Friday, August 19, 2016

"I have a lump, mom"

Yes, there is a high likelihood my mom is going to kill me. These past three weeks have wreaked havoc on me, on my life, on my ability to function.

At this point, it's a safe bet that my seeming difficulty with balance has all to do with the oppressive heat index. Exacerbated, I presume, only further by my nerves which are still recovering. I won't allow my mind to go anywhere else with this dizziness. It's the crash and burn effect, after the crisis. That's my MO. Jump into action and then fall down. Hard. I suspect holding it together during those crises takes a toll. Even though I feel no stress because I'm busy in action mode, I know, internally, the stress level is through the roof. That's my story and I'm sticking to it. About the dizziness thing, I mean. Because no other explanation is acceptable. Zero. Nada. None. Period. The End.

What crisis? Let's just say I remember thinking my mom had to have felt like she was walking backward into an old nightmare. I remember that was my thought in 2006 as I was in the cancer maze. These past three weeks, in addition to remembering, in high definition detail, everything I experienced with every one of my own biopsies, I felt the emotional pain. My mom's emotional pain when she asked the universe, "Is this the legacy I'm leaving to my daughters?"

Today, I'm sandwiched between my mom and my daughter. More than once, I've stated that I support research along the entire paradigm. I know I've stated that I have skin in every part of the game, which is to say I have reasons, some damn good ones, to support all research: primary prevention, prevention of metastasis and prevention of death.

About three weeks ago, my daughter asked me, in a calm, quiet voice to please come into the kitchen. When I walked in, she stated simply and matter of factly, "I have a lump." I went numb just hearing those words but I had to maintain my composure. I felt the lump and besides feeling numb at hearing the words, I was now nauseous having felt the thing.

I assured her I would schedule an appointment for her and in all likelihood, she would be getting an ultrasound. And I left it there. My first call was to the only doctor in her insurance network that has a surveillance program for young women at high risk. First available appointment? Five weeks. The lump didn't matter. Five weeks. As I was conversing with the nurse at this particular doctor's office, who was quite helpful, right up until she questioned why I was making the phone call rather than my daughter, I was very matter of fact. Emotions disengaged. That statement triggered me. Bearing in mind, I was spring loaded and the slightest movement was cause to explode, I'm proud of myself for restraining my emotions when asked such a stupid question.

I could have said things like:

  • Well, I'm pretty good at this shit because of my own experience and I'm involved in all sorts of activities related to breast cancer.
  • Or, I've done interviews about the disease and the insurance issues, I'm the best person for the job.
  • Or, because I've heard too many young women be told, "You're too young," as they were being patted on the head and assured it was nothing and thus, nothing was done to check what was going on.
  • Or, because I've likely attended far more science meetings than the person on the other end of the phone.
  • Or, because I sit on grant review panels, I oversee the grant review panel for METAvivor, and I'm working on grants with a number of different researchers.
  • Or, because Healthline just deemed this space, my blog, to be on their list of Best Breast Cancer Blogs for the fifth consecutive year so I'm guessing I have my shit together better than the average person.  Or so they think. Yes, see footer--I'm so honored and the list of blogs this year is quite impressive so I'm beyond humbled.
  • Or, "I have my reasons and frankly, they are none of your business and, I might add, that was not even an appropriate comment or question." Had she said she couldn't make the appointment because of HIPAA regulations, I would have shut right up and taken my act to HHS to do something about the levels of stupidity too many have cited as their reasons for not doing something, promptly hiding behind HIPAA.

After three days of trying to get her an appointment, I reached out to some friends..... you know who you are, my gratitude runs deeper than I can possibly convey..... and the waters were parted. Texts were flying back and forth and an appointment was scheduled so that she would be seen by the doctor, have imaging tests and, if necessary, a biopsy. All would be done all in the same visit. There were confounding issues with the office schedule and with my daughter's, too. I think my first freak out moment, after the seismic feel the lump moment, was when we realized the first mutually acceptable date was nine days away. "I'm not sure Dr. R is going to be okay with that much time before getting her in here." Over the edge and off the emotional cliff in a split second.

The doctor could not have been sweeter, kinder, more calming as she explained things that I suspected but had not broached with my daughter. I knew mammography was a possibility but couldn't be sure so I kept my mouth shut. Why should two of us be walking around in a panic, me over the lump, her over that stupid test dreaded by so many? I knew there was a high likelihood the tissue would be invaded by, at very least, a needle. Again? I didn't know for sure what would be happening. I carried that one, too. Alone.

The three of us had a discussion to assess her risk with a degree of accuracy using the circumstances unique to her. This is where each and every one of us must breathe and remember, we are not all the same and decisions should be made only after hearing what is discussed behind the sacred closed door. Choices should never hinge on the fact that someone, yes a celebrity, is hawking new technology or someone else, yes, even more celebrities, chose a particular treatment.

