Hair Today

          

Great news, everyone! After chemo, surgery, radiation and another surgery, the doctors could not find any cancer left in my Sissy.  Fortunately, my mother is in the same position in her treatment. Now both of them have only a few surgeries to go before all this will be an unfond memory.  However, it does make me acutely aware that I’m in 3rd place for treatment completion. Do you think they’ll give me all my chemo doses at once?

All conversations about cancer eventually turn to the topic of loss.  There are so many things you lose from the moment you are diagnosed.   There is loss of confidence, loss of normalcy and sometimes the loss of body parts.  However, I would like to focus on the most obvious loss, my hair.

Six weeks ago I had a port installed. Not my favorite thing.  I will never again allow someone called “Coop” to operate on me. If the nurses don’t call you “Doctor”, then you are not allowed to cut me open.  I’m pretty sure he used a serrated knife he stole from an Outback.

After the procedure, he closed the wound with medical super glue.  Based on the amount of glue I had all over my body, I assume he either let a child close up or tried to do it blindfolded. Maybe a prankster loosened the cap on the bottle and they all had a good laugh when it came pouring out.

A port is a small device inserted under the skin.  Jason wants to see if we can charge our phones on it.  When I receive chemo or fluids they just clip onto the port, and it’s way better than doing it through an IV because there is minimal stabbing.  I naturally have small veins. Chemo makes your veins smaller and squirmier.  At this point in my treatment, I will do anything to avoid someone trying to find a vein. I could do a whole post on people who have done absurd things to me and claimed to be medical professionals.  No, you cannot put an IV into the top of my foot. 

Next stop was my first chemo appointment. It was pretty uneventful. My new oncologist has a lovely infusion suite; lots of windows, big comfortable recliners and flat screen TVs.  Unfortunately the wifi went out and there was no living with Jason after that. 

At first some of the side effects were kind of awesome.  About two weeks after my first dose I noticed I no longer had leg hair! Finally, an upside to this whole cancer thing.

The good times didn't last long. I had a bad reaction to the chemo.  For the last six weeks, I experienced terrible pain. I’ve often described it as having a pointy dragon clawing his way out of my intestines.  It could also be Edward Scissorhands playing charades with some friends made out of broken glass.  We’re still working on fixing that. I’ll post about it when that story has an end. For now, back to the hair.

Jason wanted to be the one who cut my hair and shaved my head. We kept pushing it off, mostly, I think, because we were both worried about each other freaking out.  About two weeks after my first dose, I decided to take a shower before Jason got home from work.  I was shampooing my hair and when I looked down at my hand I saw a palmful of hair.  The average human sheds 100 head hairs a day.  I’m pretty sure I’ve always exceeded that.  This put all previous shedding to shame.

I responded as any normal person would; I started shouting “OH MY GOD! OH MY GOD! OH MY GOD!”  I had to get the soap out, but every time I touched my hair it would come out in large clumps.  By the time I was soap free I had enough fallen hair to make my own family of shih tzus. After I collected myself, I returned to the scene of the crime.  It looked like a Wookie had used our tub for a long soak.  I gathered all the hair up in paper towels and hid it at the bottom of the trashcan.  I didn’t want Jason to think that I had been raising and then murdering woodland creatures. I’ve got a million of them, folks.

The next night in our dining room/barber shop, Jason finally made the cut.  If I can offer some advice, ativan and Cat Stevens can get you through this experience.  As I’ve always said, you can never be sad when listening to Cat Stevens or Van Morrison, especially if you’ve taken ativan.  I think they said something like that on Newsroom. I said it first.

Jason cut off my ponytail first.  It was almost a foot long. I’m donating it to Pantene.  They will make it into a wig and then donate it to the American Cancer Society. Many insurance companies do not cover wigs and a quality wig will cost $300 or more.

I chose Pantene for two reasons.
1. They have never misplaced $6 million worth of hair. Looking at you, Locks of Love.

2. When I went to the ACS office near me, they had no wig options appropriate for a younger woman.  I was disappointed since we could have used a free wig. It worked out for me, because my sister gave me her super fancy wig.  But I couldn’t stop thinking about the next girl who walked in their and faced disappointment. It takes six donations to make a single wig. So if you’ve got a lot of healthy hair, please consider a donation.  Or if you know a heavy sleeper with a lot of healthy hair who’s kind of a jerk…I’m just saying.

After Jason gave me a buzz cut with his beard trimmer, I looked in the mirror and saw Sinead, GI Jane and Lt. Ellen Ripley looking back at me. Well, not literally. That would be super creepy.

I’ve gotten tons of compliments on my new look.  I never know if people are being nice or they genuinely like it.  I appreciate the support either way.  I’m still struggling to find my signature look, so let me know if you have any suggestions.

A lot of the time I just walk around showing my naked head to the world. Not that I leave the house that much.  There’s a part of me that says this is a statement about cancer.  Maybe if chemo patients didn’t hide their bald heads everyone would think about cancer more often. And maybe then they would donate more, or make sure to get checked or volunteer to help patients. I could start a revolution leading an army of bald badasses and change the world.  I could totally use that as a reason to walk around bald, but the truth is, my head gets really sweaty whenever I put anything on it.  Let’s just go with the hero thing.

