Metastatic Cancer: Unemployable and Unapologetic 

Metastatic Cancer: Unemployable and Unapologetic 

Working? Not really. Nothing seems to work. Not me. Not my body. Not my marriage. Desperate and jubilant, isolated and surrounded, frightened and soothed, all on the roller coaster hoping the slow climb up will take forever and not send me screaming on a steep downslope to a dead stop. After two years I feel like I am sitting in a bathtub full of ice cubes when I think about having cancer. In a way it’s easier saying it and engaging in discussions about it because conversations naturally end. My mind loses track of time when I think about things. One of the things I think about is Cancer and the role of the disease, which has taken a full time job in my body. I didn’t hire it. But this new employee of the brand of me I used to be changed and not for the better.

 
I feel like I used to be Coca-Cola then some idiots in corporate decided there needed to be a new me, so like New Coke (for those of you reading who are too young to remember it was a MASSIVE failure and still the brunt of many jokes). Like New Coke, I lost the support of my friends and relatives one after the other, yet finding love in the strangest and most unexpected people, and it’s all a mess. 
I hope for the best, demand the care I need and want, I cry sometimes all alone and sometimes I cry at night when I cannot sleep out of frustration. I cry from pain that drugs can’t touch anymore because of my fast metabolism and built up tolerance.
Sleep requirements have changed, too, although my body always fought sleep so I’ve never slept well. I couldn’t wait to get up in the morning and see what would happen – all curiosity and annoyance to my mother’s chagrin when I was a little girl. Now I can’t get to sleep – and I’ve tried everything. Guided imagery. Meditation. I have a nice aroma therapy machine next to the bed. Changing the position of the bed. Bed toppers with space age memory foam invented at NASA. Hot relaxing showers. Everything, but my mind and body aren’t cooperating. Now I’d make the worst employee being in pain and going to constant doctors appointments and being perpetually late. Thus, I had to change careers and become self employed. My husband is to thank for affording me the privilege to do so as I know many people cannot. I am eternally grateful although I’d feel better about it if his depression would let him accept my gratitude. So work doesn’t even mean the same thing it used to…and I cannot fire this new hire named Cancer punching a clock every day in my body.
“I” don’t work in so many ways. 

My body.

My career.

My punctuality.

My relationships.

My sleep.

My pain.

It’s all so broken. But in breaking things down, I grow. I will grow something beautiful from my wreckage. It’s debatable what beautiful new things will arise from my broken life. I don’t even know if I’ll be living with my husband next year. But I know I’ve survived as well as I can, unselfishly and without too many apologies necessary. I wish I could talk to some people who meant so much to me. Explain why I wasn’t myself over the past seven or eight years. Yet no one needs to explain themselves. We hope apologies will come to people from a place of humble strength. Mostly I’ve come to understand apologies connote weakness to most people.
So I give no apologies. 

“What else could I write?

I don’t have the right.

What else should I be?

All apologies.”

– Writer Kurt Cobain – All Apologies by Nirvana

The Oncological Menu at the end of the Metastatic Universe

The Oncological Menu at the end of the Metastatic Universe

It just dawned on me as I was driving home, for expertise and advice we choose those people with whom who we agree, and more importantly, who agree with our way of thinking to be around us. No matter the circumstance: hiring staff; new friends; the closer of our family members; electing the president; even professional contractors and our mechanic. As human beings our fight or flight instincts can override our critical, logical thinking as a relationship becomes more intimate over time. We might find ourselves arguing and we may even decide to no longer see a friend due to irreconcilable differences of philosophies.

Simply stated: we don’t become friends with people we don’t see eye to eye with.

So why do we remain under the care of an oncologist with whom we disagree on treatment or with whom we cannot communicate well?  This person is the primary decision maker regarding the major decisions and details of how we can fight with the dread disease. They should at the very least talk to us and answer our questions in a way we can understand. I mean, if we’re good patients we become an integral part of our oncology team, and even go so far as to help in picking the solutions that we want as we go along our journey.  Hell, they cannot do it alone – they themselves wouldn’t have jobs without us – their patients.

So how can we define our role in our own care?  Isn’t it like we got parachuted like a soldier out of a plane onto a battlefield? A good patient navigates the terrain for themselves first and foremost. They don’t wait to get told what to do and they don’t accept blindly what’s doled out to them. When a soldier hits the ground hard, they release the parachute and get a view of where they landed and do their best to follow orders but that only goes so far. They have to protect themselves by the very nature of what they’re trying to accomplish.

A good patient will bring their oncologist information they’d would not normally have acces to. If you look at a time limit or a time that is spent with a physician – any physician like an oncologist, it’s just a sliver of time…just a small snippet of someone’s overall life. There’s not a way of seeing the whole picture in their dealings with the patient and they’re certainly not there on a day-to-day basis monitoring everything that’s going on with their patients.

