How to be an Ally

When I met my now husband, Elliot, in 2006, I’d never dated anyone who wasn’t as lily-white as me.  In fact, the area where I went to high school in Ohio was so homogeneous, that going to UCF (That’s the University of Central Florida for those of you not familiar with the Knights) for college was a HUGE adjustment in so many ways, but especially because of the diversity.  Meeting someone new, whether a romantic or other relationship, and learning to adjust to their idiosyncrasies is complicated enough, but throw in different skin tone and cultures and that can get messy super fast.

I’m not going to suggest that Elliot and I have it figured out or we (really, I) haven’t made mistakes over the years; however, after nearly 11 years of marriage (as of 2019 when I’m writing this) and knowing each other even longer, we’ve found a stable normal, mostly.  Elliot still reminds me at times when my white privilege is peeking through and parenting has been more complicated since not only are our boys a different gender than I, they also are experiencing some different things since they are much browner than I am as well.

What I have learned, as the white wife of a mixed and dark skinned Jamaican husband and the mother of two mixed race boys, is that I can say things they can’t say.  Elliot can say things I can’t say.  We’ve learned to be strategic and we’ve learned to play off each other’s strengths.  For instance, I’m pretty much a bull in a china shop at times, especially when something has happened with my kiddos; the gloves come off and I’m talking about lawsuits and asking for insurance documentation.  Elliot is super diplomatic and has the advantage of being able to interact with people he doesn’t particularly like without them knowing his true feelings.  If I don’t care for someone, they know it, the whole world knows it.  I honestly never learned to control my face.  And now I have no filter.  At all.

So, what’s the point of this?

I’ve learned a little bit about how to be an ally.

I’ve learned that there are times that I need to keep my mouth shut.

I’ve learned that I have to stand up for my kiddos in a different way.

I’ve learned that there are times I HAVE to speak up.

I’ve learned that if someone is behaving in a racist way, then I’m the one who has to call a spade a spade.

Why?  Because I’m white.  And white privilege is a real thing.  It sucks, but its real.

The thing with white privilege is that we white people don’t know and can’t really imagine the experiences of someone who is not white. Elliot explains things to me regularly and sometimes I’m completely flabbergasted, it’s 2019!!  I’ve certainly been discriminated against based on gender and treated differently than men, especially in the legal profession.  That is a good analogous experience, but it’s also not completely transferable.

What I am is loyal.  When I see my husband or, God forbid, my boys being treated differently in a negative way, that hurts my heart and bruises my soul.  Hell hath no fury like a lawyer whose loved ones have been discriminated against.  Seriously.  You mess with my people, you got issues com’n your way and I’m pretty good at using the legal system when I need to.

To me, when you love someone, then their hurt is your hurt.  I’ve not heard of a good metaphor for what animal one becomes if a spouse is attacked, but I have no problem bringing out the mama bear persona when my kiddos are attacked.  I’ll have to think of what animal it would be when my husband is treated badly–he can take care of himself and does so admirably; however, he knows I have his back and he has mine.  Sometimes that means backing down and withdrawing, sometimes that means a confrontation. I’m sure none of you can figure out which one is my preference.

I share all of this to set up what I really want to talk about.  I share all of this to explain how I’ve lived a large part of my adult life learning how to be an ally to someone whose experiences are diametrically different than mine.  I’ve also worked in the legal field advocating for foster children for nearly 20 years and most of those clients were minorities and many of those kiddos were on the spectrum. It’s been a long road and I certainly don’t have everything figured out, but I’ve picked up a few things.

While race is not the perfect analogy, there is a similar divide in the breast cancer community between those with early stage breast cancer and those of us in the terminal “club” with Stage IV metastatic breast cancer.  When I wrote a blog in late 2018 about that divide and my actual real life experiences of literal discrimination, that struck a chord with so many (it’s actually been accessed over 7000 times from 20 different countries!!) and now I can share my own blog post when I see it happening.  It’s a nice shorthand rather than having to explain it all again.

The point of all of this is this … if you want to be an ally to any community, you don’t get to dictate the terms of how that works or what that looks like. Being an ally does not mean that you tell someone else how you will be supporting them.  You ask or otherwise figure out what the community you are trying to support actually needs/wants. Being an ally also does not mean that you place your experiences on the same level as another person’s unless it actually is on the same level.