I started this post by talking about loss, and now I’d like to talk about what I’ve gained since I lost my locks.  I gained a true appreciation for the support system surrounding me.  White lies or not, so many of you have made me feel good about how I look and that helps more than any medication.  I’ve also gained a sense of progress.  In a few months this part will be over and I’ll just have two minor surgeries remaining. 

Less important, but a definite fringe benefit is that I have gained cancer street cred with my shiny melon. Every time we go to a store the staff falls all over themselves to help me.  No longer do I get dirty looks when using a scooter to do my shopping.  There’s something to be said for looking more cancery. Not that I’m exploiting my cancer, but it’s nice to see that so many people in this world are compassionate and kind when they can see what you are going through. 

I hope you all are having a wonderful holiday season. I am truly grateful for all the love and support I have received from you, my friends, family, neighbors and even complete strangers. I don’t know how I would have survived this experience without you. Now get out of here before I start crying.

In Memory of Ezra

When you have cancer, or any serious illness, the universe should not allow anything else horrible to happen to you or the people you love. Unfortunately, like a pleasant trip to the P St. Whole Foods, it never happens.  Four weeks ago, a dear friend lost her husband to a heart attack. They had been together for twenty years, married for ten, and brought two beautiful and bright children into this world. He was 39.

I have not spent nearly enough time with Jill and Ezra over the years. I was one of those obnoxious city dwellers who refused to visit people living in Virginia, despite the fact that their home was less than a mile from my apartment in the city. That will forever be my loss, but I am grateful for the time I did have with him. You only needed to meet Ezra once to know he was an amazing man with a kind and gentle heart. It takes a special kind of guy to spend years coaching a women’s tackle football team. Go Divas!

I’m not worried about Jill because she is one of the strongest people I know. She has been a source of support and comfort for me since my sister’s diagnosis and throughout my treatment.  In addition to her strength, Jill has two incredible families supporting her, Ezra's and her own. On top of that she has every player Ezra ever  coached, men, women and children. Every time Ezra should be next to her, one of us will be there in his place. I cannot fill his shoes, because his feet were like three times the size of mine, but I, and so many others, will be there for her to lean on.

It may surprise you, but I do believe in the possibility of an afterlife. As adults we can choose what we believe, unless you were raised in some kind of crazy cult. I choose to believe that Ezra has not missed a second of watching over his family. I choose to believe that someone so full of life and joy does not simply disappear from the world. I choose to believe that everyone I’ve ever lost is still with me in some way.

We are all so lucky that Ezra will live on within his two wonderful children. The love that Jill and her children share will help them make it through this difficult time. It is completely unfair that this happened to this lovely family. But life is not fair, as we learned from Jim Henson’s seminal “Labrynth.” It is up to us to even the odds by supporting our friends and family in need.

Please consider making a donation to help Ezra’s family now and in the years to come.

http://www.gofundme.com/50h7sg

If you’d like to know more about Ezra and his coaching career, check out this article:

http://www.washingtontimes.com/news/2013/nov/7/loverro-remembering-ezra-
cooper-bright-spot-local-/?page=2

Ladies Who Luncheon

Last week, my mother, sister and I were honored at the Triangle Ladies Power Lunch. Each month at this fantastic networking event, they honor a breast cancer survivor, or shero. Since it is breast cancer awareness month, they decided to go for the gusto and honor three of us. It was a wonderful event and I am so grateful for the invitation. To top it off, we got to ride in a pink limo, they gave us lots of great stuff and my mom bought me a really cute dress that is also a skirt.

I have often struggled with the concept of being a survivor. At what point have I survived? My mother was a survivor for ten years, till she got cancer twice more. And what if I did ultimately die of cancer, would they come take all the presents back? Recently my sister said “I wish someone would just say that it’s over.” My response, both insensitive and full of self-pity was “We don’t get that. The best we ever get is “as far I as I know, I do not currently have cancer. That’s it, for the rest of our lives.”

Surprisingly, and conveniently, I found peace with the term survivor on my train ride to North Carolina for the luncheon. I was lucky enough to be allowed to sit in a reserved disability seat. Just another reason cancer is totally worth it. A woman sat down in the seat across the aisle from me, and read for most of the trip.

I don’t even remember how we first started to speak to each other, but once we did, it only took a few minutes to identify ourselves as members of the breast cancer club. She told me she was a survivor of 10 years, Stage III. She also told me she recognized the bandage I had covering my recently installed mediport for my chemotherapy. We compared treatments and experiences. I told her why I was heading south.

"Yeah, they’re honoring us as survivors. I’m not sure I count yet. I’m not sure when you ever really do."

She responded without hesitation and with the wisdom that comes from being a real grown up, not a 36 year old self-absorbed idiot. I don’t remember her exact words, so I won’t try to quote, but just attempt to capture the sentiment. She explained that being a survivor wasn’t about being done with cancer, it’s about getting treatment, doing everything you have to do to get better, then following up when you’re in remission.

That’s what makes you a survivor, not that you survived it, but that you’re doing what you need to in order to survive.

And just like that, I became a survivor. I am surviving this disease and will continue to survive it until the day I die, which will not be for a very, very, very, long time. So please stop giving me those looks. You know the ones that say "She's so brave..."

