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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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Monday, August 15, 2016

NEED YOUR HELP TO DEVELOP A RESEARCH STUDY

There is a debate and the debate will continue until someone steps up and tries to provide definitive answers by way of a randomized clinical trial.

I have been discussing this study alongside many other advocates with researchers who are trying to help answer a few questions.

Simply stated, indeed somewhat oversimplified:

If a sentinel node biopsy finds 1-3 positive nodes and the tumor is tested and is shown to have a very low risk of recurrence, is it necessary to administer radiation? If a frozen section during surgery shows a couple of positive lymph nodes sent to pathology for immediate testing, is it necessary to remove all of the lymph nodes as part of that surgical procedure?

That's at the heart of the questions the researchers would like to answer. As with most treatments, decisions are made or they should be made, based upon the evidence. What are the possible side effects? Am I actually deriving a benefit by doing this or am I potentially causing unnecessary harm because it can be shown to have no benefit to radiate or to do further surgery?

It's a complicated study and it's a bit complicated to frame the questions in ways that will be relevant to patients. The thing is this: it's a fairly sure bet, many women do benefit from radiation therapy and many do not. Some need all of their lymph nodes removed, or maybe not. Perhaps removal of the lymph nodes is doing absolutely nothing to stop metastasis from occurring but we do know it is putting people at risk of lymphedema which is debilitating. To most of us, it's just a word. A possible side effect. To those living with compression sleeves, ask them to share what it's like to live with this.



That's the back story. This is where YOU come in. You are **not** participating in any study. You ARE giving feedback so the researchers can determine how to design a trial that will matter to newly diagnosed patients. They want to learn about our feelings about the whole lymph node thing to help frame a possible study.

If you have been diagnosed with invasive breast cancer, regardless of whether or not you had lymph node involvement and if you were diagnosed at Stage 1, 2 or 3, and you were diagnosed any time prior to September 15, 2015, take the survey!

This is an important question. And there isn't agreement in the medical community. Just this month, there were two oppositional viewpoints published in the JAMA Oncology. One group says NO. One group says YES.

The only way to settle this is by doing a clinical trial. There will be many steps before this can happen and we are at the very first step. The information gathering step. It is a testament to the commitment of the researchers involved that before they did anything else, they assembled a group of patients. If they did that, the least I will do is help gather the information.

Compelling information about how this would be done and why it matters must be submitted to the funding agency to see if they will even think this is worthwhile to extend the researchers an invitation to submit a full proposal. There is nothing more compelling than information that may be gleaned from the experience of real patients, not what researchers think real patients think.

So please, take the survey. This way, the researchers might analyze our thoughts to make sure the letter of intent is compelling and truly reflects the needs and concerns that are most important to those who really matter. Patients.

The link to the survey, with the address all written out in case you have to copy and paste can be found at https://redcap.mskcc.org/surveys/?s=NCAKNFFW9L. The survey will not take more than 5 minutes (maybe 10 if you type really really slowly).

This is important. I'm asking for your help. Help brainstorm via the survey. Please share the link in as many places as you can. If you are in a Facebook group, ask the admins if you can post a link. Hit twitter or whatever other social media channels you feel might be helpful.

Competition for funding is fierce and it is exceptionally difficult to be awarded grant money. As an aside, I know some will say this is not nearly as urgent as helping promote research to stop deaths from metastatic disease. I know that nothing is more urgent than death and I will (and do) work in those circles too. Please don't look upon this request as me being insensitive to those needs. I am acutely aware and working diligently to see that appropriate research is funded by working beside METAvivor for their award cycle.  My world is multi-tentacled and just like the answers we seek to take meaningful steps to begin to resolve the the many problems we call cancer are complex and tangled, so am I.

Today, it's about 5 minutes of your time.

I'd love to see just 100 people give their input. And on that note, I'm offering advance thanks!


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Tuesday, August 9, 2016

BREAST, CERVICAL, LYMPHOMA. 6 YEARS, 1 PERSON, 3 CANCERS.

I have news. Sometimes, I despise writing those words. Today, I despise writing them because there are times, like now, that life is cruel. It shoves things down our throats and some of us, seem to be overloaded.

I don't want to hear about my strong shoulders or that we are never given more than we can handle because I don't buy it. I just don't buy it.

I have shit on my plate right now that I'd really like to hurl back at the universe. But this isn't about my plate.

Many of us in the blog world, bloggers, readers, and those I love most-the readers who comment, know Karen. I'm talking about Karen Sutherland, who frequently would sign her comments at Ktc, writes beautifully and I'm sure I'm not the only one who pleaded with her to launch a blog. She likes, and it's her preference to use her incredibly gifted writing talent by reading the words of others and crafting the most eloquent and beautiful comments. Yes, every comment she leaves, on every blogpost where she comments, enriches the writing of the blogger. At least that's the way I feel and I'm guessing I'm not alone.

When Karen's beloved Hugh died unexpectedly, the community rallied around her. I "see" her on Facebook. Despite a number of rearrangements on this blog, the link to what all of YOU did for her remains in the left margin of this blog. Blogging is about community and the comments of support exemplify how we care for each other.

Karen and I have exchanged emails. Frequently for quite some time and then less frequently over time. Simple "I love you" reminders just because, and that was enough for each of us. It was a way of knowing, "It's all good," or, at the very least, it's not gotten worse.

Until the other day. Karen's email was yet another sucker punch. She wrote to let me know that she has been diagnosed with a NEW primary cancer. She prefaced the news by saying she hoped to be sharing hat she was moving forward, was in a better place in the process of grieving but instead, her email was to let me know she now has a THIRD cancer in six years.

What I know? She was diagnosed with B-cell non Hodgkin lymphoma and it was found because of a very swollen lymph node that was observed during her ongoing care for metastatic breast cancer. Currently, she has no evidence of metastatic breast disease and is also NED with the metastatic cervical cancer which decided it would present itself shortly after Hugh's death.

But she is once again in the fucking cancer holding pattern. She's awaiting a PET scan, after which she will discuss her treatment plan with her oncologist.

Sometimes, life just sucks and this is truly a sucky hand to be dealt. That it is entirely possible this third cancer is because of the treatment administered for either or both of the prior cancers is something that immediately popped into my head but I'll save that teaching moment for another time.

Right now, this is about Karen and only Karen.

I love you, my friend and I know there is a very large community that feels the same way.

All I can say in this moment is that I'm PISSED OFF. I'm a terrible Cancer Friend. I preach what we shouldn't do when someone is diagnosed and then I do those very things. You get to be pissed, sad, scared and I'm here to bear witness, to help you carry that. I'm not supposed to make this about me and my feelings. My job as your friend is to listen, to validate your feelings, to be helpful.

But damn it to hell, in this moment, I'm just too fucking pissed.


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