I know this from my own experiences, I tried to tell my husband early on how things should work, how we should work together, how I would “help” as an ally. He’s much more polite than I am and I realize he was so very kind to me in my earliest efforts.  I know he knew that my angst over how he was treated came from a good place and he’s such a kind man that he tolerates my craziness.  I get the side eye from him a lot and I’m better at reading him wanting me to back off, but I still go off on my own soap box probably too often.  I’m lucky and blessed and all of those good adverbs to describe Elliot’s place in my life.

I’ve not been as kind to people who have attempted to tell me how they would be my ally on their own terms.  I’ve not been as kind to the woman who tried to tell me that she had the cure for my scanxiety because she had cured hers when dealing with endometriosis.  I don’t do subtlety well.  Frankly, I have no use for vision boards or cognitive behavioral therapy or any other method that teaches someone to overlook reality and pretend everything is different than it is.

I live in the real world where the scans I have done tell me how long I’m going to likely live.  That is anxiety or scanxiety on a different level, on a terminal level.

Sometimes I wish I could invite others to live inside my head, inside my life, inside my experiences for a minute, an hour, a day.  That would be so much easier than trying to explain.  I struggle to put words sometimes together to explain, I reach for metaphors that have their own issues.

So, I’m writing this blog post to be able to share with others when this happens again, because it happen so depressingly often. 

Here are my top 10 ways to be an ally to the stage IV metastatic breast cancer community when you are not Stage IV, in no particular order:

  1. Ask us what we want to be called, if there is a label that resonates with us.
  2. If we tell you what we want to be called, use that term and not anything else.
  3. Hold space for us when we are having a tough time.
  4. P.S. Holding space means not telling us what to do.
  5. Ask us if we want to hear suggestions for remedies for whatever it is we’re dealing with.  If we say no, THEN DON’T SAY ANYTHING.
  6. Don’t give medical advice if you are not a medical professional.  That’s called practicing medicine without a license and it infuriates me just as much as people who try to practice law without a license.  There are also criminal and financial sanctions for that.  Don’t test me, I will report people and have.
  7. Ask us if we’re in a place where hearing about a different remedy that worked for you would be helpful.  If we say no, THEN DON’T SAY ANYTHING. Yes, this is listed twice. That’s not a mistake. This is a BIG DEAL.
  8. On the flip side, saying something is better than saying nothing.  Saying you don’t know what to say is better than saying nothing. Saying you have something you want to say when the time is right is better than nothing. Showing up is key.
  9. If you are selling something, ask before you start sending information about whatever product you think is a miracle.  Seriously, don’t send me info on the miracle product that you don’t know the ingredients to and if I say no, STOP SENDING IT.  I don’t want to join your team and I sure as hell won’t spend my disability money on something without my doctor’s advice.
  10. Save the meme I included above–toxic positivity DOESN’T WORK.  It’s rude and demeaning and elitist and arrogant and awful and infuriating and hurtful and mean.

I obviously feel strongly about this.  I want allies.  We metsters need allies.  The median life expectancy of us stage IV lifers is 2-3 years.  That means we die, quickly.  We need people who don’t have cancer, who are cancer free, who have early stage cancer, who know someone diagnosed, really everyone, to fight with us.  Make no mistake, we are in a battle to fund sufficient research to give us options until a cure is found. We all need to work together to make a difference for us.

Be an ally.

Ask me how.

 

Form over Substance

There are usually good reasons for doing something the same way every single time.  Protocols and procedures are extremely helpful, especially when someone’s health is on the line.  When I was practicing law, I had lots of policies and procedures, especially for new hires and the people at the front desk.   When there are employees who need to be trained with bright line rules, its much easier not to give said employees the room to think things through and adjust to the patient/client in front of them.

BUT

Now that I’m on the other side of the equation, I really do have a very different view. Some of those form over substance rules get pretty freaking irritating when it happens over and over and over.  Everyone needs to think about how they are being experienced by the person who is the patient/client from the front desk person all the way to the person/people running the show.