My trip to North Carolina was… too many things for me to sum up with any string of adjectives. I spent time with my family, and most importantly my incredible niece and nephew. I must figure out some way to stop them from growing up anymore. They’re quite perfect as they are right now.

I visited my sister’s cancer treatment center, which I confess was just as swanky as she portrayed it to be in all her bragging. I even stole some free medical advice while I was there. I also picked up some port pillows, which you place over your port to prevent irritation from seatbelts, bras, etc. And, in a pinch, they make terrific substitutes for a prosthetic breast.

I even had a chance to visit the Cystic Fibrosis Foundation office where my sister works. First, excellent snack supply. Second, it is amazing that a group of women who deal with such a horrible disease can be so happy and friendly. I can rest a little easier knowing my sister has plenty of other sisters taking care of her.

It was good to be with family again, no matter how much we annoy each other. It has been hard being apart while we all go through this strange and often unpleasant journey.

Below are my remarks from the luncheon. I think this is an excellent way for me to tell you a little bit more about my big sister.

________________________________________________________________________

Thank you so much for inviting us here today. Although I must admit, it seems strange to honor us for getting sick. It seems like you should honor women who don’t get tumors instead.

I have not seen my big sister in six months, after her diagnosis but before mine. This of course supports the theory that she gave me cancer, but I digress. Thank you for inviting me here and giving me an excuse to get on the train. I start chemo in two weeks, so I probably won’t be back again for a while.

My sister, like my mother, has spent most of her life helping others. From her work with Holocaust survivors at the Shoah foundation, to her current position at the Cystic Fibrosis Foundation, not to mention countless other charities she has supported over the years. After all her good deeds, I could not imagine what she had done to deserve breast cancer.

Then a few weeks ago, I figured it out. The night before her biopsy I had a conversation with God. I asked, “Let me have cancer instead of her.” God must have misheard and thought I said “Let me have cancer in addition to her.”

It does not come naturally for a little sister to say nice things about a big sister, but my sister is an incredible woman, an amazing daughter, a wonderful mother and an adequate sister. She has faced this idiotic disease with grace and strength.

The hardest part of cancer is loving someone who has it. The people who really deserve honors and thanks are those who support us, like my father, brother in law and my brother and his wife. And of course the world’s most amazing boyfriend who can’t be here today, family, friends, neighbors and people like you.

Thank you so much for acknowledging my family and our current struggle. And thank you for supporting and celebrating breast cancer survivors every month, not just in October.

________________________________________________________________________

As I mention above, I will be starting chemo soon, November 1. The coming days are going to be extremely busy preparing for this next phase. Tons of doctors’ appointments, tests, and, of course, my birthday party. After much deliberation I decided I am not skipping that this year. Birthdays are way too important to let a slight case of cancer get in the way.

Kids and Kidsicles

On my street there lives one of the most emotionally complex people I have ever met. He’s four. No matter what I am about to say or do, I can never accurately anticipate his reaction. He is incredibly thoughtful and has already mastered the art of changing the subject if someone brings up an uncomfortable topic. A few weeks after my surgery, I opened the door to check the mail in my hot pink housecoat. He smiled at me and said “Yay! You’re all better.” This is my favorite diagnosis to date.

Unlike my doctors, who have occasionally made missteps in my treatment, the children in my life have never failed me and have done more than anyone else to improve my health over the last several months.

The complex little boy has a 9 year old brother, the oldest and, by default, wisest in the group. He is extremely kind and always lets the little kids win. Sometimes we talk about Star Wars and play video games together, when he hasn’t had his video game privileges revoked for fighting with his little brother. When I told him I was going to lose my hair, he suggested a blue wig. He then showed me a picture on a Pokemon card to demonstrate the specific shade he would prefer. A few weeks later, when I showed him my PICC line, he told me I was like Luke Skywalker, when they had to rebuild his arm. I instantly felt much cooler.

Across the street lives a 5-year old who abhors society’s obsession with shoes and pants. I don’t know his last name, but by default it has become Pantalones. He doesn’t speak much English and I speak even less Spanish, so I regularly find myself shouting “S…! Pantalones!” I once saw him come outside completely naked and play with matchbox cars for a solid five minutes. That, America, is the very definition of freedom. Also, I need to learn Spanish. Or at least how to say “Your son is outside naked, again.”

Then there’s the amazing little girl down the street, a very dramatic five year old who is generous with her hugs and her original compositions. I once heard her write nine separate songs about balloons, arguably an album’s worth, in about an hour. When I showed her that my niece and nephew had sent art for my bedroom wall and commissioned her for a submission, she returned the next day with four new pieces for the collection. Most prominently feature purple, our shared favorite color.

Her one-year old brother can make any drug side effect seem manageable when I see his adorable smile and his wobbly walk. He used to have bruises all over his forehead because his giant adorable head weighed so much that it kept falling to the ground when he would try to crawl. His mother says he’s too heavy for me to hold, but I occasionally break the rules when she’s not looking, or sometimes when she is looking.