A plan was formulated to deal with the existing lump and to determine ongoing follow-up protocol. An ultrasound would be done by the radiologist who would take tissue samples to send to pathology. I'm pretty sure the empty contents of my stomach nearly made their way to the floor beside the chair where I was sitting. My head was spinning but I had to pay attention. The words pathology and radiology being used as diagnostic tools sent a wave of heat terror through my body and it wasn't a femara flash.

We were moved to the imaging suite behind the scenes in those secret hallways so we did not have to go into the other waiting room. In other words, we were whisked ahead of the next waiting patients, but they never saw because we bypassed the desk. Whoever that person was, I am profusely sorry you were delayed. I mean that. I know how much it sucks to sit in a waiting room and I can promise you, I am generally quite patient because I do understand, Shit Happens. Having been the shit, I will never again do the exasperated breathing thing if I have to wait longer than I think is reasonable. Never. Ever.

The sonogram was done. The radiologist didn't say much to me beyond asking me who I was. She wasn't in the loop. It was okay. I would have a more detailed discussion with the doctor when all of the imaging was completed. She wanted a mammogram. My daughter walked out of one door and into the other as I sat in that little waiting area where one normally sits in the gown. When she came out, she was pissed. The technician wasn't too nice. Granted, I want a technician that does their job and provides the absolute BEST image s/he can for the radiologist. But, when the technician responded to my daughter's expression of pain with a matter of fact, "Too bad, this is how it must be done," the anger bubbled.

Not a good moment. Hearing my daughter, who knows little of this patient-centered gig or the details of what I do say that she thought this was "supposed to be all about the patient and so much for that," sent me into mamma bear mode sprinkled with a bit of blind rage. As she went to remove the gown, I told her she should wait. Sure enough, the technician returned, announcing she needs two more images. I jumped up.

There was NO FUCKING WAY I was sending her back to that machine without making damn sure this technician understood a few things. This was her first mammogram (and hopefully last for many years - that's not part of the annual plan at a young age), there is a lump and she needed to be mindful of how she was treating MY daughter. My daughter being my daughter, minimized what happened just moments before. Telling the tech, she ranted at me after the test and trying to tell me it was okay, she walked in the room but the tech was still facing me. Quietly, I said that she needed to be gentle and quietly and somewhat authoritative, she mentioned the need for compression. "I'm not talking about being gentle with the compression, YOUR WORDS.... be gentle with your words and talk her through this."

Mission accomplished. They both exited the room with big smiles on their faces. Could be they had a laugh at my expense, but the tech made eye contact with me, quickly nodded her head and gave me a thumbs up. My daughter had nothing to say about the pain of those additional images. The thing is, I should not have had to say anything. This is a test that is dreaded by so many. The technician can make all the difference. They are the first line in this mess and by saying something to validate the pain or the discomfort and, by further acknowledging they understand it's not comfortable but just take a deep breath, hold still for me and I promise we will be done in just a few seconds. Those words are the difference between someone exiting the room with daggers in their eyes or a smile on their face. In this case, it happens to have been my daughter. She exited the room twice, once with daggers and once with a smile. I hope the tech remembers this for every other patient she sees going forward. I hope my big mouth made a difference. Each patient is different and it's up to the technician to read the face and the body language and adjust appropriately.

I recall being very cavalier when I was in the mammography room. I would remove the paper gown and stand bare chested. I'm fairly sure my daughter is far more modest and would have preferred to keep the gown on, only exposing each side as necessary. In and of itself, that's a big message for the technician. Please. Consideration and kind words should be part of the job when necessary. Yes, to all the mammogram techs, you have an important job to do and it's often one you are doing for hours on end. Remember however, each time you close that door, it's a different person standing in front of that machine and some of them are skipping through while others are crippled with fear. I am respectfully requesting this. Adjust accordingly. Not your skill at producing a stellar image, but your bedside manner.

In the end, no biopsy was necessary. The imagining is clear. She will be followed because of the strong family history. And I've been, for the most part, useless since July 31st when I heard that small voice calling me into the kitchen.

And now that the cat's completely out of the bag, I can assure you, mom: It's okay. She's okay. You're okay. I'm okay. I can assure the rest of you with a fairly high degree of certainty, I'm already on the phone with mom. I get it. The whole mom thing. On a much deeper level.

There is much work to be done. For my mom's sake, for my sake, now officially, for my daughter's sake. My sleeves are rolled up.

My two lessons?

  1. The whole research thing is now much more personal, and has propelled me into a gear I didn't even know existed.
  2. I suck at advocacy when it comes to my kid.
I never asked for copies of anything. Today, I emailed the office but really, a rookie mistake, one that I do believe I preach to everyone who asks me for any sort of guidance. I really need to pay more attention to my own advice. Except that level-headedness seems to fly out the window when emotions run high.

There is no higher level of emotion than when a mother is trying to protect their kid from walking a path they've already trodden. And yet, I can't do a damn thing to prevent a DAMN thing.

I know how you feel, mom. Yes, I really do know......

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