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

Day 20 - RIP Elizabeth Edwards

 

Before I start my update, I just want to recognize the phenomenal resilience of Elizabeth Edwards.  She was so impressive and amazing and it was just a tragedy yesterday to hear of her death from metastatic breast cancer at the young age of 61.  Her breast cancer was discovered to have returned in 2007 and to have metastasized in her bones, which typically has a pretty grim survival rate.  Here is a link to the Slate article announcing the return of her cancer back in 2007.

http://www.slate.com/id/2162548/

So, to all the people who are like Elizabeth Edwards out there whose breast cancer-related deaths were not publicized in the NY Times and on NPR, I salute you.

My Update: Another MRI biopsy?  Seriously?

I can't believe it has only been 20 days since I first received my diagnosis.  I am exhausted thinking about all the work I have done trying to schedule appointments, get test results, etc.

So, I'm writing this on a relatively bad day since I'm tired and overworked and stressed about getting some certainty back into my life, which is a sisyphean feat.  These are the highs and lows of this whole experience.

I was feeling high on Monday with the knowledge, communicated to me orally by my doctor friend on the inside.  I was so relieved when she gave me the news (negative biopsies!). She didn't really make it clear to me that she was (potentially?) stepping on anyone's toes by giving me this news orally, but apparently, she was.  The process is to wait until the results are in the "system" and then someone "official" would have called me.  As of the end of the day on Monday, I heard nothing. I called my nurse navigator to check in and I apparently blew my friend's cover, which I feel horrible about. She has been nothing but kind and concerned and, to be honest, it was great to get information before it was available to the public. 

So, that was yesterday afternoon.  When I finally did get a call with my official results (which was not until Tuesday afternoon), they indicated that they still wanted to get a biopsy of the third area of concern, so that meant going through the whole process again.  Great. 

So, the update is:  one more biopsy on my right breast will be conducted tomorrow morning at 8:30. The finger crossing needs to start all over again.   My radiologist had indicated that she was "less concerned" about this area, but I think she just wants to make sure she's covering all the bases.   I  hope it turns out to be nothing!

By the way, I'm starting to feel like a pin cushion here. 

In addition to finding out that news, I also find out from my genetic counselor that my insurance has been holidng up the process of finding out my BRCA mutation results.  I am furious!  I was able to call the lab to get them to start to at least run the bloodwork for my test, which meant the "1-2 week waiting clock" was reset yesterday. 

I have a lumpectomy scheduled for next Wednesday.  It would have been nice to have gotten the genetic results  before that, since if they come back positive, they will likely call for a surgery much more extensive than just a lumpectomy.  But, I probably won't have those test results  back before the surgery date (which is a week from today).  So, we'll likely just proceed without the genetic results.  I am still praying they are negative. I really don't want that BRCA gene mutation.   I know people who have the mutation are able to go on to have completely healthy and happy lives, but it would just cause another element of difficulty into my current situation if it comes back positive.

Also, I am starting to get increasingly nervous about my pending surgery / lumpectomy. The reason is that in the surgery, they will be able to extract a tissue sample of my lymph node to determine if this cancer has moved to my lymphatic system.

The research I read today indicated that, since I have not received a diagnosis of inflamed lymph nodes through phsyical exams, I am at a reduced risk for having them be infected at this point in time.  That said, in cases like mine, where the doctors have felt nothing in my lymph nodes, I still have a 30% chance of actually having a positive read for cancer in my lymphatic system.

This makes me incredibly nervous, friends.  I will know within the next 1-2 weeks the true extent of this nasty, nasty tumor, which, by the way, has been acting up lately. I can't wait to get this alien creature out of my right breast.

New Schedule

• Third MRI biopsy scheduled for tomorrow (Thursday). Hopefully results will be NEGATIVE and will be in by Friday.
• More discussions with fertility doctors tomorrow following my biopsy
• Genetic mutation test clock restarted yesterday (Tuesday) for results 1-2 weeks from then.
• Surgery still scheduled for next Wednesday (one week from today!) to get this horrible lump out of my body.  I will also find out shortly after surgery the status of my lymph nodes.

Book Recommendation

I haven't actually read this book yet but I saw the author interviewed on Charlie Rose last night and I can't wait to read it (I think it's going to be a Christmas present to me from someone near and dear). It's by one Dr. Siddhartha Mukherjee, who was a brilliant guest on the Charlie Rose show and is a true genius.

