The Cancer-Life Balance Or To Wear Cute Shoes Or Not Wear Cute Shoes

It has been established that I love shoes, especially cute shoes. So it was cute shoes that were my down fall today.  This morning, I put on my fashionable shoes, and walked sassily towards work.  And when I say sassily, I mean I was working it, headphones on, fun socks showing, open sweater blowing in the wind behind me, as I sped down the rain-slicked sidewalk.  But then I met the handicap ramp at the curb. Apparently, the tread on the handicap ramp was too much for my cutely dressed feet. Down I went, hands out, knees hitting pavement, ego falling flat. Yes, folks, the days of cute shoes for me just might be over.  And that makes me angry. Real angry.

It makes me angry because I am so tired of this whole cancer thing. I am tired of giving things up. I am tired of cancer.I am tired of treatments. I am tired of doctors. I am tired of the cancerous interruptions to my life.  I am tired of living with the fear of possible pain and too-soon death.

So I struggle to live my life in spite of the cancer and manage what I call the cancer-life balance. Do I give up the cute shoes or do I just make sure there's a wall or other possible support nearby every time I wear those shoes?

Do I go to the gym and power through the fatigue or do I take the nap my chemo tired body is begging for?

Do I meet the air conditioner repair man or do I go in for that blood test my doctor seems to think is so dang important she wants me to come in during the only time the A/C guy can schedule me?

It's a balance, at some points literally. I have no choice but to respect the cancer, but at the same time I want to live my gee golly willikers life.

So, when I make those cancer-life balance decisions, I base them on whether the choice will kill me or not.

And my bar for making those decisions is pretty darn high.

The other night, someone noted my MedicAlert bracelet and asked why I wore it.  Not wanting to go into the whole metastatic breast cancer story, I replied simply, "I'm on a blood thinner."

"Why are you on a blood thinner?" he probed.

"I have a blood clot," I replied.  The surprise and concern on his face was instant, and he expressed the gravity of the situation.

"That's serious," he said.  What he didn't know was that to me a blood clot was merely a blip in my medical nightmare.  The night my oncologist told me of the clot found during a regular scan, my first thought was that maybe the clot would kill me instead of the cancer.  I was not concerned about the clot. I was far more afraid of the cancer.  After that call, I strolled to the subway, and admitted myself to the ER for an ultrasound. The blood clot never scared me.  It still doesn't scare me.

So there is my bar for will it kill me or not.  I have Stage IV cancer, damnit. Ain't much else worse than that.  And with that criteria in mind I ask the questions of cancer-life balance.

The blood test measuring my likely chemo-induced lowered platelets and elevated liver readings?  Will waiting two days so that I can keep that appointment with the repair man kill me?  Very unlikely. I might be a bit nauseous, a bit tired, but it won't kill me. But not getting the air conditioning fixed, and having to sleep through hotter than hell weather might. The blood test waits.

The cute shoes?  Will they kill me if I wear them?  Maybe, if I trip and fall on to the subway tracks, and an oncoming train hits me. Huh. Being hit by a train might be worse than cancer. And broken bones are never fun.  Time for a compromise. Keep cute shoes at work and wear the practical shoes for the walk to work.

Go to the gym? This one has some regular-life resistance mixed in.  Even on a good day, I am very willing to skip exercise for a nap.  But in the name of maintaining my mobility and flexibility in the midst of all the chemicals aimed at my body, I do need to exercise.  The compromise? If I am not too fatigued, I will go to the gym. And once in awhile, I skip the gym, and instead eat a donut, just like a regular person.

Stop my blood thinner for a few days so I can get a tattoo that will cover my mastectomy scar? How likely is it that part of the clot will break off and cause a stroke during that two-day period?   Not likely. And, frankly, if it does, we've already gone over the idea that a blood clot may lead to a less painful death than the cancer. Plus, the 1-inch wide scar on my breast is a significant notch in my belt of depression. Decision? Stop the blood thinner temporarily and get the tattoo (it is gorgeous, by the way, and looking in the mirror is no longer quite as sad).