Then there’s my niece and nephew. I have always doted on these two, but I have to give them extra credit for the last few months. My nephew is 10 and his sister is 5. He’s too smart for his own good and she is a tiny evil genius. When they heard their mother had cancer, the boy was deeply concerned. He explained that while Grammy had a proven record against cancer, 3 and 0, his mother was untested against the opponent. Not exactly the vote of confidence she wanted to hear from her son. Strangely, my diagnosis seemed to ease their minds. Now, as far as they know, cancer is just a thing that happens to grown up women. They even thought it was nice of me to get it at the same time as their mom, so we could do it together. Arguably, these two are handling all this better than anyone else in the family. He now runs around shouting “Off with your boobs” and she is obsessed with breast size, not unlike many other people I know.

Most days, I would rather spend my time with children than adults. They are honest without malice, they ask questions and they can use their imaginations to create entertainment in any situation. Recently we spent over an hour playing a game with a rope tied to a tree. I’m not totally clear on the rules of this game, but it mostly involved either tying yourself to the tree or tying other people to the tree or tying yourself to another person.

Kids don’t want to talk about how I feel, or when my chemo starts or how J is handling all this. They want to talk about flowers and marshmallows and jedis. It would be completely inappropriate for me to give them the daily health update, information, which I seem to randomly blurt out to any adult I see.

My pool of tiny companions is not just limited to the children in our neighborhood. Many of our friends have spawned and we periodically get to see their offspring. This summer we spent time swimming with kids, snuggling and napping with little ones, playing with our cats, Sid and Tupac, and plenty of other amazing and adorable stuff.

Of course, all of this contact with children serves as an obvious reminder of our fertility situation. If we still lived in the city we could go weeks, even months, without seeing a child we knew. Rather than thinking about the possible obstacles we face on our road to parenthood, I take comfort in these moments. I see how much we both love children, which tells me how hard we’re both going to work to find a way to be parents together. This is not bravery or courage, it is denial, but it’s what I’m working with right now.

A few weeks ago J and I completed our second and final round of egg harvesting. We are pleased to announce we have two more embryos in the freezer, bringing our total to 3 kidsicles. We are so grateful that the second harvest went well. Of course it would be great if we had dozens of frozen embryos, but this is what we have and what we have is potentially 3 children. We won’t be pursuing another round because, even with the help of charities, it is really fricking expensive. Besides, I can only put off chemo for so long. Also, if we had dozens of frozen embryos people would be suspicious we were raising some kind of army.

Don’t worry world, you have a few years to prepare before any potential Jason/Beckys arrive. We’ve got some stuff to do, you know, I need to get back to work and get a driver’s license, beat cancer, renovate an entire house and become extremely wealthy. Maybe we’ll even get hitched. Not necessarily in that order.

In the meantime, we’ll enjoy time with the children in our lives, our neighbors, friends and relatives. We’ll focus on spoiling our cats and look forward to the day we become the sleep deprived proud parents with spit up on our shirts. Till then, feel free to bring your kids by for a visit.

Rosh Post

Due to some complications from my surgery I spent a week at the Sibley Hospital Spa and Resort. You're probably imagining this was an unpleasant experience. You're right.

On our way home from the hospital Jason and I stopped at Whole Foods to pick up some traditional Rosh Hashannah food for dinner.  After everything that had happened during the last few days, suddenly the token raisin challah I bought as an afterthought at Trader Joe’s last week didn’t seem sufficient.

Both exhausted, we cleared off the dining room table, picked up the kitchen and began pulling together our dinner. For J, some brisket, matzoh ball soup and a salad. For me, fake chicken nuggets with honey and a latke with sour cream.  And, of course, the round raisin challah.  The one from Trader Joe’s had actually turned to stone, so we dove into the fresh one we picked up today. It's funny how a bite of food can be so familiar and comforting.  The cats were sentenced to an hour in the basement. Their crime? Loving brisket.

This is approximately my 35^th High Holiday Season. Some years I have been surrounded by my extended family, cousins, grandparents, aunts and uncles. Other years I spent alone, too busy or disenchanted to observe the holidays.  Some years I invited my mostly non-Jewish friends to my home and served a Rosh Hashannah brisket or a Break Fast and explained the traditions to a mildly interested audience who were mostly concerned with the wine related aspects.  Yet tonight, sitting with J in our dining room eating reheated store bought Jewish soul food, was one of the greatest holiday nights in my memory.

I think it’s because I was able to appreciate this night for all of the future nights to come. Like a Kleenex commercial or a video for some hipster band (do music videos still exist?), I actually saw the rest of our life together flash before me in a montage.  I saw long tables crowded with plates, children, grandchildren, friends and neighbors gathered around celebrating together year after year.  I could hear my family shouting over each other to be heard as we have for generations and forks clanging against plates.

I saw a grey haired version of myself looking down this long table at a handsome older version of J, smiling at the family we had created. And that’s why he’s not allowed to burp at the table, even when it’s just the two of us.

But in all seriousness… I would like to thank all of you, our friends and family, neighbors and community who have supported our family during these difficult times.  Old friends and new have stood by us and even helped us to stand. If Lifetime made a movie about a woman and her two daughters all facing breast cancer at the same time, nobody would believe it was a real story.  But that’s our story right now.  And while I am often angry at what we are facing, tonight I am grateful. 

I am grateful for all of you. I am grateful that my sister has finished her chemo and is recovering from her surgery.  I am grateful that my mother has beaten cancer for the third time and faces just a few more procedures before she is finished with this difficult journey.  I am grateful that I am home in my own bed, infection free, preparing to meet with our fertility doctor in the morning so someday we can make that noisy family a reality.  And I am grateful that I can now shower without any special equipment, assistance or saran wrap.

