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.)
by Band Back Together | Oct 24, 2010 | Anger, Breast Cancer, Cancer and Neoplasia, Coping With Cancer, Fear, Feelings, Sadness |
Yesterday afternoon, shortly before 12:30pm, I nursed my sweet baby girl for what I can only pray was not the last time.
I sobbed silently, my tears dripping onto her curls while a swarm of my closest friends and family buzzed around the kitchen. I was losing my religion in the living room and the day was only halfway over.
My mother is back and stayed with Nugget while Nugget’s Daddy worked from home. Barbara and Martha took me to chemo. Despite having loaded up on Ativan, I cried most of the way there.
I wore a top that would provide easy access to my port, which had been slathered with theemla cream and covered in saran wrap for at least an hour.
Patients are only allowed to have one guest accompany them to the treatment room. I had two, who would not take “just one” for an answer. Marla, my oncology nurse, happily pulled up another chair to accommodate my posse.
Then a senior patient, as all the other patients seem to be, swung the treatment room door open and announced, “Well! All the good chairs have been taken.” I wondered if I’d gotten one of the good ones. I hoped so!
Marla drew the curtain so she could access my port. I told Barb and Martha that they would be watching, because I couldn’t really get a good look at the action and wanted to be sure my friends suffered along if there was indeed any suffering to be done. There was not. I think it was worse for them. Then the two of them chatted about how they’d like to be nurses except for, well, all of the gross stuff. Cute scrubs had been really, really appealing, but simply couldn’t trump dealing with blood and needles.
The dynamic duo was relentless in their efforts to keep me entertained. As I was showing them my phone that Nugget had rendered the antenna unretractable on, Martha cracked, “Your phone has an antenna?” I replied with a smart, “Shut your trap!” which sent senior patient #2, coughy McHacksalot, into a rage of laughter and then into a, well, fit of coughing and hacking. Note to self – keep wiseass cracks down to a dull roar in the treatment room or suffer the wrath of coughy McHacksalot.
Treatment went fairly well. I had no reaction to the test dose of Bleomycin. I took the extra dose of Ativan she offered. (duh!) At one point I was having some pain, almost like a burning sensation when I took a deep breath. so Marla switched my iv bags and checked my lungs. Whatever it was, it subsided and I finished Day 1 of treatment with no real issues.
by Band Back Together | Oct 23, 2010 | Chiari Malformation, Chronic Illness, How To Help A Friend With Chronic Illness |
The Doubt.
There is a pretty good percentage of neurologist who think that Chiari Malformatio isn’t significant. They think that it is almost exclusively an incidental finding that just happens to show up on MRIs of people with crushing headaches. It’s like they hear hoofbeats, see a horse and go, eh, I think that’s just a coincidence.
So when I told the neurologist my past medical history, before I got past the part about being diagnosed with Chiari Malformation he looked and me and said, “now, was this a real Chiari?”
No, you’re right. It was really a series of unicorns and rainbows that made it look like my brain had squirted out into my neck, thereby compressing a lot of really important stuff. How silly of us to not realize. I wonder how the 3 neurologists I saw before surgery and the 3 neurosurgeons I got second and third opinions from missed the fakeness of my condition. I mean really.
It makes me angry. It comes across as a doctor asking you if you had brain surgery for fun. It comes across as an accusation of faking it. And it makes me livid. The last neurologist I saw did the same thing. As did the one before that. And until they look at my early MRIs showing the severity that my Chiari and how it messed with my brain and spinal cord, they treat me as though I made this up, as though I wanted this life, that surgery, this year of endless headaches.
In the end they all let it go, or change their mind and move on with the exam and eventually treatment. But I feel like I spend the first 20 minutes of each exam justifying the scar on my neck, justifying the choice to have this condition treated.
I have a lot of faith in doctors. I’m married to one, I am entering into a career in the health field myself. But I am tired of being condescended to. I’m tired of doctors acting as though I am ignorant of my condition because I’m not a neurologist. As though I didn’t do the research, didn’t ask for multiple opinions, didn’t play the wait and see game until I was so miserable, so uncoordinated, so incapacitated that I couldn’t function. I’m tired of the air of doubt in my symptoms.
If I had a tumor, they wouldn’t ask if it was a “real tumor.” If I had MS they wouldn’t ask if those were “real lesions.” But somehow, because my condition isn’t well known, isn’t well researched (or frankly, researched at all), there is a constant doubt to my story, to my history, to my pain.
And it makes me doubt myself. And I hate that even more
by Band Back Together | Oct 21, 2010 | Eating Disorders, Guilt, Health, How To Help With Low Self-Esteem, Self Loathing, Self-Esteem, Shame |
Disclaimer: This is written from a really dark place. If body image issues or food relationship hangups could trigger you, please don’t continue. This post sounds dire and desperate and awful, and I suppose it is… but despite the darkness, I am actually quite happy with my life overall. It’s just this one head space that I can’t get right.
