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.