Is this fun? No. It is not fun at all. But it's not like I have a choice. So here I am, making the cancer-life balance choices, because, damnit, I want to keep living my life.  Cancer, blood clot, doctors be damned  So if you need me, I'll be living with my latest cancer-life balance choice. I'll be in my office, foot elevated, ankle wrapped in ice, and I'll be wearing my very cute shoes.

Also published on CureToday

I Am The Patient, I Need to Be Heard (or "You're Fired")

A fiesty 15-year old has posted a video on YouTube expressing her frustration during her multi-day stay at a hospital, unable to sleep due to repeated visits by multiple doctors, and being ignored by those doctors as they discussed her case with her parents.  In the week it was first posted, 
I am the patient, I need to be heard, was viewed almost 30,000 times.  Her video received such attention that it has inspired blogs (like mine), an article in Forbes, and multiple shares across multiple multimedia platforms.

 

Ms. Gleason has spoken for every patient every where.

"I am the patient, I need to be heard,"is the mantra, battle cry, prayer of anyone who has been forced to enter a doctor's office or hospital over and over again. Listen to me. I am right here. This is my life. My body. My future. I get to decide what you do to me, put into me, perform on me, especially if it will lead to a substantially decreased quality of life. I am not here to bulk up your survival statistics, you taking credit for keeping patients alive just to keep patients alive. I come to you because I want to live, and I want to live well. I deserve to be heard when I tell you that the chemo numbs my hands and feet so severely that I cannot walk. I deserve to be listened to when I say the steroids push me into a mania that impedes my life. And I deserve modified treatments based on my very real concerns.

Do you get the idea that I've been feeling this frustration too? I have. From the oncologist who would not sign off on a double mastectomy because the cancer had already spread and, really, the breasts (and their continued ability to grow more cancer) were not her primary concern. To the nurse practitioner in that oncology practice who blithely repeats the symptoms of cancer metastases, continuously reminding me of my impending death, so that I am encouraged to obsess on even the smallest headache as yet another proof of cancer gone even more bad. And to that same nurse oncologist who dismissively told me to go ahead and take that glutamine while on blood thinners, not researching glutamine's blood-thinning properties. The resultant bloody noses were only a sidelight of my already cancer-riddled fears, and her unwillingness to work with me in finding appropriate neuropathy-reducing supplements only added frustation to me already-heightened fears.

Thankfully, my oncologist finally did listen to me regarding my concerns about a mastectomy, and I had the procedure two years ago.  She understood that my continuing fear of a different primary cancer in my breast trumped the current practice of stage 4, no surgery. My mental health was important to her in my fight for health, and I respect her acknowledging that.

But to the medical practitioners who don't listen to my needs, who treat me as just another case or dismiss me as a simple note in a patient intake file, I have a new phrase for you. "You're fired."

Yeah. That's right. That’s you, nurse practitioner, whom I have lovingly nicknamed Hitler in Heels for her penchant of rigidly following the rules, no matter how much my case may demand a flexible approach. I'm talking about that time I came to you with steroid-induced acne literally covering my entire forehead, and you insisted I see a dermatologist, scheduling  me two weeks out for that appointment, when the simple solution was a prescription of anti-acne cream--props to my Internist for calling that prescription in to the pharmacy instead. I don't need to fight with you to get the kind of care I deserve and need. I don't need to be pushed into yet another medical appointment when I am already exhausted by extensive chemo, and you could easily have written the prescription instead. I don't need to be constantly reminded of the ways I could die. I've looked the symptoms of brain metastases up.  We went over the sypmtoms already. I know the gig.

So Hitler in Heels, you are fired. Done. Kaput.  I will find another medical professional who will listen to me, respect my concerns, approach me with flexibility, and pay attention to my desire to live comfortably, rather than just to live.  You. Are. Fired. Got it?

Because, as feisty Ms. Morgan Gleason, said it "I am the patient, I need to be heard." And, frankly, I am the one signing your paycheck. My body pays your bills. So beat it, woman. Take your pink slip, and walk out the door.

And to every medical practitioner out there, listen up. Because your patients are talking. And we need to be heard.

