and I've been pretty teary eyed all day today at work too. I don't even know why I came to work ... what a waste. I didn't do much today but read countless posts found on my online support group regarding recon and tissue expanders.

I am afraid of the impending pain ... I've been trying to gauge what to expect by what other people say. All I know is everyone tolerates pain differently ... so I know as much as I did before I even asked. I've probably made my pre-surgery jitters worse. I feel like I need a valium before I even get started tomorrow, but I have all kinds of restrictions on meds and food for the next 24 hours. Nothing to eat after midnight tonight. That means I have approximately 5 hours left to wolf down a big slice of carrot cake! I'm talking like this is the last supper before I'm sent to the electric chair, huh? Well, that's the same kind of anxiety I'm having ... I would imagine.

Thoughts and prayers are much appreciated right now ... and much needed. Please pray I don't have a massive coronary before my mastectomy. I certainly don't need any further delays. [Forced smile inserted here.]

My latest discovery ...

2007-05-24T10:39:00.000-05:00

... I have no nose hairs. No wonder my nose keeps running. Just thought I'd share.

(I should mention, however, that I have 11 eyelashes and 6 eyebrow hairs that are still hanging on.)

Wednesday, May 30th is the new date

2007-05-23T15:22:00.000-05:00

T-minus seven days ... and counting.

My bilateral mastectomy is now scheduled for next Wednesday, May 30th at 8:30 a.m. at South Miami Hospital. I seem to be in decent spirits ... maybe it's part denial for now ... but I am just seriously ready to do what I have to do. Not looking forward to the recovery period and all the in-between stages of reconstruction, but I AM looking forward to a healthy future and being on the other side of this whole thing with nice, new perky boobs! ( . ) ( . )

Plastic Surgeon Update

2007-05-18T18:07:00.000-05:00

I called my surgeon, Dr. DerHagopian, last night and voiced my concerns about the consult I had yesterday with the first plastic surgeon he recommended to me. Because I have so much faith in and respect for Dr. D., I asked him why he felt so confident in this particular PS's abilities. He explained that he knew yesterday was such an emotional day for me, he wanted to be sure I had a chance to meet with at least ONE plastic surgeon the same day. And because that PS was located right downstairs in the hospital and because Dr. D. works with him all the time and feels he is very experienced with 25 years in practice, he was comfortable pushing to have him see me right on the spot. Of course, Dr. D. was completely understanding of my feelings and said he was happy to recommend other plastic surgeons until I felt most comfortable.

To be fair, I was in a bit of shock yesterday when I met with this particular PS and I may have perceived certain things he said as being somewhat negative. (Dad and Joan were there during part of this consult as well and seem to think they heard what he said a little differently.) Perhaps he was merely trying to "manage" my expectations and keep me a bit realistic about reconstruction following mastectomy, but I know I should still be able to have high expectations because I have seen quite a few pictures of truly wonderful looking breasts after a mastectomy.

I had called my friend, Price, as soon as I got home from that consult because he was instrumental in leading me to my surgical oncologist, Dr. DerHagopian ... and I hoped that I could now land a good lead to a reputable plastic surgeon. Price's colleague and friend, Dr. Jaime Sepulveda, had said at one time he wouldn't have anyone besides Dr. DerHagopian work on his wife if she were in a similar position. So when Price told me Dr. Sepulveda was now recommending Dr. Deirdre Marshall as an EXCELLENT plastic surgeon, I was almost certain she would be the right doctor for me. It was only an added plus when Dr. D. recommended her as well! (My oncologist also approves ... in an e-mail this afternoon she told me I will have an excellent surgical team in these 2 doctors.)

I had a great meeting this morning with Dr. Deirdre Marshall ... in fact, she called me around 9:00 pm last night after Dr. D. had called her at home to schedule a consult. Although she had 2 surgeries scheduled for today (and doesn't normally have office hours on Friday), she was willing to fit me in between her cases. She was so great when I met her today. She answered the whole litany of questions I had thoroughly, she was patient with her time (notwithstanding another surgery she had to perform), and she showed me a multitude of photographs of her work. Dr. Marshall has been in practice for 15 years since residency and she seems to be worth her weight in gold! (Oh, she is also in my insurance network and has her privileges at one of the same hospitals as Dr. D.) She assured me I will have beautiful breasts when everything is said and done. She showed me how she will mark my body for the incisions (that Dr. D. will then make) and that they will eventually be camouflaged nicely by tatooed areolas and new nipples that come after I have had the exchange surgery for implants! (I know this is probably too much information ... but I find what they are able to do to replicate real breasts completely fascinating. Boy, did I miss my calling in medicine!)

I know it seems surprising to many people that I am opting for a bi-lateral or double mastectomy even though I only have one affected breast. My decision has been greatly influenced by the experiences that have been shared by so many members of my online support group. The good majority of women who had to have a mastectomy and chose only to do one side at the time almost ALWAYS regretted not having done a prophylactic mastectomy on their good breast at the same time. Most of the time, they were in so much shock from the initial diagnosis that they couldn't process removing the other. And in almost all cases, these women went on to have a subsequent surgery to ultimately achieve symmetry in their breasts. I suppose because I've had 8 months to live with my diagnosis and process things, this decision is made a little easier. I have also had time to review soooooo many pictures of reconstructed breasts and hear experiences (good and bad) from my support group members that I was able to almost creatively visualize what I would do if it came down to me having to face a mastectomy. Most importantly, I should add that after all that I've been through already, I don't wish to ever go through this again or have any more anxiety about cancer recurring in the other breast. This is aggressive as it gets and I know it's the right thing to do now. If I have one breast or even two that are trying to kill me, they both have to go!

I will have what is called a skin-sparing mastectomy performed by Dr. D. ... this means all the breast tissue will be taken out, including the areolas and nipples (because cancer can travel to these areas as well), leaving my skin behind. Immediately following, Dr. Marshall will place tissue expanders under the muscles behind my current breasts. She uses Becker high profile tissue expanders which are part saline and part silicone (so they have a softer feel than other expanders that some women say feel rock hard). I will wake up from my surgery with anywhere between 220 to 300 cc's of saline already inside the expanders. She says I will look like I have an A cup. Then after I've recovered for 10 days and my drains (yes, drains!) are taken out of the sides of my breasts to drain extra lymphatic fluid and blood, I will get "fills" of saline every week or every other week to stretch the muscle and tissue. She prefers to fill at only 60 cc's per appointment until I reach the size I want. I will be happy to just get back to my current 34C's! I will have these tissue expanders for about 4-6 months, and then I will have an implant exchange surgery. Dr. Marshall explained thoroughly about this procedure and said when it comes time for the implants to go in, she will manipulate the surgical table to sit me up at a 90 degree angle while I'm under anesthesia so that she can see exactly how the implants fall. They will also move me around a bit from side to side to get the proper placement and make them look as natural as possible. If I can achieve results similar to the following examples of reconstructed breasts, I will be very satisfied.

This is before areola tatoos and the surgical tape is in place just to smooth out the mastectomy scar.

This is just 12 days following the implant exchange surgery ... the tatooed areolas were later moved to be more centered and nipples were later followed by the "twist and stitch" method as seen above.

I'm so glad to have a female plastic surgeon in many ways because I could tell from our consult that she would be VERY SENSITIVE to my cosmetic concerns and still do the best she can to make me feel physically comfortable at all phases of my reconstruction process. If I thought I was the bionic woman following my port surgery, I am really going to be built up now! I'm ready to just get this initial part over with so that I don't have too much more time to think and feel anxious. The longer it takes, the more upsetting I think it will become. I'm just looking forward to being on the other side of all this soon.

Do you want the good news or the bad news?

2007-05-17T19:24:00.000-05:00

The good news is I will NEVER have to worry about a recurrence with breast cancer. The bad news is my surgery was cancelled today because I am going to have to have a mastectomy with immediate reconstruction. I know, I know ... I am just as shocked and devastated by the news. I'm okay with it all now, but just really, really tired from a very long, involved day. I am cheating and simply posting what I wrote earlier to my YSC sisters at my online support group. (I will post more in the coming days ... but my head is still reeling with the surprising news ... and I just want to lie down. But I also wanted to keep everyone updated for the moment. I know so many of you were thinking of me today and had me in your prayers. I so appreciate that and really do feel all the love.)

I am home now, but in such a DAZE. Still trying to get my mind around it all.

A recent MRI confirmed that chemo shrunk the two tumors I had significantly. However, the mammogram I had today to assist with placement of the wire guide showed I still have DCIS (ductal carcinoma in situ or "precancer" confined to the mammary ducts) extending over a large 4-5 cm area. Apparently, an MRI can pick up invasive cancer, but it does not show DCIS so it can be misleading.

Anyway, my surgeon told me he could try to do a wide excision but he could not assure clean margins with the extended area of DCIS. On top of that, it would leave my current 34C breast pretty deformed and he didn't feel it was ethical to try for a lumpectomy. So the decision is made, I guess.