It’s difficult for me to understand how, with so little time spent and only tests results to go by, they can make life or death decisions. You wouldn’t let your mother buy you shoes without your input; why would you let your oncologist treat you with things like chemotherapy and radiation therapy and other therapies without your input?  If your mother buys you brown shoes and you prefer black it’s your fault for not telling her you wanted black shoes in first place. She can apologize and take the shoes back. (Although you probably believes she should know your tastes.)

Your oncologist cannot force you into subjecting yourself to chemotherapy. She can’t make you submit to radiation therapy, which like chemo, might lead to more cancer. You have choices but you cannot have a say if you don’t speak up about your preferences. He can’t order an ultrasound rather than a mammogram if you didn’t tell the hI’m that you have very dense breast tissue and it would do more harm from radiation than good from a clear picture.

I am strange case apparently. I just seem to be responding well to treatments that many others haven’t responded well under. And I told my surgical oncologist today why don’t we just pretend that I’m stage IIIB instead of the stage IV? If I were stage IIIB you know I’d be getting metastatic sometime in the near term, right?  Because I’m metastatic, I don’t get a menu of options such as lumpectomy, mastectomy, and so forth because it’s just not in the restaurants in the at the end of the stage IV universe.
There is a tumor board that meets each Friday and  discuss my case as well as many others.  Before I even met with my surgeon he knew to expect my questions, he had heard of my annoyingly legendary knowledge base, he expected me to stand up for myself and ask a lot of questions if I didn’t understand what was going on. I chose to have the lumpectomy. My surgeon knows me well enough now. And he knew if he couldn’t get clean margins in my originating tumor he would push for me to have a mastectomy. I had my lumpectomy two weeks ago.

In my follow up appointment last week he looked at me and knew the answer before he even asked the question – I would say yup let’s go ahead and cut it. He said he said well I’m going to see the oncology board Friday I’ll speak to your oncologist as well as your other doctors and we will all decide. He said the first thing I’m going to do is make you an appointment with the plastic surgeon. We don’t want me walking around with just one boob really leaning into the doubt and says what are you curled call a girl with one boob? Ilene.
But guess what? No mastectomy needed. I can stand tall and straight and sit here and tell you to speak up and ask for what you want. Find the right team to help – ones who will work on YOUR side, not only by the books. The books change all the time and sometimes because a patient asked for something different than the set in stone procedural possibilities.
And be happy this holiday season. Do not forget your nurses and your team and thank them. You’re reading this and they’re glad you’re here.

Passports

Passports

 

A lifeless traveler fully awakened,
The aircraft lands – you’re stirred and shaken.
Roots hold on again, once more,
Shackled to a cellar floor.
They wrap around the casks and mour ,
Steady and fast to thick, oaken boards.
They bow to greet the tastevin, the spoon,
The vineyard grew too thin.
Shared from a coast once untroubled,
The next years yields nearly doubled.
A life lived in the continental past,
My life of measurements in pages and ports.

Travelers sorry tales of museums and sites
But mostly tales of drunken nights.
Have they never dared to stroll the streets
Of cities new and clipped retreats?
Seen with eyes half open, pale and pink,
Or heard predawn scraping cleaners sweep.
Have you seen the lions roar,
On bridges that bring hearts to shore?
Or heard the pigeons fuss and chatter,
Flapping, fighting…nothing matters.

Have you heard the church bells strike,
Making you dumb and striking the night?
From sacred song comes morning air,
Our travels too short, hearts worse for the ware.

Should you find your body falter,
Off you go – a ferry to Gibraltar!
Take yourself to Rome in shade,
The rocky cold rush under sea to Calais.
Or take yourself to sites you know,
Fill it up for you’ll eventually show –
Your final passport to the ‘verse,
A single unit of life in a leather purse.
There won’t be use for wallets or fare,
Nor any value to passports that brought you there.

Pain and Practice

Pain and Practice

You can achieve the magic eye
Through pain and practice.
Eyes for now, opposite.
Silver shadow spreads upwards.
Lids covered platinum,
Then black and back,
Brushed, stroked far beyond what I can see.

Gala and golden eyes for night in sunshine shades,
Violets tip their hats towards the soft,
Green, winged, shark-skinned scarabs.
Egyptian eyes lined up, not waiting, shut down for now.

Sitting waiting under the light
Desert pink sundown, ancient,
Frosted in,
Late day blue,
Hues of grey.

Noting thankless hands entwined,
Through practice in vainity,
You can achieve the magic eye.

Want vs. Need – to be human is to need

Want vs. Need – to be human is to need

My hope: someone else reads this and realizes others besides themselves feel the heaviness of the life they’ve led and the weight of what the future holds and finds they’re not alone… Reads this with the comfort that if there is just one person who feels this way means others, too, share their pain. After reading this they go on through the day knowing other people who “get it.” Or perhaps the fact deepens the wellspring of hope out of your physical reach. But it’s okay for the “strong.” The ones who people depend on not those who depend on others, our shoulders broaden with time like the trunk of a tree. Ah, it’s all that, and not simple.