The name of the book is: "The Emperor of All Maladies: A Biography of Cancer" -- here's his website.
http://authors.simonandschuster.com/Siddhartha-Mukherjee/49784674

Okay.  Signing off for now.

- Peace and love and joy and health.

Day 18 - "Are you ready for some good news?"

I got a phone call early this morning from my oncologist, Virginia.  She said, "Are you ready for some good news?"  Am I ever...

Apparently, both of my MRI biopsies from last Friday are negative!  I am so happy.  That doesn't mean that I'm totally out of the woods yet but it is a big step closer.

Last Friday, I was in outpatient surgery for four hours getting these two simultaneous MRI biopsies. Even though it is just an outpatient procedure, it is a horrible experience. I wasn't expecting it to be that bad, given that my first needle biopsy (different procedure) was not that big of a deal.

But an MRI biopsy is much more complicated.  They scan you to find the target locations, pull you out of the scanner tube and then start placing thick straw-like needles and markers inside of the target areas of your body to make sure they have the right location. Then they put you back in the scanner with these needles poking out of you.  They verify via the MRI scanner that the needles are in the right location and then start taking samples.   Of course, I was numbed up for this procedure but you can still feel the pressure and hear what's going on.  You feel violated.  I know the team I had working on me was excellent (I had two doctors and 4 nurses and assistants in the room during this time), but it was tough to have all of those people examining me at once. 

I had 10 samples taken on each side.  The mechanism they use to take the samples sounds like a power drill.  The whole thing is just yucky.  It is done in a machine that looks like this.  The physicians are working underneath you to take the samples they need. 

 

 So....of course, I had to wait to get the results over the weekend.  Whether or not they came back positive would determine the extent of my surgery.   It was yet another rough weekend, although I attended a couple of holiday parties, which was fun.  I am still waiting to tell the people at these parties about my illness.  The holidays just seem like a bad time to be a downer.

I still have one more biopsy that my doctor originally wanted to do but given the placement of the area of concern, the logistics made it impossible to do last Friday.  Dr Wolfman (my amazing radiologist) indicated that she is less concerned about this third area since it looked "less suspicious" than the other two biopsied areas that came back negative, but I am waiting to hear back from her to find out if she wants to proceed with this additional biopsy.   If so, it will likely be done this Thursday. 

In other news, my genetic test results will take another week or so to come back to me.  So frustrating!  The results of these tests are a big deal.  Apparently, the only place in the entire country that can do this test is called "Myriad Genetic Laboratories" which sounds like the name of a nefarious company in a sci-fi action film that is hell bent on world domination (a la Dr. Evil).  But the truth is that Myriad couldn't be further from evil in that they are focused on genetic testing on an individual's risk of developing certain types of cancer so that doctors can have more informed treatment options.  I think Myriad is the only company that has the patent to conduct genetic testing on the BRCA gene mutation.    Here's a link to their website if you're interested in learning more.

Myriad Website

The ge test costs $4,000 and in order for my insurance to pay for it, they required Northwestern to write a letter justifying why it's important I get the test (if my insurance hasn't figured out I have breast cancer yet, they're going to find out pretty darn quick given all the doctors appointments I have already had!).  

Myriad won't start doing the testing until the insurance company approves the letter.  All of this happened last Tuesday, so the clock restarted last Tuesday for the 1-2 week time frame for results.  Hopefully I'll hear back this week. Hoping for the best on this one. 

So, running list of things I am waiting for:

- BRCA genetic mutation results

- Undergo a third MRI biopsy (TBD)

- Results from third MRI biospy (TBD)

- Surgery (hopeully a lumpectomy) and sentinel lymph node biopsy results to determine lympatic stage of cancer (scheduled for 12/15).

Peace and Joy and Love and Health

Day 14 - Numbers, Numbers, Numbers. Mine is: 1.394

Numbers Numbers Numbers.
My number is 1.394

I got my AMH fertility test back today.  The reading was 1.394, which is normal.  The lowest normal score for someone in my age group is 0.51, so I'm "right in the middle" according to my fertility counselor.  That's good.  She said that the highest score that exists is apparently 7.51 but that she has never even seen an 18 year old with that high of a level.  So, I think I'll be okay.  It's not as high as I would like -- being an overachiever, I'd like to have had 3 or above, but 1.394 is definitely doable and is completely normal, according to my awesome oncological fertility navigator, Kristin Smith, at Northwestern. 

