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 a cancer diagnosis, you become increasingly
aware of all the different cancer awareness months for all the different types.
Just because I had breast cancer doesn’t mean I’m only aware of my type of
cancer. If anything, I want to learn as much as I can about all the different
types of cancers now that my body is open to a possible secondary cancer down
I take this time to constantly educate myself and talk with
others in cancerland to better understand their type of cancer and experience.
The more I talk with others outside of the breast cancer world, I find more
community, acceptance and humor. Though our cancers are different, there are many
shared experiences which is comforting.
So, as PINKtober looms around the corner, I start getting
requests to help with breast cancer awareness. It’s difficult when people notice a skill that
makes them want you to volunteer for everything breast cancer related. Instead
of it being fun, it starts to feel like work, draining and stressful.
That’s how the thinning of oneself begins. People mistake my
bubbly personality and upbeat voice as ready to take on the world. It’s almost like
they forget that I’m still working fulltime with increasing responsibilities,
which means using even more physical and mental energy during my 8-10 hour workday. So, driving to a volunteer
meeting that adds another two hours to my day takes momentous effort.
The reality is most of the time I just want to stay home
munching on peanut M&Ms while watching Dateline, Snapped and some
other thrillers with a handful of dramas, a dash of comedies and a pinch of romance.
It’s fantastic to be noticed but at what cost? My body can’t
handle stress the way it used to.
It needs more rest.
It needs more calm.
It needs more deep breaths.
Now that I’m in palliative care to help with pain management, I can’t do as much as I used to force myself to do before. Fatigue is overwhelming. I think people outside cancerland can’t fully understand that many of us aren’t just tired. When you’re just tired, it’s implied you can sleep and feel recovered the next day. Fatigue, with the added layer of pain, means there is no recovery or waking up feeling energetic. It’s another night of tossing, turning, groaning, never finding a comfortable sleep position and waking up feeling even more drained and quite cranky.
Time to speak up and say NO. Making myself a priority
feels odd and selfish. I’ve had to retrain my thoughts to accept this is true
self-care and not selfish.
I was at the Leukemia & Lymphoma Society Blood Cancer
conference yesterday. I went last year and was blown away by the keynote
speaker Dan Shapiro. So, this year, I wanted to bring my mother in the hopes of
learning more about her rare blood cancer and give her the sense of community
she craves but won’t admit she needs.
My naturally bubbly and talkative self couldn’t help but
engage with others and the vendors. After all, I want to start getting more
speaking engagements and writing opportunities that will lead to paid ones. One
of the vendors asked why I was there because she noticed my favorite breast
cancer ribbon barrette in my hair. I told her I was there for my mother and am
a three-year breast cancer survivor and dealing with severe chemo induced
neuropathy and fibromyalgia.
She said, “You don’t look unwell. You look just full of
energy and healthy.” I always find that comment interesting, especially at
cancer events. Don’t they realize the sheer effort it takes to appear energetic
As much as I try to take my expressive nature down a few
notches, I always end up thinning myself out. Naturally being a tad extra is
exhausting once I come down off the high.
It’s just another reminder for me to practice more self-care
and make it routine. I’ve only committed to a few events for PINKtober instead
of everything like I’ve done in the past. Thinning myself out can easily mean another
trip to the ER or with pneumonia like I was in April and May of this year. I’m
not looking for a repeat of that.
Saying NO to volunteering for cancer events is our right and not selfish. Don’t let anyone guilt you into saying yes either. Be firm because you’re the one who must deal with the after affects and not them.
As much as I love to socialize, I’ve been craving solitude
more and more. I have limited energy. In some ways it makes me sad because I do
love to talk, but my naturally expressive personality now wears me out. What
many people don’t realize is cancer ages the mind, body and spirit.
My mind has been in utter chaos as I’ve tried to process my
cancer experience. I wish I could forget the ugly parts of my cancer path. The
thoughts and grief refuse to be swept under the rug. They continue to bubble and
boil to the surface.
I still can’t fully verbalize all I’ve experienced and
continue to experience. That’s why I write and started blogging. All I can do
is continue to raise my voice and shed light on the difficulties of a cancer
diagnosis. The fear, anxiety and anger never fully disappear. It sometimes moves
to the backburner, but never gone.
I had become dependent on Ativan for sleep. My psychiatrist
at the time kept enabling me. It took me two years to recognize that fact.
Instead of helping me process, she was trying to keep in a sedated frame of
mind. I finally saw the light this year and terminated the sessions and weaned
myself off the Ativan. It was difficult and definitely caused additional stress
to my immune system.
After I finished chemo in February 2016, I was shocked by
how old I looked. Dark circles like a panda, pale gray skin and lines like a
turkey around my neck. Heck, even my hands looked old. My baby face was gone.
What I noticed most was the look in my eyes.
They looked haunted.
They looked pained.
They looked scared.
I still don’t recognize this body. So much has physically
changed. The chronic pain wears on my patience. I can’t just get up and go, go,
go like I could in the past. Every move is slow and deliberate. I don’t want to
fall. I have a permanent handicap sign thanks to neuropathy.
My spirit has also taken a beating. I don’t ask why I got
cancer. It was inevitable, especially after looking at my family history. I ask
more why did I get cancer under 40 and still alive? I see others whose cancer
has metastasized with significant others and families. Why have I been spared –
the single cat lady – and not them?
Life post-cancer continues to be a daily struggle. There
always seems to be a new pain or issue or unforeseen medical bill popping up.
I crave stability.
I crave my truth.
So, I wrote a poem that was originally crafted using a writing prompt from the Unspoken Ink Writing Class through Lacuna Loft. I finished it this morning.