Bird with a wire

Bird with a wire

Poetry Foundation

I grow old … I grow old …
I shall wear the bottoms of my trousers rolled.

Shall I part my hair behind? Do I dare to eat a peach?

T.S. Eliot  The Love Song of J Alfred Prufrock

It’s 9:15 a.m., a frantic and rainy Monday after thanksgiving weekend, cars spinning like plates on 85, the 280, the 101. Crashes and minor accidents dot my GPS maps. Not too late for an appointment with a knife. Today, happy to wait in a room of nervous caregivers and their cared for loved ones with cancer, to get a lumpectomy more like a mini mastectomy.

We thought my surgery would take less time and tissue, however my former tumors left corrupted and genetically damaged breast lobes, and even with clean margins for the the 4mm tumor more must be removed. I imagine a pit inside a peach and the radio oncologist agrees with the metaphor except the peach grew in my breast. Not on trees. Like money grows on trees.

The surgeon uses a marker of sorts for navigation in the form of a very thin wire inserted into my breast using radio mammography and a good amount of numbing agent. Cannot recall the x- ocaine used, but no matter. A wire like a fuse on a bomb extends from my right breast as I await my surgeon, Dr. Tran, an affable, confident doctor who instills in me a feeling of relief rather than  fear. The first surgeon with whom I met months ago, asked why I was there in the office since, “we don’t operate on  stage IV cancer patients.” He’s not going to make the team. He’s cut immediately as the odds against the procedure become tougher to beat.

Patient. A person who waits. A woman without patience makes an awfully poor patient. However, this impatient patient won the battle against the oncological team who abided by the predetermined treatment bible for all people with metastatic disease. “Biblical” may seem somewhat overstated. I assure you, somewhere in a dark room under a thick  museum grade glass box, sits a jewel encrusted tome with instructions for medical personnel by which they must abide. I lean towards choosing those willing to simply consider my strategy for my battalion to fight along side me in battles I can win as parts of a war I can never truly conquer. They are special ops forces. Doctors who missed that part of the oncological specialty curriculum. Willing to listen and see patients as people. Individuals.

When I  entered metastatic pergatory, I found that treatments come and go in the cancer high fashion set. Metastatic cancer patients become the lab rats for the next new wunder drugs and all sorts of treatments. The anesthetic wears off as I lay in recovery, my mouth dry and sticky like my brain. For some unknown reason, I begin cracking bad jokes with the nurses. Nurse Sandy gets a no arms no legs at the beach joke and doesn’t find it funny, yet the others snicker and let me in on her emotionally serious nature. To balance things out I say what do you call a girl with one boob? Ilene.  Ha. Funny day. Steve Miller sang, “I really love your peaches wanna shake your tree.” Well, maybe one peach is enough.

 

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.

 

High Scanxiety

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Stila cosmetics doesn’t do very good homework on its pithy quotes on the cosmetic packaging.

With every rising of the sun, think of your life as just begun…

Opening a new palette of eyeshadow by Stila Cosmetics, these two lines, misquoted and attributed to anonymous, I of course look them up in a rapid fire web search. All of one second or less later, the results for Ella Wheeler Wilcox, a prolific poet who died in 1919 comes to my attention. The rest of the couplet based, wisdom filled short poem rang so true and so apropos of my day today.

Headed out for my CT scan and have the usual and very real scanxiety. We metastatic cancer patients all get it as do the cured brothers and sisters when they’ve got to go get a check to make certain the cancer hasn’t spread or returned.

Wish me luck. And thank you Ella for your wise wonderful words. Stila cosmetics – Shame on you for not doing a millisecond of research and giving the rightful citation to the pen who wrote the words in the Wonderful in Waikiki palette. Fix it.

Don’t be a Back Seat Driver

My metastatic breast cancer diagnosis in March of 2015 at age 49 did not throttle my world or change it in the ways I’ve read about in blogs and books and in other personal narratives. Instead, my MBC diagnosis changed the way I’d heretofore approached the medical community and the decision process they used to determine my own care, which was delivered to me by way of prescriptions and advice, mostly. I had little say in the matter. In fact prior to my week long hospital stay, I’d only been in the hospital once before – when my mother gave birth to me.

I’d always educated myself on the diagnoses handed to me or to my friends and family members. In fact, on five separate occasions, I disagreed with the doctor’s assessment of my husband’s health issues. After looking at my non-medical amateur diagnosis and the research behind my educated hunch, he went back to his physicians with an alternate diagnosis. One aspect of a patient to which doctors aren’t privy are their daily psychosocial, health, and other important issues that may impact their conditions – for better or worse. Partners, wives, husbands, friends, family usually do not have the opportunity to provide a more dimensional picture of the patient and therefore the physician only sees a single snapshot, including tests, of a patient’s health during the short window of a visit. Every time he re-visited or had a discussion with the doctor regarding my deep research and further assessment of his condition, my opinion was correct.

I’m no doctor. However, what the doctors didn’t have access to was the intimate knowledge of my husbands psychosocial situation, the outlying events, and the ongoing symptoms, which are impossible for them to observe. I sleep next to him. They sleep elsewhere.

Why then do we cancer patients sit back and take what’s handed down as gospel by our oncologists and other members of our cancer teams?

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Simon looks on dumbfounded at my audacity.

As stage IV patients, the end it would seem consists of drug after drug until they stop working and then the painful statement, “there nothing more we can do for you.” Au contraire! And, for god’s sake, never ever tell a tenacious 50 year old, self made woman, “we don’t do _______ on people like you.” On that occasion I’d brought up surgery as an option and that came after many readings and a new study that looked at the charts of MBC patients across decades that found without a doubt that we live longer when primary tumor surgery is performed. Surgical procedures were slowed to a halt about 20 years ago for MBC and the mortality went up significantly. While not conclusive enough and still controversial, I want to deliver this as my story to illustrate why we the patients are the best suited to be our own patient advocate.

Patients must therefore become the drivers of their Oncology Care Team. Back seat drivers don’t get anywhere, they just get annoying. I spent 27 years in marketing in high tech and have written for professional print and online content providers and have now changed careers due to my lackluster energy and bone pain from the mets. However, I love my slowed down life and good husband.