The last couple of days have actually been okay, so my spirits are up. I had another mammogram and an ultrasound.  During my ultrasound, the head radiologist for the Lurie Center of Breast Health indicated that she couldn't even see those areas of concern from the MRI. This is good news, apparently, but nothing is for sure until the MRI biopsy, which they were able to move forward to tomorrow (a full 6 days earlier than the original December 9 schedule date). I'd like to think they moved it forward because I have friends in high places at Northwestern (my friend Dr. Kaklamani), but it's probably just because I complained so loudly they moved it up.  I am excited to get that information and have it all behind me.  I hope to get results from the pathologist by tomorrow close of business ... or by Monday at the latest. 

During the ultrasound, the radiologist also scanned my axillary lymph nodes for any abnormalities and saw none. That doesn't meant that there isn't anything there, but it's an incremental positive. 

As I am starting to talk to people about my illness, I'm hearing a lot of horror chemo stories.  I can't even think far enough in advance to the chemo stuff, since that's after the New Year and so much will happen before that...but it's starting to make me anxious and scared about how bad chemo can be. 

In other news, the puzzle that Joe & I worked tirelessly on during the weekend after I was diagnosed to keep our minds off of the diagnosis, and which was 90% completed, and just needed about 1 more hour of my focused time to be 100% complete, was totally destroyed by Joe's cat the other day.  Mr. Stanfield apparently was "spooked" by something and jumped on the table and seemingly ran in place for 5 minutes scattering pieces everywhere. Fortunately, I wasn't there to witness this (or he would have been put out in the cold for a few days like a cartoon character dog).

Here is a picture of the perpetrator, Mr. Stanfield.  He is in big, big trouble.

Okay, so here's the running list of things I am waiting to hear back on now:

- BRCA genetic mutation test (hoping for a negative read)
- MRI biopsies x 2 (hoping for a negative read)
- Lymph node biopsy during surgery (hoping for a negative read)

Thanks for all of your support through this.

Peace.

Day 12 - Complexities on the Compound

I had a bad day today. For work, I had a half-day meeting with the people at Fisher Investments, which is located in the mountains outside of San Francisco.  It’s typically an interesting meeting location, given that Ken Fisher has his house and investment firm headquarters all in one building in a strange, but beautiful compound overlooking Half Moon Bay.  The bad part of this meeting was that it’s impossible to find, so Fisher Investment employees insist on picking up visitors at hotels in San Francisco and driving them the one hour drive up the winding roads to Woodside, CA.  Also, in that redwood filled acreage, cell phone towers are few and far between and calls are dropped frequently.  I found all this out today.  Check out the location's aerial view...

During this great one hour drive, in the backseat of a highly compensated Fisher employee’s Prius, I received a call from Northwestern indicating that I couldn’t get MRI biopsies scheduled for another 10 days (on December 9).  This, of course, was upsetting given that the results from these tests will determine whether or not I can keep my breasts.   

It wasn’t just upsetting…it was cruel and unusual punishment, in my mind.

Can you imagine if someone said you has some suspicious element in your body that “may or may not” require complete amputation of one of your critical body parts….and that, due to a high volume of other patients, you’d have to wait for two weeks to find out whether or not they had to amputate.  You’d be anxious and mad, right?  Well, now you know how I feel…

Not to mention I was stuck on some compound outside San Francisco with no reception and no privacy for 5 hours while this is all going on.  How do you manage personal issues when you’re leading meetings all day?  Whenever my phone moves, I just excuse myself from these meetings.  I know it’s rude, but at this point, I don’t even care anymore. 

I know I have been bitching and moaning about this potential mastectomy, but it’s a super big bummer….and psychologically just draining.  

I texted my oncologist Virginia to see if she could help me get in earlier for the biopsies and she texted me back telling me to “RELAX.” 

I don’t know…if it was her right breast, would she be relaxed?