Sometimes fear rules over love. Living in fear brings a darkness. The kind of dark without any light at all. The darkness of the universe. Living with love in your soul brings light, and the light brings peace to your soul.

Light and love bring peace and knowledge. Knowledge of many kinds – of the self, of others, and a broader wisdom beyond temporal time – yesterday, the here and now, tomorrow. Light illuminates Spiritual knowledge. As overwhelming as it may seem, actually it’s quite peaceful. It’s knowledge of the fleeting nature of suffering. Knowledge of our short, blink of an eye length of time here we only experience a few moments to deeply interact with other human consciousnesses, with their own crosses to bear, their own fears, and shadows cast by their souls between light and darkness.  It’s therefore incumbent upon those who found peace in the light to bear a torch or at least light a candle for those who cannot find the way due to unwillingness or in this case death. Whether temporarily or because it’s been so long that they can remember what happiness is like, bringing them strength to pull themselves into the light so they can find love, is necessarily our task.

As an aside, last Friday night at sundown on the Jewish sabbath, I lit six candles – one for each of the good souls responsible for my existence and passing on the responsibility of bringing love into this world. The six candles were for my parents, both of whom I lost very recently, and my four grandparents. Leah Kaminsky nee Fox, my paternal grandmother, died in 1969 of metastatic breast cancer. She died before any of my miraculous and poisonous treatments became available for her. Who knows what my life would have been with her in this world. But one cannot speculate. The universe works always as it should.

I realized after lighting those six yertzheit candles at sundown last Friday, how my Jewish heritage celebrated life, not with food of which so many of us joke, but with light. (They fought us, we won, let’s eat.)

I learnt recently that the Jews view the flame of candles to represent the human body, mind, and spirit. Those are the three colors around the wick of a candle: the blue light closest to the wick that burns the hottest, represents the physical body that requires energy (or food – candles were made from bees wax in long past days); the white light next, representing the mind that’s fueled by the body; and the outer red flame represents the soul’s connection to the body and mind and also the light that creates brightness and connects to everything we know and the unknowable universe.

Remembering that life brings love and fear shrouds us in darkness, I looked through tears at my husband who suffers from depression. He refuses treatment. In my tears I tell him that my struggle with cancer becomes much more difficult when he cannot be with me if he refuses help. He believes it’s not authentic if he gets outside help, yet it’s now been two full years. By doing so I feel like he denies me the joy that would help to keep me alive in good health longer. It’s no secret that stress and unhealthy relationship cause illness.  By withholding treatment he’s withholding love from himself, and from me. I believe in some ways perhaps I am selfish, and that I should depend on myself for joy.

But as human beings we need others. He remarked, “I want you,” – that’s a perception of me as object. We want a car, we want a computer. We need other humans – and that is the definition of love to me. Giving of yourself of love – not only the romantic kind of love, but the love we give of ourselves even when things seem the darkest. I told him I need you – in response.

Another aside (please excuse my ADHD). About six years ago, I had $10 in my pocket, and was living through a very ugly chapter in my life that effected me to the degree of experiencing PSTD. My stepson, then nine years old, tagged along as he always did when he stayed the weekends. There sat a man outside of Whole Foods. He was suffering from bone cancer and could not afford his treatments. He wasn’t lying. You could see his eyes and his body and his shame for needing help from strangers. I gave him the last of the money I had to my name that day. My stepson asked why I gave him that money, and my answer was simply, there is always someone who has life way worse than me.

There but for the grace of god go I.

Live in love and light although today may seem so full of pain. Live knowing that you can be the light for another today when things seem so dark and hopeless to them right now. And know you’re not alone, you are amongst a world of people who will bring light today along with you. My birthday is June 21st – the longest day of the year. Was the universe giving me a big responsibility that day? I must assume if I believe in the human spirit that indeed my task is such. But it’s heavy, my shoulders hurt, and my knees are swollen from the weight. But here I stand, while others cannot even get out of bed today.

No chance at all I’d leave my love in his time of darkness. I’ll help light the hidden path until he takes it.

Fuck cancer. I’m stronger than anything that can be handed this physical self. My tenacity and my humor carry me from test to test. Some I pass, others I fail; yet my life’s biggest test is as long as I can stand here and reach out to others and say, “I need you.”

Count and be counted.

Count and be counted.

 

We MBC patients count a great deal as we pertain to medical research. Welcome the guinea pigs. Long live the lab rats.

