was dealing with depression and anxiety long before cancer. Now I feel the most
fragile I’ve ever felt. Just when I think I have a handle on things, everything
explodes. I’ve written about this in the past. What happens when the strong
need to weep? They weep alone.
struggled finding people to talk to and let my guard down, really and truly let
my guard down. What tends to happen is they listen for a few minutes and then inevitably
tell me the following:
goes on for a few minutes until the shift happens where I become their therapist
and shoulder their pain and their fears. They assume I’ll be just fine and can handle
others can’t handle hearing your fears or darkness because your
“normal” personality is sunny and zany, that’s pressure to always
appear okay. That’s my current situation. Heck, it’s been my ongoing
chronic pain makes it harder to keep my emotions in-check. I no longer have the
energy to keep up the appearance of being okay. I don’t get a break from what
my cancer treatments and multiple surgeries have done to me. I wake up hurting
every morning and go to bed hurting every night.
been very down on myself about my weight and being chronically single. I grow
even more frustrated with being told the following:
or relationships are overrated.
your own worst critic.
understanding my body and loneliness just adds to my depression.
I’m resilient. I don’t know where that comes from, but I somehow always get
back up after being slammed to the ground over and over and over again. I’ve wanted
to give up, but my nature just won’t let me.
don’t want to be alone.
through the darkness while leaping from one friend to another, sharing spurts
of what’s hurting the soul but knowing there’s no one shoulder big enough to hold
all your darkness is my daily struggle.
As October approaches, I grow angrier and angrier. Why?
Because it’s now become PINKtober. We’ll be flooded with commercials and
friends doing walks, wearing tutus, toothy smiles and cheers nationwide. Breast cancer is glamourized to look pretty,
easy and fun. No wonder other cancers hate us.
The media attention breast cancer gets is HUGE. The funding for it is HUGE. The awareness part is bullshit. Yep, I said BULLSHIT! A lot of that money raised from the tons of “walks for the cure” is nowhere to be seen. The bulk of these organization – yes, Susan G. Komen; I’m pointing at you – are funneling millions of dollars…into their pockets!
The wool that was once over my eyes is gone. Why? Because I’ve
lost countless friends from metastatic breast cancer. I’m acutely aware that I
could still get metastatic cancer. I’m not “cured.” I will be getting scans
every six months for 10 years!
I had Stage IIA Invasive Lobular in the left breast.
Let me give you some information on this type because it is not common.
Here’s an overview from the Mayo Clinic’s website:
carcinoma is a type of breast cancer that begins in the milk-producing glands
(lobules) of the breast.
Invasive cancer means
the cancer cells have broken out of the lobule where they began and have the
potential to spread to the lymph nodes and other areas of the body.
carcinoma makes up a small portion of all breast cancers. The most common type
of breast cancer begins in the breast ducts (invasive ductal carcinoma).
I’ve realized many women and men are under the assumption
that if you have a mastectomy, that you’ll never get a recurrence or metastatic
cancer. I’m going to take this time to educate and give some definitions for
those who may not be aware or too scared to ask.
Here are the Types of Recurrent Cancer and definition of Metastatic Cancer from the National Cancer Institute at the National Institute of Health’s website.
Local recurrence means that the cancer is in the same place as the original cancer or very close to it.
Regional recurrence means that the tumor has grown into lymph nodes or tissues near the original cancer.
Distant recurrence means the cancer has spread to organs or tissues far from the original cancer. When cancer spreads to a distant place in the body, it is called metastasis or metastatic cancer. When cancer spreads, it is still the same type of cancer. For example, if you had colon cancer, it may come back in your liver. But, the cancer is still called colon cancer.
Metastatic Cancermeans the spread of cancer cells from the place where they
first formed to another part of the body. In metastasis, cancer cells break
away from the original (primary) tumor, travel through the blood or lymph
system, and form a new tumor in other organs or tissues of the body. The new,
metastatic tumor is the same type of cancer as the primary tumor. For example,
if breast cancer spreads to the lung, the cancer cells in the lung are breast
cancer cells, not lung cancer cells.