It turns out she couldn’t pull any strings and told me that the MRI technicians were “squeezing me in” on the 9^th as it was and that I should see a psychologist to help me deal with all of this waiting and uncertainty.  So, I have an appointment tomorrow for another mammogram reading (which will probably not tell me anything I don’t already know) and then with the psychologist to tell me that I need to stay calm. Thanks. 

So….I guess this Christmas Party that Joe & I were planning for the 18^th of December won’t happen now.  I spent hours making the invitation and collecting the mailing addresses of all the people we were going to invite.  And now I have to tell them to “never mind.”  

Here’s a mock up of the invitation – isn’t it cute?

But, given that I may not have a breast on the 18^th, I am not sure if I want to move forward with this party.  And, since I won’t find that out until the 10 whether or not I will have a breast removed, I can’t very well invite a ton of people to a party with less than 8 days notice right before Christmas.

Thanks a lot, Cancer, for not only ruining my body but for also ruining my social life. You asshole.

Christmas is my favorite holiday of the year.  And I have wanted to have a Christmas party for years and I finally am in a place where I can actually *do* that and this fucking thing happens.

So, this is the running count of all the stuff I need to hear back on now:

1)      BRCA gene mutation test (hopefully it will be negative). - Within the next week.

2)      AMH blood test for fertility (hopefully the reading will be high) - Within the next week.

3)      Additional mammogram (not sure why but probably just because they want it done at Northwestern rather than were I had gotten my original mammogram done). Will be conducted tomorrow with results before weekend.

4)      MRI biopsy of three separate areas (two in right and one in left breast) -- not scheduled until December 9, with results on December 10, hopefully all negative so that I can stick with a lumpectomy.

5)      Surgery (lumpectomy or a mastectomy) scheduled for the 15^th, at which time they’ll do a lymph node biopsy to determine if this cancer has spread to my lymphatic system (hopefully this will be negative).

I have no new information since I last wrote this.  Only that there is more waiting.

I am heading home to Chicago now.  My flight arrives at 11pm and Joe will be waiting for me then.  I can’t wait to be with him.

Peace and love and joy and health.

Day 11 - Depressed in San Francisco

The bad news just doesn’t stop coming.  I feel like I went into my OB GYN two weeks ago with an annoying little cyst and, after seeing another doctor, found out that it was, in fact, cancer.  And then after talking to yet another doctor, I found out that it was not just some easy self contained cancer, but invasive and triple negative at that.  Every time I see a new doctor I seem to just get more and more bad news. It makes me want to stop going.

Today, my MRI results came back and the radiologist wants me to go in for two additional biopsies.  He actually wanted me to go in for three biopsies, but will start with two and take it from there depending on how bad the results are.  One biopsy will be on the other (left) breast…the MRI picked up a suspicious mass on that side.  Both the radiologist and my oncologist friend informed me that they are less worried about the lesion on the left side.  MRIs are oftentimes over sensitive and there was a 50% chance I would be called in for additional tests.

The right side, however, is more concerning given its location.  It is in a typical location from where my original tumor would have spread.  I was told that, if that “suspicious mass” comes out positive for cancer, then I’ll have to get a mastectomy on that entire right breast, so additional biopsies would not even be necessary since the entire right half of my chest would, essentially, be in the garbage bin as medical waste.  This is horrible news.  I was hoping for just a lumpectomy.  All the survivors I have spoken with have received lumpectomies, not full mastectomies.  I haven’t known of anyone in my age group that had to get a mastectomy. 

I am extremely depressed. 

I love my right breast.

It doesn’t help that I was in Seattle for work when I learned this...en route to San Francisco for another work meeting tomorrow.   I am heading home tomorrow.   I almost just booked a ticket straight to Chicago from the Sea-tac airport tonight.  I hate being away from home.  I knew I shouldn’t have come on this goddamn trip.  I would rather have Joe with me right now to tell me how much he loves me in person.

I have yet to schedule this MRI biopsy as they have to call me tomorrow to make an appointment…the radiologist said I might be able to go in on Thursday or Friday, but god help me if I have yet another weekend of no answers.  I just don’t think I can handle that when it comes to finding out the life of my beautiful right breast. 

Before this, I thought I was handling this cancer thing pretty well.  I can adapt to the idea of having chemo, losing my hair temporarily, and even…..even, the whole idea of this cancer potentially taking my fertility away, but when people start talking about permanently taking away this beautiful thing of mine….it’s so awful that i can’t even write about it.

