The inspiration for the Brookside Buzz blog is to document my physical, mental, emotional, spiritual and oftentimes hilarious journey through, with, over and around breast cancer.
To clarify: breast cancer isn't funny. Not at all. However, my journey? Frequently guffaw inducing.
Another clarification: I prefer to call breast cancer FBC. The "F" stands prominently for the F-Bomb. I've dropped quite a few F-Bombs since the diagnosis so, without being overtly crude, just know that when you see an "F" in my writing, you can safely assume what it stands for.
I believe that breast cancer happens within the ecosystem of family, friends and community. Consequently, I decided to take the holistic approach and write about breast cancer with style, a sense of humor and Silver Linings.
It is important to me that you hear about this journey from my husband (from this point forward, he will be referred to as "The Husband") and me directly, in our own words.
Throughout this blog, I candidly incorporate my personal and professional experiences as an Oscar de la Renta and Carolina Herrera-wearing Pediatric and Adult Palliative Care Nurse and Social Worker with graduate degrees in Bioethics and Child Development.
Many people have asked how it all began. So, I'll tell you the story -- from the beginning.
On September 28th, I was awakened with shooting pain to my right breast. I am a person can sleep standing up, with lights on and a live band playing. So, to be awakened is a rare occurrence. I immediately felt a lump. WTF?
I don't consider myself to be an alarmist and promptly went back to sleep. On September the 30, the exact same thing happened. WTF -- again? Reminding myself that I am not an alarmist, I assumed that this lump was a direct result of drinking coffee....a new and unfortunate habit to which I succumbed as a result of total fatigue. Additionally, I assured myself that breast cancer doesn't typically hurt. So, I wasn't particularly worried.
I was happy (and a little relieved), however, to already have an appointment with a gynecologist in Santa Barbara for a full checkup the week later.
Fast forward to Monday, October 11th. I had full check-up and I do mean full, including blood work and all of the other unmentionable components of a gynecologic exam. I directed my doctor to the lump in my right breast...still prominently palpable.
My doctor asked when my last mammogram was. I told her that I am 39 ¾ and that I had not yet had one. Well, you would have thought that I had committed a mortal sin. "What? You should have had one at 37," she said. I explained to her that I just moved from the Midwest where women typically don't have mammograms until age 40. I thought I was actually ahead of schedule, as I am apt to be.
She said that the lump was probably nothing, but that she wanted me to have a mammogram and handheld ultrasound as soon as possible. ASAP? Well, I wondered, if she thinks it's "nothing" then why am I rushing to get these tests?
I called the two places in Santa Barbara that do mammograms and ultrasounds. The first appointment availability was mid-to-end of November at each location. However, one of the two said, "if you come as a walk-in (promptly at 8:30 on Thursday), it is very likely that you will be the first seen." Okey-dokey. I'll be there.
The Husband was heading out of town on Wednesday for 5 days with a group of dear friends to Israel. This couples-trip had been planned nearly a year in advance. At the onset of the planning, I knew that I was not supposed to be on this trip. Why? I had no clue. Though I knew it would be an absolutely incredible, over-the-top trip, I just knew that I was not supposed to go. Because it was important to him, I supported his participation 110% (even though I had an inkling that he, too, was not supposed to go). I tell you this because I am a big advocate of intuition. When your inner voice talks, listen.
Before he left, he said, "If you need a biopsy, wait until I get back." Really? More of this alarmist talk...
On Thursday morning, I drove myself to my tests. Having someone come with me was not even in the realm of thinking. On my way there (at 8:15 am, by the way!), my gynecologist called to ask me when I was going for the mammogram and ultrasound. I told her to relax, that I was on my way there now. Geez.
Well, the mammogram went brilliantly. The tech was kind, gentle and apologetic for smooshing my breasts into the vice-like machine. Much unlike the horror stories I've heard from friends.
I asked if I could take a look at the images when she was done and it looked nice and fibrous. I was confident that in no time, I would be told to stop drinking coffee.
Next up: handheld ultrasound. I was taken into a nice, quiet, dark room and given a warm blanket, which had nap written all over it. Unfortunately, the technician was chatty, chatty, chatty. She was so nice, though, that I couldn't be grumpy with her. Then, she stopped talking. Silence. This, I knew, was not a good sign. However, I took it as an opportunity to catch a little shut-eye. When she finished, she asked me to stay in the room because she wanted to ask the radiologist if he wanted a few more images. No problem. She promptly returned 5 minutes later to squirt more gel on my breasts and take more images.
