Friday, February 25, 2011

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 It was full of interesting historical references and practical applications to math -- things that were actually fun to learn about like Pythagoras and his "golden rectangle" theory that was the basis for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

Thursday, February 10, 2011

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