Day 10 - The Waiting

Today is Monday.  It's 4am and I'm up because I feel more in my breast today than yesterday.  Psychosomatic?  Maybe.  But for whatever reason, I feel like my lymph nodes are worn out.  I have to admit, I did have a cocktail on Saturday night.  I went to a friend's post-Thanksgiving Day party.  I didn't tell anyone there about my cancer.  And I drank two beers and a cocktail.  It felt great.  It was some serious denial.  At some point, all of those people at that party will know.  I am hoping to wait until the absolute last moment until I have to tell them...you know, when I start wearing a wig and all that.  That will be the point when, if I don't say something, they'll just be weird about me sporting some bizarre fashion wig. 

I travel to Seattle and San Francisco for work today.  I was originally not going be back in Chicago until Wednesday night, but I am going to try and get back on Tuesday night instead.  I should have cancelled the trip.  I cancelled the one that was scheduled for the Monday following my diagnosis.

But, I went into work for a few hours last week and I felt good. It was following my good day of meetings at Northwestern where I felt upbeat for the first time.  So, I kept this trip on the calendar. 

It was a mistake.

I am worried about this trip.  I will be with a junior employee who I'm not interested in talking about this with.  She knows...I had to tell her last week, given our trip. But if I don't feel up for talking with my friends about it, I *really* don't feel like talking with coworkers about it.

I am so sick of talking about it.

I want my test results now.  I am certain I will get them during my trip.  It could be a high or a low...or neutral.  There seems to be a lot of neutral news in those whole cancer thing.  Waiting and more waiting.

It's like Tom Petty says, "The waiting is the hardest part."

Fingers crossed for three ideal results this week:
1) BRCA negative (ie, no genetic mutation that require a double mastectomy),
2) MRI results normal and requiring no follow up (ie, no mirror image cancer in left breast and no swollen lymph nodes detected,
3) AMH levels high (ie, the gas is my fertility tank is still high).

Peace.

Day 9 - Ready to talk about it

Day 1: Friday
I found out I had invasive breast cancer on November 19 -- nine days ago.  It was a Friday at 3:00 in the afternoon and I was sitting in my office having a meeting with my assistant about a busy week ahead.  And everything was fine.  Until I got the phone call and then everything stopped.

My doctor called me to tell me that my biopsy results came back.  She said, "It's not good."  I told my assistant to leave my office and I took the call.  That's when I heard the word.  "It's cancer."  Everything after that is a blur.  I just know that I was taking notes in a legal pad and that my right hand -- the one with the pen in it -- just couldn't stop shaking.  My life as I knew it had just ended. 

I called Joe at work.  No answer.  He called me back and I told him what I learned.  He told me that he was coming to get me.  He met me in my lobby and I tried to walk out of my office building with my head high and without any tears.  He put his arm around me and called a cab. After ushering me inside, I fell apart.  I tried to tell him everything, but I couldn't get it all out among all the tears.

My doctor called me back. She said she didn't know any of the other results -- other than it was positive.  She didn't know what stage or the grade of this cancer.  She indicated that the pathologist called her while he was still looking through the microscope at my cancer.  She gave me his number.  I called him.  He told me it "looked like it was more on the agressive side of the scale."  Great.

My mammogram technician also called me to "check up" that day and I told her my results. She scheduled a meeting with me for Monday at 3pm with a breast surgeon and indicated he would have more information for me then.  So...let's see--that was a full three days to wait.  I knew nothing other than I had invasive breast cancer that was "aggressive." 

Joe and I sat together.  We talked about not talking about it with anyone until I found out more.  We went to Target and got a puzzle to try and keep our mind off of the cancer all weekend. 

Day 2: Saturday
I woke up on Saturday and thought, "I have two more nights like this?" It was horrible.  

I told my sister and, ultimately, decided to tell my parents by Sunday night. 

Day 3: Sunday
I also emailed my friend Virginia, who I happened to remember during this foggy weekend, was a breast oncology researcher at Northwestern.   She responded and indicated that she would schedule meetings for me at Northwestern on Tuesday.  By Monday morning, she had set up three meetings for Tuesday.  A 10am with the genetic counselor, an 11am with a breast surgeon, and a 2pm with a fertility counselor to talk about "fertility preservation options." 