After she finished, she asked me to put my clothes on and wait in the waiting room. I asked her when I would get the results. She told me that the radiologist would see me before I left. Another bad sign. I wondered why the radiologist needed to tell me in person to stop drinking coffee. Seemed a little dramatic since I was only drinking one cup a day at most.
When I was finally called into the radiologist's office, my images (a lot of them!) were on 4 large monitors before me. He said, "I understand you are a nurse." Yes, I said. "Then, I assume that I can talk with you more directly and clinically than I would someone else." Sure, I said (though, I wondered if there was a clinical way to tell me to stop drinking coffee).
I felt as if I was about to be in a car crash, where everything happens before you know it, but it feels like slow motion. "You have 4 lesions in your right breast and 3 in your left. We need to do a biopsy today and an MRI as soon as possible. Here are the images. You can see right here..." WTF? WTF? WTF?
I said, Hold on... let me get my journal out so that I can take notes. I have always prided myself on being a good student, a diligent note taker. As I reached for my Moleskin, I noticed that my hands were shaking.
So, he proceeded to introduce me to my lesions (a.k.a. tumors). How the F did they get there so fast? They are big, too. I just had a full check up from my internist this summer, including a breast exam, and nothing. Not an inkling of anything.
The radiologist then asked if I was available for a biopsy that afternoon (by now the morning has evaporated and I've already had to rearrange preschool pickup). I told him that he just needed to name the time. 3:00. OK, 3:00 it was. He told me that I should probably bring a friend with me. Really? You think?
In the meantime, my husband had just landed in Israel and was getting ready to go to dinner.
My first call was to one of my dearest friends in Chicago, who went through the exact same thing a year and a half ago. No kidding. We went to nursing school together. We think the exact same way. I was with her at her diagnosis appointment, during her surgery, at her last chemo treatment. After a few F-bombs, she said, "This really sucks, but at least we know how to do this." Yes. We. Do.
After the revelation, my first question: what do I tell The Husband? He just landed-in Israel, for goodness sake. Ironically, her husband was on a weekend-long fishing trip when she received her diagnosis. At the time of her diagnosis, we talked through "Do I tell him or do I let him enjoy what will probably be his last worry-free vacation for a long time?" She decided to wait to tell him when he got home on Sunday night after all, nothing would happen over the weekend. She said that she felt like this was the only wrong decision that she made throughout her treatment and that my husband needed to get is toukis on the plane and come home.
So, driving down the 101 Freeway (which happened to be a construction zone), I called The Husband. In Isarel. Not the best idea for the delivery of the news. In fact, I'm so grateful that I didn't crash my car into one of the barriers when I burst into tears. "I'm coming home" is all I remember him saying.
In the meantime, I had already sent an email to my internist to talk through the events of the day, which were now moving at lightening speed. I at least had the wherewithal to realize that I couldn't see the forest from the trees and needed some level-headed clinical thinking.
My doctor called immediately -- love him. His first response was, "Whoa. Whoa. Whoa. Slow down. This is ridiculous. Things are moving way too fast. I'm sure this is nothing, but the first thing you need to do is an MRI. If you do a biopsy first, then, the MRI results can be skewed. You need an MRI and you need a Breast Surgeon overseeing everything." I immediately breathed a sigh of relief. Finally. Someone who is not an alarmist. He said, "I'll call you back in 5 minutes."
He called back in 5 minutes just like he said he would -- love that. He said, "Can you be downtown in 15 minutes to meet with a surgeon?" Absolutely.
Now that I finally had a voice of reason that echoed my own, for the second appointment of the day, it never occurred to me to take someone with me. Back on the 101 Freeway, I felt much more cool, calm and collected. After all, I was on my way to see a surgeon who would certainly tell me that this was just one big misunderstanding.
I arrived at the surgeon's office and was promptly escorted into an exam room, where my morning mammogram and ultrasound images were already up on the screen. Impressive. The surgeon greeted me with a warm and calming smile... and firm handshake (wimpy handshakes are a sure way to raise doubt in me). I felt instantly comfortable with her. She asked if she could do a breast exam. After whipping off my shirt for the 3rd stranger of the day, I hopped up on the table. When she was finished, she said that she was "worried." She agreed that both an MRI and biopsy were in order. She gave me two options: (1) I could keep my 3:00 appointment for a biopsy with the radiologist or (2) she would do the biopsy on the spot and then send me for an MRI. She assured me that if she did the biopsy, that there would be no problem in doing an MRI after. I trusted her surgeon's hands and said: Let's do this.