Also published on CureToday

Prisoners

Cancer patients talk about the darnedst things. Today's discussion was about feeling like a prisoner of cancer. I had never thought of it that way, but as soon as my fellow metastatic breast cancer compadre said it, I thought, that's so true. We are prisoners of cancer.  And not the nice kind of prisoners.  We're not in a pleasant sitcom, residing in Stalag 13, goodies hidden in a tunnel, fun jokes among friends, a clueless Colonel Klink wandering in here and there for the punch line.  Metastatic cancer patients are prisoners in a more orange jump suit kind of way. We are told when and where to show up, poked and prodded, given little to no choice on treatments and options. The doctors are our wardens, the nurses the guards.  And because talented oncologists can be hard to find, we pray that the warden and the guards are kind. Because in the end, we all want to live, and it is surprising what people will put up with in the hopes of commuting that life sentence.

I don't mean to be depressing, I'm just telling it like it is.  For the most part, myself and my fellow metastatic cancer friends try to ignore prison walls, do what we can to run freely in the fields, and try our best to deal with those moments where the cell doors come slamming down.  On those bad days, when one of us is lying yet again on an exam table, a tube being snaked into places tubes should never be snaked, we do our best to see the humor, the patience, the good side of the situation.  "These people are here to help me," I tell myself.  "Find the joke, and try to laugh about this," I murmur inside my head.  But secretly, I am resentful. I do not want to be here. If I never saw my oncologist or a bone scan technician again, that would be my happiest day.  I'd even bring flowers to my last visit to thank them.  And then I'd never speak to them again.

I want a life where I can maybe see a doctor about that pesky twinge, it doesn't hurt that bad, really.  I want to drift off to sleep at night, knowing that I'll wake up a little old-age achy, but happy knowing I'll just be going about a regular day. I want to sock money away for retirement thinking I might actually use it, rather than planning on how best to hand it down to my loved ones. I want to be able to imagine going on a date again without having to fathom how I should explain the cancer in my life.  I want to live a life in ignorance of my own death.

When I was receiving my first treatment of Kadcyla when the cancer recently came back, I told the nurses that if I die of cancer, my final words will be, "I am so fucking pissed."   I then turned to my lovely friend Lisa, who had accompanied me, and asked her to record those very words as they came out of my dying mouth. Her reply was to reassure me she would not only record them, but would embroider them on a shirt for me to wear in my coffin. I love friends like Lisa.  Since then, I've instructed my nephew that if I do die of cancer, I want a placard saying "I am so fucking pissed" to be placed next to my urn, and that funeral attendees should be given name tags saying, "We're so fucking pissed too."  I went on to tell him that if I die of anything else besides cancer, anything, the placard should say, "I am so relieved."  And that is my goal, to die of anything besides cancer.

As my oncologist remarked, when I told her this, "You should aim for more positive goals."  But frankly, when you're a prisoner of cancer, life's goals become far simpler yet harder to attain. Live long enough to see my nephew get married. Go on that trip to Iceland.  Any goal, while living with metastatic cancer, can be instantly wiped away by an unannounced flare of the disease or a side effect.

So all I gotta say, if I'm going to live in prison, I get to choose the goals I hope to attain.  I don't give a damn what my oncologist, or anyone else thinks of those goals.  When you're living in prison, sometimes it's best to dig a tunnel and store the goodies down below. And make sure you pull a good one over Colonel Klink as often as you can.  Because, as I told my nephew, when he asked why I had purchased the latest version of the Barnes & Noble Nook, "I have cancer, damnit, and I can do anything I fucking well please."  Now hand me my orange jump suit. I've got a tunnel to dig.

When

A few posts ago, I wrote about concentrating on the idea of if the cancer comes back, not when. All I got to say is when is now.

I received the official word the night before Thanksgiving that my most recent PET scan showed a slight enhancement on my liver and that there was a new spot on my rib.  My oncologist calls it an early progression, and is starting me on the chemo Kadcyla next Friday. Kadcyla is a combination of chemo and Herceptin, and delivers the chemo directly to the cancer cells. It is supposed to be much more gentle. I get to keep my hair.

Frankly, keeping my hair is no consolation. I'd rather keep my life. But here we go again. I was hoping and praying the Herceptin and my body would keep the cancer at bay for years. My oncologist tells me I exceeded her expectations for how long I would stay stable. Seriously? She expected me to start dying sooner? What the. . .? That thought ain't no consolation either.