The MBC Project – Mbcproject.org – which asks us lifers to contribute our genetic material including a slice of biopsy material. Our genetic stuff will be shared with researchers “at the Broad Institute of MIT and Harvard, in collaboration with Dana-Farber Cancer Institute, Harvard Medical School, and a growing coalition of non-profit advocacy partners,” to dive deeper into our currently incurable form of cancer.

My litmus test, well, my opinion anyway, is why not share what I can to help anyone who comes after me not to suffer at the fate of the three current and only widely available treatment modalities for MBC. You know –  chemotherapy, surgery, radiation therapy. Good lord, barbarism. Very profitable barbarism.

While I used to worry about my online security and privacy if I engaged in such tests and surveys – especially of my own physicality, my future would change that point of view in a way anyone could not have predicted.  I suppose in some ways I gave up my privacy the day of my diagnosis. No longer could I remain anonymous. No longer some generic marketer hiding behind a vague business strategy career overview on LinkedIn and my own, as well as corporate, business focused blog posts.

I became part of a community of the dying few too many with stage IV cancer.

Post diagnosis, my online life exponentially grew from occasional blog posts about marketing with a pithy, humorous voice, to a robustly public online presence with a pithy, humorous voice. My individuality showed a little more than I thought prior to attempting to turn up the volume to reach outwardly to receive help from others and  to reach inwardly to hopefully assist others in need of my experiences to help guide them through theirs.

I recall the same day of my diagnosis, after we assessed the earthquake damage, I turned to Craig and told him I’d participate in as many clinical trials as possible since it was incumbent upon me. Having tried to find some to participate in wasn’t as easy as I’d hoped, and not all were appropriate for my health. There just aren’t many clinical trials for which I fit the bill.  However, there’s a few good ways to share information to help researchers to get a better handle on who has what and what we take and how it’s working and our lives and how psychosocial factors can effect our health.

Another such was run by Dr. Susan Love and looked at the collateral damage of MBC. Bravo as usual Dr. Love. She’s not only written the Bible, “Dr. Susan Love’s Breast Book,” available on Amazon, or chances are good in your local library has multiple copies available to check out for free, or in your local new or used bookstore, too. It’s with impatience that I await the results of that study, and I’ll let you know as soon as I know when the findings are made available.

You can delve into her information rich site and also take part in the HOW – health of women – study here: https://www.drsusanloveresearch.org/how-study/my-overview

In the mean time, do some diving around. Find some place so you  can reach out for support and participate in research specific to MBC:

Metastatic Breast Cancer Network – MBCN.org

MBC Alliance  – http://www.keepmeinthepicture.com/mbc-alliance/

Advanced Breast Cancer (full o’ great resources – http://www.advancedbc.org/

And a portal to give you a roundup of all sites cancer related  http://www.mbcinfocenter.com

My Funny Port-a-cath

My Funny Port-a-cath

Today is my least favorite day of the month. It’s subcutaneous injection day  at the chemo infusion center. If you look at the photos of my face and upper chest, the big bandage is over my “port-a-cath,” which is used for my blood draw,  sometimes. Mainly this is an expensive tap into my body, which the nurses flush monthly with heparin to keep it free of clogs and of any infections. That port, which cost over $47,000, was surgically installed in the hospital in March of 2015 about 3.2 milliseconds after they suspected I had cancer. Its never been used for anything but the occasional blood draws. And not all nurses are trained to use it. You can tell me cancer isn’t a successful business model, and I will sell you a bridge that connects Brooklyn to Manhattan.

“Through a port (sometimes called by brand names such as Port-a-cath or Mediport) inserted in your chest during a short outpatient surgery. A port is a small disc made of plastic or metal about the size of a quarter that sits just under the skin. A soft thin tube called a catheter connects the port to a large vein. Your chemotherapy medicines are given through a special needle that fits right into the port. You also can have blood drawn through the port. When all your cycles of chemotherapy are done, the port is removed during another short outpatient procedure.” From breast cancer.org http://www.breastcancer.org/treatment/chemotherapy/process/how

Mostly, It Looks as though I have a plug used for charging an electric car. Just call me Nicole Tesla. It’s my personal anachronistic device or my PAD. Funny story – While getting a quick car wash a few months back, the gothic teen who was on cashier duty that day asked me if it were a new kind of under skin piercing. I told her what it was and she said, “wow cool!”  I had to laugh instead of becoming indignant. I said, well not really, and I hope you never need to have one installed but you can use me to charge your Prius. To whit she asked, “really?” And with that, I said absolutely, wished her a good evening and reminded her to get a mammogram.

So I get three types of injections today:

Faslodex – two HUGE viscous injections given in tandem by two nurses  into my upper gluteus maximii. It takes 30-40 seconds to get these suckers into my body

XGeva -subcutaneous into my abdomen

Zolodex – subcutaneous into my abdomen

Yes they hurt. A lot. But I’m a good patient and the nurses in the infusion center are angels in human form. Bless their love and compassion.