It's OK To Cry

Most days I'm okay.  I've gotten used to living with Stage IV metastatic breast cancer, the ups and downs, the roller coaster ride.  I've become accustomed to living while also thinking ahead to my eventual death.  Will I outlive my pit bull Butch, who is 12 years old and failing, a dog I've worked to protect from the kind of people who do bad things to pit bulls?  Will my house and belongings be easily sold, easing my nephews' burden while they are also grieving my death? These are the thoughts that sit in the back of my mind.  And while holding these thoughts at bay, I continue to book business trips and vacations, spend time with friends, clean my house, walk my dogs, all the realities of living a life.

But then there are days when I am brought solidly into my sadness, something I work to avoid.  There was the conversation the other week with my friend Jo Ann. I was telling her about Butch, how he seemed to be failing, his arthritis making his back legs splay as he attempts to go up or down the stairs.  Jo Ann commented that Butch had many years, and I expressed concern about this idea.  Jo Ann was confused. Why wouldn't I want my dog to around for years to come?  After a series of questions from her,  I finally told her that I wanted to make sure he was okay before I died, that I was afraid he would survive me and no one would be there to care for my aging pit bull and keep him away from harm.  And then I felt the sadness. The sadness that I need to worry about outliving my dogs to make sure they're okay. The fact that there's a good chance that won't happen, that I may have no choice but to put my aging pit bull down to make sure he is safe before I die.   That thought is always in the back of my mind, but I don't often air it.  But in this conversation, I stated it out loud, and I felt sad. Very, very sad.  I hate those moments.

And then there was today.  I attend Alcoholics Anonymous (AA) meetings. Typically, when someone celebrates the anniversary of their first sober day, it's a joyful occasion.  People speak of wrecked lives, they speak of getting sober, and they end with stories of their sober happiness, how life came together once the drink was gone. They speak of new marriages, children, houses, better jobs, better lives.

For me, that is not my AA story.  I got sober 9 months after helping my best friend, my mother die.  A few months after my first AA anniversary, my beloved sister died as a result of her own addiction.  And when I celebrated my second AA anniversary, I was diagnosed with Stage IV cancer.  It's been more of the same since.  I am an AA outlier.  I do not have a happy-go-lucky sober story.  I never experienced a pink cloud after giving up the drink. My life has been exceedingly difficult during the last 7 years, and getting sober 5 years ago did not change that. I did not get cash and prizes many in AA seem to experience.

So today, when a woman at my AA meeting, a woman about my age, shared her story of after-sobriety joy, beaming about her new husband, her baby to come, I dropped back into the sadness.  I will not experience any of the type of happiness she has achieved.  I will most likely not get married and I will not have children or even a chance to adopt them, something I badly wanted to have in my life. At first I berated myself for feeling sad and bitter. And then I realized, you know, it's okay to cry. This is a loss. A huge loss.

The other day I was talking to my Imerman Angel, Nancy.  I was telling her about a gentleman in my church who died suddenly of a heart attack as he was walking down the street.  While this is a very sad event, especially since he was only in his Fifties, my response was to quip, "What a lucky guy to die so suddenly."  And Nancy laughed.  We both have Stage IV breast cancer. We both have the specter of future suffering, pain and death over our heads.  I don't want to die a suffering, painful death. So a sudden, quick, no-notice-given kind of death seems very enviable to me.  Lucky guy.

I know this may sound morbid, but it is the truth of living with any terminal disease. This is a cancer of the body and soul, the cancer eating the body, the fear of future or present suffering eating the soul.  Truth be told, I laugh, I make light of it, I live day by day. But underneath I am angry and I am scared.  It is hard work for me not to look ahead and live in constant fear.

