Day 146: The Final Countdown

The only music I seem to have in my head these days is the cheesy song by the synth, hair-rock band Europe called "The Final Countdown."  See their photo below.  This is not the soundtrack I want to have as I cross the chemo finish line, but I can't help what has been programmed into my brain after years of listening to bad Top 40 radio stations during my youth in the 1980s.

Europe.   I wish these guys would just get out of my head!

ONLY ONE MORE TO GO!
I just finished my seventh chemo treatment on Thursday.  Only one more treatment to go - I can hardly wait!  I am really looking forward to getting my old energy level back and feeling a litte more like a member of the living.  These past seven treatments have put me through the ringer more than many people realize. Even though I'm out and about and I fix myself up for work, family, and social events, I still haven't really felt that well. So, I am looking forward to having a healthy body back!

As per my typical self, I had a pretty busy schedule over the last couple of weeks.  I'll talk about some of the things I did below but the best news by far was that when I went back in for my seventh treatment, my blood counts were better.  I am still on track for getting my very last chemotherapy treatment on May 5th. Woo hoo!

My sister, Suzy, joined me for this past session.  Afterwards, we lunched at RL restaurant and then hung out at my place for a bit. Here's a snapshot from our lunch. Thanks, sis!

Bonnie G Coming to a TV Program Near You...
On Friday, I was interviewed in my home by WGN on early cancer detection.  The show will air in a couple of weeks and I'll be sure to update you on when it will be on the air.

Great Books & Keeping up the Healthy Way of Life
I am a pretty healthy person. I try not to eat too many animal products and, when I do, I try and eat grass fed farm-raised products.  The book "Omnivore's Dilemma" opened my eyes to the ugliness of industrial farming and the toxicity in our food that is sanctioned by the FDA.  I read this book over three years ago and have drastically changed my eating habits since then.

Since discovering I had cancer, I have been extra conscious of what I eat. But there are also a slew of books out there on how to treat your body to prevent cancer from recurring.  This past week I zipped through a tremendous book called, "Anti Cancer: A New Way of Life" by David Servan-Schreiber, a seven year brain cancer survivor and an MD. 

Servan Schreiber talks about what fuels the growth of cancer cells and, in combination with conventional methods of surgery and chemotherapy, how to combine that with cancer fighting foods that can cut off the source of supply to cancer cells.  It's also just a more intellectual way to remind us all to eat more broccoli and drink green tea!  Just look at how beautiful these photos are!

Art and Easter.  A Perfect Combination
Saturday, Joe and I went to the Smart Museum at the University of Chicago to check out a beautiful Rothko painting and then met up with friends Robyn and Drew at the MDW Art Fair.   It was an impressive warehouse full of galleries and DIY artist shows in an out of the way neighborhood near the Back of the Yards on Iron Street.  For my information on this show, you can read about it at: http://mdwfair.org/

Joe and I saw one particular painting we are enamoured with by an artist named Ann Toebbe.  We are still talking about potentially purchasing this gem.   The image below does not do it justice.

Ann Toebbe's "Ich Weiss Nicht Mehr Genau"

Easter & Family
On Sunday, we headed to Wheaton to see my family.  We were a little late and missed the Easter Egg Hunt.  I am sad that I missed watching my nieces hunt for Easter eggs, but it sounds like some of the squirrels got to them first!

Two of my five nieces.  Aren't they cute?!

Me and Mom.  How lucky am I to have such an elegant mother?!

Joe and I in the Vermeer lighting of my parents' living room

It's Sunday night ane Joe and I are about to head into our den to watch "Upstairs Downstairs" on Masterpiece Theater. What joy these BBC dramas give us in our little corner of the world.  Why can't all drama be this good?  I don't know the answer to that question.  All I know is that we love to get lost in the drama that makes up 165 Eaton Place. Thank you, Jean Marsh and Eileen Atkins, for creating such a wonderful setting for such a wonderful production.

The cast of the new "Upstairs Downstairs"

You'll be hearing back from me in a couple of weeks after my chemotherapy treatment is over!

In the meantime, my very favorite day of the year will pass: May 1st.  MAY DAY!  The celebration of spring and a great excuse to shower everyone with flowers. That is next Sunday. Let's hope it's a beautiful, sunny day.

Peace and Love and Joy and Health...and Hope!

- Bonnie

Day 137: Low Blood Cell Count = Low Spirits

For the last week or so, I have apparently been suffering from an acute case of "Neutropenia" and all I can think of is the 1973 rock opera "Quadrophenia" by The Who.  I never knew what the word quadrophenia meant before last week (it is a term misused to describe schizophrenia) -- and, to be honest, I wish I never knew what the word neutropenia meant either.

This past chemotherapy treatment cycle was the absolute worst thus far.  I was all set up and ready to get my SIXTH treatment (as in, 3/4 of the way done!) and while I was waiting in the chemo infusion room, the nurse came in to tell me that my blood counts were extremely low this cycle.  Specifically, my "neutrophil" levels were at around 800, compared with the low end of the range which should be closer to 1,500, so mine were half of the low-end of the range. 