I consulted immediately with a plastic surgeon my surgical oncologist recommended and praised highly ... I was truly a squeezed in appointment. However, I did not leave the PS's office feeling completely confident. He did tell me he could try for skin sparing with me, but he would prefer more "droop" in my breasts to do an "anchor" incision (from the nipple downward and then one curved incision on the underside of my breast). Otherwise, he would work with whatever incision my surgeon used (diagonal or straight across). For all that I've learned on this website, he didn't give me a straight answer on what type of implants he would use (i.e., high profile, moderate profile, teardrop, gummy bear, etc.). Instead, he said he is more concerned with reconstruction that won't create more complications for me. In other words, if he tries to do everything I want for purely cosmetic reasons, it could possibly cause more problems for me ... so cosmetics is not the foremost priority. I am paraphrasing here cuz I can't really remember everything he said specifically. I get what he was saying about my health being the priority, but why can't I also strive for a FANTABULOUS result?? He left me feeling like I won't have the great looking breasts I have now, but they will be about the same size and more "mature looking" (these were his exact words). WTF does that mean???

The pics I saw of his work looked GREAT for cosmetic breast augmentation and breast reduction. But he only had ONE photo of reconstruction after mastectomy with expanders/implants to show me ... it was just OK. His book was pulled apart for a consult he was doing earlier, and he said he'd have to locate the others and he didn't have time at that exact moment. Understandable given the time constraints of my non-appointment, I guess.

I know I have a lot to consider in a short amount of time ... my surgeon doesn't want to wait too long (i.e., more than 2 weeks) since I've finished chemo and doesn't want the cancer to start growing again. But I do want to assure myself that I can get GREAT results ... I know it's possible because I've seen plenty of examples here!

My head is still reeling from all this and I cried a good bit because I thought they were forcing me to make a decision about having a mastectomy TODAY. I'm now okay with it all ... I just want to make sure I can find a good PS ... oh, who also has privileges at the same hospital as my surgeon (Baptist Hospital in Miami) ... the other challenge here.

This whole experience seems so surreal ... I can't even believe I'm talking about MYSELF when I tell people about my battle with breast cancer.

Couldn't resist this one ...

2007-05-16T14:03:00.000-05:00

Just kidding.

But you know what they say ... misery loves company. (Tee hee!)

Surgery date is finally here!

2007-05-16T10:53:00.000-05:00

I am FINALLY having my surgery tomorrow (May 17th) at Baptist Hospital in Miami! Truly, the day can't come fast enough for me. It will begin at 7:30 am with a pregnancy test ... nevermind that I've already said there is no possibility that I'm pregnant ... they simply won't take my word for it. At 8:30 am, I will have a needle wire guide inserted in my left breast so that my surgeon will know exactly where to work. (Have I said if you're afraid of needles, cancer is not the thing to get??) At 11:00 am, I will move to pre-op to presumably get undressed and have an I.V. stuck in my arm. (I always try to predict where they're going to stick me and lather on my EMLA or lidocaine -- skin numbing cream -- ahead of time!) At 1:00 pm, I am scheduled to breathe deeply and fall off to a deep sleep. But not before I make sure my surgeon, Dr. D., has said he had his breakfast or lunch and a good night's sleep! Afterall, tomorrow is not the day for him to feel sleepy at work ... you know what I mean?

I'm really OVER all the annoying, lingering side effects I've been experiencing from chemotherapy. Boo, hiss, boo! I was told I would have an easier time with Taxol, but to date, let's see ... I'm up to 129 lbs. (or 20 lbs. more than usual for my tiny frame), I have unsightly acne scars all over my face, chest, and back, I've lost my eyebrows and lower eyelashes, I'm experiencing extreme edema or swelling in my hands, feet, and legs STILL, I have painful nailbeds that look bruised under the nail ... let's see, what else? Oh, hot flashes strike without warning about 4-5 times per day! It's worse at night when I'm trying to sleep ... covers on, covers off. And I'm a bed hog now ... looking for any cool place for my Fred Flintstone feet!

I know I sound like I may have nothing good to say. Believe me, I am soooo very appreciative of my team of doctors and extremely grateful that they encouraged me to have the most aggressive treatment to date ... I'm especially grateful for all my earth angels (friends and family who have been soooo incredibly supportive of me these past several months) ... but I'm feeling as though I'm starting to hit a wall now. After surgery, I still face 7 weeks of radiation treatments (every day, except weekends). They will likely want to tatoo me with teeny tiny dots in several places around my chest so they can line up the radiation beams each day. I simply don't want tatoos if I can help it. I would rather they mark me with permanent marker that I will be more than willing to cover up with surgical tape to keep from washing off. I'm not even sure if this will be a possibility, but I'm going to argue for it. On top of everything, I worry about those radiation beams hitting too close to my heart and my left lung. Ugh.

Overall, I feel like I've put up with enough already ... hair loss, risk of damage to my fertility options, fatigue, etc. and all with a positive, great attitude for the past 8 months or so. Breast cancer takes so much from you physically and emotionally ... it feels like a constant challenge to not let this dreadful disease defeat your spirit and self-esteem. I'm just trying to remember that things could be a lot worse and keep it moving forward. The best part of my day tomorrow will be my ability to say, "I HAD breast cancer!" :-))

Complete Clinical Response to Chemo

2007-04-28T06:23:00.000-05:00

"CCR" ... or complete clinical response. Those were the words of my surgeon, Dr. DerHagopian, a couple weeks ago when we met to discuss my upcoming surgery date on May 17th. He examined me and said the tumor is barely palpable now so my response to chemotherapy has been excellent! He is very pleased and feels confident there won't be lymphnode involvement. We won't know for sure, however, until the time of surgery. Of course, I still had a plethora of questions for him concerning potential microscopic cancer cells that could still be circulating in the blood stream, and the risks that could pose for distant metastases in other organs. He reassured me the data I had e-mailed him (and my oncologist) concerning one German study conducted in 2005 re: circulating tumor cells has not changed the way the oncology community is currently treating breast cancer. I am doing every treatment that is available to me at this point to be aggressive and so far it has rendered a "complete clinical response" according to Dr. D.

I am feeling a whole lot better about my decision to go forward with a lumpectomy to remove whatever is remaining of the tumor. (According to an MRI and an ultrasound I had done this past week, one tumor is now as small as 3-4 mm and the other is approximately 12 mm. The ultrasound tech and radiologist could barely find the smallest tumor on film. You may recall I started out with both tumors measuring approximately 2.5-3.0 cm together.) As I mentioned in one of my earlier posts, I had been waivering at one point about whether I was doing the right thing by having a lumpectomy as opposed to a mastectomy with reconstruction. It was a tough week when Elizabeth Edwards and Tony Snow announced their recurrence with cancer. It literally scared the hell out of me ... and I realized that probably for the rest of my life, I will think about cancer and question whether it could possibly return. However, I know that I can only worry about the things within my control and leave the rest to a higher power.

I have already started to modify my daily diet to incorporate more natural foods that contain antioxidants or other cancer fighting properties (e.g., blueberries, more fruits in general, broccoli, cauliflower, spinach, avocados, nuts like almonds, green tea, etc.). Many of these foods I enjoy anyway, but I know I don't eat enough of them regularly. Exercise also has to become part of my lifestyle for good now ... even if it's just 20 minutes of walking per day (yes, I know strolling with Beijing doesn't count) ... and I have to be consistent and serious about it. There was a time when I exercised regularly and could work it into my schedule on my way home from work. Then life got hectic and I became less and less consistent. No more excuses now ... especially with the 15 pounds of weight gain brought on by the steroids and comfort foods during chemo. For my small frame, these extra pounds have me feeling winded and fatigued much of the time and my clothes are just too tight now (especially across my middle). Have no fear ... I'm bringing sexy back this month! :-)

I completed my last chemo treatment yesterday ... FINALLY! (Well, I still have to have infusions for a drug called Herceptin for another 9 months ... once every 3 weeks, but there are NO side effects with that. This drug targets the overexpression of an oncogene or protein that causes cancer cells to divide aggressively. It was approved by the FDA for metastic disease in 1998, but was only recently approved in 2006 for expanded use in the treatment of aggressive breast cancer -- typical of young women under the age of 40.) I am thrilled that I am done with Taxol however!!! Although I experienced no nausea as with the first chemo drug, I have had many other annoying cumulative side effects with Taxol ... weight gain, weekly bouts of acne, neuropathy (tingling in my hands and feet), blurry vision, and more recently lots of swelling in my feet, ankles, and calves. My oncologist prescribed a diuretic yesterday which seems to be helping a great deal already. For the past two weeks, I have been sleeping with my feet propped up and could only fit into one pair of closed toe shoes that I have. My feet have been looking like Fred Flintstone's and my toes have been looking like ... well, vienna sausages! Piggies in a blanket, I call them. Yikes! (:-o

It's been quite a ride so far, but the worst (I hope) is forever behind me now. I still have to do radiation after my surgery and then some form of hormonal therapy which I will negotiate with my onc to do until I'm ready to seriously try to get pregnant ... this I hope and determine to happen within the next 2 years. I've been chanting for "Prince Charming" to be in my life and for me to be closer to knowing it by no later than June of this year ... I feel certain this will happen, if it hasn't already. Many things about the choices I've made in my relationships have been revealed to me with greater clarity. This experience with cancer has also forced me to look inward and re-evaluate to some degree the value I've placed on certain things. A whole lot more on that later. (:-)

Also, I will post pics very soon with my hair updates. My hair has been slowly growing back in while doing Taxol ... it should speed up now that I'm done. I'm still wearing my cranial prosthesis ... LOL ... but the adhesive glue which keeps it intact is not impeding the hair growth, thankfully. I hope to be sporting a new pixie cut in the next month or so, once a little more hair fills in on top. Beautiful hair awaits me ... I'm soooooo excited!

