A shot in the @$$, fighting cancer one cheek at a time

  Today I had another appointment with my medical oncologist, Dr. Smith.  He gave me my prescription for Letrozole and said start taking it right away.  Dr. Smith also said he wanted to try to shrink the tumors by giving me shots of Faslodex, one shot in each buttock, at first every two weeks, then monthly. 

  I asked when we could start the shots, and he said how about today. I said "Let's do it. If I have to shell out my copay, let's get the most out of these appointments!"

 Minutes later, a nurse came in to give me the shots. She told me to lean on the opposite leg when she gave each injection, to give more "cushion for the pushin'."  I said not to worry on the cushion front. She said that the "skinny girls" don't have anything to prevent it from hurting.  Silver Lining, anyone?

  Well it did hurt a little. But, I can get used to this.  Also, I felt like I was taking a positive step.

  I made an appointment for Friday January 31st for another set of shots. I took my Letrozole to get filled.  Things that made me happy today:

--The Letrozole cost me $8 (I was afraid of some exorbitant amount).

--Two good friends from work came to visit me this afternoon.

  As you can see, I had a lovely time with them.

--My cousin Jen called me today, and I don't get to talk to her all the time.  This is us on my Wedding Day:

--Friends of mine went to Philadelphia last weekend, and brought me my favorite cheese from DiBruno Brothers, Prima Donna.  I am home watching television and enjoying one of my favorite foods.

Happy Weekend, Everybody!

To Clinical Trial or not to Clinical Trial, Or I Am Not A Number

  Today started out lovely, peaceful and relaxing. I had nowhere to be until 2:00 for my haircut. I stayed in bed, listening to Howard Stern and reading the Washington Post. 

  At around 10:30, I received the call I had been waiting for. A nurse wanted to do a quick medical history (not always so quick with me) and see if I would qualify for a clinical trial. My wonderful medical oncologist Dr. Smith wants to put me on a drug called Letrozole to try to shrink the tumors in my liver. I've been not-so-patiently waiting for a call from the Clinical Trial, to start taking an experimental drug along with the Letrozole, that is supposed to enhance the positive effects of the Letrozole.

  After 40+ minutes of rehashing my ailments and my late mother's ailments, I was told they would be in touch if I was indeed a candidate for the study. The nurse was lovely, but spoke of additional tests before any pill would hit my mouth "Two Weeks, Three Weeks..."

  I had already been anxious about getting started on treatment. My January 10th oophorectomy was already part of my treatment, and supposed to help shrink the tumors. My tumor marker blood test, the one that jumped some 350 points to 400 (which is what led us to my diagnosis last month), has been nothing but going up since last month.  On January 3rd, the number jumped to 500. Yesterday, they told me the blood they took on the 14th was 619.  I seriously started to wonder if the cancer was totally overtaking my body. 

  Yesterday at 4:30, I decided to ask anyone that might still be in Dr. Smith's office how concerned I should be about the escalating numbers. I walked into the office and asked if anyone might still be in to answer my questions. Suzie, Dr. Smith's fantastic Head Nurse, came out to talk to me for at least ten minutes.  She told me I just had my surgery, and they weren't concerned about the numbers.  What would be alarming would be if the numbers doubled, and I was nowhere near that.  I left Dr. Smith's office feeling calm, and slept better last night than I had in ages. 

  This morning, after I said goodbye to the Clinical Trial nurse, I thought about a few things:

--the pace of the clinical trial was concerning me

--I hated the thought of additional tests at another hospital, and either not qualifying or ending up with the placebo.

--I have the utmost faith in my medical oncologist, and after my "drop-in" yesterday, I was touched by the kindness of his staff.

  The phone rang again and it was another nurse to schedule me for an appointment with the Clinical Trial. I thanked her but said I was no longer interested in participating in the Study. Then I called Dr. Smith's office to tell them I was not pursuing the study, and wanted to get started right away on the Letrozole. 

  Two hours later, Dr. Smith called and asked me what changed my mind. I told him the pace was bothering me, I didn't want to be a number, and if I had to make several trips to Georgetown, I would prefer a spin through Kate Spade, a cocktail, and to look at the Potomac. He said he was happy to treat me. I told him I was happy to have him treat me.

  Other things to make me happy today:

  I love my new haircut. Brenda at PR at Partners Mazza Gallerie is a joyful, super-talented bundle of creativity.

  My fellow Board Members of the Washington Area Concierge Association sent me and The Big Guy a delicious Pete's New Haven pie for dinner tonight.

  Today I have felt happy and more empowered than I have for a long time.

Take my ovary, please!

