by Band Back Together | Mar 1, 2015 | Anger, Cancer and Neoplasia, Cancer Survivor, Caregiver, Coping With Cancer, Depression, Fear, Feelings, Guilt, Happiness, Romantic Relationships, Stress, Trauma |
Imagine being 21 and attending one of the most well-known public universities in the United States. You are studying something you love, having a blast with your girlfriends, and always on the lookout for a potential suitor. You’ve lost some weight and feel really great about yourself. You’re four months away from graduating (a semester early!) and starting your life.
Your future is at your fingertips.
And then you get slapped with your mortality and it feels like your world is crashing around you.
You have cancer.
You know what? Sometimes the chemo, the vomiting, passing out, and the ever-present thoughts of death wasn’t the worst part.
Sometimes, the worst part was sitting on your parents couch at twenty-one, wishing you were going out to that amazing party with all of your friends. Or watching your hair fall out in chunks in the shower. Your beautiful, personality-defining red hair just washing away down the drain. Or realizing part of your soul died when you asked your dad to shave your head because you just couldn’t watch the slow process of it falling out any longer.
Sometimes the worst part was looking at yourself in the mirror and just watching the tears stream down your face as you realized that this is your new reality. You are a twenty-one year old woman and you are bald.
Maybe the worst part was the steroids. Good God those things are evil. In a matter of weeks you transformed from that trim, vibrant woman that you were so proud of, into a bloated, chemotherapy-ridden sick person. You have that look of cancer and it crushes you.
And then there were those few moments where you felt good. You put on nice clothes, brush out your fabulous black wig and get ready for a night of normalcy. The drinks start to kick in, you start talking to a handsome guy. One thing leads to another, he leans in to kiss you and goes to put his hand on the back of your head…. and you freeze. Because you know the second he touches you he’s going to feel your wig. Your cover is blown, you are not one of the normal girls. And the last time I checked, most guys weren’t looking for a date whose chemotherapy schedule would have to be worked around.
So then you just stop going out. You realize this is temporary and it may not be fair, but it was the hand you were dealt.
You live with it.
You stop sulking.
Hair grows back.
Weight can be lost.
Love is still out there to be found.
The bars aren’t going anywhere and you can graduate next semester.
They caught it early.
You are going to be okay.
Other people have it SO much worse.
You will still get that whole wonderful life that you always dreamed about.
You are lucky fortunate blessed.
by Band Back Together | Jun 24, 2011 | Anger, Breast Cancer, Cancer and Neoplasia, Caregiver, Coping With Cancer, Family, Feelings, Guilt, Stress, Trauma, Trust |
i’ve written before about my love hate relationship with the pump… well, mostly about the hate portion. its rhythmic sucking makes me sing little songs to its always irritating tempo. then they mix around with the gymboree songs already stuck in my head. then i realize how badly i really do need the prozac and ativan.
i don’t know for sure how long it’s going to last. i’m trying to be realistic about the prospect of having cancer, undergoing chemo and pumping for (hopefully only) six months. it’s kind of like starting out nursing. i tried to limit my expectations of myself. i said i’d aim for six months and then see if i could go for a year. that seemed ridiculously long to me at the time, much like pumping for six months does now. but a year came and went and well, here we are.
my husband, nugget daddy, stayed down at my parents’ last night so nugget and i have been left to fend for ourselves for the majority of the past two days, save for a playdate and lasagna drop off yesterday afternoon.
i didn’t get to pump at all yesterday. i can’t pump in front of my daughter, nugget. that would be like asking your pregnant best friend to take you to happy hour. i meant to pump last night once she went to sleep, but i fell asleep, too. my boobs had been angry ever since.
nugget likes to have her naps with me, but this limits my options for the duration of naptime as to what i can actually accomplish with twenty pounds of sleeping toddler strapped to my chest, lovely though as she feels snuggled against me. her grandmamie puts her to sleep in the stroller and i bribed her into it with chocolate chips this afternoon so i could pump, finally, and subsequently blog about it. lucky you!
i was so angry the first few times i pumped after starting chemo. it was like rubbing salt in the wounds. i couldn’t nurse nugget and i had to stand uncomfortably in the bathroom watching my milk fill up plastic bottles instead of a happy baby. and then as i would dump the ounces of heartache down the sink a new wound would appear like a gaping mouth to catch my salty tears and sting my aching soul. what a waste.
you won’t find much if you google “cancer” and “breastfeeding” except for articles about nursing after breast cancer. “chemo” and “breastfeeding” yields the same contraindication tagline over and over, and “cancer” and “breastmilk” mostly just points you to article after article about this guy who drank breastmilk to fight his prostate cancer. those, mostly sensational and local news, articles mention milk banks selling milk to cancer patients when they have excess available to sell. it costs $3 an ounce.