Here are some of my pet peeves, in no particular order:

  1. I absolutely understand that if someone is pregnant, then certain tests are not possible because of danger to the baby.  However, if I tell you that I had a complete hysterectomy in 2017 and two minutes later, you ask if I’m pregnant, it just seems like you aren’t listening.  Also, that’s in my file.
  2. If information like medications and surgeries are in the medical file, why do I get asked every single time I come in, what medication I’m taking and how many and what kind of surgeries I’ve had?  Could someone take 2 minutes and look at the file?  I have a timeline and charts of medication and treatment for new doctors, but if I’m an established patient, I don’t have the patience to go over and over the same things that are in my file. Plus sometimes going through that list is triggering and ptsd symptoms are no joke.
  3. I’m 100% on board with checking for new allergies, especially drug allergies, but if you ask “what kind of allergies do you have,” how am I supposed to know if you want to know if I’m allergic to dust mites or medication or latex?  Being precise is helpful and means I don’t have to list things that you don’t care about.
  4. I’m in pain all the time.  ALL.THE.TIME.  When I’m asked if I have any pain today and I answer, yes, I deal with pain all the time at a level 3-4 on the pain scale, a little chuckle is not the appropriate response.  I wasn’t trying to be funny by saying I’m in pain all the time.  Seriously.  I’m in PAIN all the time.  Not humorous and certainly not for someone who isn’t me to chuckle about.
  5. I had a LOT of surgeries in 2017.  Sometimes I’m at a place in my treatment and my mental health that I can joke about it.  Sometimes I can say, 2017 was a shitty year.  Because it was.  However, no medical provider gets to quip, after I’ve finished going through all the surgeries I had in 2017, that 2017 was a bad year for me.  I particularly hate the southern “well, bless your heart, honey.”  Nope. Nope. Nope.  You don’t know me, you don’t know what it was like and if I’m not joking about it, you can’t.

Again, I get that patient safety is important and that some of this information is necessary; however, I really do think that applying basic humanity to the thought process or the actual experience of handling these questions can really inform the substance.

I have started asking various support staff if they would handle the conversation the same way if they were talking to their mother.  I get a lot of weird looks, but I’m used to that.  Teaching empathy is something that I’m trying to apply to my parenting and I figure that I can do that in other places too.  Each time I’ve asked support staff this question, they stop and act far different.

Terminal cancer is not fun.  I will be in treatment for the rest of my life.  These conversations aren’t isolated, they happen all the time.  I go to the doctor’s office all the freaking time. Just a few minutes is all that’s needed to ensure that the real substance of what needs to be known is obtained rather than just ticking off a checklist.

Medical Marijuana

I am not a doctor. I am not a medical provider. None of my statements in this blog should be taken as anything other than my own conclusions and personal experiences.

Anyone who knows me knows how much of a rule follower I am.  I’ve been been this way since I was quite going and then law school simply made it worse.  Much worse.  I’ve never liked feeling out of control and I’ve never liked the idea that a substance could make me either be out of control or forget what was going on — case on point, I got drunk once by accident while studying abroad and have never done that again.

Wow, how things have changed!

In previous years, I remember seeing the advocates at the courthouse asking everyone to sign the petitions in favor of medical marijuana.  I remember seeing all of the ads and the individual pleas from patients and their families to vote for the legislation that made medical marijuana legal in Florida after years of efforts.  I remember thinking that the issues had nothing to do with me and while I did vote in favor of the legislation each time it came up for a vote, I didn’t enter into any of the advocacy efforts.

I see now how wrong that was.  Just because that issue had not affected me or someone I know directly (at that time), I didn’t help when it could have helped others.  I have some regrets that I did not help support those initiatives then.

Because now I take medical marijuana daily.

It has taken me some time to figure out how to use it, how to dose myself, and how to navigate the complexities of all the different strains and options.  This is an area where my lack of experimentation earlier in my life has meant that I am not as well versed now.  I’m making up for that!

Before anyone thinks that I’m putting my children at risk, let me clarify that I only take CBD oil during the day to manage my pain and I take THC at night to help me sleep.  CBD has no psychoactive effects, which means no “high”. This means I’m not impaired in any way during the day when I’m driving around and taking care of my children.  This is important to me, that I’m able to be present and alert when caring for them.

So, a few things I’ve learned ….