Despite how the media glamourizes breast cancer, I still
love wearing pink, tutus, tiaras, butterfly wings and feather boas. Why? These
items were ALL in my closet before my breast cancer diagnosis. I’ve always been
a tad extra and a Nut-Meg. When I look at those items in my closet, I don’t
associate breast cancer with them except for two of the six tiaras I have. I
bought one a year after I was declared NED (no evidence of disease) and the
other this year for my birthday because I wanted one even bigger and heavier to
celebrate that I’m still above ground.
Breast cancer has taken away so much. It’s a daily struggle
to reclaim pieces of myself. My body will never, ever be the same. I’m still
healing from my 8th breast cancer related surgery I had in June of
I remember how financially giving so many were when I was
initially diagnosed. I can’t tell you what an enormous help their generosity
was for me, especially as a single woman, but the medical bills don’t stop once
the cancer has been removed.
I didn’t think I would get diagnosed with cancer at 39 years
old; two months after my birthday.
I didn’t realize how expensive getting scans (diagnostic mammogram
with either an ultrasound or MRI) every six months would be thanks to super
I didn’t expect to have additional surgeries afterward.
I didn’t expect that I would be intolerant of every type of
post-cancer medication to help prevent recurrence.
I didn’t expect to have permanent chemo induced peripheral
neuropathy in my hands and feet to the point I have a permanent handicap sign
because I can’t walk far anymore.
I didn’t expect that all these surgeries would trigger
fibromyalgia and have to live with severe chronic pain every blasted day.
I didn’t expect I would still be single and can’t even think
about dating or being intimate because I was medically induced into menopause
at 40 years old.
I didn’t expect to long for children until the choice was
taken away from me and had to get a hysterectomy and salpingo oophorectomy at
40 years old.
I didn’t expect to have these continuous cognitive issues
Most of all, I didn’t expect to meet so many beautiful
fellow warriors who have since DIED in the past three years.
For me, PINKtober isn’t reality. It’s made to be cute, fun
and money grabbing.
The reality is we need to know the cause of why so many
early stager’s eventually get metastatic cancer. Why are so many women and men being diagnosed
under 40? Why are so many with zero family history of cancer getting breast
cancer? And, why aren’t there better treatment options for during active and
That’s what needs a continuous spotlight and research.
Once you receive the “cancer call,” your life is never the
same. Every plan and dream become frozen because you’re no longer the person
you once were. That one call changes the course of your life.
My cancer call was 4 years ago yesterday, 9/14/15. I didn’t
think I would be contacted so quickly because I’d had my biopsy on a late Friday
afternoon on 9/11/15. It felt wrong and scary to have a biopsy of the mass in
my left breast on such a nationally tragic day. Yet, I wanted to have my biopsy
on a late Friday afternoon so I could go home afterward and not think about work
or anything else. I was told the results would be available within 24 to 48
hours. Since I was the last patient of that day, I was expecting results either
Tuesday or Wednesday.
So, when my cell rang at 3:05pm that Monday, I instinctively
knew I should answer it even though I didn’t recognize the number. When I
flashback to this memory, it’s like I’m suspended above my work cubicle watching
I see myself running down the hall into an empty conference
I see my eyes filling with tears yet widening in disbelief.
I see my hand shaking while holding the cell.
you have Invasive Lobular Breast Cancer. We don’t know the stage yet. You need to get a pen and paper and take some notes
because time is of the essence.”
Those words changed the course of my life.
Much has happened since that day. I had started to make a
list but got nauseous as the list went on and on and ON. Some have an easier
cancer path than others. Mine was not and is still not easy.
I’ve blogged about survivors’ guilt in the past, but it’s
never far from my mind. Once you’ve received a passport into cancerland, you
meet other patients across all types of cancers that you never would’ve met in
your non-cancer life. I will always be grateful for the friendships I’ve made
and continue to make.
The part I still can’t wrap my head around is death. I’ve
posted numerous pictures of me smiling through the pain and giving a bird’s eye
view into cancerland. The one view I’ve never shown is seeing a fellow warrior
die from their cancer. I’d never seen death up close and personal outside of
family until then. That’s why I struggle when people tell me I should be happy
I’m alive and not let cancer define me. Heck, I hear those comments from other
I have friends who have died and are currently dying. Some
have years or months. Others have weeks or days. I carry a little piece of them
with me. They have become part of my story, too.