Happy Thanksgiving to me.

Honestly? I've been crying consistently since hearing the news. Today I lost it, pulled over after getting lost, throwing any free item I could reach around the inside of my car in a fit of rage. I am angry. I am sad. I am scared. And I am angry.

This is not fair. I know people who are total assholes who have had metastatic cancer and now seem to be cancer free. And this idea of "just keep fighting?" Screw that. I am sick of fighting. I just want to live my life. I am tired of living with the Damocles sword of death, resulting in the re scheduling of anything in my life that might mean anything to me. As a trucker might say,  fuck this shit.

Tattoos not advisable while on chemo? I'm getting one any way.  Vacations a risky idea? I'm going. Big purchases not recommended. I'm buying.  Life can do what it wants with me, but I'm gonna live.

All I have to say is when, when, when. Fuck that shit. I'm going to live now.

Cancer Should Never Be a Usual Experience

The other day I found myself using the word "usually" in the same sentence as "cancer".  I was asking a friend if she would meet me for lunch after my every 6-month scheduled CT and bone scans, and, was telling her that usually the technician injects me with the radioactive substance, has me drink the barium, and then sends me off for the CT.  I said those words without thinking. But after a few minutes, it hit me.  I have a "usually" when it comes to cancer?  How could anything ever be usual about cancer?  Am I nuts?  Two years ago, there was nothing usual in my mind about cancer except that the people I knew who got cancer, usually died of cancer.

So when I was diagnosed with cancer, especially Stage IV metastatic breast cancer, I immediately thought I was going to follow the usual pattern and die.  I didn't. Instead, I lived. And almost two years later, I was telling a friend about my cancer "usual." After this long, I have a pattern, a routine.  I am still surprised to hear myself be so blasé, so usual about cancer.

But let's be honest. What I have is luck. For too many people with cancer, their usual is short-lived and painful. As I heard an oncologist say shortly after I was diagnosed, how someone fares with cancer is entirely dependent upon the biology of the tumor and the biology of the person who has that tumor. Cancer is like a virus. It learns the treatments, learns the body's biology, and it outsmarts the system. I have lucky biology.  I have a relatively easy usual.  And I am grateful.

But I am not naive. I know this lucky ride can end at any time.  The cancer could easily learn my biology, and take my life away bit by tiny bit. I've learned to live with the fear.  When fear drifts through my mind, I've learned to push it away, and think, "Well, best get on with what I'm doing, because who knows if I'll be able to do this much longer."  It might sound weird, but thinking this way makes it easier for me. And in an odd way, thinking this way makes me grateful.  I'm grateful that right now I can drive, walk, attend a party, see a play. I'm not trying to be melodramatic. It is the truth.  I've seen too many people unable to do even the simplest of things as they suffer through unending cancer treatment and progression.

So Lisa and I will be eating lunch this Friday at my usual post-scan restaurant, as I wait for my usual once a month Herceptin infusion, after which I'll head home for my usual post-scan nap.   And I will be grateful for my friend's company and care, and for the tasty post-scan meal. Luck is my cancer usual, and I'm going to keep on knocking on wood that the luck ride continues.  I live in the world of cancer, and it's an unbelievably unusual world in which to live.

If, Not When

I'm going to knock on wood before I post this (really).  That's what I do. I knock on wood.  I comment that I don't believe in God, but I do believe in knocking on wood. By that I mean that I do not believe God does stuff to us, gives us cancer or takes it away.  I wasn't given this. I got this.  But for some reason, knocking on wood just makes me feel better.

I do want to talk about the concept of "If, not when."  So I'm going to knock on some wood before I type this to keep the evil eye of cancer away.  Wouldn't it suck for me to say that I'm doing well, and then the cancer came back?  Knocking on wood here.

So back to if, not when.  When I visit my oncologist, her patter includes the concept of "when the treatment stops working."  Now I understand that her experience has been that her metastatic breast cancer patients' cancer eventually learns the treatment and then the cancer progresses. But it wasn't until recently that I realized how her constant talk of "when" was affecting me. It was bumming me out.

