A Reprieve

I had scans following two cycles of chemo and it seems that the medicine is working its magic. The cancer has been knocked back in my lungs and my heart, the new stuff that showed up in my abdomen in July is gone, and sclerotic bone mets have appeared, which indicates that they were hiding out but are now dying. (I guess I also had some broken ribs?!? Who knew.) Much to my surprise, even my brain MRI showed improvement, with mets and edema showing reduction. Whew!

Cancer is a thief that steals by inches and by miles. Sometimes stealing pennies, sometimes pearls.

For the past few months it’s has stolen my breath. It’s startling to look back on how frail I was just a few weeks ago. Jason had to push me in a wheelchair for my first chemo, since I was too weak and short of breath to get there under my own steam. During that time, I couldn’t walk more than a few steps.

And now, thanks to chemo, I can walk again. I can yawn again. I can hold my breath. I can (mostly) take a deep breath.

I still have a very long way to go, but I can feel my lungs slowly getting stronger.

My balance issues have remained, meaning it wasn’t the trial drug causing those. They are likely the result of brain surgery and several bouts of radiation. Which also means there may not be a ton of improvement there, even with effective cancer treatment. Wobbliness may just be part of me now.

Cancer has stolen my gracefulness. It has stolen my handwriting. It took my naïveté years ago.

But chemo has given me back my breath, so I willingly continue my cantankerous partnership with this prickly friend.

I can go for a walk again. I can cook a meal again. I can take my kids to the park again.

I am slowly clawing my way back.

Day 30: Jamie Shull, advocate. "Anyone with lungs can get lung cancer."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 30: Jamie Shull, advocate
"Anyone with lungs can get lung cancer."

I am happy to connect you all with lung cancer advocate Jamie Shull.

Jamie will be quite thrilled when lung cancer is a manageable, chronic disease, that keeps people living and living well.

She feels strongly, “Anyone with lungs can get lung cancer.” That is the message she spreads.

The cancer bomb exploded into Jamie’s life when her husband of 18-years, Kurt, was diagnosed with advanced stage lung cancer in December 2010. She took on the roll as primary caregiver doing what ever it took to ensure the best care for her husband and their 14-year-old son. First line treatment took nearly everything out of Kurt. Unwilling to accept the way things were headed, Jamie, using her superior “get-shit-done” skills, found a clinical trial at a local teaching hospital – a turning point for Kurt as well as lung cancer as a whole.
...continue reading...

Day 29: Genevieve de Renne, caregiver. "Never underestimate the power of love, and the power of your own thoughts."

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015

Day 29: Genevieve de Renne, caregiver
"Never underestimate the power of love, and the power of your own thoughts."

How long have you been a caregiver?
"If you are just talking about being a lung cancer caregiver, it has been a little more than nine years since you were diagnosed the first time. If you define being a caregiver as being there for someone unconditionally, it started when I was a single mom, and then when I was a caregiver for my parents in their later years."

What was it like in the beginning?
"I was in an emotional haze. It’s gut-wrenching to see your loved one go through something like this, and to know that there’s nothing you can do. I had no control, and it was challenging for me. I wasn’t prepared for how quickly I could go to straight to fear."
...continue reading...

Day 15: Dr. Lucy Kalanithi, Lung cancer advocate and former caregiver. “Lung cancer happened to Paul, but it’s something we did together.”

PROFILES IN LUNG CANCER
Lung Cancer Awareness Month 2015
 

Day 15: Dr. Lucy Kalanithi, Lung cancer advocate and former caregiver
“Lung cancer happened to Paul, but it’s something we did together.”
Twitter handle:@rocketgirlmd

Who are you?

I am Paul Kalanithi’s widow, I’m a doctor, and I’m Cady’s mom. 

My husband was Paul Kalanithi, a neurosurgeon and writer who was diagnosed with stage IV lung cancer in 2013 and who passed away this year at age 37. Paul and I met and married in medical school at Yale and moved to California together 8 years ago to start our residencies. When he was diagnosed, our top priority (apart from the best medical care) was to clarify what was truly important to us and help him seek meaningful time. That included going back to work and, for him, writing (including the essay “How Long Have I Got Left?” in the NYT and working on a memoir). We’d always thought we’d have a child together at the end of residency and when he got sick, it was about that time. We decided we were still going to do it, despite Paul’s illness. So, I am also Cady’s mom! [Cady was born in 2014, 14 months after Paul was diagnosed with lung cancer, and 8 months before Paul passed away.] She brought us incredible joy.
...continue reading...

Don't Just Put On a Happy Face

WANTED: Someone who will let me speak my mind about this terrible disease, without having to be brave or positive or sun-shiny. Someone who will let me blow off steam and rant, someone who will let me feel negative and speak my fears about what lies ahead.

 
DESPERATELY SEEKING: Someone who will let me say that I am scared about what might be. That this disease freaks the crap out of me. Someone who will let me not be tough for a few minutes, but break down and cry about my anxieties.

