Showing posts with label health advocate. Show all posts
Showing posts with label health advocate. Show all posts

Thursday, April 17, 2014

Bunk Beds and Backpacks

This is why I'm not as successful at this whole blogging thing as I possibly could be: I disappear for weeks on end. Forgive me. Life has been fun--and thankfully--melanoma free lately. I'm also having a major issue with my computer that even my IT degree husband can't fix. Anyone have any advice for a good laptop? Apparently I am now in the market. 

Since we last spoke, I turned 27 and my dog got diagnosed with cancer. I'll update you on all of that when I steal my husband's computer from him. Today I wanted to share this incredible article my new friend Kate wrote. I'm not sure how I came to read Kate's blog, but each post leaves me with chills, and usually tears. One day soon I'm going to take that 3 hour drive to DC and meet her in person.

In the meantime, please, my friends, meet Kate:



Bunk Beds and Backpacks


We were married when I was twenty six, and we held hands in a church in Arizona while I hoped the day would go off without incident.  Now I am thirty, and I hold his feet in my hands as I slather them in peppermint oil and massage, hoping he will rest.

"I was thinking on Saturday we could go look for bunk beds in the morning," I say as I sit on our bed, trying to create nightly "rituals"--as suggested by our holistic health practitioner--because we don't sleep.

"Sure," my husband says, reclined against the pillows, "we can do that."

A birthday gift for our soon-to-be-two-year-old, a big boy bed like his big brother.  But then I imagine their room without a crib, just two boys, no more babies.  I start to cry.

I begin to tell him that I want another baby, even though he already knows and even though I already know what he'll say.  He's not interested in having more children, and it kills me every time he says it.  He's too tired as it is, he will tell me, we can finally travel, the kids are finally old enough.  If we have another baby, we are back to square one, back to sleepless nights and non-stop nursing and no time for anything that we love.

And sure enough, he says all of these things.

"But they grow up," I tell him, "they're not babies forever--look how fast it happens," I motion to their room on the other side of our wall, the room that holds two towheaded boys.  They are enough, but sometimes, I tell my husband, I long to hold a baby, to know that we will have a house full of noise and toys and balls and dirty clothes for a long, long time.  That we will have millions of grand babies and great grand babies. 

I can't be left alone, I think to myself.

"I won't try to change your mind," I say, rolling onto my back, lying next to him.  "I wouldn't want you end up blaming me if something happens."

If something happens.  

He sighs so deeply that seems to unleash something in him.  He clears his throat, and I can tell, without looking, that he is holding back tears.

"There is nothing I want more in this world than to have a house full of kids with you," he confesses.  "But I don't know what our life will be like, I don't know if I'll be here in five years, or even two years, and just like you don't want to held to blame, I don't want to leave you with a big family if I can't be here to help you.  What if I get really sick again, and you're taking care of a newborn?  I can't do that to you."

He refers to his diagnosis--stage III melanoma--with a fifty percent survival rate after five years.  He is a year into his clinical trial, yet for some reason only recently has this statistic begun to haunt him.  It haunts him to the point of sleeplessness, to mental anguish.  It haunts him so relentlessly that he has started to change--he is not the same man I married four years ago.  So I massage his feet with peppermint oil, hoping it'll bring him back to me.

I am crying now, big tears rolling down my face, because I understand him, understand the truth that is finally escaping his lips, and my heart breaks for it.

"But for me it's different," I confess, "because I want more little versions of you, just in case."  Like an insurance policy, I think, a safety net, I want to surround myself with more little people that are just like him--if something happens. 

We lie together, crying slow-rolling tears down exhausted cheeks, silently understanding and silently struggling.

I roll towards him, wiping my tears on his shoulder and neck, burying myself in his smell.  "I'm so sorry," I whisper.  I'm so sorry we have to live like this, I'm so sorry that all of our decisions are based on the probability of life versus death, that his cancer won't come back, that he will win.  I think these things, but don't say them aloud. 

"I just want to give you everything you want," he whispers back, "I'm so sorry I can't."

Eventually, we fall into a sleep so deep it obliterates all possibilities of dreams.

Two days later I am seated in a coffee shop, watching ice skaters glide in circles on a DC ice rink though a big picture window.  I try to write, but my mind is blurry from lack of sleep and throbbing emotion, and so instead, I call my mother, because I know she will pick up, and I know she will listen.

"Why are you at Starbucks at nine o'clock at night?" she asks me from her vacation in Florida, knowing I would usually be at home in my pajamas, sitting with a hot mug of tea and my husband by my side.  Tonight, however, I am frozen and tired and cannot wait another second for my breakdown.

Surrounded by strangers working silently on laptops, with ear buds and the buzz of caffeine to drown me out, I begin to detail the latest emotional trauma in a slew of disturbances over the last fifteen months.  I tell her about babies, about statistics that she already knows, about my husband's thoughts of his own death.  I sob as I divulge my deepest fears, shivering uncontrollably--though from cold or from fear I can't decipher.

She is silent for just a moment before she speaks.  

"You are both making this decision out of fear," she tells me, "You are afraid he's going to die, and so you want a baby.  He's afraid he's going to die, and so he doesn't want a baby.  But both of you are using fear as your motivator.  That's no way to make a decision--especially one like this."

I watch an ice skater spin in circles in the center of the ice, faster and faster, until she almost loses control.  She stops herself just in time, then skates away.

