Category Archives: cancer

Hospitals are the worst

I hate hospitals and I didn’t even know it.

It’s been a good four decades that I’ve been going to and leaving them on autopilot. I’ve been to every major hospital in the metro area.

Mostly psych units to visit my mom. Then cardiovascular units. Then rehabilitation centers. Then ICUs. Then more rehabs. And finally, the neuro ICU where the doctor told us she would not survive on her own.

It’s a sterile sensory overload. I hate it so much.

It was driving to sit with S in post-surgical recovery – this time it was removing 7” of her colon for a yet-to-be-determined mass – that I realized that I just loathe them.

I hate everything about them.

Thank you to the people who work in them, but fuck I haaate hospitals.

Later

The mass is a new cancer.

To recap, at 45yo, S has Stage IV melanoma and Stage III neuroendocrine.

We just laughed because, I mean, what in the actual fuck?

The Eye of the Shitstorm

While expected thanks to the Zelboraf, this is likely a temporary status.  The drug typically works for five months. So T minus three months.

NED

Foreshadowing

In high school, I randomly went on a trip to Europe. I say randomly because I was 16 and didn’t have a sense of self much less a sense of adventure.  My dad was the son of a rear admiral whose career took his family all over the world. As an international commercial pilot himself, he taught me to imagine beyond the invisible boundaries of my young life.  He’d bring back coins stamped with strange people and symbols. I deposited the coins in a tiny clay pot I made in school, but not before I’d locate it’s point of origin in my Rand McNally Atlas.

I was ‘selected’ to go on this student ambassador trip to Europe. I’m pretty sure that ‘selection’ had something to do with research on my parents’ tax return, but it didn’t stop my dad from being excited about the opportunity for me to travel and he never really got excited over much.  I’m not sure why I decided to go, but it was probably more to make my dad happy than anything else.

Looking back, this trip was perfect for young deviants. We were left to our own devices with only Chuck, Carol, and Vern leading 30 some teenagers through Great Britain and Ireland.  Chuck was creepy, Carol could have cared less, and Vern…I don’t actually remember anything about Vern. Anyway, the sex, drugs and rock-and-roll that could have happened either didn’t or I was too naive to notice.

A few days in, Ali and I connected over our shared love of peaches. One late night talking on the ferry from London to Wales and we were inseparable for the rest of the trip. There were some cool people on that trip and looking back, I wish I would have taken the time to know. Like Leah.  Today, Leah and I are Facebook ‘friends’.  ‘Friends’ like we talked about commiserating over beer about her mom’s brain cancer and my mom’s mental illness and her brother-in-law’s terminal gastrointestinal cancer and my BFF’s melanoma, but we’ve never actually made it happen.

Last week, her brother-in-law died. He lived 2.5 years longer than the experts told him he would. And during that time, he shared with any group that asked a powerful message about living. He was scheduled to speak at a fundraising event for me in the fall – if he made it that long. As a result of that commitment-with-an-asterisk, I watched his CaringBridge page closely.

I slipped into a funk when I learned he entered hospice just days before the cancer overtook him and I cried the day he died. I knew I wasn’t crying about his death, but it took a moment to find the root of the upset.  The average life expectancy for someone withe metastatic melanoma is 16 months.  This felt like a foreshadow of what it will be like for S when the cancer overtakes her.

Hail Mary

It came too soon.

Well, all of it came too soon, but more specifically S shouldn’t be on the last ditch drug yet.  It was barely a year ago, on May 8, that the dermatologist told her the mole on her left shoulder was likely Stage 2 cancer.  Stage 3 happened on May 30.  I can’t even remember when Stage 4 officially joined the party.  July, I think?  Regardless, it wasn’t that long ago.

Zelboraf is the brand name of vemurafenib.  It’s a $14,000-a-month, eight-pill-a-day cancer poison. And as hardly a noun escapes a nickname in my vocabulary, it’s better known as ‘Zebra’ the brand name of ‘Venom.’  And while Venom is sadly apropos, I opted for the cute safari animal over the toxin.

Zebra is all-powerful and eradicates cancer from the body. But it’s also the last ditch drug. It can only be taken once and generally only works for an average of six months before it’s overcome.

Someday, I hope Zebra is like aspirin to a headache. Doctors will say, “Take two Zebras and call me in the morning.”  Someday.  I hope. For now, it is a Hail Mary.

It’s Coming

The temperature is starting to drop and the breeze has more of an intention now.  I cannot see the cover of darkness that looms on the other side of the horizon, but it’s coming.  The birds are silent and I have developed a sixth sense about these things.

I once swam amongst a rainbow of wildlife on the Great Barrier Reef.  I didn’t notice when fish evacuated and there wasn’t even time to be frightened as the two-foot reef shark sauntered in as quickly as he sauntered out of sight.

The ignorance of impending disaster is much preferred to constantly bracing for it.  I wish I was blissfully unaware, like the time before the shark.

However, I have found the answer to the question of whether it is easier to lose someone suddenly or to watch them die. While the end has not come for my mom or S I will always be grateful that I had the time.