  1. Everyone responds differently–just because a certain dose or strain works for me, doesn’t mean that will work for anyone else.
  2. There is a lot of bad information out there–so many websites and articles full of information that are not vetted or checked.  Proceed at your own risk!
  3. Many medical professionals, especially oncologists, are skeptical of medical marijuana–my own medical oncologist was pretty negative about my choice to avoid narcotics for pain management, but the proof is, as they say, in the pudding. She’s now comfortable telling other patients that she’s seen it work.
  4. Many medical professionals have no idea how medical marijuana can interact with any other medication, including oncology pharmacists. Doctors, like many professionals, are risk adverse for good reason, and when they don’t know, they usually recommend against.
  5. Some medical professionals who are prescribing medical marijuana are doing so unscrupulously and are not actually helpful with regard to dosaging. This describes several doctors I saw before I found my current pain management doctor. My advice is to stay away from cannibis specific practices.
  6. The efficacy of medical marijuana can vary widely by source.
  7. The cost of medical marijuana can vary widely by source.

I’ve found an amazing community online who are experimenting carefully with using medical marijuana for the treatment of cancer and the side effects of both cancer and the treatment of cancer.  Does medical marijuana actually kill cancer?  I have no idea, but outside of a few specifics, it does not appear to be causing any harm.  Taking medical marijuana to help manage my pain, my anxiety, my depression, my ptsd, my scanxiety, and helping me to sleep through the night has been one of the best things I’ve found with the fewest side effects and unintended consequences.

I’ve stayed up on the research, I’ve consulted with medical professionals who focus on the treatment of cancer with cannibis and I’ve found a pain management doctor who prescribes and follows my use carefully. Since my pain management doctor is also a palliative care doctor, she is particularly sensitive to quality of life issues, which is important to me. So many people don’t have the luxury of the same resources I’ve found and I’m always interested in finding ways to support others, to help others find the relief I’ve found from constant chronic pain without taking opioids.

While I’m not a doctor, here are a few additional details I’ve learned in my own research and experimentation …

  1. Many pharmacists and doctors say that Ibrance and CBD are contraindicated. In my research, I have discovered that this is likely because both Ibrance and CBD are processed along the same pathway in the liver. So, in my own words, if you take Ibrance and CBD oil at the same time, it overwhelms that pathway and also interferes with the efficacy of both since the processing in the liver is part of how both are activated to their highest and best use. The remedy? Take them at least two hours apart. This way, the pathway is cleared or clear enough that it does not cause an issue or interfere with the efficacy of either.
  2. The contraindication for CBD and tamoxifen is something much less simple and there does not seem to be any way to deal with it yet. I am always sad to learn that my premenopausal friends are not yet able to access this remedy while taking tamoxifen.
  3. THC is a phytoestrogen and/or increases the level of estradiol (the bad estrogen). I don’t know enough yet to understand why or how. I have discovered that most cannibis providers believe that staying until 50 mg daily of THC is best for estrogen sensitive cancer.
  4. The delivery method makes a difference. For me, the pills take way too long to affect my pain. I prefer the oil taken sublingually (under the tongue). The oil does take some time to take effect, so I have a vape pen handy if I’ve had a bad day or am expecting to be more active. I understand that Florida had just approved the ability of people to legally smoke marijuana directly (ie not vaping). I’m not a fan but that’s just my own personal comfort level. Edibles are still not legal in Florida, which makes no sense to me but I’m hopeful that will change at some point. I am frankly a big fan of gummies infused with whatever medication desired; however, I’m also aware this method of delivery can be an issue when curious children are around.

It’s been an interesting experience to delve into this alternative world that I frankly avoided up until now. I firmly believe that natural remedies can be helpful and effective when used responsibly and I am always careful to do my research and find qualified professionals to guide me.

Tell me, what are your experiences with medical marijuana? Do you know someone who takes it?

 

Congressional Support

Thus far, I’ve been successful in getting my insurance company to cover what my doctors have prescribed and, thus far, my private disability insurance company is behaving itself.  Being an attorney does come in handy when it comes to fighting with various organizations — when someone tells me no, especially when I know the answer is supposed to be yes, all that does is make me want to fight and fight until I get the right answer.  However, I am well aware that that is not the answer for everyone and that oftentimes even the best advocate cannot obtain the result desired/needed.  So, I’ve looked outside of my own instinctive responses for those remedies available to everyone and enlisting one’s elected officials was a surprising one.