I know, I know. Your next question is "Bonnie, what in the heck is a neutrophil?"  And, of course, me having never taken chemistry in my life and only having taken 7th grade biology (somehow I slipped under the radar of science requirements in high school & college), I had to look this up on Wikipedia.  The only English explanation I could cull from the scientific description was the following:

Neutrophils are the most abundant type of white blood cells in mammals and form an essential part of the innate immune system.  Low neutrophil counts are termed neutropenia. This can be congenital (genetic disorder) or it can develop later, as in the case of aplastic anemia or some kinds of leukemia. It can also be a side-effect of medication, most prominently chemotherapy. Neutropenia makes an individual highly susceptible to infections.

Translation: Low Neutrophils = Neutropenia = high probably for infection, sickness, etc.

No wonder I had been pretty tired leading up to chemo.

So, my doctor almost halted my infusion that day, but fortunately decided to keep me on track and give me the treatment on the condition that I came back in the next day to get a "booster" shot that creates new white blood cells (an aside: this "booster" is called Neulasta and costs $8,000 per shot - I am so happy I have insurance). 

Today is exactly one week following my treatment, so here I am seven days later and I am finally starting to feel better.  The real crux of the problem is that the combination of the Neulasta shot and my chemo drug, Taxol, caused some bad side effects for me.  Neulasta prompts your body to create new white blood cells, which are made in the bone marrow.  And, Taxol, has a side effect of bone pain as well, so the impact is compounded.  So, for the last week my bones were in extreme pain.  I was also exhausted and felt pretty run down.  I wasn't able to work out and I was exhausted every day.  Of course, I felt okay walking out of the chemo treatment, but after I got the Neulasta shot the following day, I was pretty much out for the count.

Hopefully when I go back in for my penultimate treatment next Thursday my counts will be high enough for me to avoid that booster shot.

I want to thank my sister Colleen, brother Bob, and my dear friend Brian for hanging out with me during parts of my treatment last week.  It was really fun to have you all there at different times during the day. 

Positive in the Face of Cancer: New Friends
So, the one upside I have experienced about having cancer is that I have been able to meet some amazing, amazing women through this process who are also breast cancer survivors.  One of the people I have met if named Tiffany.  My fertility navigator, Kristin Smith (who is also amazing!) referred me to her as a resource when I was diagnosed. Tiffany is 29 years old, was diagnosed last year at the age of 28 and has been through almost everything I have been through, only a few months earlier.  She is such a trooper and is beautiful, athletic, and has a great attitude.  She was recently interviewed by the Chicago Sun Times on the topic of oncofertility and I am pasting the link below. It's a quick read - plus, there's a picture of Tiffany and her husband Dave!  But, I also want to say that I think the article is a bit of a downer about her chances of having kids. I mean, Tiffany and Dave have more than a "slim chance" of having their own children, in my opinion.
Link to article on oncofertility

Night at the Museum: An Evening for Young Adults Touched by Cancer
The evening of my chemo treatment, I attended the new Bodyworlds exhibit at the Museum of Science and Industry with my friend and parallel universe cancer survivor, Heather.  It definitely lifted my spirits. My doctors, my new cancer surivior network of friends, and lots of other inspirational people where there.  Here's a picture of me and Heather at this event.  It was fun running into a lot of people there -- all who are so upbeat, supportive, and cool.

All's Well that Ends Well

I seem to be doing pretty well now, but I shudder to think about what may lie ahead for me next week at treatment.  Let's hope these little quadropheliac neutrophils are back on track by then. 

More later.

Peace and Love and Health and Joy.

Day 121: Overworked, Overcommitted, and Overjoyed

I only have three more treatments left.  My last round of chemotherapy is scheduled for May 5th. I can't wait to be finished!  Of course, that is just the beginning of the end of my treatment.  In June, I plan to have major surgery (tentatively scheduled for June 10th) to reduce my risk of getting breast cancer again.  And, I am considering having another surgery in a year or so to reduce my risk of getting ovarian cancer.

But, I am getting SO much closer to being done.  I am working too hard these days.  I am overcommitted with extracurriculars like alumni boards, museum boards, and I am overextending myself socially.  But I'm glad I'm too busy. I would rather be too busy than depressed. I would rather be with friends than alone. 

Plus, being busy also makes me motivated to do things to "de-stress" that make me feel amazing.  Like yoga.   Actually, my acupuncturist asked me the other day what I did to "de-stress" -- one of the most important things I do is to hang out with my friends.  So, committing to them forces me to de-stress from work and  medical appointments.

In Memory of Angie Levy

In 2007, a friend of mine from Wharton, Angie, passed away from breast cancer.  She was a year ahead of me at Wharton and I always looked up to her and admired her for her ambition.  She was an officer in Wharton's Investment Management Club and knew exactly the career she wanted after graduation and how to get it. 

She was a great mentor during business school. After we both graduated, I lost touch with her a bit, which, given her long work hours in New York, I figured was normal.  But I heard from her in 2006 when she shot me an email telling me that she was quitting her job at JP Morgan, moving back to Chicago, and wanted to get together. I had heard through the grapevine at Wharton that Angie was a breast cancer survivor, but I had never spoken with her about it directly.  So many rumors exist in graduate school, you never really know what's true anyways.  But, the back of my mind, after I received her email, I wondered if that was why she was coming back to Chicago.