The Gift that just keeps on Giving ...

2007-04-03T10:36:00.000-05:00

2007 NCAA Basketball National Champions!

ALL TOGETHER NOW ... "It's great to be a Florida Gator! I said it's great to be a Florida Gator! I SAID IT'S GREAT TO BE A FLORIDA GATOR!"

Good luck in the NBA, Guys!!

Thanks for a great run!

the final word on nutrition

2007-03-27T22:38:00.000-05:00

I've been steadily gaining weight since I started these weekly Taxol treatments ... 15 lbs. since the beginning of February ... all thanks to the steroids given to me weekly with my chemo cocktail. The pounds will shed, I'm told, as soon as I'm done with this treatment regimen. This week I'll have eight rounds completed with four more to go. In the meantime, I've completely given up on counting calories and watching carbs. Fortunately, I'm eating a whole lot more fruits and vegetables ... unfortunately, I'm just eating a whole lot more of everything else too. I am ALWAYS HUNGRY.

So for those of you who watch what you eat, here's what I believe is the final word on nutrition and health. It's a real relief to know the truth after all those conflicting nutritional studies.

1. The Japanese eat very little fat and suffer fewer heart attacks than Americans.

2. The Mexicans eat a lot of fat and suffer fewer heart attacks than Americans.

3. The Chinese drink very little red wine and suffer fewer heart attacks than Americans.

4. The Italians drink a lot of red wine and suffer fewer heart attacks than Americans.

5. The Germans drink a lot of beers and eat lots of sausages and fats and suffer fewer heart attacks than Americans.

CONCLUSION:

Eat and drink whatever you like. Speaking English is apparently what kills you.

Cat Fight ... MEOW!

2007-03-26T22:14:00.000-05:00

There seems to be a cat fight brewing on the message board of my online support group. Usually, everyone is very sweet and supportive ... people will chime in to answer questions or give words of encouragement ... basically, we lean on eachother. But as with any group, from time to time there are flare ups of emotions and people will express opinions that inadvertently (or not so inadvertently) hurt other people's feelings. I'm staying out of it.

To summarize, it all began with a post entitled "Sheryl Crow is pissing me off ... sorry, a vent." The author expressed her feelings with regard to Sheryl Crow's guest appearance on Larry King Live the other night to discuss (with several other guests) the recent news of Elizabeth Edwards' recurrence of cancer. Essentially, the poster felt it was inappropriate for Ms. Crow who "only had Stage 1" cancer (an early stage) to have any comment for a woman who is now dealing with an incurable Stage 4 cancer. She went on to state that it angers her that the media gives so much attention to Sheryl Crow as a spokesperson for breast cancer because "she gives women false hope that the bare minimum treatment is okay." The sentiment either was or was interpreted that because Ms. Crow had DCIS (ductal carcinoma in situ -- cancer which is confined to the milk ducts and has not spread), did not undergo chemotherapy, did not lose her hair or her breasts, and "only had a lumpectomy and radiation," she did not suffer as many others with breast cancer have.

This generated a flood of angry responses from other women in the support group who were also diagnosed at early stages or earlier than others. One comment went like this: "I cannot know the demons you have faced, but you don't know the demons that others have faced. To imply that one struggle with bc is more noble, honorable, important, difficult, or significant, belittles every other one. A 'stageist' thinks you haven't really suffered if you aren't at their stage or higher. I guess there will always be some women who feel that way. Some will voice it and some will keep mum about it. And others just aren't like that at all and freely care about the struggles of all survivors no matter how early or late their disease was discovered." Another commented, " I 'only' had a lumpectomy, radiation, and take tamoxifen, too. I still have to deal with the fear of recurrance every day, and no one is going to tell me I am less of a 'survivor' because I did not go through chemo or a reconstruction."

I think everyone is feeling rather on edge because Elizabeth Edwards reminds us that metastatic disease can happen to any one of us ... with absolutely no rhyme nor reason. We all have the same fear no matter the stage at which we may have initially been diagnosed. It's evident to me that even among the most supportive, cohesive groups ... like Breast Cancer Support groups ... lines are always being drawn ... consciously or unconsciously. Maybe it is human nature to do so? Part of our innate, fundamental darkness? Stage 0 vs. Stage 1 vs. Stage2 vs. Stage 3 vs. Stage 4 ... Mets to the lung beats Mets to the bone ... Mets to the liver beats Mets to the lung ... then, brain Mets trumps them all! The problem is when we start to assign "worthiness" to different sub-classes of this shared horrible experience. There's no such thing as having a little bit of cancer. It's like being a little pregnant!

Nevertheless, there is one woman in my group named Tammy Lou who always has just the right words, just the right quips, and just the right sense of humor. (Despite numerous failed attempts she has had at reconstructing her breasts -- reasons too complicated to explain here, she continues to maintain a positive and hopeful view of her circumstances.) Eventually, she mediated the entire argument and brought this cat fight to an end with the following response:

"We just met this past weekend and now I find myself wondering if you hate me because I didn't lose my hair like you did?" (quoting Michelle)

Yes, I hate you.

I hate you in the same way that I hate the "naturally skinny" women in the world who eat bowls and bowls of ice cream and never get fat.

In my imaginary mind, those women are not "real" people.

AND, I hate all of the women who had reconstruction and walked out of the O.R. with picture perfect breasts.

I do.

It's not a pretty thing.

It's grief and envy and all sorts of normal human emotions.

But, it isn't real.

And, I don't really hate them or you.

I'm just angry and upset and I say things that I don't really mean because it is easier than facing my own grief. Alone.

If I am "mad" at you for whatever reason, then I am not alone.

You are with me.

It is much easier that way...when I am not so alone.

Love,tl

P.S. A very wise woman once said, "Your mumps does not make my measles better."

Hypothetically.

Oh, Obama!

2007-03-25T22:51:00.000-05:00

Alright, this obviously has nothing to do with breast cancer, but meeting Barack (the future President of the United States) at a fundraising event in Palm Beach today was the highlight of my entire weekend!! He gives me so much hope that there is an end in sight to this dreadful nightmare we've been living the past 6 years. (:-) The room was filled with about 800 supporters. We were ENERGIZED not only by the substance of his words, but by what seemed to be a sincere expression of his deepest desire to do what is right by the people of this country. I love him!

Here are a few more of my pseudo-paparazzi shots:

Almost looks like he's cussing, doesn't it?

"What do I think about George Bush? &#$%@ HIM!"

(Kidding ... my words ... not his.)

Hee Hee!

Serious autographing going on here ... "The Audacity of Hope." Get it, in bookstores now!

Any closer and I could have filled his cavity. You know I really feel I missed my calling in dentistry anyway.

Now this little girl SANG the Star Spangled Banner!

Elizabeth Edwards

2007-03-22T22:26:00.000-05:00

Why do bad things happen to good people?? Specifically, why cancer??? This is truly a tough thing to understand. I was driving to my 7th Taxol appointment this afternoon listening to CNN when the press conference discussing Elizabeth Edwards' recurrence with breast cancer came on. It just took my breath away. I couldn't believe it.

I haven't cried very much since hearing about my own diagnosis, but I literally had to choke back the tears on this one. I think what moved me the most was how she and her husband are handling this situation with such openness, courage, and grace. When I came home to see the actual news conference, I cried some more. Edwards has put such a brave and optimistic face on such frightening and disturbing news. There is no cure for her condition now, only treatment to sustain her the rest of her life. My heart truly goes out to them and their entire family.

For those who haven't kept up with the news, Elizabeth Edwards (wife of democratic Presidential hopeful, John Edwards) battled breast cancer in 2004 and in just a little more than 2 years, she has been diagnosed at Stage IV with metastatic disease to the bones and possibly her lung. Doctors don't yet know exactly how widespread her returned cancer is, beyond a small but definite spot found in her right rib after she coincidentally broke a rib on the other side. They are also awaiting test results on a suspicious spot in her lung.

It is not uncommon for women to experience a recurrence within five years of an initial diagnosis, and that's why reaching the five year milestone is regarded with so much relief by many survivors. Breast cancer is very complex and heterogenous ... it is so different in so many women. That is why the treatment protocols can vary so much from person to person depending on certain factors. Chemotherapy is designed to kill cancerous cells and we are always encouraged when there is no cancer found in close by lymphnodes. However, microscopic cancer cells not necessarily destroyed by chemo can still travel through the vascular system (i.e., blood stream) to other organs. That is why additional protocols such as radiation, systemic hormonal therapies for hormone positive individuals, and drugs like Herceptin for aggressive cancers after chemo have a place of importance. One thing is sure, this disease loves to migrate to certain organs when it's given an opportunity to metastasize. Mets to the bone, liver, lung, and brain are among the most common organs to be affected.

In a 2004 People magazine article, Edwards, 55, said she first noticed a half-dollar-size lump in her right breast on Oct. 21, 2004. She told the magazine that she had not had a mammogram since the birth of her son, Jack, 4. Most experts agree that annual mammograms for women in their 50's reduce the risk of dying from breast cancer. Although she had been diligent in getting mammography in the past, she said life just seemed to take over and she didn't get around to it. When a sonogram Oct. 29 suggested that the lump was malignant, she called her husband on the campaign trail to break the news, according to People. A needle biopsy Nov. 3, the day after the election, at Massachusetts General Hospital confirmed that Edwards had invasive ductal carcinoma, the most common type of breast cancer.