The Land of When has me thinking ahead to the day when the cancer will progress, how that will result in my disability, my job loss, my eventual pain-filled death.  In the Land of When, I am afraid to make plans, I wake up in the middle-of-the-night in a panic, and I watch and wait in fear.  And I am tired of living in the Land of When.

Sadly, I don't think doctors realize how much what they say affects a patient.  People literally live and die on a doctor's word, demeanor, approach.  My oncologist certainly does not mean to harm. Instead, I think she is trying to help.  I often joke that she is like the parent who doesn't want her child to be disappointed. "Honey," she says in the mode of an overprotective parent,"I know you really like that boy. But he might not like you, so don't get your hopes up."

But my question is what is wrong with getting my hopes up? What is wrong with expecting the unexpected?  What if I'm that very rare patient whose cancer doesn't progress?  What if 10 years from now, I am still taking Herceptin and the cancer has remained in check? (Knock on wood.)  And what if I live those 10 years in constant fear and panic?

That would suck.

I don't want live in the Land of When.  That's like living in Purgatory, and I hear from the Catholics that that's not a pleasant place.  I want to live in the Land of If instead. A land where the question is, if the cancer progresses?  If I am disabled? If.

That's the land that most people live in. Most people don't go through the day thinking, I will be disabled, I will be in pain, I will suffer.   What can it hurt for me to live in the Land of If too? I might be disappointed if the cancer progresses?

I'd rather experience disappointment if the cancer progresses, than to experience  that disappointment every day of my life.  Even if I only live 30 more days, living in the Land of If sounds much more pleasant than living in fear.

So screw the Land of When. Screw the Land of Fear. Screw the Land of Pain. I refuse to live there any more.  I'm moving over to the Land of If.  Packing the truck and knocking on wood right now. If. If. If. If.

Damnit. If.  I'm moved.

Now to tell my overprotective oncologist.

Also published on CureToday

Job's Friends

I've always disliked the Book of Job. The idea of God laying a bet with Satan to test the strength of Job's faith by hurting him and taking everything away that he loves is a disturbing idea, to say the least.

But there is one important message I heard in reading the story, and that is the reaction of Job's friends.  Job's life is being whittled away bit by bit.  He has lost his crops, his livestock, his family.  He is truly aggrieved.  Job's friends live a distance from him, but they come together and decide to go to Job in order to help him mourn.  For the first seven days, they merely sit with him, quietly.  They do not say a word.  They support him, let him have his sadness, be there with him in his time of trial.

But finally they speak. And what they say to him is that it is his fault, he has sinned.  He deserved what he got.  And then they give him advice.  And they do not stop giving him advice. For pages and pages they give him advice.  And even when Job tells his friends that they are "miserable comforters," they still will not shut up.

Want to know my favorite part of the Book of Job?  After pages and pages and pages of advice giving, God finally speaks from a whirlwind, and  basically says to Job's friends, "Who are you to talk?"  And then he tells them to shut up.  Best moment ever.

What impressed me in the story was the seven days his friends sat with Job and comforted him.  I know I've been guilty of wanting to fix things for a friend, giving advice instead of comfort. But really, the most valuable thing a friend can provide is quiet and steady support.

And that's what I've learned to value.  My friend Lisa who offers to come over and keep me company. My friends Deborah and Carole who would drop off delicious food on my porch. My friends Emmy, Jo Ann, and Sheila who came with me to doctor appointments.  My friend Ann who would send books and little surprises through the mail. My Aunt Carole and Uncle Mike who came with me to chemo and took care of me after my surgery. My nephews Josh and Ben and my sister Meg who came to DC several times to help me maintain my house and just keep me company.  My cousins Diana and Bob who drove down from Pennsylvania, in spite of troubles of their own, to tend my garden and fix a few things. And many, many more people who did  many, many more things.

These are the actions that matter. This is a friend.

As Henri J.M. Nouwen so aptly stated, “When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares."

The lesson of the Book of Job?  Mourn with a friend, sit with a friend, and shut the heck up.  That's a lesson I sure need to remember.  I'll shut up now. I'll be here for you when you need me.