by Band Back Together | Jun 15, 2016 | Anger, Breast Cancer, Cancer and Neoplasia, Cancer Survivor, Coping With Cancer, Depression, Faith, Fear, Guilt, Mastectomy, Stress, Trauma |
Have you ever been swimming in the ocean and wondered what was lurking underneath you…eying your body…sizing you up to see if you would make a tasty meal? That’s what I call the breast cancer “shark attack syndrome.”
I liken the physical and psychological impact of a double mastectomy to a shark attack. It happens quickly and violently. In a matter of minutes you are struck hard and parts of your body are carried away into a vast ocean by a predator much bigger than you. It isn’t personal. The attack is random. You are left alive but amputated–stunned and with a life long fear of the water.
People who know about my diagnosis gawked at my chest like an accident scene on the freeway. Family, friends…they can’t help themselves from looking. I chose not to have reconstruction due to the lengthy recovery…an infant and a toddler don’t lend themselves to extensive plastic surgery. My daughter was 8 months old and my son was 3 years when I had the surgery, not exactly the age where I could be out of commission.
I don’t wear the prosthetics I bought…they constantly remind me I am amputated, and the first time I took yoga one of them fell out! My beloved yoga teacher said, “Just take them out, honey.” I never looked back.
Rough Waters
The journey through a breast cancer diagnosis with two small children was so very hard. I searched for the words to tell my son…
”The Doctor found a lump in mommy’s breast that isn’t good for her body and he has to take it out.”
Thanks to my son’s school and my amazing husband, we got him through it…but he STILL talks about it and recently asked, “Mommy, why don’t you have boobies?” At that point I realized my beautiful daughter would grow up never knowing her mother’s body to look “normal.” She only knows the scars. That is the day my heart broke forever. As if depression didn’t make me feel inadequate enough, now I felt like a carnie act. Come on down and meet the lady who was attacked by sharks!
I will never truly recover from knowing what I look like and what I represent to my children. But I am here to be their mom and truly thankful. Thank god I had it checked. The mammogram showed no abnormalities! If I had just had the mammogram I would have faced a diagnosis of invasive cancer and perhaps required chemotherapy or radiation. As of now, they tell me I am “cured.”
And I found it myself.
Not a minute in the day goes by that I don’t worry that it will return and take me from my children. Every woman who has had breast cancer knows exactly what I’m talking about. Every cold, every headache, every stiff muscle, still scares me into thinking I am still out there in that ocean—defenseless to another shark attack. What part of my body will they take next time?
I saw my mother lose her breast early in life. The same month I was diagnosed, she was diagnosed with Stage IV colo-rectal cancer. I watched the sharks circle her for six years, taking feet of colon, and eventually her life.
But it isn’t a pity party. I am glad I got cancer. It was a hell of a lot easier to deal with than postpartum depression, than life-long depression, than the cancer that is depression. And it got me immediately in touch with impermanence, and subsequently, my spiritual practice.
If I were thrown back into the dark ocean again and a recurrence reared it’s ugly head, I have my faith to thank for curing me of my fear of sharks.
by Band Back Together | Sep 24, 2015 | Anger, Birth Defects, Chronic Illness, Compassion, Encephalocele, Faith, Family, Fear, Feelings, Guilt, Hope, How To Help A Friend With Chronic Illness, Loneliness, Love, Medical Mystery Tour, Neural Tube Defects, Neurological, Nerve, and Spine Disorders, NICU, Stress, Trauma |
It’s a nice enough looking building, all official and comforting, with people buzzing in and out in their neatly pressed scrubs, looking like they know precisely what they’re doing and where they’re going. In the hallway there, there’s a heart statue, or maybe it’s a statue of kids in a ring, perhaps playing a game of “Ring Around The Rosy.”
The desk is always manned by a sweet-faced volunteer to help you find whatever you’ve lost or find your way, except when, of course, you cannot find it at all. There are flowers there, too, beautiful flowers, always fresh flowers. Usually lilies are mixed in, fragrant lilies, reeking of death and funerals, but the flowers are so beautiful that you can almost forgive the scent that makes you want to vomit.
Over there is the place you cried until you dry-heaved as you took your infant daughter to her third MRI in her first week of life. And just past that is the chapel where you prayed for her life. The stained-glass windows during that frigid February day shone a cold bright light as your daughter slumbered through an anesthesia coma, and you tried to forget all that you knew about neurosurgery.
You prayed with all of your soul.
Above the chapel is the waiting room where you sat after you’d dropped your daughter off into the arms of her neurosurgeon, hoping that the last kiss you gave her warm, delicious head, wouldn’t be the last kiss you ever gave her. You sat in that waiting room with the three people who cared enough about you to show up and hold your hand and you choked back tears as the operating room nurse brought you back a bag of your daughter’s first hair in a bio-hazard bag.