This remedy is surprisingly simple.  Every Senator’s staff includes individuals responsible for reaching out to the community.  Each community staffer has the option of focusing on something specific and access to benefits or resources in the community is a big one.  Step one (1) to obtaining support from your Senator is to reach out to your local Senator’s office and find out the name of the person responsible for assisting constituents with medical/insurance issues.

Step two (2) is to tell your story to that staffer.  While this information could be shared electronically, I would recommend meeting individually with that person.  I realize that this could be difficult for some, especially those of us metsters who have physical limitations.  However, there is nearly nothing more significant than looking people in the eye while you tell your story and talk about what is important to you. Consider asking the staffer to come to you if mobility is an issue.

Once you’ve told your story and explained the particular struggle you are having, then step three (3) would be to ask for a Congressional oversight letter.  This is a letter that any Senator is able to send to any agency that you are dealing with.  Examples: Medicare, Medicaid, Social Security, Private Insurance Companies for health insurance, disability, etc.  The letter is a form, but it flags your situation, your file, your request as one that is being followed by a member of Congress.

Step four (4) is to sit back and watch the magic happen.  Am I exaggerating?  Well, I’ve personally observed this work multiple times and it definitely seemed like magic.  Putting pressure in the right way and by the right person can suddenly make all the pieces fall together.

I’ve heard of a few other remedies that bear mention:

  1. Writing a letter to the CEO or upper leadership/management of the company you are dealing with;
  2. Reaching out to your agent who sold you the policy so that he/she can help advocate for you internally (this worked very well for me);
  3. Connecting with various employees on social media (LinkedIn, Twitter, etc.) and then talking/tweeting/writing about your experience/issue and tagging them.  Enlisting your friends to do the same.

Whatever the issue, for me, the bottom line is that sometimes we need help.  Sometimes we can’t solve an issue on our own.  Knowing the right method for getting results and decreasing stress in your life (as a patient) is powerful and helpful.  If all else fails, give me a ring, some days having the opportunity to yell at people for not doing their job is just what the doctor ordered. 😉

Fertility, Infertility and Secondary Infertility

This is a topic fraught with so many sensitive issues and let me say up front that I am not an expert on any of it. What I am is a woman, a daughter, a wife, and a mom.

Some background on me … I delayed having children on purpose because I wanted to build my career and to spend quality time with my husband. When we got married in 2008, we were both out of our 20s; well, I turned 30 a few months after we got married. When we were ready to conceive and I stopped taking birth control, we thought it would happen quickly. It didn’t. So, we went down the road of testing and monitoring my fertility closely. I quickly grew to resent the charts and forced timed intercourse that only highlighted my continued failures.

Still, no pregnancy.

We then went to a fertility specialist and went down the road of medication; fortunately, just the oral kind. It took time and there were lots of delays, many times we got our hopes up only to be disappointed, and there were many many pregnancy tests. Going every day for a vaginal ultrasound around the time of fertility was super difficult to work into my schedule and wasn’t fun.

Then, yes, we got pregnant and our eldest boy was born in 2013. Once we decided that we wanted to give him a sibling, it was back through the fertility rollercoaster once again. Different this time was that I was nursing and refused to wean just to get pregnant. (I was a difficult patient long before I got cancer!). This time, because I was nursing, I had to give myself daily shots. After months of trying and lots of shots, we were finally able to get pregnant again and our youngest son was born in 2015.

Our two boys are exceedingly precious to us, even more so because of all the effort and time and angst to get pregnant. Nursing was even more important to me because it felt like it made up for my body not doing what it was told.

Fertility was the first time my body failed to do what was supposed to be natural and normal. Finding out that I have Stage IV metastatic breast cancer was the second time my body failed me.

When we met with my breast surgeon so that she could give me the results of the breast biopsy and tell me I had breast cancer, she asked us about fertility and what our family plans were. We didn’t know how blessed we were that she was up front and discussed our options with us directly and candidly at the very beginning. Since we’d been on the fence about the possibility of a third child, the diagnosis gave us a pretty clear and definitive answer about that. At the time, it didn’t seem like another loss, but it was.

No, my experience was not to be told I would never be a mother.

No, no information was withheld from me so that it was too late to preserve my fertility.

Yes, I have two amazing little boys who I was able to carry to term.

No, I’ve not had to suffer the loss of a child through miscarriage.