  So the day after tomorrow, I have to go back to Sibley Hospital for an outpatient surgery. They have to remove my right ovary and Fallopian tube.
  The left one was removed when I was 19 and diagnosed with clear cell ovarian cancer.  I begged my gynecologic oncologist at the time to "scoop me out completely" as I so eloquently put it.  He said that since I was "still of childbearing age," he couldn't do that. I remember telling him that I was already pretty sure I didn't want kids, that I just wanted to be alive for a long time. And even if I changed my mind, I had a feeling that my body just didn't respond well to ovulation, and I was sort of terrified of being pregnant.
  Fast-forward 19 years, and my breast cancer came back. It's funny, for the last three years I have been studying my skin around my "foobs" expecting the inflammatory breast cancer would only come right back in the same aggressive way.  I was completely unprepared for it to spread to my liver.
  Apparently we need to get the remaining ovary out of my body immediately as estrogen is the worst for my cancer.  No chemo needed at this point, I just have to start on a hormone therapy four days after my surgery. Anything we can do to shrink the tumors.  A few things to keep in mind:
--There is no cure for this, but it doesn't mean it is terminal. I see this as the "Wack-A-Mole" of cancer (my Medical Oncologist Dr. Smith liked that).  We may control it for a bit, for several years, "chronic and manageable" yadayadayada, then it may pop up in the liver again or somewhere else.
--I still don't want kids. I'm not mourning the loss of my ability to procreate. If anything, the silver lining to all this is no more periods.
--Right now, I am trying to stay positive and cram as much fun as possible into my days. Goals before I'm 40: I must see Italy, and the Baseball Hall of Fame.  There will be many more goals for each decade but those are my current ones.
  I'm also hoping this blog isn't always so "cancer-y" but that is what is going on right now in my life.

Nipples!

Here is a little tidbit of information about post-mastectomy breast reconstruction that you probably didn't know: when they give you new boobs, they don't automatically come with nipples.

I didn't really take this into consideration when we were preparing for my double mastectomy in August 2010.  I was just completely freaked out at my scarred and slightly uneven sample pictures I was shown at my reconstructive surgeon's. Let me just tell you that the post-radiation pics were even worse--most definitely a recipe for a valium, cocktail, "Dirty Dancing" screening and time on my couch in the fetal position.

So I went about the business of trying to finish my "full menu" as they call it--I dove head first into radiation treatments.  This was a five day a week operation, and my personalized playlist (Madonna, The 5th Dimension and the Great Justin Timberlake) was definitely part of my recovery.

As a result of a crazy infection that hospitalized me during Thanksgiving (let me just tell you that nothing makes you feel sicker than being in the hospital over a national holiday), my one reconstructive surgery turned into three, and my last surgery didn't happen until December 2011.

So now I am finally ready to plan my nipples.  I used to really love the old ones, but everything short of my wedding pictures and a few hot nights in Jamaica make the boobs that almost killed me a distant memory.  If you decide that what are essentially "faux nipples" are more important than no nipples at all (I have always been a glass is half-full kind of woman), You are faced with three options: 1-Skin grafting=same-day surgery, 2-Skin grafting+tattooing, and 3-just plain tattooing.  Given my health history and solemn vow to never go under anesthesia again unless it is medically necessary, I have decided to get Nipple Tattoos. 

  I was able to score an appointment in Finksburg, Maryland with the amazing Little Vinny, reknowned expert on the art of 3-D Nipple Tattoos.  Have a look at the amazing work that this very special man does: http://littlevinniestattoos.net/section/134932_Nipple_Areola_tattooing.html

  I don't know how exciting Finksburg, Maryland is going to be, but I really look forward to meeting the gentleman that has pretty much dedicated this stage of his life to making Breast Cancer Survivors feel good about themselves.  This is just my thing--my husband, "The Big Guy" just wants me to be happy.  I didn't have to get nipples but look forward to the day where I am not nip-free, especially at the gym.

  On August 1st at 3:00pm, please keep a good thought, say a prayer or send good vibes my way.  And any restaurant recommendations in Finksburg are greatly appreciated.

Be Healthy and Happy,

Cynthia
 

Willie

  About a month after my last post, my dear friend Willie got very sick.  He handled his illness with humor and grace and remained the life of the party (even when he couldn't work the room, the room would come to him).  Three months later, Willie died.
 
  So, I have had colossal writer's block, and been busy working, throwing myself a big old pity party, and swimming in grief.  Maybe it was a little survivor's guilt that stopped me from writing, but mostly I just really miss my friend. 