I am really curious with regard to her hormone status and what type of chemo treatment she was undergoing before. I read somewhere that she had had mega fertility treatments at the age of 50 to conceive her two youngest children. I would imagine that the hormone treatments would not have been a big issue if her cell receptors were not receptive to hormones in the first place. But, if her cell receptors were hormone positive, would the fertiltiy treatments have increased her overall cancer risk? I have heard that EVERYONE has cancerous cells in their bodies, but most people's immune systems have the ability to eradicate them before it ever becomes what we know as cancer. But for those of us who have fueled cancer with synthetic hormones or other environmental factors of which we may be unaware, getting rid of these cancerous cells is more of a challenge for our lymphnode and immune systems.

As you can imagine, for every woman who is currently battling or has battled breast cancer in the past, news like this makes your heart shutter with fear. Even with all the wonderful advancements in the way of treatment and the faith you have in your doctors, you obsess about whether you're doing or have done enough to be aggressive in the face of this disease. It feels like such a crap shoot at times! And truthfully, as my surgery date approaches, I have a tendency to vacillate about whether I am doing all the right things for myself. Breast conservation seemed soooo important to me above almost everything else at the time of my diagnosis. Now with more time to think and more time to have researched reconstruction options, I waiver back and forth about whether I should be doing a mastectomy (including a prophylactic one of my good breast) instead of lumpectomy and radiation. Yes, how many times have I said I love my boobs? But I know if I ever had a recurrence (something I try not to dwell on for very long), I wouldn't think twice about taking these breasts off. And who the $%&@! wants to do chemo all over again?? Ugh!

As Elizabeth Edwards well knows, this is not a road you can travel alone. Breast cancer has a way of bringing together an amazing community of women who find eachother through this common experience. Moreover, I have met some of the kindest, compassionate people who have endured this disease. It seems so incredibly unfair on the surface. But spiritually, I believe our experience is designed to allow others to be a witness to all the good things that can come from it, including miracles and what we see in our supporters.

BC is the great equilizer because of the same fear we face ... we all fear the beast! And while I obviously don't know Elizabeth Edwards, I feel as though she could be my friend in the fight. I suspect that what is terrible for her on a personal level (and I wouldn't wish this on anyone) will ultimately be good for us as survivors. She will bring to light the issues, and she will be relatively public (she has already written a book about her fight with breast cancer), and if we're very, very lucky she will be outspoken about the need for funding etc.

Funding to the National Institutes for Health, specifically for cancer research, has been cut dramatically by this current administration. This is not a statement designed to divide us politically ... it is not about liberals vs. conservatives but rather about the way our government prioritizes support for cancer research and treatment. And it is my hope that as political figures in a prominant, public forum (whether John Edwards wins the Democratic bid or not ... the election is irrelevant because he and his family have become part of the news focus right now), they will be personally inclined to support cancer programs, and perhaps they can return funding to its original place or even push for increases. (Personally, my money is on Barack Obama, but I digress here.) This disease just takes so much from women and their families. The funding to find a cure that afflicts 1 in 7 women in America is just so essential.

In any event, I truly admire Elizabeth Edwards for her strength, grace, and poise given this shocking news. But at the same time, I'm not all that surprised. She will fight the good fight ... and she really does get it. Cancer is a word, not a sentence.

Chemopause

2007-03-05T00:44:00.000-05:00

It's official ... chemo has now put me into a chemically induced (temporary) state of menopause. This was expected with chemo, but because it seemed my ovaries weren't going down without a fight all these months I was in denial that it would actually happen. (Denial is afterall my best coping mechanism .... deny, deny, deny until I HAVE to face what I can simply no longer deny.) What this means is there is a decrease in the levels of estrogen and progesterone my ovaries normally produce. Because my tumor ... sorry, I mean "the" tumor (since I refuse to claim ownership of it) is hormone receptive, the decreased levels of estrogen will not feed THE tumor's growth. This, of course, makes my oncologist very happy. And that makes only one of us. (I'm not happy about losing my period, even if it is only temporary ... it's the one sure sign that I'm still fertile. And I have been provided no definitive time frame for regaining it, although it is expected to return anywhere between a couple months following the end of chemo to possibly a year or so. It just depends on one's body and whether one is close to their natural time for menopause. It just adds more stress than I really want to entertain.)

Moreover, I just realized what I've been experiencing for the past two weeks (after missing my period last month) are hot flashes! Ugh. I didn't even know what they were. I went to D.C. two weekends ago for a conference sponsored by the Young Survival Coalition and Living Beyond Breast Cancer, but I stayed with my girlfriend, Carmen, who lives nearby in Alexandria, VA. It was probably around 30 degrees all weekend and it snowed. Although Carmen had the heat up at her place, I initially thought it was a bit cool for my personal taste. (My ambient room temperature is 76 degrees and usually anything below 70 makes me feel like I'm freezing. Hey, living in Miami will thin out anyone's blood.) In order to sleep comfortably, I put on sweatpants, a sweatshirt, and socks before getting under a thick, warm comforter. At one point, I woke up during the night wondering who the hell suddenly turned the thermostat up to 90 degrees??? I was burning up! I kicked off the comforter, took off my socks, and stripped off my sweatshirt to get some relief. Half an hour later, I was FREEZING again!

Similarly, at the Conference I found myself breaking out into sweats at times. I just figured some of the seminar rooms were hot ... and the fact that I was soooo excited to finally wear the tall, furry, COACH boots I bought during a sick sale in NY last year only added fuel to my existing internal fire. (It was a terrific conference, by the way ... I finally had the chance to meet so many of the incredible women from my online support group in person and the discussion panels were very, very informative and empowering.) Still, I was burning up my entire stay in D.C. I finally realized when I made it back to Miami that my hands and feet were always hot, even if my skin felt cool. Weird.

So to finally bring you up to speed on my treatments, here is the latest. I have now completed 4 of 12 weekly Taxol treatments which I typically get on Fridays. There are less side effects with Taxol (as opposed to Adriamycin and Cytoxan -- A/C) ... no nausea, no loss of appetite, no funny taste in my mouth. However, I seem to have a bigger appetite with the weekly steroids that are given to go with ... so now there is weight gain and belly fat to compliment things. Taxol can also produce bone/joint pain because it works on the bone marrow. To offset these effects, I am taking Vitamin B-6 tablets daily as well as L-Glutemine, a tasteless powder that I put in juice or water. It seems to help a great deal as long as I take these things consistently. I actually forgot to do both following my first Taxol treatment ... I was distracted by Superbowl activities that weekend and was surprised by how much energy I had following the treatment. I paid the price on Monday when I woke up with a stabbing, shooting pain in my lower spine and left rib cage. Tylenol with codeine couldn't even provide me any relief! I've been taking my vitamins and powder religiously ever since!

One additional note ... I did experience a setback with Taxol three weeks ago when, for the first time, my white and red blood cell counts dropped very low. My onc was rather surprised as she would have expected my counts to be more adversely affected by A/C, but I never required the Neulasta shot before. As a consequence of the low counts, I had to get Neupogen shots 3 days in a row to boost the white counts and one Araspen shot for the red ones. I took those needles in my belly (i.e., my belly FAT) which wasn't so bad, but the medicine stung like hell. I learned on the last day of shots that much of the sting can be avoided by warming up the vial in your hand FIRST. The fun just never ends with breast cancer.

I will hopefully complete my Taxol treatments the first week in May (if there are no more setbacks with low counts). Then, surgery approximately three weeks later will follow. I am looking forward to finally being able to say, "I HAD cancer!"

Manogram

2007-02-19T07:36:00.000-05:00

I Think Too Much

2007-02-16T02:22:00.000-05:00

Wow, I can't believe how much time has passed since I last wrote an entry. I guess I have more to keep me busy in life these days than just thinking about cancer. On the other hand, I probably think way too much about a great many other things and consequently, I've been having trouble sleeping at night. So it is ... I am still up at 2:20 in the morning ... WIDE AWAKE ... writing in my web blog.

I have ALWAYS been a nightowl ... I can still hear my father in my head from my high school days (usually as I was ironing my school uniform sometime well after midnight), "Camille, GO TO BED!!" I don't know what it is ... I just seem to get really busy at night. I clean, sort through my mail, balance my checkbook, pay bills, watch my TiVo'd Oprah shows (only after I've exhausted all the news channels), find other shows I wish to TiVo, read my Vanity Fair magazine, download music from iTunes, etc. It's almost as if I feel guilty that the whole day has gone by and I haven't done enough things for myself ... you know I'm BIG on enjoying my life. (smile) The flip side is I seem to feel if I go to bed early, tomorrow will be here that much faster ... and have I really accomplished anything TODAY?

The only time I remember feeling eager about going to bed is when I was a child and it was Christmas Eve. I simply couldn't WAIT for Christmas Day to be here already ... toys and other presents await me!! (Funny, I still felt this way even after I had already secretly unwrapped a few of my presents hidden in my parent's bedroom closet and then carefully taped them back in place so as not to look like they had been touched. My cousin, Tanya, and I would merely justify this as the Capricorn in us ... at heart, the Goat really doesn't like surprises.) But even then, I would still have to trick myself into getting sleepy that night ... I would literally count sheep (but backwards) ... 100 baaaaaa, 99 baaaaaa, 98 baaaaaa, 97 baaaaaa. And it would work too!

