Raise your hand if you don't have nipples! That was my ice breaker at my first post-surgery outing last fall. Why did I ask people if they
have nipples? And why did I raise my hand to inform the entire room
that I, in fact, did not have nipples? Because on February 28, 2012, I
was diagnosed with stage 3 Inflammatory breast cancer. I was 30 years
old. I had no insurance. I was screwed.
Fortunately, I was still able to start treatment, and four months, five applications, and one appeal
after my diagnosis, I was finally able to get state insurance. I received ten
rounds of aggressive chemotherapy, a bilateral mastectomy (see: no nipples), and 33 rounds of radiation.
I finished my treatment in mid-December 2012, and started 2013 cancer free.
Or so I thought.
In January I developed pain in my chest that I initially thought was a
pulled muscle. Two weeks later my doctor sent me for scans. Two more
weeks went by without a word. Since my doctor always called
me asap when anything was wrong, when I didn't hear from her I assumed
all was good. No news is good news, right? Wrong. At my follow-up
appointment she told me the scans showed spots, one on my femur, one on
my sternum. She's sure it's cancer. Off to the MRI I went. The femur is clear, no
cancer. The sternum, is, as they say in doctor speak, consistent with
cancer and I was scheduled for yet another biopsy. Since my cancer feeds off estrogen,
I was put on medication to suppress the estrogen production in my body,
in hopes it will stop the cancer from spreading.
After nearly a year of aggressive treatment, the cancer still spread.
This is the nature of inflammatory breast cancer. Inflammatory breast
cancer is the most rare, and most aggressive type of breast cancer. There is very little information about inflammatory breast cancer. Most people have never heard of it and some doctors can go their entire careers without seeing a single case.
Accounting for only about 1-3 percent of all breast cancer diagnoses, the
symptoms appear quickly, sometimes overnight (I urge you to check out the info at www.EraseIBC.com and www.theibcnetwork.com). The symptoms I had were, swollen/enlarged
breast, rash, inverted nipple, and warm to the touch.
Inflammatory breast cancer rarely presents with a lump. I, however, did have a lump,
which turned out to be a secondary breast cancer. Yes,
that's right, I had two cancers, in one breast. I called a breast care center that happened
to be less than 10 minutes from my apartment. Is that what they call "a
sign?" -- and they told me to come in right away. My doctor said I needed a mammogram
and an ultrasound asap. Unfortunately, when you have no insurance, asap can
take a lot longer. For me, asap was 10 days. Ten days of meltdowns
(okay, not every day, but they happened a lot), 10 days of thinking the
worst, 10 days of waiting, and waiting, and waiting...
Finally the day came and my boobs got the squeeze. I knew that I had
breast cancer. I can't describe it, I just knew. I left the hospital
knowing that my doctor was going to call me with the worst news of my
life. Twenty minutes later, yes just twenty minutes after I left the hospital,
the receptionist from my doctor's office called to tell me to come in the next day.
When I asked why (even though I already knew), she wouldn't say, she just took a deep breath and
said, 'you just need to come in.' I hung up the phone, took a deep breath
myself, and said to my mom, who had driven up from LI to go with me,
"It's breast cancer". Neither of us said another word.
The next day I saw my doctor. She looked genuinely upset to have to
tell me this news. As for me, I felt better than I had in the two weeks leading
up to that moment. Don't get me wrong, I was still devastated, and I
cried when she told me, but after waiting, and worrying, to finally
know for sure, and be able to move forward was a big weight off my shoulders.
Now, I'm right back where I started, with this new spot of cancer and
an upgrade to stage IV. I'm scared, overwhelmed, and confused.
And now, it's just another waiting game. Waiting for test results, waiting to see if the meds work,
waiting to find out if there is any way to see specialists who are out of state and don't take my insurance.
Waiting... and waiting...
And waiting, as the great philosopher Tom Petty pointed out, is the hardest part.