I know I glossed over my hospital stay, and maybe I'll come back to that some day. For tonight I just wanted to say thank you.

May you all, Jew and gentile, have a sweet New Year.  And may we all look back on these as the tough times and be proud that we got through them.  

Maybe Baby

About two months ago my oncologist told us, in a not so gentle fashion, that we probably would not be able to have children. I'm not sure he would have mentioned it at all if I hadn't asked.  I found that particularly strange since every conversation we had ever had included my plans to have children.  His treatment plan is for me to start chemo, followed by radiation and then ten years of tamoxifen.  You can’t get pregnant during any of those treatments.  Further, it is likely that chemotherapy will make me infertile. 

He then suggested we freeze some eggs and implant them when the treatment is done.  That is, assuming I haven’t lost my uterus, because tamoxifen often causes uterine cancer.

Here’s an excerpt from that delightful conversation:

Me: My mother had cancer twice after following a tamoxifen treatment.

Dr. K: Well everyone’s different

Me: Not so far in my gene pool

Dr. K: Well there’s no 100% guarantee that any medication is going to work. 

Me: So I should wait until I’m 47 to try getting pregnant so I can undergo a treatment that has already failed the person who gave me half my DNA?

Blank stare. 

J: While we’re on the topic, how do we know if the chemo worked?

Dr. K: We won’t.

J: Excuse me?

Dr. K: We’ll only know if it didn’t work.  If she doesn’t get cancer again, we know she either wasn’t going to, or the chemo worked.  If she does get cancer, well then we know it didn’t work…Now I would love for you to spend some time today getting to know my nurses who will be providing your chemo treatment in the world’s most depressing room….

Me: We’re going home now.

SCENE

Okay, I may have paraphrased that last part, but seriously, a messy room with a semi-circle of old, tan, recliners where sick people sit and stare at each other?  No thanks.

This was one of the darkest moments we have faced since my initial diagnosis, maybe darker. It was like someone pulled the rug out from under us, knocked the wind out of us and a third thing all at once.  I was devastated. But you don’t get to take a break when all this is happening and it was trash night, so we had to rally.  Like everything else since this all began, we took a deep breath and figured out what we had to do next.

Enter Dr. S, or as he is known in our house, The Baby Fairy.  I don’t like to play favorites, but he’s one of my favorites.  Our first meeting with the fertility specialist and magical sprite did wonders for our spirits.  He made it seem anything was possible, like the Willy Wonka of fertility treatment.  The Baby Fairy even got a little sparkle in his eye when I said I was thinking of skipping tamoxifen until after we had kids.  He’s never had a patient do that before. I almost didn't mind what would be the first of an almost daily vaginal sonogram. Sound invasive? It sure is. 

My blood work came back and there was something that should be a .1 but mine was a .03.  That means while most ladies my age can make between 10-14 eggs to harvest, at best I’m making 1-5.  Even the Baby Fairy sounded discouraged.

Despite the diminished odds for success, we went forward with the treatments. Almost every morning for three weeks we got up and drove to Georgetown for my 9 AM blood donation and vaginal sonogram.  Who needs coffee?

Then finally it came time for the harvesting.  For a few nights, Jason gave me injections in my belly, but the last injection was reserved for my tush.  Just to make sure he got it right, the nurse drew an x on my butt that  morning.  Very dignified. As always, Jason was a real champ.  He took it all very seriously and did exactly as instructed.  When he realized a tiny drop remained in the vile, he shot me in the tush again. No mistakes on his watch.

Next there was a huge mix up with my bloodwork. It could be a whole separate entry, so we’ll skip it for now.

The next morning we arrived bright and early for the harvesting.  Every time I utter that phrase I feel like it’s the title to a horror story.  

I put on the gown and socks and the hair thing that makes me look like Toadette. They started the IV and wheeled me into the harvesting room. The Baby Fairy was there with some other people, really rocking out to an 80s station. 

“Bring me a higher love…scooch down…bring me a higher love, woah…legs in the stirrups…bring me a higher love…” And then I woke up.

Now there’s a side to this story I’m skipping, and some day, years from now, when he gets over the trauma, perhaps Jason will tell the world of his experience.  For now, we’ll all just politely pretend that part didn’t happen.

As I mentioned before, I’m not so great at making eggs, despite the fact I make a killer brunch.  Hey Oh! So we weren’t surprised when we learned that they only harvested four eggs. Even more disappointing, after several daily egg updates, we learned that only one embryo had matured.

This was a strange place emotionally. On the one hand, after all the work and expense, one possible shot at a pregnancy seemed like a major let down.  At the same time, it is amazing to think that somewhere in a freezer, 8 tiny cells have the potential to become a little Jason/Becky some day.   Our maybe baby.

Now don’t get me wrong. I haven’t changed my position on choice.  This is totally different.  I don’t think of those cells as a person.  I do however think of those cells as the astounding possibility that Jason and I could someday bring a life into this world. It is the potential that fills me with awe.   

I know what you’re thinking. Becky, you and your family have such good luck, you’ll probably be fine with that one embryo.  Well we’ve decided to hedge our bets and do another round of fertility treatment before starting my chemotherapy.