I may get some static for this post, but I think that there is too much pressure on cancer patients to stay upbeat and cheerful all the time, dancing through treatments and smiling during scans. "You can beat cancer with a positive attitude!" Bah, if only that were true, I wouldn't have lost so many friends to cancer. On the contrary, it is perfectly natural – even healthy – to allow yourself to imagine various possibilities of what could be. If you have ever watched children play, you would notice that they act out "scary" scenarios as a way of understanding the world. Virginia Koste tells a powerful story in her book Dramatic Play in Childhood: Rehearsal for Life, about two children pretending to drown in a swimming pool. Their mother was alarmed at first, wondering why they would play at something so terrifying. She came to realize that by acting this out, they were diffusing their fear, and working through what they would do in that situation.


Few adults play-act these kind of scenarios as expressively as children, but we still run through them in our minds. How many times have you mentally rehearsed a difficult conversation before having it? How often have you played out "what if" scenarios in your mind? We instinctively know that these rehearsals help us feel ready to deal with challenging situations.


I understand the impetus from well-meaning friends who interrupt with "don’t say that, just stay positive!" when you talk about fears of what may come to pass in your cancer treatment, but they don't seem to understand that speaking about these anxieties is a means of release. The patient ends up feeling like she has to act happy and fine all the time, and stifles the desperate need to talk through all of this. Unfortunately, oftentimes caregivers feel the same responsibility to put on a happy face around their loved one with cancer, lest they bring him down or pierce the bubble of positivity. It ends up becoming a farce-like scenario you might read in a "Missed Connections" ad, where both people are looking for the same thing and don't realize that it is right in front of them.


As I mentioned in "Dedicated to the Caregivers" I have a phenomenal caregiver for a husband. And while he is often the one who brings me up when I'm feeling blue, I cherish the conversations we have where we let each other know how f---ing terrifying this is. In fact, one of my favorite memories happened a few months after my diagnosis, when it had finally all sunk in. By this time, we had cried rivers of tears and we were starting to accept our new cancer landscape, coming to grips with how totally bizarre and surreal our lives were now. We were talking with a friend about my diagnosis, and the friend said,

"But they caught it early right?"

"…No, no they didn't."

"But they can treat it and you'll be okay, right?"

"…No, no it's actually pretty bad."

And then my husband and I burst out laughing. Really, you can only cry so much, then you just have to laugh. If we hadn't been able to talk to each other freely about all our fears, we wouldn't have been able to share a laugh over how absurd this all was. (Our poor friend looked a little startled.)

Of course, this goes far beyond cancer. How often do we hide what truly bothers us, pushing aside what we really want to say or do because we are afraid of how others will react. I say, go for it! Speak about it. Be bold. You may find that you are less alone than you think, and you can laugh together rather than crying alone.



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/01/dont-just-put-on-a-happy-face

Dedicated to the Caregivers

Last night renewed my admiration for caregivers.

My husband and I were getting ready for bed when we heard a strange noise coming from our daughters' room. We ran downstairs and found one of the three-year-olds standing outside her room, mouth hanging open and making a horrible gagging, coughing sound. At first we thought she was throwing up, but then she kept trying to suck in air, and it almost sounded like she was choking. "Can you breathe?" She shook her head and tears rolled down her cheeks.

My husband donned his superhero cape while I grabbed her coat and hat. He whisked her into the car. I scraped the ice off the windshield while he buckled her into the car seat. And they were off.

I stood there and watched them drive away, feeling totally helpless.

How do caregivers do this?!?

Her sister had woken up, so that snapped me back to my senses.

Okay. Focus.

Get her sister back to sleep.

Run through nightmare scenarios in my head.

Check on the kids.

Feel like throwing up.

Fold laundry.

Check on the kids again.

Stare at the clock.

Calculate how long it takes to get to the ER, check in, see a doctor.

Check my phone to see if I missed a message.

Check on the kids 1,000 times.

Sit down.

Stand up.

Scroll through adorable pictures of the kiddos.

Turn my phone buzzer to max.

Stare off into space.

Jump out of my skin when I get a text.

It's just croup, she's going to be okay. They will be home in a few hours.


Finally exhale.

Breathe.

Breathe.

Focus.

Find humidifier.

Clean out humidifier.

Reflect on how caregivers live in this space of terror, being responsible and powerless at the same time.

Feel humbled and amazed.


I've been living with stage 4 lung cancer for a year and a half now. My husband has watched me struggle to breathe, seen me puke my guts out, taken me to countless doctor's appointments, taken over cooking a meal mid-stir when I was too exhausted to go on, run from floor to floor of the hospital parking ramp looking for a wheelchair for me, all the while keeping our household running and parenting our three small children. I have no idea how he does it. In sickness and in heath, indeed.

To all the caregivers out there, all you unsung superheroes, my admiration for you is greater than ever. Watching someone you love struggle to breathe, battle side effects, and deal with endless pain is its own kind of torture. We patients go through this because we have no choice. You do it out of love.

That, my friends, is truly inspirational.



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/01/dedicated-to-the-caregivers

Superhero image courtesy of vectorolie at FreeDigitalPhotos.net