You held that bag and wondered if that would be all you had left of her.
Below that waiting room is the gift shop where you dragged Nathan, someone who you will always treasure for being a friend when you needed one most, to buy your daughter something hopeful. A necklace. Carefully, you pick out a necklace that you will give your daughter and someday tell her, “Amelia, Princess of the Bells, Mommy bought you this when you were having your brain surgery.”
It’s a very beautiful necklace. A crystal encrusted heart on a simple silver chain in a velvet bag. It is perfect.
You hope she knows that this necklace is very, very important.
Two floors and a yawning corridor away, is the happy floor, filled with women and new babies, where your life was forever changed with seven words, “Becky, there’s something wrong with your baby.” A new world was created then, a secret place only you could go, this land of tears.
Your soul broke.
Up above that room, down another winding corridor, you screamed as they wrenched your nursing baby from you. Your breasts wept, too, as you cowered in that bed, terrified, in your secret place, your own land of tears.
In the dark basement, worlds away from the happy new parents above, you joined the ranks of the hollow-eyed ghosts in the NICU as you signed in and out to see your daughter. There, at least, you didn’t scare anyone with your eyes swollen nearly shut from crying and cheeks raw and bleeding from hospital grade tissues.
Above her bed there would be her bed post-surgery in the PICU and seeing her in a gown that bore the same logo as the hospital you’d worked at in nursing school made it almost easy to pretend this was all some vicious nightmare. That maybe you’d wake up to a normal, healthy baby.
Then your daughter would cry, her voice raw and hoarse from intubation and you knew this was your new world order.
When your other children came to see their sister, you’d rearrange your horrible face into a mask of what you hoped would pass as cheerfulness, ply them with candy, and hope that they wouldn’t look too closely at your shaking hands or tear-stained face. When they screamed, “I want MOMMY!” as they left for the day, you felt torn between the two worlds, one of which you’d just as soon leave behind, too.
All corridors eventually feed into the cafeteria, where you remember laughing for the first time in months. It was a jangled, strangled sort of sound, but there it was: a laugh, from your mouth, and it was real.
Down by the statue of the heart or perhaps children dancing in a circle is where you waited with your daughter as you took her home with you for the last time. Surrounded by all of the pink things you could find, balloons deflating slightly in the cold February air, you were exhausted, but ebullient: your warrior daughter had made it.
A mother had never been prouder. You held her car seat close to you as you whispered to her sleeping cheek, “You made it, my girl. You’re a fighter like your Momma, all right.” This time, for the first time in her life, when the tears wet her cheek, they were the good kind.
But late at night, when the rest of the house sleeps, these are the corridors that your mind roams, over and over. Your memory, photographic, can recall everything with the sort of clarity that makes you relive those days constantly.
You are forever delivering that sick baby.
Constantly having her wrenched from your arms, always back in those terrible moments roaming the halls, seeing the same desk clerk, smelling those awful lilies, dry heaving into the diaper bag.
The sadness is omnipresent and yet nowhere. It is the new world order.
Save for roaming the corridors all night every night, you haven’t been back to those halls since your daughter had those awful thick black stitches removed from the back of her head.
You must return. New problems, a new specialist, means one thing: you must face your demons and return.
A new desk clerk and a new flower arrangement await you in the official looking building in which you found absolutely no comfort and now you must face up to walking these halls once again. It’s likely that you’ll cry. It’s likely that you’ll dry heave. It’s likely that no one will understand your reaction to this big official building. It’s just a place, after all.
But this is so much more than a place. It’s where the old you shriveled up and died and the new you was dragged screaming into the world.
So you and your ghosts walk the corridors all night every night, reliving the worst parts of your life, wishing they could be laid to rest, knowing that they never will.
Ever.
—————
This post was written by Becky Sherrick Harks and originally published here, on Mommy Wants Vodka.
by Band Back Together | Sep 6, 2015 | Anger, Anxiety, Faith, Family, Fear, Guilt, How To Help A Friend With Infertility, Infertility, Invisible Illness, Loneliness, Marriage and Partnership, Romantic Relationships, Shame, Stress, Trauma |
I don’t think anyone knows the isolation that infertility brings with it unless they’ve lived it. Sure, we have several friends that we share all this with. Or rather, I do. I don’t know that my husband, Brian, has really told anyone what we’re going through. If you know him in real life, you know that he is silent about things that bother him. If you don’t know him, I cannot stress how quiet and private he is. But most of my friends know what we’re going through, and a few of our family members. Most people are unfailingly supportive, even if they don’t understand a bit of what’s going on.