So if I come off as bitter and sad at times, please forgive me.  Because I am.  As a doctor once replied when I expressed the fear that I'd earned cancer by something I did, "Oh, goodness, no. Shit happens."  While it certainly is true that shit happens, that I did nothing to earn this spate of horrible bad luck, that does not mean it doesn't suck.  So if you don't mind, I'm going to go sit in a quiet room and I'm going to cry for a while. If you were in my shoes, I know you would.  And that's okay.

Also published on CureToday

A Beautiful Life of Cancer Denial

I have never been a fan of denial. My family is full of addiction. My mother died of the damage done to her body by food addiction. My sister died because of her active food addiction. The list of hurt goes on.

I have seen people I love partake in self-harming behaviors over and over again, denying the hurt they were inflecting upon themselves. Watching the ones I love destroy themselves has ripped open my heart.  So I am simply not a fan of pretending that the obvious is not happening.

That is until I was diagnosed with stage 4 metastatic breast cancer. Now I can see the value of acting as if something isn't real. When I was first diagnosed, I lived in fairly constant terror. Yet at the same time, I dug my feet in and pursued any treatment I could find. I wanted to live.  I researched options, I gritted my teeth through the treatment, I walked through a life muddied by chemo and its nasty side effects. My life became defined by cancer and chemo.

But after living immersed in cancer for long enough, I became totally and utterly exhausted.  Living in terror and treatment is a very draining way to live.  After a while, in my exhaustion, I told myself, and others, that I no longer cared if the cancer was there, I began to ignore it. But that's not true. I do care.  At this point, though, I don't have the energy to get worked up by little signs of returned cancer and impending scans. I'm not saying that I'm not afraid. I am. I just no longer have the energy for constant, engulfing fear.

Over a week ago, I had yet another set of scans. Leading up to scan day, in my new, I don't care ways, I was not filled with the usual anxiety. The Wednesday after the scans, I called the doctor's office, and was told the images had been released to my oncologist by radiology. I asked if the oncologist could call me with the results. I waited for several days for that call, and over a week later, had still not heard. Truthfully, at that point, I no longer even wanted to receive the results phone call. I didn't want to hear bad news, I'd rather believe all was well. I decided to live in blissful ignorance.

Denial. In some cases, it does do a body good. I was living an everyday life, ignoring the cancer.  I was thinking of simple things like "What's for dinner?" rather than "Oh, God, I hope that new ache isn't cancer." It was a relief. It was like being a regular person again, unaware of what the end holds in store. So, I decided not to call my oncologist to remind her to call me. Denial. I was damn happy to partake in it.

Monday night, over a week after the scans, I finally received an email from my oncologist. She reported the tumor on the liver had decreased in size, and that the spot on my rib was stable.

And you know what I felt?  I felt grateful, yet angry. I was angry that it took my oncologist over a week to give me the results of my scans, and  angry that I even need to have these cancer scans. Angry that I've been going through this experience of plodding through chemo, death and fear.

But I am also grateful. Grateful that the cancer is getting smaller rather than growing. Grateful that I don't have to switch to a systemic, side-effects-filled chemo from my relatively easy-to-take targeted therapy (Kadcyla). And I am grateful that for six more months I can continue to ignore the cancer, pretend it isn't there, live my beautiful new life of denial.  It is my cancer vacation, and I am determined to do everything I can to enjoy it.  Somebody hand me a piñ colada, and don't block my sun.

Also published on CureToday

We Are The 30%

I was watching a breast cancer survivor video the other day, one of those videos that makes breast cancer sound like a positive experience, something that forms you into a better person. And I thought about the videos I'd seen of women with metastatic breast cancer, how those videos have such a different tone. The woman in those videos often looks resigned, far from triumphant, and is often portrayed as just getting by, eeking out what little existence she can, until she finally dies.

Breast cancer survivors are typically portrayed as warriors, as women who have won, and can now go on with the rest of their lives. Articles are written for these women about how to date after surgery, how to conceive children after chemo, how to reintegrate into the work world. Articles written for the metastatic breast cancer audience, in contrast, primarily speak to pain management, disability, approaches in organizing your affairs in preparation for leaving this world. Conferences for the metastatic breast cancer crowd often even have an end-of-life track.