Sheep counting hasn't been working for me these past couple weeks. Not even tiring myself out with chores at night seems to work. I don't seem to get sleepy until sometime closer to 3:30 or 4:00 in the morning. I'm not sure if this is another effect of chemo or if it's just me thinking too much about the many things I want to get accomplished. Either way, I know my internal clock is very much thrown off.

I have been prescribed Ativan that I can take to "relax" but by the time I feel I really need to take it to get to sleep, it's so late and I know I have to be up in a few short hours. I've been thinking about asking for Ambien CR (controlled release) to sleep ... but I have an irrational fear of sleeping pills ... they scare me. What if I don't wake up? Or what if I ingest something else I unwittingly shouldn't be taking with sleeping pills? Like grapefruit -- which I love and have been eating a lot of lately. Okay, I'm joking ... about grapefruit's interaction with sleeping pills. The truth is I just don't want to become reliant on any pill for any reason. (Sadly, speaking of pill addiction ... I have become so FASCINATED by the legal questions this whole Anna Nicole Smith tragedy has raised. And what else do I have to do so late at night besides watch the news coverage and think about each daily, tabloid-like event as it unfolds? A law school final exam couldn't be scripted any better. It sure beats my 1st year property exam where I had to answer "Who owns the moon?")

Well, I was actually going to update you in this entry on the latest with my chemo treatments, but it will have to wait because now it's late. I have my third of 12 weekly Taxol treatments tomorrow morning ... or rather, today. In fact, my friend, Yolene, will be here to pick me up for it in 6 hours. This means I have to be up in 5 hours. So I guess I should go to bed ... and try to count sheep ... backwards ... because it's now 3:00 am .... but I still won't feel sleepy for another half hour or so. Hopefully, now that I've gotten all this off my chest (no pun intended) ... I won't have too much more to think about. ;-)

HAPPY 38th BIRTHDAY TO ME!

2007-01-22T23:54:00.000-05:00

Not today though ... my birthday was actually Friday, January 19th ... but it took me until today to fully recover from it. (smile!) Here are some additional pics from the party I had Friday night at the Ivy. (Sorors, I assure you the ivy reference was a pure coincidence ... but still kinda cute, huh?) Can you tell I had a GOOOOOOOD time??

So many of my friends came out for it ... and quite a few came into town from as far away as New York, D.C., Houston, Atlanta, and Tampa, specifically for ME! As you can well imagine, this birthday was very special to me. I really didn't even care that I turned another year older ... seriously (and that's BIG for me). I'm just truly grateful to be ALIVE ... and very grateful to have the life that I have, filled with incredibly loving friends and a family that supports me no matter what I do! This is something I've never really taken for granted, but I have to say that having cancer does seem to underscore in a big way just how much my life means to me.

I think about cancer everyday ... maybe not ALL the time, but at least when I wake up and when I go to bed ... and probably, at least, two or three other times throughout the day. I can't seem to stay away from my YSC (Young Survival Coalition) online support group. I visit the site every single day. It's a place that gives me so much information, as well as tremendous hope and encouragement. These ladies teach me through their experiences how to live each day meaningfully and with so much grace, even while some have exhausted all treatment options. It makes me feel good to even share my own limited experience with cancer with terrified newbies whose heads are still reeling from suddenly learning they have breast cancer. It's the one club we hate to have anyone join, but we're always happy they've found us. (There are some tough days as well ... especially when someone's name is added to the Remembrance Board.) Today, I learned that one of our YSC sisters, who was originally diagnosed in early 2005, discovered she now has mets (i.e., metastatic disease) to her liver, lungs, and bones. She is only 30 years old. Her fighting spirit is AMAZING (particularly since she just learned all of this three days ago) ... and we have every confidence that she will beat this again. Nevertheless, stories such as this do highlight the fact that I will probably always think about cancer and the possibility of recurrence for the rest of my life. Maybe with a number of years out cancer-free, it's less and less in the forefront of one's mind ... but one's life is probably forever changed by having a cancer diagnosis.

People seem to tell me all the time now how inspired they are by the way I've handled this. I have even surprised MYSELF, to be perfectly honest. I have always been analytical and always seem to look for the meaning in life events ... often times reflecting on what is past in hopes of finding some lesson for my future. It has been tempting for me to question how different things would be now had I never used that Pill. But then I am reminded of the poem, The Rubaiyat, by Omar Khayyam (1120 A.D.):

The Moving Finger writes; and, having writ,
Moves on: nor all thy Piety nor Wit
Shall lure it back to cancel half a Line,
Nor all thy Tears wash out a Word of it.

[Translation: Whatever one does in one's life is one's own responsibility and cannot be changed. What is done is done.]

I know that it is through my practice of Buddhism that I have found a great sense of calm and peace with what is. Afterall, one's suffering or innate, inner darkness is only the resistance to that which is true. And once one truly accepts what is true, one can stop suffering and find a relative state of inner peace to rise above any challenge life may throw in one's way. I try to chant daimoku each day ("Nam-myoho-renge-kyo") because I realize that any obstacle can be transformed through the power of this mystic law. Like a beautiful lotus flower that opens up and blooms, it can only exist and flourish in the mud. So sometimes it takes the mud or messiness of life to appreciate what is truly good and beautiful about one's life ... even if it's not picture perfect. Moreover, even where things are not picture perfect as it would exist in the mind's eye, one can still get everything one wants or needs to be happy in this lifetime.

I have often joked that I am a bit of a closet Buddhist. I am not ashamed of Buddhism in any way ... in fact, it is the one aspect of my life that very much gels with who I am and what I believe about the world and how world peace can be achieved. However, I have not always openly shared my practice with others because sometimes it has seemed too difficult or abstract to explain.

[It's not that I have rejected my Judeo-Christian roots or beliefs in its entirety ... but admittedly, I always had a difficult time accepting various interpretations of God's word and even more so with the way I was indoctrinated with the concept of God Himself. It never made sense to me that God was punishing or intolerant of certain people because they did not accept or practice certain religious tenets. I don't believe in a place called Hell where there is fire and a devil with a pitchfork ... hell is right here on earth. And to me, God is not found only in one book or place of worship ... He is everywhere, in all things, including those songs that come on the radio and speak to our very situation, and even in the people we seem to meet at random. If we are made in His image and likeness, then God resides within each of us as well. Hence, the concept of attaining Buddhahood and becoming a Boddhisattva or "enlightened being" free from the coils of suffering. In fact, Jesus was such a Boddhisattva, in my humble opinion. There are no pure coincidences ... all things happen for a reason. And God is as much the observer as He is the creator ... we all have free will to make choices that determine our path. And where the spiritual lessons are not learned in this lifetime, we will repeat these similar lessons in subsequent lifetimes until we finally learn them. We create karmic causes through our thoughts, our words, and our deeds. Every cause has an effect ... so we better make good causes if we wish to be happy. This is what I believe.]

Of course, it has always seemed easier to share my practice with people who are already open to Buddhist philosophy or who "get it" anyway. Some people I know seem to have very advanced souls and live their life with no fear and no regrets. Others seem to struggle within a hellish state of existence, where they perceive things are constantly out of their control and, consequently, they are brought down by their lower life condition. It's hard to see people I care about struggle to find innate happiness when they are not even facing something potentially life threatening ... and yet, in spite of cancer, I still feel happy. This practice has changed my life in so many profound ways and continues to do so. So while I haven't always chanted for things I've wanted with sincere conviction or without any doubt at all, it is my deepest desire to strengthen my practice this year (faith, study, and action) to work toward achieving my life goals. And I believe through my experience and achieving the things I want in this life, it will ultimately plant the seeds for the realization of happiness in the lives of other people. That would indeed be the best birthday wish to come true!

Yes, It's Grrrreat to be a FLORIDA GATOR!!!!

2007-01-09T21:54:00.000-05:00

2007 NATIONAL CHAMPIONS, BABY!

To all the sports pundits and all the naysayers who refused to give the SEC its props ... to all those who said Florida didn't have a chance against a Big 10 school (notwithstanding Florida's competitive and far more difficult schedule this year) ... kiss the ring! Actually, kiss BOTH rings ... since we hold the National Championship Title for basketball as well.

Click here and turn up the volume!
http://www.gatorzone.com/urbanmeyer/

DRUMROLL, PLEASE!

2006-12-28T23:45:00.001-05:00

My genetic test results are back and I am ........... BRCA NEGATIVE! That means I do not carry the breast cancer gene mutation (BRCA1 or BRCA2). But I KNEW THAT! I've been saying it over and over ... and I'll say it again ... BIRTH CONTROL PILLS CAUSE CANCER! I don't need any further scientific tests to confirm the link. I AM THE TEST CASE ... it's sooooo clear and obvious to me. Sue me, if you want to.

