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

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.