I haven’t been blogging… and this morning I finally realized why. I was reading Mish’s post (I am guilty if I eat) and here was my comment:
Thank you, thank you, THANK YOU!!! I could have written exactly this today. I have been really struggling lately because I have lost 40 pounds, but with the stress of grad school, working from home, a toddler, a marriage and my health journey… I’m slipping. I gained three pounds in two weeks, and so far this week isn’t looking good either. I’m eating terrible for me things on purpose, in crazy amounts, allowing myself to consciously and purposefully choose the worst options even when they aren’t what I really want. I don’t know how to stop it… I am terrified that I’ve done it again, had some success only to turn around and sabotage it all and end up so heavy, unhealthy and miserable again.
While I typed out that comment, I realized… I’m not blogging because I have nothing good to say.
I’m overwhelmed. Maybe even depressed.
I’m putting myself last because something has to give and I don’t know what else can, but me. I know how important it is to take care of myself, but when the other categories are my marriage, my daughter and my graduate classes, I’m the only thing that I can let go of without destroying some bigger dream.
(Well, without destroying some bigger dream for all of us.)
Health is my bigger dream… but now I’m terrified that I just can’t get there. I’m purposefully making terrible food choices. And the worst part is that it’s not really about the food, but that I am choosing the worst options strictly because they’re bad. I’m not exercising. I feel unmotivated, uninspired, and unhappy.
All of my old thoughts about my body have returned, and all I seeing the mirror is a fat, unattractive woman and it makes me wonder why I bother. If this is me anyway, why bother?
I’m sneak-eating again. I’m buying food when I’m out and eating it in the car. Then I stop somewhere to throw out the “evidence” so that no one knows. Some of my smaller pants are already getting too tight again.
I know how this works. I’ve been here before. I know all of the arguments. I know how much better I look and feel now. I know how hard it was to lose 40 pounds and how much I don’t want to gain it back. I know how proud I am of the work I’ve done, and I know exactly what I need to do to keep it going… so why am I not doing it? Why do I continue to make poor choices?
How do I choose myself when it means taking something away from my daughter, my marriage, or from the job that brings in a tiny but absolutely necessary amount of money each month? How do I choose myself when I’m taking away from the graduate work that will mean a better life for myself and my family someday soon?
I know I’d have more to give, in some ways, if I made time to take care of myself… but how do you do it? When you’re standing there, making the decision between cuddle time with your daughter and getting up to exercise, or between making a healthy dinner and caving to take-out pizza so that you can finish your homework without staying up until midnight…
How do I choose me?
by Band Back Together | Oct 21, 2010 | Anniversary Reactions, Grief, Help For Grief And Grieving, Livng Through A Miscarriage, Loss, Miscarriage, Pregnancy |
I hate math.
But lately, I’m obsessed with numbers.
It’s been 112 days since I got my first positive pregnancy test.
And it’s been 60 days since I had to have a D&C to remove the baby that didn’t thrive.
My period should arrive in 2 days.
But I’m waiting 5 days to test, because I promised a friend we’d test together.
She’s gone through this too.
I’m constantly counting days, averaging them out, marking my calendars, and keeping track. Who knew trying to get pregnant would become my new full-time job? I spent so much time trying not to get pregnant, and now that I want to? Well, so far, it hasn’t been easy.
A friend of mine is due the day before I was. It kills me to know this. All the other February mommies are finding out the sexes of their babies, marveling at their growing bellies, buying clothes, furniture, and picking out names.
And I’m back at square one, thinking about things like mucous levels and peeing on sticks.
Trying to get pregnant is so sexy.
So here I sit. This week could change things forever.
Or not.
I hate waiting…
by Band Back Together | Oct 20, 2010 | Anger, Anxiety, Family, Feelings, Guilt, How To Help A Friend With Infertility, Infertility, Jealousy, Loneliness, Sadness, Stress, Trauma |
“baker baker baking a cake
make me a day
make me whole again
and i wonder what’s in a day
what’s in your cake this time”
Infertility has forever changed the fundamentals of my being. Almost two years have passed since I suffered through the last of my IVF cycles. Physically, my body seems to have recovered from that violation. Emotionally, I am damaged beyond repair. I mourn the loss of that whole, hopeful person I once was. Even though he’d never admit it, I’ve also crushed my husband’s dreams of normalcy. I can’t help but wonder how many maybe babies there were that we never knew, that never stood a chance. I’m heartbroken for my friends who are still fighting the uphill battle towards motherhood and those who are suffocating under the crushing weight of loss.
Maybe today I’ll file away some of my bitterness and anger. So much of it I carry around in secret. After all, I have my beautiful, perfect little girl here in my arms. What about my friends who don’t? Don’t they better deserve to wear their heartache like a badge of honor?
Aren’t I supposed to just get over it and just be happy? I want to, but I know I never will.