She eventually told me in person, over happy hour one night, that her cancer had come back and she was taking some time off to focus on her health. She bought a new Mercedes Benz with the license plate "X Angel X" and rented an apartment in Old Town and was focusing on working out, living a healthy lifestyle, and dating.

The last time I saw Angie, the sun was shining and the weather was still great -- it was late summer.  We were eating an al fresco lunch on Division Street and I commented how great her hair looked -- and then I realized she was wearing a wig.  We caught up for a bit about little chit chat and then she told me her cancer had metastasized to her brain and that she was undergoing radiation to break up the tumors.  She made it all sound so organized and manageable, but after our lunch, I realized that what she had told me didn't sound good.  In fact, it sounded pretty bad.  But she never used the term prognosis or defeat. She always had a game plan.

Angie died in November of that year.  She was 36. 

Her mother started an organization called, "Angie's Spa" that gives free spa services to cancer patients at various cancer institutes around the country.  Here's a link to the website and a little more information about Angie.  http://www.angiesspa.org/

I have thought about Angie almost every single day since my diagnosis.  I reached out to her mother recently to let her know that her daughter has been on my mind and that she is an inspiration to me. I wish that I could talk with Angie today, ask her questions, and get her input on my treatment.  She was the most organized, efficient person I have ever known. 

On Family
My dad never fails to impress.  Last month, he released, Terror at the Fair,  his fifth book in the Snap Malek series.  Our entire family attended the book signing event that was held for him at "Centuries and Sleuths" bookstore in Forest Park.


My dad's newest book in the Snap Malek series

 


Dad and me at his book signing for Terror at the Fair


There was a great turnout at the signing.  And, more importantly, his five granddaughters were there to give their congratulations -- which was appropriate, given that my dad dedicated this particular book to his "granddaughters five". He just loves those little girls.  So do I.

On Friends
I have had a lot of wonderful support throughout this ordeal.  I had three wonderful out of town visitors over the last month: Ann, Christine, and Amanda, who are all very near and dear to me.  And, I have found tremendous support in my new network of breast cancer survivors: Heather, Tiffany, Kiran, Rachel and many, many others.

My friends are so interesting and inspirational. As I mentioned in my last post, Ann is an amazing inspiration through her work at Unicef.


Christine and me at Big Star having some veggie tacos and beer. 
Micheladas will have to wait until I'm off chemo.



Additionally, my friend Christine travelled all the way to Chicago just to see me after she recently returned from six weeks in Kabul, Afghanistan.  Over the last two years, she has made a career of democracy building in areas of conflict.  She is doing a lot of interesting work overseas these days and I thought it was particularly nice of her to take time out from these activities to come to Chicago for a visit.  We had a lot of fun running around Chicago and doing various activities.  Sorry we couldn't make it to Michigan Ave, sweetie. Next time, I promise!



Amanda and I (ahem) a few years ago at The Great Wall

Finally, my friend Amanda visited me last weekend for an evening after she had an interview for an educational strategy residency program with the Eli Broad Foundation. Amanda just transitioned her career from corporate strategy to educational strategy and works at a charter school system based in Harlem. 

Amanda and I have travelled the world together -  to countries near and far.  From the Virgin Islands and Mexico to China, Hong Kong, Iceland, Cambodia, Thailand, and Vietnam.  She is an all around "go getter" who always inspires me to higher standards of work, ethics, everything.  Plus, she's a lot of fun and a great travel companion.   Amanda, we need to plan our next trip, soon, sweets!

These women are the ones who inspire me to figure out what my next path will be.  I have a lot of thinking to do.  Once I'm done with chemo and surgery, I hope to have some time to figure out my next steps.

On Advocacy
One of my new friends who is a cancer survivor, Kiran, did a great interview on CBS News last week on triple negative breast cancer -- that's the kind of cancer I have.

Check it out here:
CBS Video on Triple Negative Breast Cancer

On Future

The biggest part of my future is Joe. 

The other part of my future is continued advocacy for women with cancer.  I am being interviewed tomorrow for Depaul Law magazine on oncofertility issues and will be interviewed next week on local television for BRCA mutation.






Peace and Love and Joy and Health.

Day 107: Into the Great Wide Open

Over the past two weeks I have been thinking a lot about mortality. I know it's morbid, but that is what has been on my mind.  Right before my last chemotherapy treatment I had a quick business daytrip to Detroit.  On the plane ride back, I read a supposedly uplifting (but ultimately depressing) book that referenced a woman named Anna who was my age, had a similar diagnosis to mine, who successfully went through chemotherapy and radiation, had a great attitude, only to have her cancer come back with a vengeance a year later and, ultimately, kill her.  It was not a good day for me.  I can't seem to get Anna out of my head.

But, while I was reading this book, I was also listening to some new music my friend Owen had sent to me that countered these negative words and I had a visualization revelation in O'Hare airport while listening to the band XX. 

So, why is the title of this blog, "Into the Great Wide Open"?  I know it's a Tom Petty song, but the image it conjures is that I have walked up the edge of this great, vast hole in the world. In my world.  And I have peered over the edge of this grand drop off and stared down into it. But in my mind, I just see myself turning away from it and walking away.  I'm not going to be defeated. I have come close to the edge.  I may get closer still, but I can will myself to turn around and go back to my life.  To my life.  I am in the Great, Wide Open.  But it will not swallow me.  I can feel for Anna but I will not become her.