I know hindsight is 20/20 and perhaps it's not productive to focus on "what was" or "what could have been" ... but it makes me pissing mad that so little attention is given to the dangers of the Pill. While I well understand the fear such a full disclosure could pose for the women's movement, reproductive rights, etc., young women should still be warned of the potential risks associated with extensive use of synthetic hormones. Indeed, this will now become part of my life's calling ... how can I make my life useful given this experience? I have to find some usefulness in this sh-tty diagnosis. I have my good days (which is most of the time) ... but I do have some bad ones as well. Today, I will celebrate that I did not inherit a genetic pre-disposition for breast cancer. And tomorrow, I will work to bring continued attention and awareness to this dreadful disease that takes so much from far too many women and the people who love them.

Girlz, get to know your girlz!

2006-12-14T21:21:00.000-05:00

We all know that breast cancer does not discriminate on the basis of race, religion, financial or social status, or even sexual orientation. Moreover, women are never too young to get breast cancer ... don't let anyone tell you differently.

The current stats are that 1 in 7 women will be diagnosed with BC at some point in their lifetime ... and 1 in 229 women between the ages of 30 and 39 will be diagnosed within the next 10 years. Moreover, there are still a significant number of women diagnosed even much younger than that. Thus, young women need to be especially vigilant in checking their breasts for lumps since annual mammograms typically do not begin until after age 40. Breast cancer also tends to be more aggressive in younger, pre-menopausal women.

Please learn how to do a proper Breast Self Examination (BSE) and then do them religiously! The more often you check your boobies, the better you will get to know them. The Susan G. Komen Web site provides an excellent how-to guide for BSEs. Check this out and get to know your twins! ( . ) ( . )

2 A/C Rounds Down, 2 to Go!

2006-11-29T20:18:00.000-05:00

Had my second chemo treatment on Monday ... so I was able to enjoy my Turkey Day last Thursday afterall! And believe me when I say, I ate good-good! I was most thankful for that. You all know I love to EAT! Don't let the tiny sized girl fool ya.

Here I am relaxing in my fancy chemo recliner chair like a movie star, posing with my genetics counselor, Maxine Chang. I had spoken with her several times over the phone to discuss the genetic testing I was going to be doing before actually meeting her. Imagine my ultimate surprise when "Maxine Chang" wasn't the Chinese lady I was looking for! LOL. (Maxine is Jamaican and her ex-husband is Chinese-Jamaican, hence the chinky last name ... of course, I have license to say this since I am ... eh, hem ... half chink myself.)

Maxine is a great lady just by virtue of her personality, disposition, and concern. But she will probably mean even more to me in approximately 6 weeks when she gives me the GOOD NEWS about my genetic testing results!!! I am wholly confident my blood test will reveal that I am negative for a mutation with 1 or 2 genes that have been strongly identified with breast cancer in recent times (BRCA1 and BRCA 2). For starters, I am unaware of anyone in my family on either side who has had breast cancer before me (and there are a lot sisters between my mother's and father's side of the family who have produced a number of female cousins for me). As I am an only child for my parents and my mother passed away at the young age of 41 (when I was 9 yrs. old), genetic testing is important for me ... as well as what it will enable me to share with the female members of my family for their own peace of mind. But this notwithstanding, I've already outlined how strongly I feel this was, in large part, triggered by my prolonged use of synthetic hormones (i.e, the birth control pill -- coupled with never having had a baby which could have created protective properties against developing cancer in the breast tissue and milk ducts). So I remain optimistic my diagnosis will be of no consequence to my family members.

Nonetheless, if (by some remote possibility or freak of nature) I should test positive for a mutation of the BRCA1 gene, it may mean that I will be faced with an 85% risk of developing cancer again in the contralateral (or other) breast before the age of 70. With this increase in odds, my doctors would at that point strongly suggest I consider a bilateral mastectomy (which includes prophylactically taking off my good breast) to thwart the chance of a recurrence. Of course, they do offer various types of procedures for immediate reconstruction as a consolation prize ... but still. A very, very tough decision I hope I will never have to make ... I DO LOVE my breasts! I really do ... and it would be very emotionally difficult for me to part with them.

[Note here: This is not just because I may have deemed my breasts to be among my better physical traits (although I don't deny this either), but also because of how I've managed to imbue them all these years in terms of my own identity as a woman ... not to mention, my overriding personal concerns of somehow feeling cheated/robbed of the opportunity to maybe one day breastfeed my children. I know you don't have to give birth to love your child ... and I know this to be true just because I know how deeply I love my sweet, little canine and she didn't even come from my womb. Okay, I realize it's not exactly the same thing, but it illustrates the point. Yet still, some lifelong dreams are very tough to part with in the theoretical abstract. I honestly feel I love my children before they are even here ... so much of what I've chosen to do in my life so far (like waiting for marriage to the right person for ME) has been done with the idea of creating a happy, fulfilled, loving environment for them -- in the back of my mind. Having a baby (or maybe even 2 babies, God willing) now seems to mean more than EVER to me, following this ordeal. I certainly don't enjoy the pressure or constraints of time ... ideally, I'd like to have a marriage someday that not only lasts, but one that works (hopefully, before I share with my husband the most precious gift of all ... a new life)! In the meantime, I continue to search for the bigger picture in my own life and try to surrender to this mystical process ... to use my life for whatever meaningful purpose it should have and be. I constantly try to remind myself to pray for God's will and not necessarily my own ... but a girl can still be hopeful, can't she? I know I sound confused, but I'm okay with having mixed up emotions in all of this.]

If I should test positive for a mutation of the BRCA2 gene, it will mean that I could face a 50% chance of developing ovarian cancer before the age of 70. And because, to date, we don't have very good means of detecting ovarian cancer early (as with mammograms, ultrasounds, and MRI's for breast cancer) ... many ovarian cancers are discovered in the later stages (specifically, Stage IV) where it has the potential to become truly life threatening. Consequently, I would be encouraged by my doctors to consider an oopherectomy (i.e., removing my ovaries at some point in time). My breast surgeon feels strongly about allowing women of child bearing age to go ahead and have their children and then take them out ... unless there's some indication that they must come out immediately.

Whew! Did you get all that? That's heavy, ain't it?? I do put this out of my mind most of the time ... one day at a time, one day at a time. If I try to bite off more than I can chew (as I did early on with this diagnosis), I will likely find myself with much bigger problems ... like an addiction to Xanax and Prozac! (Which might, by the way, cause cancer. Just kidding.)

Like I said, Maxine and I are going to be great friends ... I just know it! Also, I think it's pretty cool that Maxine said anyone who has had any form of cancer in my family can be tested for free by the same company who will be performing my genetic test. (Myriad Genetic Laboratories is a leading biopharmaceutical company based in Salt Lake City, Utah that holds the patent on this test.) Although there is no known breast cancer that runs in my family, there is a strong history of prostate cancer on my father's side. I wouldn't necessarily expect that to yield a different result for me ... but there may still be a number of distant gene connections that scientists have not yet identified. Something I have to keep in mind, I suppose. My other family members who have not had a cancer diagnosis can also opt to have their blood drawn and be tested for around $385. Oddly, many of my relatives are dispersed in other countries ... Canada, Jamaica, China, France, and Tanzinia. Not exactly sure how this test could be coordinated under these circumstances, but I'll certainly find out.

OH!!!! I almost forgot to share the TRULY GREAT NEWS I received on Monday! Geez ... how could I forget? First things first ... my oncologist measured my tumor just before the second round and it has already shrunk to HALF the original size after only ONE chemo treatment!! Die, tumor, die! Ya hear me?!

The idea is that chemo will continue to shrink the tumor down to almost nothing ... killing any and all rogue cancer cells remaining (most important) ... and, of course, allowing my breast surgeon to excise less of an area around the tumor site and still get good, clean margins (no cancer cells, dead or alive, close the edges) around the excised area ... thereby, ultimately, leaving me with a good cosmetic result!!! (A little less important in the whole scheme of things, but I already told you I love my breasts .... right?)

Remember all the complaining I did about getting Ativan (the anti-anxiety med) in my I.V. the last time? You know, the one that left me feeling drowsy and out of it all day ... well, I chose to get again after all of that. Apparently, it has anti-nausea properties that I didn't know about as well. Bottom line ... if it's a toss up between feeling sleepy or feeling pukey, I'll take sleeeeeeep anyday!

So here I am again feeling nice and high, once the Ativan started to take effect .... mmmmmmm ... lah-dee-dah:

The red stuff you see running through the tubes into my arm port is A/C (Adriamycin and Cytoxan). This is the chemo combination that is working to kill the shell of the tumor ... the next drug I will get in a couple of months (Taxol) will destroy the residual cancer cells inside of the tumor.

Below is what my t-shirt says close-up ... in keeping with the whole movie star theme, that is:
But this will actually be me, a REAL MOVIE STAR, when I am finally DONE with chemo!!!! Move over, Lucy Lui! (Tee, hee.)

Hair Today, Gone Tomorrow

2006-11-22T22:59:00.000-05:00

We interrupt our regularly scheduled program to bring you BREAKING NEWS!!! My very best girlfriend, Carmen, finally had her baby girl (6 days past due) this evening at 7:16 p.m.!! Congratulations, Carmen and Maurice (Mum and Pop)!!! Sydney Jade Hinds weighed in at 8 lbs., 1 oz. (whoa!) and has a full head of dark, curly hair .... apparently much more hair than me now. Hoody-hoo!

