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.

Day 41: Focused on fertility & windmills

For the last week, I have been on hormone injections to increase my follicle (ie, egg) production to increase my chances of having as many as possible harvested.  I have gone in nearly every day since Christmas for checkups.  I feel pretty "full" and have been waddling around to reduce too much internal movement.  The prognosis has been good.  My body has been taking to this medication. 

I received a call from my nurse today indicating that I will have my eggs extracted on New Years Eve day.  I am happy to hear that I have some viable eggs.  I won't know for sure about whether or not I will truly be able to have my own children until I'm at the back end of all of this in two years from now and they attempt implantation, but the fact that they will extract and preserve my eggs, is a huge positive and is my light at the end of this dark, dark tunnel.

In other news, Joe & I were able to change the dates of our trip to Holland and Belgium (and maybe Paris) but we will still be able to go before I start my chemo.  We have been looking forward to this for a while -- we travel so well together and love, just love, visiting museums together.  We can't wait.  We know it will be snowy, but we plan on tucking into a lot of gothic little pubs and sitting by fireplaces in cozy hotels. 

Wish me luck for this Friday.  I can't wait to make it past this mile in my journey. 

Peace and love and health and joy.

Day 32: One month and counting

So, yesterday marked the one month anniversary of me knowing about my cancer. I can't even believe how much has happened in the last month.  And...there is so much more to come.  The initial diagnosis and surgery are like the first two miles of a marathon.  They go by fast and you don't even remember them after you've completed the race.  I know have a long road ahead -- and the hardest miles are still yet to come -- but I know I can get to that 26th mile.  It's just so far out ahead, it's not worth thinking about it just yet.  I can only concentrate on the next few miles....which are fertility preservation and beginning my course of chemotherapy. 

Joe and I will definitely have to postpone our trip to Belgium and The Netherlands (he calls it our "Low Countries trip").  We were supposed to leave on December 29 and spend New Year's in Amsterdam.  Instead, I'll be trying my best to preserve my fertility options during that time.  We hope to push back that trip by one or two weeks so that we can still enjoy a European trip prior to me starting on chemotherapy.  I really want us to have that time together so we can have those memories to carry us through the rough patches ahead.  We will make it happen.

In other news, Joe and I ended up hosting a little Christmas party, despite my surgery.  I think it went well.  I clandestinely drank the non-alcoholic beer O'Doul's all night (not as bad as I thought it would be) since not all in attendance knew my health situation.  I have slowly starting to leak the news out to friends who were in attendance now that the party is over. 

It was a last social hurrah before starting chemo.  I'm really glad I did it.  Here are a couple of photos from that party (one of me and Joe, me and Marian, and me and Jenny & Tenaya).  I think people had a good time.

Finally, my post-surgery situation is okay.  I am mobile but the incision point closes to my armpit still hurts the most.  Joe & I went to a movie yesterday and did some holiday errands.  We will meet with the surgeon tomorrow for the post-operation meeting.  I already know the results (one positive lymph node; clean margins, etc), but we will likely get more details about survival rates at that meetings.  We pray for the best.

Peace and Love and Joy and Health

Day 28: One positive lymph node. Can't I get a break?

Today was the first day following my lumpectomy.  I was feeling surprisingly good, despite a little soreness and some heavy emotions resulting from the pain medication. 

That is, until I received a phone call from Virginia (Dr. Kaklamani) at around 4pm tonight with results from my surgery. I was not expecting anything back until next week.

Virginia told me that of the seven lymph nodes extracted during my surgery, one of them tested positive for cancer.  Major bummer.  She said that she will recommend that I do not do two rounds of fertility treatments (Joe & I can only do one) and that she wants to get me started on chemo in 4 to 6 weeks -- with no flexibility.  I really think she is concerned about killing all that could be out there in my bloodstream right now.

In addition, she said that she was going to put me on eight rounds of chemotherapy.  I haven't heard of anyone needing to do more than eight rounds, so that also made me nervous.