So, enough with that depressing analogy for now.   Here is what else has been happening in my life over the last two weeks.

Made it half-way through chemotherapy!

Last Thursday, I finished my fourth round of chemotherapy, which marks the half way point.  And, I'm finally done with the horrible A+C drugs, which makes me sick just thinking about it.  So, I feel like I have something to celebrate  My last chemotherapy session is in the first week of May. I cannot wait!

My sister Colleen came with me for this session.  We had a nice lunch afterward at the Arts Club of Chicago, at which she is an esteemed member. It was a fun day.  Here's a picture from our lunch. 

Thanks, Colleen, for being a great supporter...and for lunch!  I love you.

Speaking Engagement

The day after chemo, I spoke at a DePaul Law symposium focused on Fertility Preservation.  This was at the request of a great woman I know who is a patient navigator at the Oncofertility Consortium.  She is amazing. Here's a link to their website:  http://oncofertility.northwestern.edu/ 

I told my story to a group of DePaul Law students.  Afterwards, I was shocked by how many people came up to me to express their thanks for me sharing my story and wishing me luck in my treatment.  After all, I'm probably only a few years older than these students and after they heard all the legal arguments for/against fertility preservation programs, they said that hearing an actual patient's story was the highlight of the day.  It  made me feel like it was a good use of my time.

The Trim

I received a wonderful surprise from my future sister-in-law, Melissa, last week.  She sent Joe an email that said, "To be donated to Pantene's Beautiful Lengths Campaign in Miss Bonnie's honor!" with the following photos attached.

By the way, the best part of this picture is that you can see Chet's little head in the mirror. He looks so happy!

Mel, when I got your email, I started to cry. Thank you so much for everything. I can't wait to see you guys soon!

Friends!

Following my busy week, one of my best friends from college, Ann, was in town from Brooklyn and we spent some time together. She was in town from Brooklyn for a conference around International Women's Day and she ended up staying the weekend at our place. We had a great time, visited the Mexican Fine Arts Museum in Chicago, saw an arty french film and ate a lot of good food. Here's a picture of her, Joe, and me at The Publican. 

Ann is so inspirational. She works at Unicef and is working to make the world a better place. While she was in town, she showed me a project that a few NGOs, including Unicef, are working on called "The Girl Effect" whose aim is to stop 12 year old girls from falling into poverty. Check out this great short video they made for YouTube.  It makes me want to change the world, too. That's the effect Ann has on me. That is why I feel lucky to have her as a friend.

My Blog Called Life

This blog is very self-indulgent. It makes me feel like Claire Danes' character Angela Chase from "My So Called Life." Self involved, brooding, introspective, trouble teenager.  But, I feel like I'm allowed to be that person these days.  A little cheesy.  A little hokey.  But it feels good to get all this stuff down in the blogosphere.



Peace and Love and Joy and Health.

Day 89: Bonnie G in Mathmagic Land

Do you remember film strips in grade school?  You know, the films that the teacher actually had to thread through the reels and project on the screen above the teacher's desk?  With the grainy lines and hairs showing up on the projection from time to time?  It might be ancient history for those of you reading this blog, but it brings back fond memories for me.  The memory of a dimmed classroom filled only with the the sound of a spinning film reel makes my heart warm.

When I was in grade school, my favorite film strip was "Donald Duck in Mathmagic Land." It was full of interesting historical references and practical applications to math -- things that were actually fun to learn about like Pythagoras and his "golden rectangle" theory that was the basis for architecture and art, math's relationship to the octave scale in music, and how angles and geometry are the basis for billiards. It opened up a whole new world to me...and made math cool (as an aside, this "featurette" was nominated for an Oscar in 1959).  If you want to see the strip, you can view it here.

For the last two weeks, my head has been filled with numbers and all I can think about is Donald Duck consumed by mathematics.  So, in grand fashion, I'll break out this blog into a few parts: Fractions, Statistics, and Things Which Are Irrelevant (to this post's theme).

Three-Eighths (3/8) Does Not an Interesting Fraction Make
I completed my third round of chemo yesterday.  Three down, five to go.  In some senses, I can't wait to get to chemo each treatment, because it is one step closer to finishing chemo!  But yesterday, I was feeling sort of "blah" about the experience. After all, now all I can say is that I'm "3/8th of the way through."

3/8ths: What a lame fraction.  What has that fraction ever done for anyone?   If you were wagering with odds of 3/8, it wouldn't be a great bet, right?  It's just over 1/4, but not quite 1/2.  It's what one would call a "tweener" fraction.  Wimpy. Weak.  I want a bold fraction like 3/4.  Or better yet 4/5 -- even closer to a "whole" 1/1 = 2/2 = 3/3, ad infinitum!

But, I can look at this in a positive light, too.  I am 3/4 of the way through the first half of my chemo treatment, which is supposedly a little harsher than the second half. I am taking a different set of drugs during the first four sessions than the last four sessions (Adriamycin and Cytoxin for the first four treatments, versus Taxol for the last four sessions, for those of your cancer geeks out there).  The "A" drug is the trippiest.  Here's a pic of what it looks like.  I can't wait to have that one over with.