I would like to give a quick shout out to two groups that made this possible for us. Despite what you may think of Lance Armstrong,  Live Strong is an amazing organization that has helped so many people. A part of Live Strong called Fertile Hope helps couples like us, facing fertility issues related to cancer.  They worked with our doctor to cut the cost of our treatment in half.

The other organization I want to mention is the Walgreen’s Specialty Pharmacy which provided all of the fertility medications for free.  Without Fertile Hope and Walgreen’s, we would not have been able to afford this process, and definitely not twice.  

So that brings you up to speed on one of the major events since my last post.  We have started the second cycle and hopefully Dr. S will take what we learned from last time to improve our odds for this cycle.  I’ll post on facebook when we prepare for the next harvest so you can all make sacrifices to your various fertility gods.

Next time…my new favorite vacation resort, Sibley Memorial. 

What to Expect When You’re Mastecting

We’ve gotten through the surgery and some of the recovery so what have we learned and what happens next?  The first few days were a bit of a blur, thanks to a healthy diet of percoset and valium.

Is it a delightful month of lounging in bed?

No. You cannot sleep on your side, or your stomach, or propped up on pillows.  Your only option is to sleep on your back, arms at your sides, flat as possible; essentially the sleeping equivalent of missionary style.

So recovery is similar to a voodoo induced catatonic state?

No… mostly. It wasn’t all drugs and Brian Wilson impressions. Lots of awesome friends and family sent and brought fun gifts, yummy treats and delicious dinners.  It almost made the whole thing worth it. Almost. 

Is there a special diet?

No. I assumed I would be on some sick people diet of broth and Ensure after the surgery, but I had a healthy appetite and was able to eat normally.  Well, my mom was here, so I was able to eat as much as a Jewish girl can with her mother looking over her shoulder. 

Really? Another chocolate bar? 

Sam and Robin sent us a giant basket of chocolate bars and it would be rude not to eat them all as quickly as possible.

What do you need when you’re recovering from a mastectomy?

My experience is based on a process involving temporary implants that will ultimately be replaced by permanent implants. Yeah, that’s right world, Becky Dansky has breast implants. If you are having a FLAP procedure, congrats on your free tummy tuck, but in twenty years my boobs will be way perkier.

What special clothing will I need?

Forget anything that goes on or off over your head.

• Housecoats All clothing should snap, zip or button from top to bottom.  The longer the better, because you’re not going to want to wear underpants the first few days.  Don’t complicate things.

• Jog bras  They should open in front and be snug. No underwires.  These are hard to find and can be overpriced.  I’ve heard both Hanes and Danskin make some options, but I couldn’t find them in my size. Remember, post surgery, your cup letter may be a little smaller (leave room for bandages), but your back number is still the same. I found a line by Fruit of the Loom at Wal-Mart.  Yes, I’ll go to hell for shopping there, but for $10 a pop, my mastectomy recovery went smoothly, thus postponing my arrival date in Hades.

What don’t you need?

• Mastectomy camisoles They have these pockets to “hide” your drains. Instead I looked like a suicide bomber.  Remember the grenade belts in Hellboy? It looked like I had one of those around my waist.  They also came with hilarious fake boobs.  They were comically large, and that’s coming from a girl who used to have comically large breasts.

• Shower Shirts If you want a weird looking, waterproof, pink, cape, go for it.

What’s the most important thing for recovery?

Warning: The following statement is completely out of character.  The most important thing is someone who loves you very much.  You don’t even have to like this person, but he or she must absolutely, unconditionally love you. To be clear, I do love Jason an unreasonable amount.

This person will have the pleasure of:

• Washing, shaving and deodorizing your armpits;
• Emptying then measuring and documenting the contents of your drains;
• Getting you everything you want, whenever you want it, during whatever random 15 minute window you choose to be awake that day; walkie talkies help;
• Forsaking all others because you want to change your housecoat;
• Sitting through countless doctors’ appointments and pretending not to be embarrassed when you say ridiculous things to the doctors just to see how they’ll react;
• Changing the kitty litter for the rest of your lives together;
• Pretending to be super into your constantly changing weird looking new boobs;
• Yelling at you when you try to do things that are clearly forbidden, even if he’s really tired of unloading the dishwasher;
• Ignoring you every half hour when you yell “My boobs hurt!”;

And so so so so much more…

On the plus side, he gets to share all the yummy stuff people send. And for the rest of our lives whenever he doesn't want to do something he gets to say "remember that time you had cancer and I took care of you?"

So what happens next?

Although my surgeons are pleased with my healing and my pathology report, my oncologist says some other report called an oncotype says I need chemotherapy. I don’t know if I trust this oncotype. Sounds like one of them foreign tests. Anyway I will likely follow a course that involves 6 sessions with one every 3 weeks.

When I’m done with my chemo I will undergo radiation treatment, followed by hormone therapy for 10 years.  Don’t worry, I’m pretty sure I’ll stop blogging by then.

Thanks for the Mammaries

What's the best way to say goodbye to a body part? A roast, a parade, a montage set to Green Day’s “Time of Your Life?" Perhaps a tasteful dinner party with friends and family and their body parts. 

