Small Victories

  There is very little about what I am dealing with now that is similar to what I went through in 2010.

  Almost four years ago, I was told I had breast cancer.  I was prescribed the "full menu" of treatment. I had some really rough patches through my treatment, but knew that there was an end in sight.  I dug in and fought and felt in my heart that if I listened to my doctors, went to all my appointments, and did what I was told, I would eventually find myself in remission.  For a while, things looked good. I referred to myself as a "Breast Cancer Survivor," and every Spring at the Komen Race, proudly don the pink "Survivor" shirt.  I was sometimes only reminded of my recent history when it came time to see my medical oncologist, Dr. Smith. 

  These days, I am living blood test to blood test, and scan to scan. I have really struggled with the recent realization that there is no end in sight.  I am hopeful that we keep this under control and can always get the better of the tumors, but I don't know if that will always be the case.  It's kind of heartbreaking to realize your body is betraying you, and robs you of a blissful ignorance that many people seem to be walking around with.

  On my recent checkup with Dr. Smith on February 12th, I asked him when he would think my current treatment wasn't working, if we might need to change The Plan.  He said if my tumor marker blood test went up to 750 we were fine (my last results were 619). If it hit 850, he would be worried and we'd need to change The Plan.  I took a deep breath, figured we had a good 100 points to play with, and said a little prayer that he wouldn't get "worried."

  The next day, the 13th, was when I was supposed to call to get my results. That was the day of Washington's "storm" so Dr. Smith's office was closed.  I took a moment during a typically chaotic Valentine's morning to call for my results.  It went up only nine points. I was wished a Happy Valentine's Day by Ellen the nurse, and loved hearing her say, "See you in a month."  I stepped into the little closet behind my concierge desk, and wiped away a few tears (yes, everything is still making me cry). 

  On my way home that afternoon, I started realizing that life now is not just going from blood test to blood test and scan to scan. Now I would focus on the smallest of victories, and try to cram as much fun as I can in between.

  Things that made me happy this week:

--Thursday February 13th marked fifteen years since I started working at my first Concierge Desk. I am so lucky to have a career I still love.  A few special people selected, trained and looked out for me. I am blessed to now have a network of friends and colleagues all over the globe that still look out for me.  This is me with Marc and Gideon (my first mentors) in 1999:

  And here I am at my desk on Valentine's Day this year:

--After an exhausting and productive February 14th, I went home happy to have made so many guests happy.  I love the shared challenges my colleagues and I have on this date. Inauguration, Academy Awards, Chicago Marathon, any number of crazy dates "Across the Marble" all over the U.S. and the world are unique to our locations. It doesn't matter where you work in the world--people are still going to need rosesrosesroses, require last minute dinner reservations, and want help making memories.  "The Big Guy" worked 3-11, so I waited for him to get home for a "Date Night In":

  We sipped champagne and toasted Small Victories.

--My Mother's sisters, my Aunt Joan and Aunt Linda are coming to visit me next month.  This is Aunt Linda with "The Big Guy" right after our wedding in 2009:

  They live in New Jersey and I don't get to see them often. I'm looking forward to a little early Springtime sightseeing and reconnecting with them.

Stay Warm,

CVZ

How am I doing?

Since it has been almost four weeks since my surgery, and two weeks since I've returned to work, I've figured it is time for an update.

I am taking the Letrozole every day, and have had injections twice now, with the goal of shrinking the tumors.  I had to work after my injections last Friday, and found myself to be worn out so am going to try and take off on injection days.  I go back to my oncologist on February 12th for my one month check-up. We are hopeful that my tumor marker numbers will start to drop and I can breathe a little easier.  

Returning to a job I love has done me a lot of good. It takes my mind off my personal challenges and helps me to focus.  Getting to take care of my guests, and being welcomed by some amazing colleagues have been personally really rewarding for me. Thankfully, my first day back--January 20th was quiet at the hotel, because at the end of the day I was still exhausted.  I was in my Eagles pajama pants by 4:30 that day!

I am sleeping better now than I had been a week ago. I try to not let my head hit the pillow until I am really ready to turn things off, and stop worrying about my health (at least for the evening).  

I am making plans for travels in 2014, but made a tough decision. I won't be attending the Les Clefs d'Or Pan American Congress in Los Cabos later on this Spring. I will definitely miss representing my hotel and seeing my friends and colleagues from the U.S., Canada, Mexico, Brazil and Argentina. However, after traveling the world while attending 11 Congresses, I know the pace of these meetings is too much for me right now.  My wonderful General Manager was totally understanding - he said "It's better to miss one then miss all of them."

Today I had my check-up with my surgeon. She said I am healing well, and sent me on my way.

Things that made me happy today:

--We had a little break in our awful

Winter Weather yesterday, and saw temps in the 50's.

--The Big Guy and I had a fantastic dinner last night at Joe's Seafood, Prime Steak & Stone Crab.

  We enjoyed delicious dishes like this while watching the first half of the Super Bowl. 

--My cousin Tom sent me pictures from my 3rd Birthday Party:

  It's hard to believe we were all so young once.

  And cute!

--Today I realized that pitchers and catchers report to Spring Training in 10 days. Bring on, Baseball Season!

Stay Warm,

CVZ

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.