The next session will be something to really celebrate: half of the way through to completion.  If you make it to 13.1 miles in a marathon, you're not stopping, that's for sure.  The same goes for this treatment, too. 

So, I shouldn't complain.   While I'm allowed to comment on how weak the fraction 3/8 is, a fraction that lame doesn't even have the power to dim my positive attitude. 

What helped me through the session is that my brother joined me for my treatment yesterday and the time flew by.  For those of you who know my brother, he is pretty chatty guy.  So, he barrelled into my chemo treatment room, sat down, and immediately said, "Okay, let's talk industry gossip."

Bob and I both work in the Chicago financial community. And we both tend to know a fair amout of people, so he's always regaling me with news of "so-and-so changing jobs" or telling me about the details on the new $4 million house that so-and-so Portfolio Manager bought in Winnetka (a leading indicator for the health of that PM's firm, perhaps).
 
Here's a picture of me and Bob after my third chemo treatment.

And here's a pic of my udpated Chemo Countdown Board.  I can't wait to get to the bottom half of that thing. 

"There are Three Kinds of Lies: Lies, Damned Lies, and Statistics" - Benjamin Disraeli

So, something else I was thrown with for the last two weeks, were a lot of new statistics.    I know, I know. Statistics are booooring.  So I'll try and lay them out for you pretty quickly and easily.  Read the underlined portion for the cliffnotes on this.

1) Radiation: I met with a radiologist last week who gave me some charcoal grey statistics on the benefit from me undergoing radiation therapy following my chemotherapy.  For someone like me, with between 1 and 3 positive (cancerous) lymph nodes (in my case, I had one positive node that was removed along with 6 non cancerous nodes), the statistical benefits from radiation are mixed.  There are some adverse side effects from radiation (after all, it's radiation being targetted into your body daily for six weeks), so it's a tough decision.  I will likely proceed with it but only after I get a second opinion.  Basically, what my guy said was that there is an older study (before the improvements of chemo and surgery were made) that indicates a 10% reduction in the recurrence of the cancer in the lymphatic area.  This is completely unrelated to the information in point 2 below (different area of the body; different odds).
Statistics: 10% improvement based on old studies.  Verdict: Jury Still Out.

2) Chemotherapy: So, I finally got around to asking my oncologist about the statistical benefits of my chemotherapy.  All along, she said said that my cancer is "curable" and that I'll have a "very low" chance of the chemotherapy not eliminating all of the cancer in my body.  But there is still the risk.

Basically, here's the deal.  After my lumpectomy, without chemotherapy, I had a 30-40% chance of the cancer still being present in my bloodstream and showing up at a later date (typically between one and three years) in the form of metastasis.  There is no way that they can test for that until the metastasis happens.  Let's hope it doesn't.

After chemo, my odds of metastasis go down by 20%.  So, I still have a 10-20% chance of any cancer not being eliminated through chemotherapy and later showing up in the form of metastasis.  The most likely areas for metastasis are in the lung and liver.  I was hoping the statistic would be better than 10-20%, but my doctor said that attitude has shown to be a huge contributor to non-recurrence, and I think I have a pretty damn good attitude for someone who got cancer at 36 years old.  So, I just gotta make it to 2015, folks, and then I can hope to be in the clear.
Statistics: 10-20% chance of recurrence in the form of metastasis post-chemotherapy.  Verdict: Wish it was less, but there's nothing else I can do but have a great attitude and live my life.   

3) BDM and Oophrectomy
I spent nearly 12 hours at Northwestern yesterday. I started my chemo at 7:30am and didn't finish all my appointments until 7pm. I'm usually out of chemo by 11am and home shortly thereafter, but yesterday I decided to meet with a reconstructcive surgeon regarding my decision to go forward with a prophyactic bilateral double matectomy (BDM) and reconstruction. I also tagged along with a friend who is also BRCA positive in her meeting with an ovarian doctor regarding our collective risk of getting ovarian cancer, the deadliest cancer for women.  I was reminded of a few important statistics, that make me confident of the steps I plan to take to lower my risk.

Let me break it down:

I have a 50-80% chance of a new breast cancer developing if I don't get a BDM.  My risk drops to virtually 0% post-BDM.
Given that I am BRCA 1 mutation positive, I have a 50-80% chance of getting breast cancer again in my lifetime. Each of us has two BRCA 1 genes; one of mine is mutated, (ie, its broken).   It is likely I am at the higher end of the risk scale for a new cancer developing, because my lovely "healthy" BRCA strand has shown it has been able to break down and since the broken one can't help it recover, I got cancer.  Eventually, the "healthy" gene repairs itself, but since it broke down temporarily once, it may have a propensity to do that again, causing another cancer of the breast to form.   So, removal of all of my breast tissue is the best option for me to reduce my risk by close to 100%.  This is what Christina Applegate did two years ago.  She has been quoted as saying, "Whatever I'm gonig to die from, I know it won't be breast cancer."  That's a place I'd like to be, too.   I will likely undergo this procedure sooner than later. Likely this summer.  I am confident in this decision and appreciate all of the support from friends and family on this.  I know it's a squeemish topic, but it is so important for women to be able to discuss this openly.  We have the knowledge to get ahead of what could kill us later in life and remove it from our bodies as soon as possible that there is no reason to be shy about it.  Plus, the reconstruction doctors are all amazing.