Unfortunately, that doesn’t make it any less lonely, and doesn’t make me feel like less of a freak. Save your breath — rationally I know I’m not a freak. But that doesn’t keep me from feeling that way. And no amount of support from my very fertile friends makes it less lonely. Infertile friends — we are blessed with a few of those, too, though I wish they didn’t have to go through it either — make it even easier.
But when I’m in that exam room, having my lady bits poked and mishandled by the doctor and his ultrasound wand of pain, I am alone. When the Clomid headache sets in and I can’t even think straight, no one else is going to deal with that pain for me. When we schedule our love life, it’s just the two of us. When my cycle abruptly ends with the inevitable period, it’s just me.
That’s isolation.
That’s infertility.
But what really shocks me is the unexpected ways that infertility continually separates us from our family and friends. While it colors how I look at the world, it also colors how people look at me.
Between daycare and lessons, I come into contact with about 11 or 12 families each week. I have at least one doctor’s appointment each month and sometimes more, since I’m always having blood work and such, I need to let the affected parties know that either Brian will be here with the Munchkin Coalition, or that I’ll be late for lessons. None of them get too nosy or pry into my personal life, and all of them offer their support quietly, discreetly, and in a very sincere manner.
Except for one person. Who feels the need to tell me (again and again and again) the three stories she knows about other people suffering through IF, and how easy it was for her to get pregnant with her multiple children, and how she just can’t imagine how horrible it must be. And then, she says it…. “I am SO glad I didn’t have to do any of that! I just got pregnant so easily!” And laughs.
I’m not kidding you. She laughs at the misery of others and her amazing good fortune. One of these days I’m either going to punch her, or tell her what I’m thinking. Which is “Me, too. I’m glad you never had to go through any of this, because you couldn’t take it.” Nothing says “You’re a Freak” like that kind of statement.
My next example is a conversation I had with a family member who has expressed absolutely zero interest in our fertility situation until a recent phone call. Which, I have to say, was lovely and all that, but also really strange after two years of completely ignoring the situation.
It’s hard to catch someone up after two years of constant flux and ordeal. She then said “I wasn’t sure if you wanted to talk about it or not.” Um…yeah. I have a blog about this, ya’ll. It’s pretty much all I do talk about, it seems. Asking how it’s going makes me feel like you care, like you’re interested, like I’m not alone. The only reason I don’t talk about it 24/7/365 is because I know how that would annoy people.
So instead I wait to be asked, and feel separated from my family.
Finally, a very sweet friend recently made a comment that showed me just how much people must view me through what I’ve come to think of as The Infertility Filter. After all, it doesn’t just color how I see the world, but also how the world sees me.
We were talking about her family, and her new niece. She related an adorable story about her nephews as well. We rarely get to see them, so it was neat to catch up and think of them as little people and not as the babies we last saw. We parted ways and about 10 minutes later my phone beeped. She texted to apologize for her story, because she thought the content might have been inconsiderate and hurtful given our infertile state.
Granted, after I spent the next ten minutes really thinking about it I was able to see how someone could have taken offense or been hurt, given the actual content of the story she shared. If they were seriously sensitive and felt the world revolved around them. I, however, love to hear stories about other people’s kids — I spend 5 days a week caring for other people’s children, right?
Even though I was completely un-offended and hadn’t spared it a second thought until she texted, I appreciated her concern.
But I also had to wonder — who else is censoring what they say because I can’t get pregnant? Are we the topic of conversation when we’re not there? Are we your dinner conversation? How often are we referred to as “Brian and Andrea. They can’t get pregnant.” Or “this couple we know who can’t have a baby”.
I hate being pigeon-holed anyway, but to be ostracized by perfectly well-meaning people is kind of a bummer in and of itself. How many stories are we not hearing because someone is worried about our reaction or our feelings? Sure, it’s thoughtful. But it’s also terribly isolating.
A lot of the time, people with infertility isolate themselves. We really don’t want to make people uncomfortable or uneasy. We don’t want to be seen as abnormal, so we keep our problems hidden away. We don’t put our needs and concerns on the prayer list at church. We don’t ask friends to accompany us to the doctor for moral support (at least not after the first time you turn us down).
We don’t offer information, and we are crushed when you don’t ask. Quietly crushed. It’s so terribly easy to believe that we are all alone in our struggles, especially for couples who don’t know any other infertile couples. The longer we’re infertile, the more it builds up, and the lonelier we become.
That’s one reason I blog. Granted, I started blogging before we were “trying”, and I’ll hopefully still be blogging long after we have children, so it’s not technically an “infertility blog”. And yet it is.
