How I learned to stop arguing and love this pain

How I learned to stop arguing and love this pain

The past 10 days brought what would have been the 76th birthdays of both of my deceased parents and the first year since my mother’s death. My husband started his therapy back up but he’s not keeping with his doctors orders. My stepson who is 18 is on the precipice of failing high school and I came to find out he’s been fueling fights between my husband and I while I’m not around. He also has an upper respiratory flu and I’m recovering from a stomach virus. Yuck. Stop. Enough!

And, guess what? 

Today SUCKS. Yeah! I’m alive. But let us just cut through the bullshit here – I am not feeling well. I’m tired of having to deal with the pain and just sitting here constipated from pain reducing opiates and my mind wandering into a place I try not to let it travel. That is, how much devastation my metastatic cancer causes to my bones every day.  My second off limits discussion that I really cannot remain quiet about: desperate pleas to my husband regarding treatment options for depression – a depression that’s wrapped a cloak of negativity around our house for two years. The third and last off-limits topic revolves around an 18-year old stepson and his unrepentant lying and visible disrespect. Today’s winning bingo card:  the irritability and unkind words that blowback in my direction from my darling’s depression.  I’m drowning in a persistent rain and the hard downpours of Northern California, after a long and devastating drought, reflect my mood today as well as the sharp ups and downs my life seems to take over and over again. It’s either “sadness or euphoria,” to borrow a line from Billy Joel.

Pains and aches take my body and soul through those same sharp ups and downs from having terminal cancer. The metastasis to my bones turns me into a sleepless contortionist each night and the lasting effects of the Xeloda on my nerves gives me neuropathic pain I can only describe as hot pokers and nails rather than pins and needles. From my doctors and my own investigation of metastasis to the bones, I’ll always have a few lesions present, however, depending upon where the initial leisons were found and how much damage they’ve done, there can be a reduction in the number and/or size. Also, radiation therapy in certain areas reduces pain associated with bone mets. Frankly, I don’t believe that it’s a very good strategy to use a treatment proven to cause cancer against cancer. All kinds of cancer. I am fighting a war but I do not think it’s time to type in the code and push the button to release the nukes just yet. Tantamount to singly assured destruction.

Further, as is always the case with forced menopause in ER/PR + and post menopausal MBC patients, a bone “shoreing” therapy is given to the patient. The chemo and hormone therapies can kill the lesions but the bone damage is done, so it’s really important to pay attention to pain, even if it comes and goes because it’s a sign of weakness in structure – especially legs and hips because we put so much weight on those poor things holding our bodies above ground. Standing up from a crouched position makes me look like a 90 year old at the grocery store. People get impatient with me sometimes and I want to yell at them, but I take a calming breath and remind myself they have their own pain that I do not understand, just as they should never have to know mine.

Ingestion of vitamin D once per week and eating lots of high calcium foods like yogurt, supposedly help along with sunshine, of which ironically I can’t take too much. I haven’t gained any weight so I treat myself to ice cream when I want it. Bone mets are not the end of the road by any means but again I’m no doctor and it depends on where they were found and how far advanced the cancer. While over time bony lesions with treatment and luck can mostly go away, but they do damage while they’re laying around like the boneless chickens in The Far Side cartoons boneless chicken ranch. The osseous sticks that keep me strong and upright, are left like bomb trashed countries after a war. There isn’t a Marshall plan for clean up and repair since stage 4 people will just die anyway. The plan, if you’ve got to hang a poster on the wall, is to keep us out of pain as much as possible.

My constant research and reading on topic make me a pain in the ass patient to some doctors, but my questions have resulted many times in a change or an additional possibility. My palliative oncologist once said something interesting to me – that she hadn’t ever worked with another patient who not only knew about the disease and asked questions, but stayed ahead and apprised of new breakthroughs and oncological opinions and options.  

Now if I could just stop having to spend time making others feel better about my illness, feel less isolated and less in pain I’d be getting somewhere. But today isn’t the day. And unlikely tomorrow will be either. It’s my hope that my husband gets it together soon so I can stop thinking about how I would feel living alone. It wouldn’t be better although some days it does feel like it’s what I should do. The pain isn’t going away in my heart. But it’s not time to release the nukes on a nine year relationship, either.
I recall the end of Dr. Strangelove when Slim Pickens rides that nuke as if he’s straddling a wild bronco, cowboy hat in hand, yelling, “Woo Hoo!” as the missile gains speed towards the earth. The ants below have no idea they’re in the direct path of a mistake gone terribly awry. 

Am I on the nuke? Or am I blindly walking to the pharmacy on the ground below, unaware of what’s about to hit me? Only the present moments go by, as time stretches out of my reach again. As a little child I remember asking the adults around me, “where does nothing start and something end?” I meant what’s out of our knowable understanding and beyond the beginning and end of time. My mom contorted her face at my incessant questions. Instead of answers, I received an apple and a boot to go outside and play.

I believe, now anyway, I should finally take her advice. 

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.