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 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 an understandable way. I mean, if we’re good patients and lead decision maker for our oncology team, and even go so far as to help in selecting solutions as we go along our journeys.  Hell – they themselves wouldn’t have jobs without us, their patients.

So how can we define our role in our own care?  Isn’t it a little 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 him 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.

Bird with a wire – Lumpectomy and a stage IV breast cancer patient

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

Where there’s a will there’s a way to get a tumor removed. After hearing one too many times,  “we don’t operate on metastatic cancer patients,” I got my way. At 9:15 a.m. on a frantic and rainy Monday after the thanksgiving holiday weekend, BMWs and a Mercedes spin like empty plates on 85, the 280, the 101. Crashes and minor accidents light up like Rudolph’s nose on GPS screens all over the Bay Area. Still not too late to change my mind. I had an appointment with a knife.

That day I felt triumphantly happy to wait in a room of nervous caregivers and their cared for loved ones with cancer. Wait to get a lumpectomy, which was  more like a mini mastectomy. Goodbye honey, I love you – see you after recovery.

We thought my surgery would take less time and tissue, however my former tumors left corrupted and genetically damaged breast lobes. So, even with clean margins for the the 4mm tumor the surgeon took away for biopsy, still more must be removed. I imagined a pit inside a peach and the radio oncologist agreed with the spirit of my metaphor.  Except the peach grew in my dark breast, rather than on a tree. Only money grows on trees when you are diagnosed with cancer.

My surgeon used a beacon 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. The onco radiologist had inserted the wire while I underwent what should prove to be my last mammogram. I don’t recall the numbing cream or the strength she used, but no matter. Now a wire extended from my right breast like a bombs fuse waiting to be lit. I waited for about another hour after the wire insertion for my surgeon, Dr. Tran.

He’s an affable person and confident doctor, who instilled in me feelings of relief rather than  feelings of fear. (The first surgeon with whom I met months prior to D-day, actually had the audacity to ask why I was there in his office since, “we don’t operate on stage IV cancer patients.” He never made the team. He’s cut immediately in the first round as the odds against the procedure becane tougher to beat.

Patient. Or 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 locked in some oncology sacred text library like the one at Aalexandria to guide medical practitioners on what can and cannot be done with all metastatic patients. “Biblical” may seem somewhat overstated, yet I assure you, somewhere in a dark room under a thick museum grade glass cover, sits a jewel encrusted tome with instructions for medical personnel only. We all might consider choosing those willing to simply listen to our strategies and our desired potential outcomes. These brave souls who I recruit for my battalion must fight along side me in battles I can win. But they as I know, these are battles as parts of a losing war. A disI can never truly conquer. They are special ops forces. Doctors who missed that part of the oncological specialty curriculum. Doctors willing to listen to patients as human beings with real blood and real pain. You know, like individuals.

When I  entered metastatic pergatory, I found that treatments come and go in the cancer high fashion set. Metastatic cancer patients become the happy bad voluntary lab rats for the next new wonder drug and various adjuvant  treatments.

I really love your peaches.
As my anesthetic wears off and I drowsily come into consciousness,I laid in recovery, my mouth dry and sticky like my brain. For some unknown reason, I began cracking bad jokes with the nurses. Nurse Sandy gets a no arms no legs at the beach joke and doesn’t find it in any way at all funny, yet the others snickered and let me in on her emotionally serious nature. Feeling like I just kicked the Easter bunny into the next state over, I attempted to balance the scale  and even the score with a self deprecating joke on myself. I quipped, “what do you call a girl with one boob? Ilene.” A pun. Not a great pun, but still.

Funny day. On the way home in the car, the Steve Miller Band song, The Joker, came on the radio. If you’re not familiar there’s a great line followed by a guitar wolf whistle that goes, “I really love your peaches wanna shake your tree.”

Well, for that day anyway,  maybe one peach would be enough to soothe my appetite for a cure.