i’ve had plenty of time to think about that guy and those $3 ounces while making up songs to the pump’s rhythm and calculating how much i’d just poured down the drain. warning! here comes the crunchy freaky part. squee! maybe you want to stop reading, uptight next door neighbor guy or old school grandpa, maybe there’s a golf game you’d rather be watching. okay, so seriously, why the fuck would i want to keep dumping my milk down the drain when other cancer patients are paying good money to get their hands on it? i don’t know what exactly it might do for me, but it sure won’t be doing anything at the bottom of the sink that’s for sure. so i sucked it up and sucked it down.
it was sort of gross at first, though why exactly i’m not sure. i think it was the temperature. i can’t think of any beverage i regularly consume at body temperature. but now i’m used to it and pleased by thought that i might actually be doing something to help save my own life.
so, now i have a new goal. i want to pump twice a day for the whole six months, or however long it might be. i know i might get sick. i know i might have to stop if i do. but if i approach it the way i did breastfeeding, then maybe i can make it through. maybe if i tell all of you about my plan then i’ll be hell-bent on reaching my goal. maybe some mother out there trolling the interwebs for a glimmer of hope will find my blog now, instead of all the other useless crap i found.
by Band Back Together | Dec 12, 2010 | Anger, Anxiety, Breast Cancer, Cancer and Neoplasia, Caregiver, Compassion, Coping With Cancer, Fear, Feelings, Loneliness, Love, Sadness, Stress, Trauma |
I’m sorry. Right now, I cannot be a good friend. I am not a good wife or daughter, sister, neighbor, niece or cousin. I love you. I appreciate everything you do for me and for my family. But for now, everything I have, every smile I can eke out, every happy moment, belongs to my daughter. I can’t give you what you want, not today and maybe not tomorrow either. I don’t have enough for you.
My fear is all-consuming. I am endlessly treading its dark waters. Your well-intended positivity crashes into me, knocking me down before washing back out to sea. Your genuine, heartfelt words of hope leave me salty-eyed, gasping for air, bracing for the next wave of “You’re so strong!” or “Kids are so resilient!”
Your generous offers to help are not falling on deaf ears, but I’m afraid my desperate cries for it are. I can hear you happily proposing your casseroles, a walk in the park, an eager ”whatever you need!” I’m sure one day I will very much need those things. Today I just need simple kindness, compassion, companionship. I need you to hug me and hold my hand. I need you to stop worrying about the tasks on your list and just be with me, sit here and keep my head above water.
I realize nothing about this is convenient for you. I know the closer you are to me, the deeper the water, the stronger current. I’m sorry that you’re being pulled in, challenged, diverted from your regularly scheduled life. But this is my nightmare and sadly, you’re in it.
so bite your tongue,
you’re not the only one
who’s been let down.
by Band Back Together | Nov 12, 2010 | Cancer and Neoplasia, Chronic Illness, Coping With Cancer, Grief, Health, Help For Grief And Grieving, How To Help A Friend With Chronic Illness, Loss, Parent Loss |
In August of 2006, my mother was diagnosed with cancer. I was at the movie store with my boyfriend and our 4 month old daughter when I got a phone call from my aunt. I had to stand outside because I couldn’t hear her inside. As I stood in the wind with one ear plugged, huddled so she didn’t hear the gusting through the line, she told me my mother was in the hospital fighting for her life. I couldn’t believe it. In shock, I think, I asked her question after question.
My most important question: “What happened?” She went to the ER with abdominal pain, which turned out to be a tumor pushing on her internal organs. She was in multiple organ failure and had to be wheeled into surgery immediately. They only had time to get contact information for my grandparents before she was under and being cut open. They had removed what they could, put her on dialysis and a colostomy bag, and told my grandparents to come as soon as they could. They were 4 states away.
Against the odds, my mother survived the massive surgery which left her with no large intestine, no reproductive organs, and one barely functional kidney. My grandparents packed her home up, leaving behind precious memories and beloved family pets in the process, to try to get her back to their home before another rent payment was due. A few days after they finished packing, my mother was declared stable enough to transport and made the several hour flight away from the only state she had ever called home.
Practically an invalid for months, she relied completely on my grandparents for everything. I was unable to get down to see her, despite impassioned pleas to everyone I could think of, including my and my mother’s previous employer, for a loan. I just needed a plane ticket. A simple fucking plane ticket. $300 that our family couldn’t afford without shutting off the gas in the middle of a Michigan winter. What if she had died in that hospital? Or the months just after? The doctors hadn’t given her much chance, and I couldn’t get a lousy $300 loan to go see her.
How could things get so fucked up so fast? I’d just seen her! She came up after our daughter was born, twice, because soon after she left the first time I needed gallbladder surgery. She may not have been a poster-girl for perfect health, but she wasn’t DYING! How could two months make such a difference? And why the hell couldn’t I get someone to give me a fucking hand up so I could go see one of the most important people in my life when they were practically one foot in the grave?!?!