All I have to say is I am sick to death (pun intended) of the end-of-life approach to metastatic breast cancer people.

I fully realize the odds are good that metastatic breast cancer will take me out of this world earlier then I had anticipated. Recently, on the news, the broadcasters were chatting about a website which allows you to upload a photo, and based on the wrinkles and structure of your face, creates an image of what you would look like at a much older age. Based on that photo, the software also guesses how long you will live. At first I was tempted to upload a photo to see what I would look like as an older woman. But then I thought, why not upload a photo to find out how long I would have lived if not diagnosed with stage 4 breast cancer.

These are the odd sort of games we terminally ill play with ourselves. Uploading a photo and seeing how long I would have lived likely would have only pissed me off. I know, based on my family history, I was likely to be kicking far into my 80s or even my 90s. My family has good genes. So how I ended up here, I do not know. Cancer simply does not run in my family.

So back to the video. Yes, I know all about that death stuff. I know how capricious cancer is.  I know I am a walking time bomb of "so when will she decline and die?" But that does not mean I sit around considering my decrepit future, obsessing about not-yet pain, or constantly planning my end of life.

Instead, I focus on living.

The truth is that 30 percent of women diagnosed with early stage breast cancer will eventually go on to become stage 4. This may happen within one year of the initial diagnosis, or it may happen twenty years after the initial diagnosis. With breast cancer there is no safe zone. It can come back at any time. In my case, in spite of having regular mammograms, I was immediately diagnosed with Stage 4 breast cancer. I became an instant member of an elite group, the 30%. Lucky me. Or unlucky me.

The trend in support resources for breast cancer shine the brightest light on the earlier stages of breast cancer, treating these patients as the lucky ones, the ones who will move on with life, the ones who have won.  And in the same way, the research dollars in breast cancer are mostly focused on this earlier stage crowd.  Even though 30 percent of all breast cancer patients will eventually become metastatic, only 2 percent of research dollars go to research for metastatic breast cancer.  With breast cancer, prevention is simply not the key. Metastatic breast cancer can strike an already treated woman or man at any point. Because of this fact, prevention of metastasis and cure are the true keys.

In spite of being part of an unlucky club, myself and all my metastatic sisters and brothers continue to live our lives, with just a few adjustments We dance, twirl, hug, love, date, garden, hold babies, and many of us even work. You may not realize that you know someone who is in the 30 percent, we often look healthy and vibrant. But we are all around you.  And with advances in cancer treatment, we are thankfully living longer. We are the 30 percent. And we are still alive.

Women and men with stage 4 breast cancer most often do not lay down in resignation and hopelessness.  At first it is devastating news, but with time and treatment, most of us learn how to live life in spite of the side effects, the treatments, the setbacks.  So maybe it's time the breast cancer world treats the 30 percent with the same respect as the earlier-stage gang.  Make a video of one of the 30 percent, showing her in a bright, life-is-to-be lived light. Bring in the glamour makeup artist, blow out that beautiful hair, wig or scarf.  Hand that woman a baby. Film her walking in a field of daffodils.  Talk about how, in spite of such horrible luck, she is still determined to live her life, love her people, take fabulous vacations, walk the dogs and stroll the babies along the sunny park paths.

I am tired of all this talk of end of life, tired of being overlooked by research and support dollars. As long as my feet can move it along this happy road of destiny, I'm gonna hop and skip my way. And, don't you worry. If you even try to utter the words "end of life" to me or try to deny me my research dollars, those feet will walk right over to you, and I will thwack you in the head. And then I will go back to the business of living.

If you would like to support research in metastatic breast cancer, please donate to www.metavivor.org.  100 Percent of dollars donated to METAvivor fund life-saving research.

Also published on CureToday

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.