I have a 15-40-% of developing ovarian cancer as a result of this mutation without an oophrectomy. This risk drops to ~1% following an oophrectomy
The general population has a 1.5% chance of developing ovarian cancer in their lifetime.

The issue with ovarian cancer is that it is nearly impossble to "screen" for ovarian cancer right now until it's already too late.  Ovarian cancer typically doesn't show up on ultrasound screens until has already metastasized into areas around the ovaries (bladder, pancreas, liver, etc).  An oophrectoomy is the removal of the ovaries, which prevents ovarian cancer from occurring. This is a procedure I plan to get right after Joe and I have kids in a few years.  Typically, experts recommend waiting until after children and as you hit the age of 40.   The good news is that using birth control and having at least two children reduces your overall risk for ovarian cancer.

I joined Gilda's Club last month, which was started by one of the original cast members of Saturday Night Live, Gilda Radner.  Gilda died of ovarian cancer in 1989 at the age of 42 before we had knowlege about the link between ovarian cancer and the BRCA mutation.  Her symptoms started at age 39 and she was diagnosed a year later.  She was a beautiful, hilarious, phenomeonally spirited woman, who I just wish could have benefitted from what we know now about how to prevent this cancer.  Us BRCA 1+ women today have her to thank.  We stand on her shoulders and our grateful for our own surival. Thanks, Gilda.

Gilda Radner

Onto Unrelated Topics

Joe
Joe recently quit his job as head of the Fine Art Department at LH Auctioneers and started a new position at the Haven Art Group this week, where he will be advising private clients, galleries and museums on the handling, preservation, and claim management of their art collections.  I am very excited for this new development for him.  It is busy times for us, but we are happy and doing well.

My New Hair
So, I debuted my new hair at the office two Mondays ago.  Things went fine and I'm already very used to it.  I have been taking meetings with colleagues outside of the firm and I really don't get a sense that they can tell at all.  So, that's good.   I misspoke in my prior post about my hair being from Mongolia. My hair guys corrected me last week.  My hair is actually from Siberia.  Sorry, Setseg. 

Thank you for the wonderful support
Over the last two weeks, I have received numerous gifts and words of encouragement. It is impossible to thank everyone since I know I'll be leaving a few people out, but I want to try to acknowledge you all here. If you don't see your name,  it's not intentional.  Your outreach made an impact.

Celeste and Chris: for your fun presents throughout this whole journey.
Mom, Dad, Suzy, Colleen, and Bob: Thanks for everything. Colleen, thanks especially for the soup!
Robyn & Drew: Thanks for the thoughtful package of scarves and hats.  It was a lovely gesture.
Cousin Barbara, Brooke, and Syndey: for the lovely card. I loved that the girls wrote me positive wishes!
Aunt Marcia, Rachel, Josh, and Elizabeth: Thank you for the beautfiful flowers! They are so cheerful!
Paulina, Guy, Petra, and Cameron: for the *delicious* Valentines Day cake!  We ate it all right after you left!
Terry and Amelia: for the beautiful flowers!  Thank you.
Rachel & Dave: for the fun DVDs - can't wait to watch
Jess & Fred: for the wedding care package and the bird clips. So cheerful
Ann, Josh, and Sophia; for the wonderful Godiva chocolates for our engagement!  You are ever thoughtful.
Amanda K: for positive attitudes and fun gifts in the mail & please thank your mom for her thoughtful card.
Anne and Joe: for the cheerful yellow flowers. Thank you.
Owen: for sending on some new tunes. It really made my day when I had the chance to listen to them!
Tenaya and Eric: for your weekend meal drops and fun conversations.
Nicole Simon: for your thoughtful card.
Heather (Mouse) : for the tootsie rolls. Are you sure we didn't know each other in another life?
Treasa M and Brenda L: Brenda, thanks for the package of materials  T, thanks for the beautiful earrings!

Peace and Love and Joy and Health,
Bonnie

Day 74: Deeper Into the Rabbit Hole

Synopsis
If you haven't read Alice in Wonderland, the first chapter is titled, "Down the Rabbit Hole."  Which is essentially where I feel myself going -- deeper and deeper -- as I continue these treatments.  I just completed my second treatment today.  More bright red dye (poison, really) injected into my body.  Pretty tripped out stuff.  But, enlightening at the same time.  A new Bonnie universe that is cancer free.  And joyful.  It's the poison that will make me better.  

The second chapter of Alice is called, "A Pool of Tears," where Alice is sad and cries and cries and, as her tears flood up the hallway, she swims through this stream of tears and meets a lot of interesting little animals, like the Mouse, along the way. 

"A pool of tears" -- not to be too melodramatic -- but that's where I'll find myself tomorrow.  Tomorrow is the day I get all my hair chopped off.  I'll be fine in the end, but it's going to be an upstream swim against my own stupid vanity.

Backstory...
Let's pause and celebrate my completion of my 2nd round of chemo today.  I'm 1/4 the way through these treatments.  Not quite where I can see the end yet, but one step closer.  Check out my chemo countdown board.  Two checkmarks! 