Virginia said that, at this stage, my cancer is curable -- just as long as I follow her instructions and do this heavy chemotherapy program.  In addition, regardless of whether or not I get a double mastectomy, I will need to get radiation on my lymph nodes to ensure that it kills all cancer cells in my nodes. 

The one bit of silver lining is that Dr Hansen, my surgeon, indicated to Virginia that my mass was 2.5 cm and they were able to get "clean margins" which means that they were able to take the entire lump out and left nothing behind. 

But I'm terribly sad it's in my lymphatic system...even if it's only in one lymph node, that means it could spread to my organs.  I am so, so scared, friends. I don't want it in my organs.  That is why Virginia is going to zap the heck out of it with her chemotherapy program.

Finally, Joe & I will lose the option of doing a second round of fertility treatment.  We are heartbroken.  We wanted to get enough eggs to be able to screen for the mutation. We may choose to freeze all the samples regardless of the mutation status, with the hope that in 20 years from now, this won't even be an issue.  We will figure it out. 

But a combination of the meds and my new bad news is making me REALLY REALLY down.

I just can't seem to get a break here.  Every time I talk to a doctor, I get more bad news.

Peace and Love and Joy and Health.

Day 27: Post Surgery Report

Home Sweet Home

Certain people just can't stand the smell, the commotion, and the potential infections floating around a hospital.  I'm not in that camp.  I'm in the group of people who admire hospitals for their "mini city" qualities and for the intelligence and efficiences of the staff and operations. 

That said, I have seen a lot of hospitals lately...and not the good "new baby" part of my hospital, but the depressing "you have or might have cancer" area of hospital.  But now I'm home and I am happy.  My tumor is out of my body.  I am in pain, but I am also feeling a sense of euphoria that comes with knowing that horrible feeling lump is gone.  Good riddance. 

Today was a day of hope.  For one, my colleague Amy, who recently turned 40, delivered twins at 4:00 this morning in the same hospital in which I had my surgery.  I thnk that's a good sign.  New life, new hope.  New future.

Unfortunately, though, I am still nervous about what the future holds for me.  My surgeon Dr. Hansen, who is laid back and has a great, positive presence, indicated that of the two lymph nodes she extracted today, one of them felt more solid than they typically do. This makes me very, very worried.  She said that it could be swollen just because of all of the biopsies I have had to endure up to this point.  I am praying that is the case.  I do not want this thing in my lymphatic system.  I don't want it to have metastasized.  I am scared.

In addition to that, she said that instead of my mass being around 2.5 cm, it seemed to be more like 4 cm, so that means that my cancer could have been in my body for the last four years or so (it seems like the rule of thumb is one centimeter per year).  That gives it more of a chance to have spread to other parts of my body.  I am scared, scared, scared.

Nothing is for certain until I meet with her for the post op debrief next Tuesday.   I may get some "statistics" at that point, which is also a source of anxiety.

Friends, I am in need of some good news for once....your positive energy and words and encouragement is particularly helpful during this time.

In particular, I'd like to thank you for your words of encouragement so far...we're still in the early innings of this, but all your support is so, so, so appreciated. 

Thank you to:

My family (Mom & Dad, Suzy, Bobby & Katy, and Colleen & Scott)
Joe and his family for all their encouragement for "Miss Bonnie"
Angela (you have been the best peer support buddy I could have hoped for)
Ann & Josh for every time you say you are sending me good vibes and encouragement
Amanda & Bill for sharing and understanding my sense of frustration (and for my beautiful flowers!)
Jess & Fred for all their love and support and just for being good people
Paulina & Guy for all the texts and calls  (I do appreciate them -- never apologize for sending them!)
Elyse for understanding like no one else in my circle of friends can.
Christine for all her funny emails and for taking my mind off of this with online shopping
Catherine H, Fran G & family, Marian K, Lauren G, Tenaya B, Vanya K, Kris Z, Treasa M, Greg J & Patience, for the listening, references, and support

And everyone else who has helped me understand how much of a support network I have in this world. 

My initial site of the cancer is gone.  Let's hope I can follow Dr. Kaklamani's 15 year road map to recovery (which includes much happiness and parenthood and independence from cancer).....