With a brown paper napkin, I dab mascara stains off my face.  I glance around to see if anyone was witness to my breakdown.  If they were, they don't show it.

"Thanks, mom," I tell her, "I should go home now."

I find my husband at the computer.

"Did you talk to him?" I ask.  My stint at the coffee shop was an effort to grant him the privacy of a phone call in our tiny DC townhouse--so he could discuss things like dying without his wife around.

"I did," he gives me a half smile and a shrug.  Then he begins.

***

"Mmmmm," I say, glancing up from my computer, "smells good."  My husband shrugs and modestly tells me he hopes it turns out as he stirs the fragrant curry he's making for dinner.  I put the kettle on, then lean against the counter, waiting.  It has been a week since our baby breakdown.

"We've talked so much about having another baby, but have we come to a resolution?" I watch him.  "Will you ever feel comfortable enough with the statistics to move forward?"

He leans back, a dish towel thrown over his shoulder and hands in his pockets, thinking.

"You know, my friend told me it gets easier the further away you get from it," my husband says as I pour boiling water into my cup.  His cancer friend, his mentor, who is fifteen years from his diagnosis, was the phone call my husband made earlier in the week as I watched ice skaters through blurry eyes in a coffee shop.  "You have to live your life like you would without cancer," he told my husband.  "You can't let it run your life.  And it will get easier, you're still right in the thick of this."

But the further we get from this, the older I get, I think to myself.

He shifts his weight and I notice the dark circles under his eyes, his disheveled hair--reminders of a surprise visit from the side effects of his treatment and his weekend spent in bed, forgoing our ski trip because he was too ill to travel.  Another example of the utter lack of control he has over his--our--life.

"To be honest, I crave a little bit of stability right now," he tells me, his blue eyes misting.  He's right, we have moved three times in the last eighteen months, and we can't find things like birth certificates and passports. 

"I still haven't unpacked the backpack from Argentina," he laughs.  The backpack, storing his medical records from the hospital in Buenos Aires that biopsied his cancer-filled lymph nodes, that delivered the news that would change our lives, sits in a closet in our basement--a metaphor for how we've dealt with this disease.  For the last year, we worked through the physical trauma of this illness--cutting out the cancer, infusing medication into his body to prevent a recurrence, dealing with infections and subsequent hospitalizations until he was finally healthy--and now, at the year anniversary of his clinical trial, we are just starting to sift through the emotional wreckage. 

I watch him as he moves back to the stove, absentmindedly stirring the curry.  Another baby, perhaps, but right now, he needs someone to help him unload the backpack.  This wasn't what I expected when I married my husband on a 115 degree day in the desert four years ago.  But it's what I promised. 

"Let's go get that backpack," I say. 


Chills, right? Go read all Kate's post now: http://effthec.com/

And forgive me for being a horrible blogger. I needed a little break. XOXO!
 

Tuesday, January 28, 2014

Monday, December 10, 2012

In Charge

One of the hardest things about being diagnosed with stage 3 malignant melanoma was losing the control I had over my life. OK, I know none of us have complete control of our lives, but our daily schedules are made up of what we want them to be. Early coffee alone on the couch, 8 hour work day, dinner with the little guy and Mr. Spots, heck maybe even five minutes for  a cuddle session with the dude. That's my typical day. While ideally I would like a yoga session mixed in there, it hasn't been happening lately. When I was first diagnosed, my schedule went to crap. My newly diagnosed life consisted of meeting with yet another new doctor, flying to New York to visit my new cancer center, flying home to Virginia to recover from surgery, to moving home with my family to begin 12 weeks of treatment, etc, etc, etc. I lost all control over my life. (Well, during the angry stages I experienced, I felt like I lost that control.) It made me crazy.



All I felt like I had--and it wasn't always--was the opportunity to share my concerns, ask my questions, and pick a new doctor if I did not feel comfortable with the one I had. I was the patient, and while we like to believe that every doctor is on our side, if we don't feel comfortable, how can we have complete faith in the one making life saving decisions?


I'm sharing this because today I received a message on my Facebook page from a woman who had a mole removed 10 years ago. The mole was benign; however, over the past few years she noticed the pigmentation returning. She double checked the area with multiple dermatologists to see if she should be concerned with it. Cathy wrote to me, "...they all told me no - since it had been removed it could not come back and was only pigmentation." Today Cathy went in for her yearly check-up with a new dermatologist. Sure enough, this dermatologist zoomed right in on this suspicious area & removed it. The new dermatologist told Cathy that moles can come back and can become cancerous. Now Cathy is waiting for the pathology report on an area that has been bothering her for years.

I'm like Cathy. I tend to be very trusting. I figure these doctors have had years and years of education and experience, why shouldn't I believe what they say?

While I'm not saying you should doubt every doctor, I do encourage you to find one you trust and feel comfortable with. This is your life we are talking about!

I want to thank Cathy for sharing her experience & encouraging me to share it with you all. She wrote, "It angers me that we trust our doctors so much (with our life!) and we can be told incorrect information that can cause devastating results. I'm so glad I found this new Dermatologist!"

Lesson that I'm still learning: I have no control over melanoma, but I am still in charge of what I do to deal with it. Be your own advocate.

Source





*A huge thank you to Cathy for wanting my readers to hear her story & learn from her experience. We are all impatiently waiting to hear your good news!