Day 4: Monday
Before I could proceed with meetings at Northwestern, Virginia instructed me to pick up a CD of my mammography and ultrasound at the radiologist's office.  She also wanted me to pick up the "slides" that the pathologist used to make my diagnosis. Apparently, Northwestern wants to do their own interpretation of these diagnostics. 

So, on Monday morning I drove up to Evanston Hospital - the hospital where, on September 28, 1974, I came into this world -- to pick up my cancer slides.  I hadn't been back there since the day of my birth...and I feel like going back there now, to pick up a package confirming my cancer, containing my cancer, made me sick to my stomach.

While I was there, I was able to get a sneak peak at Dr. Watkins in front of a microscope.  He was the nice looking pathologist who determined the diagnosis that changed my life.  I also picked up a package from his assistant.  A sealed, padded manilla folder that contained my cancer.  I walked out of that hospital like I was carrying something sacred.  It was eerie. I wish I hadn't been alone for it.

Fortunately, later that day, I picked up Joe.  He went with me to see the first doctor (a breast surgeon  named Dr. Klause) on Monday at 3pm at Highland Park Hospital. Dr. Klause isn't in the network I want to be in, but he could see me first and, supposedly, would give me more information, so I took the meeting.  He felt me all over.  He looked at my mammogram reading. He said I would need chemo.  And that I had weak receptors.  And that my tumor was large (2 1/2 centimeters) and that chemo could come before surgery to shrink the size of my tumor before cutting it out of my body.  I was confused.

During the long ride back to Chicago, my genius oncologist friend Virginia called.  She said that what the doctor read to me meant that I was "triple negative" which is a very aggressive cancer that doesn't respond to any treatment other than chemotherapy.  She said I had to have chemo.  This was bad news for me.

Day 5: Tuesday
The next day I went to my three meetings at Northwestern.  I did the genetic counseling session on my own.  Joe met me for the other two meetings.

I gave blood for the BRCA gene mutation test.  I won't find out the results for another week.  If they are positive, I will need a double mastectomy and both my ovaries out.  If not, I just need a lumpectomy and chemotherapy (hopefully).  I hope it's negative....I have a 90% chance that it is.    I still don't want to have chemotherapy, but it sounds like that is a necessary evil of all of this.

The other meetings were with the sugeon and the fertility specialist.  The surgeon indicted that I should have the lumpectomy first and we scheduled a date for that surgery (12/15).  I had an MRI scheduled as well.  She indicated that 2 1/2 centimeters isn't that big.  Stage 2, if it hasn't progressed to my lymphatic system.  They won't know if it's in my lymph nodes until after they do the surgery. 

The final meeting of the day is what will keep me going during this whole process.  Given that I will definitely be on chemotherapy, Joe & I need to take steps for fertility preservation, since chemotherapy kills all fast growing cells - including those that surround any eggs, causing them all to die.  The doctor we spoke with specializes in fertility preservation for oncology patients.  He used to called "Emergency IVF" but he said that scared his patients, which is why he changed the name to "fertility preservation." We thought the doctor was pretty funny.

He order a blood test (AMH) for me.  He said the purpose of the test was to, "determine how much gas you have left in your tank."  Hopefully that comes back high. I should know by the end of this week.

After that meeting, I left with my spirits high.  I want to marry Joe, get pregnant, and have a baby.  We wanted to start doing those things in 2011.  Unfortunately, 2011 is now going to be the year that Bonnie Kicks Cancer.  If I can see through to 2012, I know I'll be able to make it through this. 

Day 7: Thanksgiving

Thanksgiving happened between those days and my writing all of this.  It was at my sister's place in Oak Park and it was lovely. I do have a lot to be thankful for:

First of all, for Joe.  He is my everything. I am so lucky to have him by my side during this. 
Second, for my family. My wonderful mother and father, my siblings, and my beautiful five nieces. 
Third, for the fact I have the means to have the excellent health care I will have during this ordeal. I am lucky to have health insurance and to live in a large city with a research hospital.
Finally, I am thankful for my tenacity to kick the shit out of this cancer.  I summited Mount Kilimanjaro in 2007.  I ran a marathon in 2008.  I am going to beat this thing in 2011. 

Peace.