At this point, the poor, worry-wart Husband is now flying. No clue where in the world he was. All I knew was that he was unreachable and that I couldn't wait until he got home to do the biopsy, as he had requested. I knew that he would understand.
After I called to cancel the appointment at the radiology center, the surgeon proceeded to tell me that she would do a fine needle aspiration (FNA) of one of the lesions that was palpable on exam. After, she would do a large core biopsy of the other, larger palpable lesion (the one that woke me up). The location of the lesions were described in terms of a clock, i.e., the smaller lesion requiring the FNA was at 1:00 and the big momma was at 9:00. I don't think that am or pm really matter, in case you were wondering.
As a nurse, I was fascinated with the process of both doing and watching a biopsy, especially on me. (For the record, I do acknowledge how strange and twisted that is to say.) I told her that I am a big advocate of pain management and to "go big" on the lidocaine. So, without pain, I watched as this skilled, gentle and thorough surgeon did biopsies on two of the lesions in my right breast. When she was finished, I asked her what she thought. She said, "I am very, very worried." She was eager for me to do the MRI that afternoon and was able to squeeze me in.
Then, we had the conversation about a Closed MRI versus an Open MRI. I had the great misfortune of having a Closed MRI when I was pregnant (long story, but because I had migraines every day of my pregnancy-yes, everyday-my OB thought I had a brain tumor and stuck my migraine-laden head into a Closed MRI head to rule out a brain tumor. I later broke up with that OB, by the way.)
A Closed MRI, in case you don't know, is a medical imaging technique used to visualize internal structures of the body, in this case, my breasts. It feels like being dropped into a deep and narrow well with people jack hammering about 2 inches from your face. Seriously.
I tried my darndest to negotiate an Open MRI-essentially the same test but without the claustrophobia-to no avail. "We need the Closed MRI," she said. Well, then, I'm going to need some serious drugs. "Valium OK?" she asked. Yes, Ma'am. Now, it's time to call a friend.
In the meantime, this amazing surgeon told me that she didn't typically work on Fridays, but that she wanted to come in to discuss the preliminary test results (comprehensive pathology results take several days). I told her that as a Hospice and Palliative Care Nurse, I have been in her chair-delivering bad news-and want to know ahead of time what she was going to tell me. All she said was, "I'm very, very worried." Enough said. F-Bomb.
So, I called a girlfriend and, in order to ask her to escort my Valium-laden head to the MRI, I had to break the news. Now I was sounding like the alarmist, which I did not like one bit. I decided that I actually wasn't being an alarmist at all. Rather, I was simply delivering factual, but alarming news.
She would meet me at my house in 20 and drive me straight to the exam. In the meantime, I stopped by the pharmacy to pick up the Valium. Just having the Valium helped me relax. (That first time in the Closed MRI was utterly traumatizing.) As soon as we got in the car, I took the pill. Being opiate naïve (i.e., I am not in the habit of taking drugs) combined with the fact that I forgot to eat that day (a shocking occurrence in and of itself!), the Valium took effect almost immediately.
As we were driving to the exam, my surgeon (I now refer to her as "my") called and asked, "Have you taken the Valium yet?" Oh, yesssssss. "Oh no," she said, "The MRI machine just broke." Too bad. Then, she said, "It's too bad because everything was going so well today." For whom was it going well, dear surgeon? At least we both were able to laugh at that seriously laughable line.
So, MRI was scheduled for the next morning at 7:00 at a different location. Valium buzz still firmly in place. My girlfriend and I decided to just run some plain old errands. After all, not everyone's world was rocked today and errands still needed to be run. It was actually gift of time for us to process the day.
I need to stop this story to tell you that throughout this process, I have been able to witness (with gratitude) so many Silver Linings (SL's). So much good is coming out of so much bad. Seriously. It is important that I point these out to you because these Silver Linings are what are helping me maintain perspective and a positive attitude. From this point forward, I will simply refer to them as: SL's.
Fast forward to 6:45 am Friday morning. Having taken the second Valium, I am smooth sailing into this closed MRI. When I arrived, the woman at the desk said that they were going to have to wait to do the MRI because they didn't have the official doctor's order. Really? I think that she saw that pathetic, devastated look on my face and said, "I know it's coming. Let's get you in, sweetie." SL
Well, I am here to say that not only did I survive the MRI -- I fell asleep in it! The technician had to wake me up. Awesome.
So, I came home to sleep off my Valium buzz before my 11:30 doctor's appointment (to which I have asked my girlfriend to come). At this point I have finally learned to not go to a doctor's office without a friend! Well, my head had barely even hit the pillow and my surgeon's office called to ask if I would come an hour earlier so "we can have more time to talk." Another bad sign. Sure, I say, we will be there.