I found that when we really started having trouble getting pregnant a lot of my information, ideas, inspiration, and encouragement came from the blogging world. I learned more from other infertile people than from doctors or journal articles. I want to give back to that. I want to be a source of information and encouragement to other infertiles out there who have just received a diagnosis, or just finished their fifth failed IUI, or who have discovered that Clomid doesn’t get everybody pregnant right off the bat.
So I make it a point to live our story out loud and proud. I won’t act ashamed of my infertility, and I won’t pretend it doesn’t exist to make someone else comfortable. I won’t be silent about something that affects so many people, and I won’t make anyone else feel embarrassed either by their fertility or their ability to pop out kids like it’s easier than breathing.
If you got here through a search, you are not alone. Pull up a seat, pop open a bottle of water (no booze in the infertile zone except CD 1-4), and share your stories. Ask questions.
If I can’t answer, maybe someone else can. Let’s learn from each other, and lift each other up. Need prayer? You got it. Need to gripe about how much this sucks, how cold your doctor’s hands are, or how much you really hate scheduled nookie? Go for it — we’re listening.
You are not alone, you don’t have to be isolated, and you are okay.
If we are all determined to do this right out loud, infertility does not have to separate us from them.
by Band Back Together | Aug 31, 2015 | Anger, Anxiety, Faith, Family, Fear, Guilt, How To Cope With Post-Traumatic Stress Disorder, Post-Traumatic Stress Disorder, Self Loathing, Stress, Trauma |
Guilt can be a deadly weapon.
This is her story:
I’ve never talked about it…to anyone but a therapist. And, I have never said anything on my own blog about it. But personally, I think a blog that allows you to declare you are “Not Mommy of the Year” is the place to do it, right?
I carry a lot of guilt, dating back to July 19, 2009.
You see, I allowed my son – my first born & my pride & joy, ride and sometimes even drive a golf cart. That cart – it almost took his life.
I’ll pause here and let that sink in for a moment…
I knowingly allowed my son to operate and ride in a motorized vehicle that was not a) safe b) age appropriate or c) SAFE. What kind of mom does that?
Our children rely on us for many things. But one of the key things they rely on us for is safety. And, if they can’t rely on us, who can they rely on?
What kind of mother looks the other way as grandpa and son drive by (at a speed that is slightly faster than I would prefer for myself) in a golf cart, of all things.
And, this wasn’t your average golf cart. It was as suped up machine, with larger than normal wheels and a tow package. And my son, he isn’t just a normal son. He’s MY son.
I have cried a thousand tears. And made a thousand promises. And worried years of my life away since July 19. I have spent countless hours lying in bed with him, rubbing his hair and praying softly as he slept.
I have prayed for forgiveness. For healing. For peace.
And yet, I still don’t feel like I have paid for my sins.
I can still remember hearing the helicopter circle overhead and thinking – I could have prevented this. Let me be the first to tell you – there is nothing more painful to your heart than to think that you could have prevented your own child’s pain. his bloodshed. his near death.
And you didn’t.
I failed him.
I failed him in my most important duty as a mother. I failed to protect him.
This is the single most prominent factor holding me back from healing. And I know that. And, it is something I continue to work on.
Because, you see…I carry guilt with me.
I carry it in my heart.
And I see it everyday.
by Band Back Together | Apr 12, 2015 | Anger, Anxiety, Breast Cancer, Cancer and Neoplasia, Denial, Depression, Faith, Fear, Hope, Love, Mastectomy, Stress, Trauma |
If you read my profile, you already know that I’m married 23 years with 2 teenagers; a daughter, almost 20 and son just turned 16. Four years ago I was diagnosed with breast cancer, went through a double masectomy, chemo, radiation and reconstruction. I was in remission up until 3 months ago when it was discovered that the breast cancer has returned, in the lining of my stomach, treatable, not curable (1% chance).
This is not to be mistaken for stomach cancer – confusing right?
Needless to say I went through the depression, anger and shock all over again. Only this time it was harder. The optimistic goal of beating it wasn’t as easy to grasp because it had already returned once.
My meds have been changed, my doctor’s visits are more frequent and the side effects more intense. Hotter flashes, sleepless nights and mood swings. I am not always the easy-going, jovial Queen that used to rule this Kingdom. No, I often become that dragon you referred to in the Bands write-up. But I allow myself to breath some fire, release some anger, then I straighten my tiara and return to my throne surrounded by my adoring and supportive family, my riches, my strength, my motivation.
I could fall in the moat tomorrow and get gobbled up by… well whatever lives in moats. I’m not going to let this Cancer defeat me and takeover my Kingdom…
I know I will have bad days but I also know that I will get through them with a little help from my army (my friends and family) …
Today was one of those bad days and then, suddenly, you appeared!
The Band Back Together Project. Thank you for being here.