Love and peace and joy and health,
Bonnie


ps -- I'm mobile but am opting not to leave the area in and around my bed for the next two days. It doesn't hurt that the weather in Chicago is around 10 degrees.  I feel surprisingly good for having had three incisions within the last 24 hours (lump, lymph nodes, and extra tissue area of concern for additonal biopsy).  I hope the "real pain" won't set in tomorrow.  I hope I am just one of the lucky ones who heal easily.  If not, I have drugs, so I may just be sleeping for the next few days -- not to mention family members who are going to come by to ensure I am tended to. 

Sweet dreams!

Day 26: I'm Nuclear

Surgery scheduled for tomorrow (and other good news)

Despite my horrible news from Friday (testing positive for the BRCA 1 mutation) -- I still have to carry on, right?

So, my surgery is still on for tomorrow.  Just to remove the area around the cancer.    I am not sure how quickly I'll be able to recover.  I hope it's pretty quick because I still have Christmas shopping to do!

Yesterday morning, I had a chest X-ray done as per pre-op protocol.  Later yesterday afternoon,  my nurse called to tell me that the x-ray came back "completely normal" - which means there was no evidence of any cancerous areas in the lungs or on the ribs.  Nothing is 100%, but that seemed like incrementally pretty good news to me.

Also, this afternoon, I went into the hospital for another pre-op procedure called sentinel node mapping, which is basically a fancy phrase that means they figure out which lymph node to dissect during surgery to look to see if the cancer has spread.

In order to get this mapping done, I had to report to the Nuclear Science Department (which sounds like something out of the Cold War era), and get injected with a radioactive pharmaceutical that then spreads all throughout my lymph nodes.  The technicians photograph the movement of the fluid to determine which lymph node is the sentinel one that needs to be dissected.  Then, tomorrow my surgeon, Dr. Nora Hansen, will make sure to grab that lymph node during the surgery.   They will dissect it and won't have the results until my post-op meeting with Dr. Hansen, which is scheduled for the 21st.  That is the date I will learn my "survival statistics" (gulp).   I'm hopeful that things will turn out well.

The most important thing about this surgery is that the CANCER WILL BE OUT!  I can't wait for this mass to be out of my body. I sort of want them to save it for me in a jar so I can look it in the eyes and tell it that I'm not going to let that gross grey mass beat me. 

In other news, I bid on a couple of awesome paintings in the Leslie Hindman fine art auction on Sunday and won them!  Check out my favorite piece (it's huge!).

Finally, Joe & I started looking at some diamonds in the upcoming LH jewelry auction.  Here's a picture of us diamond shopping.  I felt so glamorous!

So, it's nice to have somthing to look forward to at the end of all of this.

Joe and I just got back from a wonderful pre-surgery dinner at "Ruxbin" - a very hip neighborhood restaurant.  I had the superfood quinoa to get my strength up for a super recovery.

I came home to a beautiful bouquet of flowers with a note that read, "Bonnie, We would like you to know that you are in our thoughts during this difficult time.  You have our support and we wish you a speedy recovery. All the best, Your Research Team" 

Aww....that was sweet of the people at my office to do that.

Okay, all. Please, please please, put me in your thoughts and prayers tomorrow.   I hope all goes well and that I'll get good news from the miraculous Dr. Hansen on the 21st.

Peace and love and joy and health.
Bonnie 

Day 22: Does Anything Else Matter?

This morning I found out that I tested positive for the BRCA 1 gene mutation.

I am devastated.

Nothing else really matters now.  None of the MRI biopsies, at least.  I have a lot more to find out, but I *do* know that I will likely be getting a double mastectomy at some point in my life...SOON...and that I will likely need to get my ovaries removed in my 40s.

Immediately after I found out I called Joe, sobbing.  He asked me what I wanted to do and where he could meet me.  It was 10:30am -- I was on a conference call when I got the call on my mobile.  I told him, "Let's get together at lunch."  After I hung up with him, called my mother, and then realized the reality of all of this, I just left work for the day.  Picked him up and had him drive me home.