Horse Pill

When S called on Monday – the very day some sociopath bombed the Boston Marathon – to tell me the cancer had spread to her brain, I didn’t feel anything. Not numbness. Not upset. Not defeat. Nothing.

I’ve decided that’s because this news of a brain tumor is a horse pill.  It is one supersized pill too far. No matter how I try to swallow it, I can’t. I just keep spitting it out. It doesn’t matter what hopeful or devastating statistics it’s hidden in, it’s not going down. So I refuse.

S BrainThere’s no doubt a pinky-nail-sized tumor exists.  Yes, I see you cancer. But even though you are 1.5 inches deep into cerebral business in which you do not belong, I refuse to accept you.

Be it denial or instant acceptance, either way I’m fine with rejecting this brain tumor of a horse pill. I know that one day I will have to choke it down if the cancer wins, but for now and as long as I can, I refuse.

68 Hours of What?

im·pinge [im-pinj] verb, im·pinged
to encroach; infringe (usually followed by on  or upon  ): to impinge on another’s rights.

What impingement means to me is six weeks on the bench and physical therapy. There’s a whole mess of duct tape and dreams holding a shoulder together. In our society today, so much time is spent hunched over a keyboard that certain posturing muscles are neglected.

So, as it would be: Muscle negligence + CrossFit = Impingement.  At least in my case.

I’ve been advised to not even run because the arm swing could irritate good ol’ lefty.  At first I was happy to have the 4.5 hours back from my thrice-weekly CrossFitting.  But then I thought about it. There are 168 hours in a week. Sixty of those are spent sleeping and another 40 are spent at work.  That leaves 68 hours of unaccounted time.

On what, exactly, am I spending those 68 hours?  Perhaps the answer to why the return of those 4.5 hours is so important lies within that very question.

So, I’m going to track my time and figure it out. I can only hope that these numbers will do for me what seeing the nutritional information for red meat did for my diet [insert dry heave here.]

Hard lessons about the value of time have been learned – again – in the last year. Why the hell would I waste even a moment of those 68 hours??

40 Weeks

On Tuesday at 8:15 a.m. S embarked on the next cancer treatment plan.  If all goes accordingly, she will be in treatment for 40 weeks after which she will receive injections for the rest of her life.

S will spend the next five days in the ICU as her heart and lungs are monitored while she receives 14 infusions of high dose Interleukin-2. After ten days of rest at home, she goes back the ICU for round two.  Then, six weeks later – during which time she will have two tumors removed from soft tissue and radiation on the cancer in her bone – she starts this process all over again for rounds three and four. If she’s lucky, she will only feel like she has the flu the entire time. If she’s unlucky…nah, there’s no need to throw that out into the universe.

Deadlifts & Death

I can deadlift 120 lbs, back squat 125 lbs and overhead press 60 lbs.  I’m pretty excited about that, not because it’s a lot of weight, but because the misogynist trainer said, “You’re stronger than I thought.”  And when I made TB guess what I could max in each of those lifts, he guessed almost 50% short for the dead and the squat (he was five pounds too generous with the press.)

The stereotypically ‘cute blonde sorority girl’ often leads people to underestimate me. I don’t mind though. I’m a wolf in sheep’s clothing and that continues to play in my favor.

Yesterday also brought the PET scan results.

Is it harder to lose someone slowly or suddenly?

I’ve asked a few people that question. From their answers, I can only ascertain they both suck in different ways.

Dr. Cure It found another tumor in S’s other shoulder in addition to the one on her ribs. But worst of all, there is something lighting up on the scan in her knee.  As an avid runner, it could be (fingers crossed) as simple as the spot that lit up on her foot – a big, fat nothing.

Or it could be cancer. In her knee.  In her bones.

Since she’s been booted from the clinical trial now that it’s obvious the Ipilimumab isn’t stopping melanoma, the next course of treatment hinges on the result of her MRI on Thursday.

If it’s cancer, there’s a pill.  It’s a sixth month treatment and it’s only because she has some crazy mutation to the cancer.  But it also sounds like the last option before there’s nothing more we can do.

If it’s not cancer, she is strong enough to endure the barrage of treatments that will make her so sick she will be hospitalized during treatment.

Either way, the cancer is progressing and she’s about to get a whole lot sicker.

 

Tipping Point

The biopsy confirmed that the pea-sized lump S discovered last week is cancer.

Fuck.

WHY couldn’t it be harmless?

I want to be positive. I want to be hopeful. But this feels like the tipping point.  Today’s PET scan will reveal any other spots of cancer lurking below the surface.  Just let this be isolated…

S is “moving forward” calmly, while I’m quietly falling apart.  By no means do I want to die, but with everything in me, I wish this was happening to me instead. It’s a goddamn nightmare being the bystander. The survivor. The one left behind.

I’m so tired of realizing mortality.  Bug died when we were 26 years old. She was beautiful and caring, loving and to be married six months from then.  We haven’t forgotten the lesson learned from her death yet.  We appreciate life. We understand how precious it is. We learned to value every day.  We fucking get it, alright?

I may as well be swinging and punching and screaming and cursing in the middle of the ocean.  Though, with the energy expelled in doing so, it may be far more productive than composing the turmoil brewing in my chest.

Stop taking my people.