We arrived promptly at the newly-designated time of 10:30 and were escorted almost immediately to my surgeon's office. Isn't it wonderful when physicians are on time (SL)? My Valium buzz was long-gone. I was ready-well, as ready as I could possibly be. I had my computer and my journal to take notes. I asked my girlfriend to take notes in my journal while I typed on my computer so that I could accumulate as much information as possible.
Note: anytime you go to a doctor's office for an important meeting, such as a diagnosis, it is always very important to take as detailed notes as possible. I know that there are statistics (though I can't put my fingers on them right now, so please don't quote me) that say that patients only hear a teeny-tiny fraction of what is said in these types of anxiety-filled meetings. The benefit of taking notes, in addition to accumulating valuable information, is that it slows the conversation and allows you to ask clarifying questions.
So there we were. Ready. My surgeon calmly and gently said exactly what I expected her to say, "As I suspected, you do have Breast Cancer." F-bomb. Because I expected her to say this, at least it didn't feel like a wrecking ball hitting me in the head-well, it actually still felt like a wrecking ball. What am I saying? I must admit that there was a little part of me that was hoping that someone would please tell me to just stop drinking F-ing coffee.
My surgeon told me that the large core biopsy at 9:00 is invasive ductal cancer associated with DCIS (ductal carcinoma in-situ). The FNA (Fine Needle Aspiration) biopsy at 1:00 shows high cellularity and cancer cells and is most likely also invasive ductal carcinoma (because the other lesion is). I asked about the left breast, the one with the three lesions. "Because they are so hard to reach," she said, "we would need to do a MRI guided breast biopsy." Fabulous.
She immediately started talking about the treatment plan: mastectomy immediately, chemotherapy for 3-4 months, and radiation for 6 weeks. Holy Moly. All that kept running through my head was: We. Know. How. To. Do. This.
On a side note, having delivered a whole lot of bad news and taught how to deliver bad news (after all, my professional background is hospice and palliative care), my surgeon did an incredible job. Stellar, in fact: SL.
So, this was Friday. The (exhausted and worried) Husband landed in LA about the time we finished our meeting. My girlfriend and I went out to lunch (yes, I had a gigantic glass of wine) to strategize. My big issue was: How to tell everyone? Calls? I started making a list of the people I needed to tell. The list became bigger and bigger: SL (to have so many loving people in my life).
I decided that I just didn't have the capacity to call everyone on the list. First of all, I'm generally not too chatty on the phone. Secondly, I was exhausted and the thought of making a gazillion phone calls to retell the story was just too daunting. Then, I decided that I wanted everyone to hear the news directly from me, in my own words. Hence, sending a group email was the choice for me. While it wasn't quite as personal as a phone call, everyone knew that it came directly from me and didn't have to hear it from someone else. This was very important to me.
After lunch, I went home to wait for The Husband. While waiting for him, in an effort to make some sense of the news I was told, I went to komen.org. The Susan G. Komen foundation was founded in 1982 by Nancy G. Brinker, Susan's sister. It is an extraordinary website that has the perfect balance between sophistication and accessibility. I was definitely intellectualizing the situation.
After flying 30 of the previous 48 hours (with a good 8-10 hours spent in airport terminals), The Husband finally rolled into the driveway. I've never been happier to see anyone in my life. Well, I was pretty happy to meet my daughter when she was born, but that's another story. Anyway, we were both pretty numb and exhausted. Quite frankly, I don't remember much of the rest of the day. That's what the stress of this FBC has done to me: wiped out my memory bank. This is the reason that I have a tendency to write (or type) everything.
I imagine that there were a few tears when I saw The Husband, but definitely no snot fest. We are both problem solvers and now we had a big, bad problem that needed a plan.
Not sure who has actually slogged through this first Brookside Buzz blah-blah-blah, but if you have, thanks!
I am in an incredibly good place right now. I feel like I am exactly where I am supposed to be. No, I am not in denial and I don't think I'm crazy. I feel like I am at an intangible height of emotional bring-it-on-ness.
Next step: Making a plan.
"To wish to be well is a part of becoming well."
-- Seneca (Roman philosopher, mid-1st century AD)
To read more about Hollye's all-encompassing, humorous and silver-lined journey over, around, above and below breast cancer, please visit her blog, Brookside Buzz. You may e-mail her at firstname.lastname@example.org.
Follow Hollye Harrington Jacobs on Twitter: www.twitter.com/hollyejacobs