By the time I finally got to see her, she had mostly stabilized and was started on chemo so the tumors wouldn’t start growing again and really do her in this time. It was a calculated risk: if they started it too soon, and she couldn’t handle literally injecting poison into her body, she died. If they waited too long, the extremely aggressive tumors could grow right back and totally kill her internal organs, if they didn’t starve her of essential nutrients first. Rock, meet hard place. Fuck me.
But she survived. Against all odds – and often stupefying her doctors – she lived. She bulled through that surgery, her recovery, chemo, and eventually radiation as well. And in the end? She kicked cancer in the balls, hard. Her very last oncologist appointment gave her an official diagnosis of remission. Three months later, she died. The treatment(s) had left her with an inability to absorb vital nutrients.
But even as she lay dying, she had the satisfaction of knowing she had won.
She might be dying, but she’d taken the big C with her, kicking and fucking screaming. I’m proud of you, Mom.
by Band Back Together | Nov 12, 2010 | Cancer and Neoplasia, Coping With Cancer, Sadness |
I got the call last night. It’s Stage 4 cancer this time. It’s “everywhere.” I don’t know what to do. I’m half a continent away from them.
On one hand, it’s not right to mourn. He’s not out yet, and they’re beginning chemo again next week. But really, it doesn’t look good. The chemo is just to “slow it down.” And I’m a realist. And so I mourn, if only inside.
This is the uncle that is quietly awesome. He’s in the background, making sure everyone is okay. He’s brilliant, and made sure his 3 kids all went wherever they wanted for college (we’re talking Ivy League Schools), despite living on a teacher’s salary. He’s the rock. When I drove through town on a whim, getting in late, he made sure a bed was made, dinner was left out, and then took me out for a hockey game the next day.
And he’s too young to go.
I guess I don’t really have a question. I just need to type this out, and make it somewhat public. Thanks.
by Band Back Together | Oct 29, 2010 | Brain Cancer, Cancer and Neoplasia, Chronic Pediatric Illness, Coping With Cancer, Fear |
*Of course, no one can fight cancer alone. Or should. But that doesn’t mean that you don’t sometimes feel alone. Even if you aren’t the one who has the cancer.
I still remember walking with my son on his way to the OR. Trying not to fall to pieces. Wanting to believe that the neurosurgeon I had hardly met more than 24 hours before would fix my son. That his hands would be steady as he worked to remove the tumor that was slowly taking over my son’s brain. That the tumor really was “just” benign as he had thought.
Oh, how I wanted someone to promise me that my son would be okay.
The constant plea in my head… just please let my son be okay. Just please let him live.
Oh, dear God… my son was going to have brain surgery. My two-year old son. Brain surgery.
Then the bright white room, people moving about as if on a mission, my eyes locked onto my son.
“Time out!”
Me wondering, “What the hell?” and “What did we do wrong?” Only to realize that they are trying to verify that they have the correct patient and the correct procedure. I try to regain what little composure I have left. I can’t lose it completely in front of my son.
Then the anesthesiologist telling me to kiss my son as it’s time for me to go.
My son is howling as if betrayed. “How dare you leave me with these people?” scream his eyes. Then the medicine starts to take an effect and the life seems to fade from those same eyes as his body goes limp.
I walk out of the OR. Without my son.
I had never been more terrified in my life.
That was four years ago.
In the last few days, I’ve been teaching that son to Rollerblade. The one who before the diagnosis had problems with balance and motor skills. Now on rollerblades.
It’s one of the most beautiful things ever.
But he didn’t make it to this point alone. Nor did I.
Nearly a year after our son’s surgery, my husband learned of a program called Hero Beads offered by a local childhood cancer support group called Capital Candlelighters (soon to be renamed Badger Cancer Support Network). This string of beads documents the diagnoses, treatments, milestones, etc. along a child’s journey.
It’s almost indescribable seeing your child’s medical history as a string of beads. And regardless of outcome, there are always too many beads.
And while I treasure those beads, Capital Candlelighters offers kids and their families so many more concrete means of support. From financial aid to support groups to sharing information… anything that they can do to make the hell that is childhood cancer easier for children and their families.
Over time my family has begun to participate in events either sponsored by or to benefit Capital Candlelighters. We recently walked in our second Suzy’s Run. It’s a highly emotional experience. Seeing the families and kids who are still fighting or have beaten cancer. Seeing the families whose kids have lost.
So it’s time for me to do more, to give back. Because doing good feels good. But I’m not done yet.
“…because kids can’t fight cancer alone!” (Capital Candlelighters motto)
(I’ll be damned if I don’t tear up every time I read that motto.)