Then I have friends outside cancerland who I never would’ve
crossed paths with if it hadn’t been for my cancer diagnosis. Some are still in
my life and others are not. Like that saying goes, some people are meant to be
in your life for a moment, a season or a lifetime.
I’ll never forget the days leading up to and the day of my cancer call. It forced me down a path I wasn’t ready for and continue to fight.
I somewhat freaked out some fellow coworkers when I
showed up to the work happy hour on Friday. Why? Well, I had my hair pulled
back. My chemo curls were blown straight last week. I had been wearing it down
at work with my usual hair accessories. I had discovered on Friday that my hair
is just long enough to pull back if I use a tiny clip and a million bobby pins
to hold the sides in place.
So, when I walked into Taco Mac, no one recognized
me at first. The looks of surprise were apparent.
No hair clips.
Just pure ME.
So why did the bulk of them freak out? One of my
male coworkers said he hoped I wear a tiara or flower in my hair on Monday
because then I’ll “look like royal one they all know.” I confess I was taken aback
by the comment. I thought I looked smashing. I looked like the ME I remember.
Then I thought about it and get his comment. I believe he was trying to say the
hair bling fits my big personality.
I always wore my hair up or pulled back since I was a kid, teen, young adult and as an adult. Wearing my hair in a ballerina bun, French braid, French twist, pigtails, etc. is very much a part of ME. I used to be svelte and statuesque. I loved brushing my hair and deciding which classy or cute style I would create each day. Then when I added my glasses, I was often described as the “sexy librarian.”
I’ve been working very hard to claim back some parts
of ME. I’ve been recognizing my reflection more and more when my hair is blown
straight. I finally see the length. The
thing is, others I’ve met post-cancer don’t recognize me this way. They don’t
know what I really look liked. Everyone at work knows I’m a cancer survivor
because I don’t hide it anymore. So, they either forget these are chemo curls
or think they are natural.
Someone commented on my Instagram when I posted a
little about this. They said, “Interesting that you don’t see your curls as
feminine. I see you as very feminine, but from my view, it’s not the hair but
To me, I…and I will repeat…I think I look like a
chia pet on steroids. The chemo curls make my head look huge! The height of the
hair really bothers me. I can’t wear hats when it’s like this. I don’t want “big”
hair. I’ve never wanted curly hair. EVER. That’s why I started wearing the hair
accessories because I can’t do anything with those chemo curls. The curls are
so tight, that I can’t style it. So, I added the bling to feel feminine and
give myself the variety I crave.
As a birthday gift, my mother is paying for me to
get the chemo curls blown straight 2x per month. Any time I mention this, I always
get those saying to get a keratin treatment or sending me pictures of the hair tools
they use. Well, I don’t have the physical strength to blow these suckers out.
They are TIGHT curls. It takes a lot of arm strength, technique and patience
that I don’t have but my stylists do.
How come no one sees I’m playing a character when I
wear my bling? The character of a cancer survivor who doesn’t recognize herself
or her body.
I’ve never once felt feminine with the chemo curls
unless I have a hair accessory. Notice I never say ‘my’ when I refer to them.
To me, they aren’t natural. Poison changed my hair chemistry, not me. It wasn’t
MY choice. Why can’t others get that? I’ll say it again. It wasn’t MY choice to
have curly hair.
I get sooo many people telling me how cute they are.
If they were loose curls, maybe I would agree. I always feel the need to tell
people what I used to look like and show the pictures as proof. I wasn’t always
this overweight woman with a tight, curly ‘fro. I was fit, classy and stylish.
Am I happy my hair grew back? Of course, I am. Did I
think it would grow back entirely different from what was my norm? No. So, I
can’t stop being surprised and dismayed every single time I look in the mirror
when the chemo curls are there. It’s not what I know.
I’ve always been a tad extra from birth. Adding a hair
accessory doesn’t change that. It’s strange the more I’m starting to look like ME
with my hair blown straight, no one else seems to recognize me.
My life on the cancer train lately is confusing, painful and disappointing. Yet, it’s also been liberating because I am beginning to see a reflection that is familiar.