By the way, the temperature outside today was NEGATIVE SIX degrees (with a -15 degree windchill) when we left the house to go to chemo this morning.  I tell ya, I'm a trooper, (Joe's not so bad, either).  It went fine.  Here's a pic of me getting my infusion.  I have my work table set up (lap top, check.  green tea, check.) and a fantastic view of a very frozen Lake Michigan in the background.  I love the 4th floor of Prentice Women's Hospital. 

Hair
My hair started falling out yesterday.  In. Chunks.  It sucked.  I am not quite sure how to emphasize this point more.  My dad, a terrific writer who put all four of his kids through college with the money he earned from crafting words into stories, would be much better able to describe just how much this sucks.  More eloquent and certainly not as crass.  I am 100% sure he wouldn't use the word "sucks."  By the way, for the record, my dad still has a great head of hair. 

But, I'm not so creative when it comes to description.  I can just tell you the facts.  I woke up yesterday and before taking a shower, I brushed my hair.  My hairbrush was full of hair.  Then, I took a shower. My hand was full of hair.  Then my towel.  Then my hairbrush again.  Then my desk at work.  Running my hands through my hair in a meeting yielded lots of long strands falling on my clothes, on the conference table.   I spent our entire staff meeting picking hairs from my wool dress. 

I'm not going to lie.  It was pretty gross.

This morning, more of the same.  Joe heard me sniffling in the bathroom before we left and came in and hugged me and told me how much he loved me.  We had a "moment."  He knows that whatever he says isn't going to make this stuff go away, but it's sure nice to have him around to say it anyway. 

So.....the story ends with me going to Brian Blanchard salon tomorrow at noon for a "cut," whatever that means. They won't shave my head, but they'll cut it very short. Joe will be there.   Then, I'll walk out in my new wig and go across the street to the Gleacher Center to attend Beloit College Economics Day in Chicago.  This is where current Beloit econ majors meet up with alumni in Chicago.  It will be a nice test drive of my new hair before going back to work on Monday. 

Altantsetseg
By the way, I'd like to take this opportunity to thank the, likely beautiful, Mongolian lady who sold her long, luscious hair to help me have a more normal existence during this experience.  I only wish she got to keep the bulk of what I'm paying at the end of the channel.  I'm sure she didn't. Next time this happens, I'll try and work this whole hair buying around a trip to Ulaanbataar and buy direct.

According to Wikipedia, "Altantsetseg" is the most common female name in Mongolia, so that's what I'm calling this wig, since that is the best chance I have of guessing the woman's name who grew this hair.  Altantsetseg means "Golden Flower" - I guess I'll call it Setseg for short, or flower. Thanks, Setseg. I hope you're doing okay over there.  I bet you have a boatload of kids that you're trying to feed.  I hope your husband's nice.

Maybe I should develop a non profit that connects people who buy human hair wigs to the women who grew it.  Wouldn't that be fantastic?  I would love to meet Setseg...and help her family over the long run through direct online donations.  Hmm...maybe an idea for post-cancer life-changing career.  File away in brain under "dream jobs" and also under "women helping women" and "jobs involving travel to colorful countries." 

Snow Blizzard & How Much I Miss Beer
Everyone and their brother is full of stories of the "Great Snow Blizzard of 2011" -- and I know it's sort of annoying.  So here's ours (ha!).  Joe and I were, indeed, snowed in.  Electricity went out at around 2am (brownout, not total), but it wasn't enough to power my big bad furnace, so we were cold the entire morning.  Just as it all came back on (thank you, ComEd), we were headed out to play in the snow and to get some lunch at Silver Cloud.

Here's a photo of us along the journey and then of Joe "doing what comes natural" for Joe -- drinking what looks to be a delicious glass of pilsner.  Yum.

Young Survivor Coalition -- Cancer Friends
I'm a "joiner".  I always have been.  I can't help it. I'm type A and I like meeting new people.  So, I joined Gilda's Club last week and I attended my first YSC meeting for young breast cancer survivors. Misery loves company - and (unfortunately) there were a lot of women in that room.  I met in person some great women I have connected with online in the past -- and a new woman whose diagnosis and timing is nearly identical to mine.  She's one week behind me on her chemotherapy. So, it's helpful to have another woman to go through this with while it's happening.  And, she's just a nice person. So are the others.  I shouldn't call them cancer friends.  I hope they'll become friends of mine "who have once had cancer but now don't."  That's the goal. 

To use the analogy of Alice in Wonderland, these ladies are sort of like the little animals that Alice meets while she's swimming in the pool of tears (is this getting too cheesy?). They are people (or animals) along the way who keep you moving while you're in the Rabbit Hole.  The one woman with the nearly identical diagnosis to mine I sort of think of as the Mouse from Alice in Wonderland, swimming alongside me. [Hi Mouse -- I know you're reading this. See, you're not going through this alone. And, look, I'm writing a useless blog, too!  :-)] 

In Conclusion
Despite this excrutiatingly long blog post (I wouldn't have read the whole thing if I were you), I don't intend to let cancer to define me.  Some people decide to go that course.  I won't. It will be something that will have changed my life for the better. But it won't define me.