I feel that I completely failed my breasts on this matter.  It’s like I was close friends with these twins and then I heard they were moving because their dad got a job in Cleveland and I didn’t even bother decorating their lockers or making a collage or a mix tape or anything.

Instead of making it about them, I made it all about me, or the rest of me, and that was wrong. Maybe it’s because these particular parts make people uncomfortable.  If I was losing something less taboo, like my elbows, it may have been easier to honor the loss. Has anyone ever gotten an elbowectomy?

Perhaps the lack of fan fare was because I’m getting new ones. It is awkward saying good-bye to the old neighbors when they know, you know, and everyone else knows you’re getting new neighbors really soon; better neighbors, perkier, younger, neighbors that aren't trying to kill me. 

But we were together for 35 years and that kind of relationship cannot be so easily dismissed.  Or can it?

Like everywhere else we go, we got to the hospital a little late that morning.  Upon our arrival, three different hospital employees sent us to the wrong room.  One guy even drove us in a golf cart to the wrong place. You’d think “where do I register for surgery?” would be a pretty common question at a hospital. Something they should consider highlighting during orientation in the future.

When we finally got to the right room, it was all business.  Lots of people coming and going, lots of questions. The same questions. Over and over.  Makes sense. Don’t want to accidentally double mastectomy the wrong gal.

My plastic surgeon showed up and drew all over me with a purple marker.  It looked like a very sad x-rated version of Tron. Then the other surgeon stopped in and said some stuff.  I nodded and made my best listening face but inside I was thinking “I don’t wanna! I don’t wanna! Get me out of here! I don’t wanna!”

I said goodbye to Mom, Dad and Jason and they rolled me to the operating room. For a moment I glanced down inside my hospital gown for one last look.  A nurse caught me. “Just don’t want to forget what they used to look like.”

I know some women have dance parties with the nurses or sing alongs.  Some women even tell jokes.  You'd think I'd be one of those women, but just this once, I wasn't. Something about that room, all the people and the equipment... it just pushed me over the edge. For the first time since my diagnosis, I cried. And I mean really cried.  I’m talking full body, tear monsoon, weird noises, gasping for air, sobbing.  Nurses with masks formed a huddle and were group hugging me, surgeons were running for tissues…and then… I woke up. And they were gone. And it hurt like hell.

I’m going to skip over some embarrassing and graphic details here. The night was a blur of nurses, morphine injections, pain and pills.  Jason was by my side the whole night in the hospital version of a barca loungers. Pro tip- when you lean back, it's NOT just like a bed. 

I was not allowed to leave the hospital until I reached certain goals, which seemed to change based on which medical professional we asked.  For example, a nurse said I had to stop peeing blue.  Now, I know for a fact that I did not pee blue when I entered that place, so I’m pretty sure they were just messing with me. The plastic surgeon said I could not leave until my pain was managed by medication.  The nurse, however, kept telling me I was not actually in pain because if I was, I  would be screaming more. That made sense to me, because I was on a LOT of medication and she had pretty hair. 

After 36 hours and jumping through a dozen hoops, they agreed to set us free. Not real hoops, of course, I could barely put on pants.

Jason and I got into our car and drove back to Virginia with a giant bag of medical supplies.  I couldn't help but feel like I'd left something behind. Somethings...

Every day the pain gets a little easier until I do something I shouldn’t and then it’s back to the meds. Despite my insistence on ignoring doctors’ orders, the surgeons are pleased with my progress.  Last week they removed two of my four drains.  With any luck, (she says as if her own actions are irrelevant) the other two will be removed on Tuesday. 

The following week we’ll learn about the next steps.  These could involve chemotherapy, radiation or hormone therapy.  My sister says chemo is not nearly as fun as it looks, so we’re hoping to skip that option.

Starting tomorrow Jason will return to the office on a part-time schedule. He has done an amazing job taking care of me, including the gross stuff.  However, there is no way we would have managed without the help of family, friends and neighbors.  A special thank you to my BFF, Adam, who organized the lotsahelpinghands site that has kept us fed for the last two weeks.  We’ll be adding some additional ways to help soon.

I just realized something.  In this post, like in life, I forgot it was supposed to be about saying good-bye to my boobs. It's like when we moved out of our apartment.  I was so upset about leaving, but when we got to the new place, I barely thought about the old place anymore. 

I can’t wait to meet my new boobs. How will they look in t-shirts? Will I need all new bras? Will my friends like them?  I hope we get along well.  And as for the old girls, maybe it’s not about how you said good-bye, instead it’s about all the times you said hello.

Rex Manning Day

I had to look up what Rex Manning Day was.  Even now I'm not sure I get it.

Anyway, today was Rex Manning Day, or as our doctors like to call it, Bilateral Mastectomy With A Side of Lymph Node Survey Day.

The lymph node survey came back clean.  This means that cancer had not worked its way into the lymphatic system.  That's good news.

Becky is in her room dozing on and off.  She's a little sore but that's to be expected.  The nurse is here now with some pain meds.  It's always good when somebody arrives bearing narcotics, isn't it?

If all goes according to plan we'll be back home tomorrow.

What's Happening to Me?

When I was a kid my friends and I used to read the classic coming of age books, “Where Did I Come From?” and “What’s Happening to Me?”.  Strangely,  I don’t remember the part about getting your breasts removed at 35. That’s probably because I was so focused on the hilarious pictures of naked people from the 70s.