I have never cried more than I cried this morning.  I'm still full of tears.

The reality is this:

I will still get a lumpectomy this Wednesday.  They will still check my lymph node status at that time. I will still go through IVF and, according to Virginia, will go through "as many cycles as I need" to get enough samples to make sure that they can do the genetic testing on those samples to make sure I don't have children with this mutation.

Then I will have chemo.

After chemo, I have a choice to make.

Do I get a double mastectomy and reconstruction then (as prevention) or have radiation therapy.  I will likely choose the double mastectomy and reconstruction, but emotionally, it's hard for me to put that in writing.  I can't accept that reality just yet.

That will be in March or April or May or June. 

Today was the worst day of my life so far. 

March, April, May or June will likely contain the worst day of my life in the future.

After those horrible days have passed, we will hopefully get pregnant in a couple of years. And then, if we are lucky, get pregnant again.

Then, in my early 40s, I will need my ovaries removed. The BRCA 1 mutation accounts for virtually all ovarian cancer risk.  I am at high risk unless those get removed.  I will comply, but with significant emotional remorse.   I will have a private funeral for all that is feminine and womanly about me.  I will cry.  And cry.  And cry.

I hate this disease.

I will be on hormone therapy for 10 years and then experience true menopause.

I am heartbroken.

Some more details:

BRCA 1 mutation cancer doesn't typically spread through the lymph nodes. It spreads through the blood. That sucks because it's harder to figure out if it is floating around my body. That's what chemo is for, I guess.  So, I am assuming that even if my lymph node status is negative, they are going to chemo the hell out of me.  Which is fine, but not fine at the same time.    I hope to hell it's not in my bones.  Pray that it is not in my bones.  Or my liver. 

Who did I get this mutation from?

The genetic counselor is indicating that they think I got this mutation from my father's side.

Mom's Side (Probably Not)
Even though my mother's mother (maternal grandmother) died from breast cancer, she was 65 when she was diagnosed and 67 when she died from it.  That was in 1967.  There was no real treatment for it then.  Apparently *her* mother also died from breast cancer, but not until she was 90. And, my mother has had no signs of breast cancer her entire life.  So, given the age of the women on my mother's side prior to cancer diagnoses / death, it is likely not from their side

Father's Side (That's Their Guess)
Since my father is one of three boys and no girls, the doctors feel that there was enough "suspicion" on that side to warrant some concern of "above 10%" chance of this mutation on my end.  My dad is the oldest of three brothers. He is currently 73.  Both of his brothers are still living.  Each of my father's brothers have one daughter and one son.  One of the daughters (my cousin) has two daughters.  But my dad's mother lived until 72 and died of bladder cancer.  In addition, she was a serious smoker.  But my father's father also had no female siblings.  So there is more suspicion there as well, because there is just not a lot of "female information" on that side.

So, if you haven't already picked this up, men can carry the mutation.

The next step for my family is for all my siblings and my mother to get tested for the BRCA 1 mutation as soon as possible. I really hope they are ALL negative.  If that is the case, by process of elimination, it is coming from my father's side and my father is positive.   If he is positive, his brothers should also be tested.

This mutation does not skip generations. You need to have it in order to pass it down. There is a 50% chance it gets passed down from a carrier.  I just love how I am the evolutionary reject here.  Please, Science, help me *not* to be the runt of the evolutionary litter.
 
I really, really hope I am the outlier, here.  I hate to think of my siblings or cousins having to deal with this...not to mention all their beautiful children (all girls).  If there is ever a time to pray for the children, it is now.

I believe in the power of science and the wonders that it has brought to us.

I am lucky to live in a time where this mutation can be detected and I can take swift action to lower my risk of dying from this disease and preventing it for my relatives and, if I am lucky, for my children. 

I have faith in medicine.  But I still believe that this is so, so much more we don't know yet. 

Your thoughts and prayers are appreciated -- not just for me -- but for my entire family.

Peace, love, joy, and health.

Bonnie