I am interested in a lot of things: Like the overthrow of Hosni Mubarak in Egypt, the future of Palestine, the inflation rate in China and Brazil, the future of the US retirement system and why americans don't save more money, art history as a whole and the history of art museums as institutions, novels (particularly ones turned into BBC Masterpiece productions), putting a woman who is not Sarah Palin in the White House, playing and listening to piano, hiking and climbing mountains, travelling to places where interesting cultures emerged, the organic food movement, etc. 

Prior to this, I had no interest in health care or medicine.  So, now I have developed a new interest that happens to be personal.  But it won't take any of those other interests away from me.  It will make me more passionate about all of them.   

Okay, that's enough. I'm obnoxious for posting such a long update.  If you can't write your thoughts in a concise way, you're not a good writer.  Guilty as charged.  But I'm not out to prove anything. Just to get a few things off my mind every other week.  Thanks for sitting with me and listening.  I really appreciate it.  Now, screw your to-do list and go do something fun.  Life is short.

Peace and Joy and Love and Health.
~Bonnie

Day 60: Happiness and New Beginnings

Wow.  It has been less than a month since my last blog post, but I feel like my entire world is different now.  I have so many thing to report to you all.  Apologies in advance for this long blog post.  And, of course, this being a blog, it's pretty much all about me, so further apologies for talking about myself and posting pictures of myself shamelessly.  It's self-indulgent, but it it's an easy way for me to keep you all updated and have you share in this experience called life.  No one is forcing you to read this, after all :-)

Where to start?  How about with the fun stuff? 
Joe proposed to me while we were in Europe two weeks ago. We had just finished a delicious dinner in the beautiful little town of Delft, Holland and were walking along a quiet, beautifully lit canal when he proposed. It was perfect and I wouldn't have changed a thing.  We headed back to our quaint hotel, which overlooked white-lit trees and a small canal, toasted to our engagement, and called our parents.  We are very excited about planning this phase in our life.  While we both know that a wedding won't happen for over a year, it is nice to have things in motion.  Here are some photos from our lovely trip, where we visited Amsterdam, Haarlem, Delft, The Hague, Bruges, Paris, and Brussels.  It was perfect.

Engagement Photos
After we got back, we found a photographer to take some shots of us at the Art Institute of Chicago, which is where we met.  These are preliminary shots from the photographer's website (Jen Soares Photography -- she is great! -- check her out at: http://jensoares.com/), but I thought I'd give you a sneak peek.

Hair
Also, I visited a wig shop last week and found my wig.  I'm happy with the way it looks.  Given that I'll be at work supervising my group and holding meetings with external contacts, I wanted to get something that looks the most similar to my current hairstyle.  I  may mix it up as I go through this. People have said they hate wearing wigs, but I want to try this, and if doesn't work I'll just use it for special occasions.

A before and after of me in my new wig

Before

After

They'll thin out the wig a bit and make some changes to the final fit once I go in, but I really like this salon. They are big on having me tell people that I got my hair glazed and that's why it looks so dark, luscious and thick.  It will be fun to have such a nice head of hair after years of dealing with my stringy locks!  Let's hope I actually wear it....at least to work and back each day. 

Chemotherapy -  1 down, 7 to go
Finally, I had my first chemotherapy treatment today.  My mantra for the day was "You have to start in order to finish."  Last night, Joe gave me a present from his wonderful sister (and my future sis-in-law!), Melissa -- a "Bonnie Kicks Cancer" chemo countdown board.  It is something we posted in our kitchen and to help me mark off the number of chemo treatments we have left.   So, today, I was able to put a checkmark on top of the "8".    Seven, you're next, so watch out...

Chemo went fine while I was there. The Northwestern breast cancer chemotherapy facility is beautiful. I had my own room, with a bed and a couch, a DVD player, and a lovely view of Lake Shore Drive and Lake Michigan.  I should have taken a photo of the view, but here's a shot of me getting one of my infusions.  See, I'm smiling! It's not every day you get two hours of uninterrupted time to read an interesting book. 

I still can't believe how far medicine has come even just in the last 10 years. I am still reading "The Emperor of All Maladies" and it is eye opening.  Examinations of the white cell counts of victims of mustard gas used in WWII found that a derivative of that chemical (called Cytoxin) was helpful in reducing fast growing cells. Doctors were able to develop the entire field of chemotherapy based on that and other amazing discoveries around the same time and have continued to improve upon it.  It just goes to show that good things can happen despite evil...and I am grateful to all those people who came before me to help improve our knowledge of the human body.  I think about them. Every. Single. Day.

I did my treatment very early today and was home by 11:00am.  I took a nap, drank a LOT of water, and still feel a headache and a little queasy, but for the most part I'm doing okay.   Mr. Stanfield has been keeping me company and han't acted differently towards me since my diagnosis at all. 

SUMMARY

You have to start in order to finish. 

Today was my big start.

Happiness is in the air -- Joe and I are getting married, we had a successful fertility treatments (more on that later), and are excited to start our lives together. 

And, I can't wait until my next chemotherapy session.  Why?  Because I want to get closer and closer to the end.   The only way out is through.  I'm in this.  I'm committed.  We're winning this fight.

Love and Peace and Joy and Health.