Tomorrow is D-Day, or B-Day or M-Day, or Rex Manning Day.  Many of you have questions about what exactly will happen during the surgery.  If you do not want to know the details, then you should leave now.  Go find some videos that involve kittens and babies, preferably together. Then send the link to me. 

Tomorrow, I will have a bilateral (double) mastectomy. First, the plastic surgeon will make an incision. Next, the breast surgeon will remove all of the breast tissue. She will also take a sample from my lymph nodes.  If cancer is detected in the nodes, they will remove them.  Next, the plastic surgeon will insert temporary breast implants, also called expanders. Then it’s time to close up shop and send me to recovery.

If all goes well, the surgery should take less than 5 hours.  I will be in the hospital over night and home the next day.  Recovery should take between one and three weeks.

Over the next several months I will have a series of injections that will expand the temporary implants.  If my doctors determine I need chemotherapy, that will began after I have recovered from my surgery.  Chemo will last about 18-20 weeks, with a dose every three weeks.  When my treatments are concluded, I will receive permanent breast implants, not something I ever expected to say. 

I hope that clears everything up.  If you have any other questions, use google. That’s what the internet is for, Dummy.

Thanks to everyone for your kind words, love and support.  It has kept me well distracted, which has been invaluable.  I love you all.  Well, not all of you. Some of you I’ve never met.  But I’m sure if we did meet, we’d get along and maybe some day I would grow to love you.

Send your prayers, thoughts and ritual sacrifices starting around 10 AM tomorrow. 

 

Next time… J will post here and on facebook when I am out of surgery and in recovery.

The Bullshit of All Bullshits

Since my last post I've spent some time exploring the anger stage.  The other night, while slicing some vegetables, I felt so angry I stabbed the cutting board.  It was a cheap knife and a plastic cutting board, so the impact was minimal but it felt very dramatic and satisfying. 

Borrowed from the cinematic masterpiece, 40 Year Old Virgin "the bullshit of all bullshits” is a common expression in our home. Jason and I use it to express outrage at extreme injustice. For example, when you get your car back from a week at the dealership and the check engine light immediately comes back on. Or when you’re three feet from the finish line, and someone hits you with a blue shell, and Baby Peach goes tearing past for the win.  

I have decided that this breast cancer situation is the ultimate bullshit of all bullshits.  Not my case in particular, but breast cancer in general. 

The odds were against my family from the start. Approximately 1 in 8 women will be diagnosed with invasive breast cancer.It turns out that my mom, sister, both my aunts and I, are all women. However, it’s not just about my family. This issue affects us all. Every one of you is either yourself a woman or has, at some point, met one.  

This epidemic forces too many of us to face terrible options. No woman should have to choose between her life and her nipples. Take my case: I knew I was BRCA+, so my doctor recommended a preemptive double mastectomy. When we found out I had cancer he recommended...a double mastectomy.  That's right, our best option for preventing is the same thing as the treatment. What exactly were we preempting?  

To make it clearer to the menfolk, I will phrase it as a multiple choice question

Would you rather...

A) have your breasts removed 
     have at least some of your lymph nodes removed 

     lose your nipples (in most cases)

     never be able to breast feed

     lose all feeling in your breasts

     have permanent scars 
     be intentionally poisoned
     lose your hair
     have your skin turn grey
     live with weakened bones
     have hot flashes, just part of going through early menopause
     forget everything, sometimes half way through a sentence
     breakout like a teenager who uses Crisco as a facial mask
     experience pain...so much pain
     have everyone look at you with the sympathetic pity smile
     experience soul crushing exhaustion
     not have to worry about calories but everything tastes horrible
     spend the rest of your life hearing stories from people about the women they know who        died of breast cancer
     be marked up like a treasure map for radiation
     face a painful series of reconstructive surgeries, or worse, not even have that choice

OR

B) DIE?

These choices are total bullshit. The Breast Cancer Industry needs to get its head in the game.

Some charities and businesses are making a killing off breast cancer.  Literally. Women are dying. Please be responsible consumers.  Just because it's a certain color doesn't mean the money goes somewhere good. Check how much goes where. Or even better, stop buying products that put a pink ribbon on the package but are full of known carcinogens. 

Breast cancer gets more attention than other type of cancer and we still have so far to go. Women have been walking like crazy and buying pink everything for years and I’m still having a double mastectomy on Thursday. Fun fact, that's the same procedure George Washington's mother in law had when she had breast cancer.

What about the medical research community and pharmaceutical industry? Not to be the person who brings up viagra, but you can’t have sex with your wife if she died of breast cancer.  Well you can, but that’s a whole different blog.

I know that there is potential for ineptitude and misappropriation in any charitable organization.  The breast cancer industry is not unique.  But this is the thing I have. And it’s the thing my sister has and my mom and my aunts. And I’m angry.

We need more research. We need more direct services. We need to help the people who have and save others from having it down the line.  We don't need more education. We don't need more awareness. We need answers, we need help. 

So enough with the cute t-shirts and the pink bullshit. What can we do to make this stop? To have better options?

Let's make sure that my niece isn’t writing a blog like this in 30 years.

Next time… surgical update.  I will make sure that someone posts an announcement when I am out of surgery.  Thanks, as always, for the love and support.