M'kay, now back to the show ... although this MAY not be for the faint of heart. (smile) I've actually had more than enough time to make peace with the idea of losing all my hair for the next several months while I undergo chemo. Like everything else about this experience, once I'm able to digest any perceived bad news, I manage to quickly put it behind me and keep it moving. So I was very proud of myself that I shed not one tear over any of this today. Not one ... just like a big girl!

Everything I'd read and everyone who had been here before told me I should expect to have a tingling sensation in my scalp and clumps of hair falling out approximately 14 days after the start of my first treatment. So when last Thursday (the 14th day) came and went, and my head/hair/scalp appeared to be doing nothing out of the ordinary ... I was elated. In the words of Tony the Tiger, I said, "Grrrrrrreat!" Maybe I'd be lucky and my hair would just thin, not fall all the way out -- as some who wanted to be hopeful for me had suggested. Well, it was really wishful thinking ... and deep down, I knew it all along. The following day, I got up, got dressed for work, took a brush to my hair, and noticed whole strands were coming out in the brush. It was so surreal, especially because I otherwise felt entirely normal. Since then, I had brushed it verrrrrry gently and pulled it back into a ponytail or bun each day. I managed to go to a wedding on Saturday, hang out with my Sweedy on Sunday (had the best mango martinis too!), go to work the next 2 full days ... all with that same ponytail/bun seemingly in tact! (In truth, my hair was shedding and tangling profusely with every passing day ... yeesh.)

But today was absolutely the last day my hair was able to hold on. I could just tug at a strand anywhere on my head and it would come right out. Easily, I could have pulled ALL my hair out my head with little or no effort. Fortunately, the hair replacement system Mario Mazza of Couture4Cancer had ordered for me was finally here! So off I went to Mario's salon in Jupiter, FL (approx. 1.5 hours away) to have him shave my hair and give me my new Couture4Cancer look. Mario colored my new hair with really beautiful highlights and his lovely wife, Donna, cut and styled it for me.

I had really wanted to donate my hair to Locks of Love (a wonderful not for profit organization that provides hair prosthetics to children with long-term medical hair loss) ... but I waited too long to cut my hair while I held out for my hair replacement ... and then my hair was simply too matted, and not to mention unwashed, to be of any good use.

But here's the new (temporary) me ... both before and after ...

hold onto your hats ... get ready ...

Ta-daaaah!

Do you know my parents were going to name me Adrian if I had been a boy??? Adrian Coke?? Mmm, I don't know about that one. I'm looking at these pics thinking I might not have been halfway bad looking for a boy ... at the very least, I don't have a pointy, cone-shaped dome. But it certainly would have sucked to have only been 5 ft. tall and bald headed with a corny name like Adrian, trying to get some hot chic to dance with me. (Hope I've offended no one here .... but heck, these are just my honest, shallow thoughts.) Okay, so I digressed.

The best way to explain this hair system is that it is essentially like a wig ... only it is custom made with human hair to match the texture and color of my real hair. The hair apparently comes from India, Pakistan, and Indonesia ... donated by women as a cultural practice when they get engaged and cut their long hair. Hmm? (I just might have to google that and do a little Nancy Drew sleuthing of my own ... curiosity has the best of me now.) Anyways, the scalp part of it is very, very thin ... it mimics the first layer of skin and looks much like a real scalp ... it can be parted anywhere, for instance. It is then affixed to my head with surgical bonding glue that lasts 6 weeks ... then I just go back for "maintenance." I should be able to wash, blow dry, flat iron, swim, jump out of airplanes, etc. with this hair and it should not come undone.

Mario wants me to try it out for one week with just the strong adhesive (no bonding glue) for now ... he will then make any adjustments I want before gluing it down around my hairline. I can already tell I want him to move it further down on my scalp ... it's set a little too far back right now. I feel like I'm going to break into song with an old Sade hit .... "Smooth Operator." (But then again, I could also pass for Susan Taylor's little sister.)

Scolded like a 4 year old today

2006-11-09T17:54:00.000-05:00

So this is what I was thinking I wanted to do (in my mind) to try to make my chemo nurse smile today. Anything to get the heat off me ... geez. I got a real scolding today for not taking my medication as prescribed. Whoo hoo!

First, a little background. You should know that I have been given more prescriptions for things to take in one sitting than I've ever had to take in my entire life! Most of it is anti-nausea medicine (Emend, Decadron -- a steroid that can cause weight gain ... boo, hiss, boo ... and Zofran). I'm supposed to take these meds the day before, the day of, and then up to 3 or 4 days after each chemo treatment. Okay, so I did that! But I also have prescriptions for a drug called Compazine which I can take as needed (but I hear it makes you very sleepy) and Nexium (the purple pill for acid reflux). Well, I haven't touched the Compazine or Nexium because I didn't feel I needed it. Especially the Nexium ... I haven't had any acid reflux or heartburn to date, so why praytell should I take it??

Mayra, my nurse, asked me today if I'm taking all my meds and I told her just the ones I had to before and after my first treatment. She asked about the Nexium and when I said no, her head shot around and she damn near had a conniption (sp?) ... you know, where someone gets so angry it appears their face is slowly starting to slide off. I offered up a meek explanation that I really don't like taking pills, especially if I don't really need them. Well, apparently she feels I NEED it ... AND I have to take it EVERYDAY until I finish with chemo. That totally sucks ... too much of anything, everyday can't be good in my view (unless it's mindless, personal e-mail). Chemo does a good job on killing bad cells, but it also kills your good cells ... among them, like the ones found in your gastrointestinal tract, the esophagus, and inside of your mouth. (That's why they warn about guarding against mouth sores ... which I also haven't had.) Well, who knew?? Mayra said she explained this all to me during my chemo education session with her weeks ago ... and I know she probably did, but there were so many other things on her list for me to do ... including but not limited to my use of new toothpaste (Biotene), new mouthwash (also Biotene), Activia yogurt (to line the intestines with good bacteria), tea tree oil (for my nailbeds), stool softeners (haven't needed that, thank you), Immodium (no, to that as well), etc., etc.

So I opted not to take the Nexium. Shoot me, okay? And even though she's instructed me to take it from here on out, I still feel ambivalent. WHAT IF NEXIUM CAUSES CANCER???? Afterall, how much has Nexium been studied and how many years out?

By the way, off topic for a sec ... have I said I think my 15 year continuous use of the birth control pill caused or fueled my cancer?! And don't poo-poo me ... all that ying and yang about studies showing no link between the pill and breast cancer ... studies sponsored by whom exactly? Which drug companies? Well most notably, the Mayo Clinic just came out with this recent report, suggesting women who have had extensive use of the pill who have also never had their first full-term birth prior to the age of 30 are at a 44% greater risk of developing breast cancer ... HARK!

http://www.mayoclinicproceedings.com/pdf/8110/8110a1.pdf.

A new study from the Mayo Clinic has concluded that there is "a measurable and statistically significant" connection between the pill and pre-menopausal breast cancer, re-enforcing the recent classification of oral contraceptives as Type 1 carcinogens.

The study found that the risk association was 44 percent over baseline among women who had been pregnant who took oral contraceptives prior to their first full-term pregnancy has been, to a large degree, ignored by many media organizations.

The report, "Oral Contraceptive use as a Risk Factor for Pre-menopausal Breast Cancer: A Meta-analysis," was authored by Dr. Chris Kahlenborn of the Altoona, Pa., Hospital's internal medicine department and others. Kahlenborn said the results mean that, following standards of informed consent, "women must be apprised of the potential risk of pre-menopausal breast cancer prior to commencing drug use."

The study, which is available online through the Mayo Clinic or at the Polycarp Research Institute, is a meta-analysis of that sometimes-fatal link.

Dr. Kahlenborn focused on the younger, pre-menopausal women who had been on the pill before having their first child. He found 21 of 23 studies showed a connection between the pill and cancer, something that certainly should be alarming women.

However, as Andrea Mrozek, manager of research and communications for the Institute of Marriage and Family Canada, noted in an article. "Perhaps it is because the pill has long been the darling of feminists – a veritable icon of female empowerment. In some circles, suggesting the pill might kill you is seen as tantamount to issuing a press release that women belong in the kitchen."

So back on topic ... the one good thing that happened today is that I didn't need that Neulasta shot to bring up my white blood cell counts! (This is a shot you're supposed to get the day after chemo that can cause severe bone pain. My onc said I might not need it for the first treatment, and she gave me a choice about it. So you know what this stubborn patient chose, right?) My counts were in fact a little lower today (they're supposed to drop between day 7 and 12), so chemo is indeed doing its job ... but they were still within normal ranges to get around the shot ... yahoo! (It didn't even matter to me at that point that they had to prick my finger twice because my blood coagulated too fast in the test tube the first time.)

P.S. -- Ed Bradley of "60 Minutes" lost his brave fight to leukemia today at the tender age of 65. Such a classy, great journalistic icon ... he will be sorely missed! Rest in peace.

The Bionic Woman

2006-11-06T12:40:00.000-05:00

Arm Port Photo ... stitches come out tomorrow!