  After my husband, father and best pal of fifteen years, Willie was the fourth person I called when I found out I had breast cancer.  We  laughed, drank, traveled, disagreed, celebrated and talked A LOT.  We spoke so much on the phone that Willie was personally responsible for killing at least one cell phone battery of mine.  He was the Chef Concierge of the Langham Hotel in Boston, so we shared the same profession and often similar hours.  We talked before our Concierge Desks got busy in the mornings so much that I still find myself reaching for the phone to call him.

  Two nights ago, a friend made me realize that Willie would not be happy with this Pity Party, that he would say "Alright, missy--no tears! Keep your chin up, keep going."

  So I am writing again.  I promise my next post will come sooner, and be a little more upbeat. 

  As Willie's outgoing cell phone message used to say, "Make it a great day."  Cheers to you, my dear friend.



Now what?

  After one last surgery, they sent me home with my permanent implants, and a card that names the amount of silicone I possess in each boob.  I went home to read, nap, watch movies and wait to get cleared to return to work. 
  Today my fabulous reconstructive surgeon took the rest of my stitches out, said I could go back to work tomorrow, and that she doesn't need to see me again for two months.  Big Ball of emotions that I am, that's when the tears started.  A cross between a choke up and a mini-sob. 
  Then she told me I can stop wearing my surgical bras, can wear normal bras again, and start shopping for underwires in four weeks.  Although I thought I could order my size, and finally get a nice 36 or 38 C, these implants are kind of like memory foam and you can only request an approximate size.  This requires a measuring session.  I have decided to go straight to Sylene of Chevy Chase for a professional measuring and at least two super-sexy bras.
  Then there is the nipple question: to tattoo or not tattoo?  I don't need to decide until this winter, but am already leaning towards a no-nip future.  It's not like I am a topless dancer.  I have my BA.  It seems silly.  I'd rather save my pennies and get a new tattoo on my left hip, as well as clean up the moon and stars on my right hip.
  At the moment, I'm drinking Champagne with my big funny husband and celebrating a new chapter.  Oh and today is the first day I actually think I can consider myself a "Breast Cancer Survivor."  Big Stuff.  Not as big as my old boobs, but definitely significant.  So raise a glass with me and toast good health, great friends, awesome family, and the 2012 New Boob Tour.

The Next Step

  Tuesday Morning I have my last reconstructive surgery scheduled.  This effectively ends my breast cancer treatments.  This doesn't mean I'm finished, but will finally move from the chemo-radiation-multiple surgeries phase of my life into just checkups. 

  I don't know if they "got it all," and I don't consider myself "cured" or "cancer-free" -- it's too early for that.  Talk to me in five years and we'll see.

  I've been thinking of a lot of people lately, like everyone who have loved and supported me and my husband.  More than anything, I've been thinking how no matter how bad things have gotten throughout this journey, there is always someone sicker than you.  I became acquainted with a lot of women who were sicker than me in the last nineteen months, especially one woman who I met in the Chemo Room.  We'll call her "Vivian." She was fabulous, old enough to be my mother, sweet, and did I say fabulous?  "Vivian" was on her 5th treatment when I met her the day of my first treatment in April of last year.  She called everybody "honey." We talked about food cravings, oncologists, ice cream, wigs, how her son was about to graduate from Medical School and she was so proud of him.  I liked her immediately. 
  I ran into "Vivian" in the Chemo Room mid-June, and was shocked to see her.  "Oh honey, I just had my first radiation treatment today-it was a breeze!" She went on to say how she was starting her second round of chemo that day.  We weren't on such intimate terms that we knew our specific cases, but half-way through my chemotherapy, I knew enough that couldn't be a good sign.  Each infusion day you worry until they tell you your numbers are still good, and on your last infusion, when you get the all-clear, you know that chemo worked and it's time for the next phase.  It was my understanding that more chemo = very bad.  Then I looked at "Vivian" and her flawless blonde wig, and tasteful, perfect makeup.  Then I looked at myself--it was one of those stinking hot Washington Summer days, and I had left my wig at home. I'd coordinated my purple top with a purple & green leopard scarf, and was sporting a little lipstick.  Not bad, but I thought if "Vivian" can turn it out like this in the face of all her challenges, I can certainly make more of an effort when I head out for these treatments.

  I never saw "Vivian" after that day, but I have always made a little bit of an effort--even if I've felt crappy through my own journey.  A little face shimmer, a little Chanel Lip gloss, a little sexy perfume--it definitely "informed my character" and was all in homage to "Vivian."

  Tomorrow, I'll be comforted knowing I have a lot of wonderful people who love me and my husband.  But I'll be thinking of "Vivian" and all the women still struggling through their own journeys.