First Day of Chemo (... a piece of cake)

2006-11-03T12:36:00.000-05:00

Well, not quite as sweet ... apart from the slight metal taste AC (Adriamycin and Cytoxan) left in my mouth right after, it was more or less a piece of cake yesterday. I forgot to take a pic while sitting in my fancy recliner chair hooked up to the tubes ... so instead, I've attached a picture of my arm port through which I will get my regular chemo infusions. I had the port placed 4 days ago and it still looks a little bruised and nasty, but it's not painful and it gets better with each day. It sort of feels like having a small watch battery on the inside of my upper arm ... as a kid, I always wanted to be the Bionic Woman ... so now I have back-up battery power! I will have my stitches out next Tuesday, Nov. 7th. Normally, the port is placed in your chest and they make a slight incision in your neck as well to feed the catheter ... I politely declined and insisted they put it in my arm instead. No, I haven't been the easiest patient. Would MUCH rather have a small arm scar to look at than a chest scar. Call me vain ... but I live in Miami where spaghetti string tops and strapless dresses are all the rage ... year round!

I was unsuccesful in my attempts to have my oncologist switch me to a different chemo cocktail ... one that would not include Adriamycin which can have potentially taxing effects on one's heart function, causing permanent cardiac damage in some people. I was assured that age is the biggest risk factor and with me being so young (yes, still young by oncology standards), I should tolerate it well. My MUGA scan (which tested my heart strength) was at baseline 67% ... sounded like a D- to me, but they look for your heart function to be betwen 50 and 55% normally ... so my heart strength is actually pretty great. I will get one of these scans every 3 months to monitor me closely.

My oncologist walked in yesterday, jokingly addressing me as "Doctor" since the day before I faxed her a long cover letter along with several power point slides from a recent clinical trial presentation held in San Antonio. At that conference, they outlined the results of a study performed over 2 years which showed women who were co-amplified (or tested positive) for a protein called Topo-II had a much better response to Adriamycin than did women who were Topo-II negative. My breast surgeon recently used me as a guinea pig (since the Topo-II testing is not routinely done) and discovered that I am Topo-II NEGATIVE. On that basis alone, I felt I was a much better candidate for another chemo drug called Carboplatin which does not have carry any risk of cardiac toxicity like Adriamycin. Still, my oncologist wouldn't go for it and even presented my case with this finding to Dr. Howard Burstein, a famous oncologist with the Dana-Farber Cancer Institute in Boston. He agreed with her that because of my "young" age and the fact that I am being given chemo in the neo-adjuvant setting (meaning BEFORE any surgery), that they must use the most aggressive, active agents that we have today. The clinical trial I discussed before was focused on women who had already undergone surgery first (lumpectomy or mastectomy) followed by chemo. I felt better after our talk ... I just really needed to hear Dr. Perez, my oncologist, justify to me one final time why I had to have the chemo cocktail which included Adriamycin. She did agree with me that the recent identification of the Topo-II protein will provide some future implications in the advanced treatment of breast cancer, but more empirical data is still needed ... and we only know what we know today, so she's sticking to the protocol.

All the infusion nurses at my chemo center are GREAT. Really lovely and fun ... they kinda remind me of ... well, ME! Ha, ha. They gave me nice, heated blankets to keep me warm and make me feel quite at home. I think I kept them entertained yesterday ... the Ativan (an anti-anxiety med) I was given through my IV probably had a lot to do with it too. I tried to order a French Martini with a splash of sweet and sour as my first chemo cocktail ... but they weren't going for it ... so instead, I got a bag of saline to flush my port first. Not quite the same, but hey. Also, the Ativan left me with a tired, drunk feeling ALL day long (practically all night too). Just wanted to sleep, sleep, sleep ... and I barely remember phone conversations I had later on. Just bits and pieces. I think I'm going to decline the Ativan next time ... why have it if I'm not even feeling anxious??

Just glad there's no nausea or fatigue today. I have been staying hydrated and eating well ... fruits, protein, veggies, and yogurt (to keep good bacteria lining my intestines) ... just trying to stay ahead of any potential nausea, diarrhea, and constipation. So far, so good. I hope chemo is working on killing the BEAST though! I decided to stay home from work today ... for no reason at all. Just figured I'd make it a long weekend. (tee, hee) Plus, I really want to go vote today and take advantage of shorter lines before Tuesday! Remember, if you haven't voted, you have NO right to complain. Stepping off my soapbox now.

Sept. 13th ... my own 9/11

2006-11-01T17:19:00.000-05:00

I started this blog so that all my earth angels (friends, family, and even strangers) can follow me as I journey through Cancerland. Anyone who knows me knows I love to travel, but I really didn't sign up for this trip! (Had a much better time in Asia actually.)

This first post will give you the skinny on how I found myself here:

My primary doctor is a huge advocate for early detection and had mentioned almost 2 years ago when I was 35 that I could start going for yearly mammograms. I left her office that day forgetting to have her write the script, but I must have thought, 'No big deal. I'm not at high risk ... I'm still relatively young and breast cancer doesn't run in my family anyway." Nevertheless, I pride myself on staying on top of my health so when I saw her again this year in May, I asked her about finally getting the prescription. I put it in my purse and left.

But life gets in the way ... I was busy ... I thought from time to time, 'Yeah, I really do have to schedule that thing. But where exactly do I go for a mammogram? How do I schedule that? Just one more thing on my list of things to do. And will it HURT? Is it pain or just pressure?? I'll figure it out when I have some time to process it.'

In late June, I got a call from a good girlfriend of mine. She was hysterical ... she had just gone for her first baseline mammogram and they found a suspicious mass. They wanted her to undergo an ultrasound just to be sure it was nothing. It was around the time of her birthday and she didn't want to deal with it before her birthday. A few weeks later, her ultrasound revealed it was nothing ... just as we had hoped.

So after walking around with that prescription in my wallet for months, I finally got a fire lit under my ass and scheduled the mammo for August 31, 2006. It wasn't so bad ... not painful at all. The very next day, my doctor called and left me a stoic sounding message to call her. It was Labor Day Weekend and my parents were visiting ... I asked Joan, my stepmother, "Why do you suppose my doctor called? Think it had something to do with the mammogram? Is that usual, they call you the very next day??" It concerned me when Joan said they usually write you a letter telling you everything was fine ... but I couldn't speak with my doc until Tuesday.

Tuesday afternoon ... Dr. Morrison called back: "Camille, I really hate doing things like this over the phone ... this doesn't look good. They found small calcifications on your films ... it looks suspicious ... especially because you're so young [note: this isn't necessarily how my gynecologist looks at me when I say I want to have a baby someday]. So I want you to hurry and have them schedule you to take enlarged mammogram views, do an ultrasound, and a possible stereotactic (needle) biopsy. This week if possible, okay?"

If I was a cartoon, you would have seen my eyes dilate like big swirled lollipops and stars would have been spinning over my head!! WHAAAAAAT?!

September 13th was essentially my own 9/11. I had my boobs smashed like pancakes for the enlarged views ... had an ultrasound tech continously roll the probe over the side of my left breast, causing me great discomfort ... and then a large needle was stuck into my boob with a loud vacuum sounding in the room to pull some tissue for pathology. Hey, who said a tumor isn't supposed to HURT?! The radiologist confirmed I had two small tumors sitting side by side at the 3:00 position, measuring together approximately 2.5 cm. (Not exactly a tiny tumor, but not massive either.)

Fast forward ...

These last few weeks have been filled with various surgeon consultations, scans (CT, MUGA, PET, etc.), blood work, meetings with my oncologist, more appointments than I can tell you about. I have to keep a notebook holding all my appointments/research/info in one place to keep it straight in my head. The first few days I lived with my diagnosis were dark ... not because I ever once thought this would kill me ... I was just possessed by all the worse case scenarios. Nothing was more important to me than maintaining my fertility, my breasts, and my hair ... all in that order!

I found incredible support from some AMAZING women in my online support group: www.youngsurvival.org. Without them, I no doubt would still be a complete basket case ... two days of reading through their encouraging posts, detailing their experiences, and I was ready to fight this beast! I went through all the stages of grief very quickly ... shock, anger, denial ... and I've surprised myself by how easily I've been able to move into a pure state of acceptance. I figure if I didn't inherit this (and I'll be doing genetic testing soon to be sure), then I know my life and this experience is being used to teach me something spiritually. And if it's not a lesson for my own life, then perhaps it's a lesson for someone else's ... someone around me whose life I touch. Maybe both. I only wish if God wanted me to get closer to Him, he would have just written me a letter! (Tee, hee ... kidding.)

Tomorrow is when the real party starts! I am going to start my first of several neo-adjuvant chemo treatments. Breast conservation is important to me ... so chemo will provide the best opportunity to see if it will work (my body is the lab) and it will also shrink my tumor significantly ... maybe even down to nothing. What follows is a lumpectomy 6 months from now, radiation, and then a brief period of hormone receptor blockers because of my estrogen dominant status. I am a bit nervous because I truly don't know how I'll respond ... everyone does differently on chemo. One thing for sure is I am going to lose my hair. I've accepted that too ... but not with dignity ... I'm cheating ... I have a hair replacement kit ordered for me already! (Got a chic wig styled in a Chinese chin-length bob as well ... but I'm hoping I won't have to use it.) Click here: www.couture4cancer.org. Mario Mazza is just one of many earth angels in my life these days.

I have truly been overwhelmed by the genuine outpouring of love, concern, and support that I have received from so many people these past couple months. I never imagined I mattered to so many people. It really chokes me up sometimes ... but it also highlights what I've always believed ... that when you boil life down to its bare bones essence, there is NOTHING more important in this world than loving and being loved by your family and friends. Absolutely nothing!