And yet, the end of the possibility of my body nourishing another child was a major blow. Immediately, the largest change was that I had to immediately wean both of my boys. We’d been nursing for 4 years, the last two years as a tandem threesome. Nursing was literally inextricably intertwined with how I mothered my children and the adjustment was devastating. Since nursing was how both of my boys drifted off to sleep each and every night of their lives, bedtime was torturous as we adjusted to weaning and the fact that I had cancer all at once.

I think the devastation of learning I have a terminal diagnosis along with the devastation of weaning masked the sadness of learning that there wouldn’t be another child of my body who shared the traits of both my husband and I. Once some of the shock wore off, I was able to feel some of that loss.

Fertility, infertility and secondary infertility are becoming less of a taboo subject over time. Women are speaking up more and more about the toll these losses take and how silence about these losses only makes them worse. So much worse. I’m not sure we ever really get over these losses and having to hide how hard it can be is probably the worst way to handle it.

Being given a terminal diagnosis means that I’ve had to grieve the loss of so many things. Even things that I didn’t really even realize that I wanted. We have to continue talking about loss, talking about grief, talking about how dealing with these things can affect all of us. Only when we get things out in the open to be able to examine them, grieve them properly and then put the loss in the appropriate context can we move forward with the grief. No one truly moves past grief, it just becomes a part of us in a more manageable way.

For now, I will focus on the amazing gifts I’ve been given, EMBRACE the reality of the here and now, and offer support when I can to those who are still grieving. When women support other women, truly amazing things happen.

Medical Professionals

At last count, I have over a dozen doctors that I have open and active treatment with.  This does not include the entire medical team I had up in Orlando before we moved to Miami.  Going from seeing one doctor once per year (before cancer) and never having much of anything to say or write down on the registration paperwork to seeing multiple doctors each week and having to bring lists because the paperwork never has enough room to write everything has been a HUGE adjustment.

There are a lot of things I’d like to correct about the health care system, but this post is for the people I see every day in doctor’s offices and the things I’d think were common sense …

  1. Look the Patient in the Eye.  I realize this seems silly, but there’s nearly nothing more demeaning than demanding deeply personal information from someone while staring somewhere else.  This applies to everyone, from the clerk checking the patient in all the way to the doctor in the exam room. Having billed for my time for decades, I really do understand the need to document a visit/time, but to do that instead of looking the patient in the eye is the worst thing that could be done.
  2. Pronounce the patient’s name correctly or ask how.  My name is not Johnson, it’s Johnston. I can hear the difference.  If you don’t pronounce the patient’s name correctly, then apologize.  If the patient has a differently spelled name or you aren’t sure how to pronounce it, ask.  I have no problem answering this question, but if I correct someone and they insist they said it right the first time, that person has lost all credibility with me.
  3. Introduce Yourself.  There is truly nothing more confusing than being in a new medical office or hospital room and people one after the other come in and touch you, talk to you, ask you questions and you have no idea who they are.  Name tags help, but they aren’t always turned the right way to be read and I’m blind as a bat without my glasses.   As a patient, I need to know who you are and why you are touching me or asking questions, especially at night when I’m hospitalized.
  4. Read the file before you enter the room or ask a question.  I realize it is easier sometimes to ask a patient/client a question rather than dig for the information in the file.  As a patient, nothing loses my trust faster than to realize that the person sitting in front of me does not remember anything about me and/or doesn’t know anything about my file.  This means I then attempt to provide all of the information I think is important.  I’m not a medical professional so that probably means I will give lots of extra information that isn’t needed.  It would be so much faster and more efficient to at least glance at the file.
  5. Attempt to Empathize, but BE CAREFUL what you say.  Words matter.  Words matter deeply.  Saying “I know how you feel,” is NOT a good idea unless you have actually been in that person’s shoes.  It is impossible to understand how a terminal patient feels unless you are also a terminal patient and to be told that someone knows how I feel when that person is actually making me crazy is not helpful in the slightest.
  6. LISTEN.  I get that not all patients know what to say.  I get that we patients don’t speak in medical terms all the time.  I get that we patients tell medical professionals things that may seem irrelevant.  With all that being said, a patient needs to know that his/her medical professionals are listening, that our concerns mean something.  I have learned very quickly that different doctors/staff are listening for different things, that different doctors stay within their own specialty and I do my best to tailor what I’m saying; however, there is nothing more important in the doctor-patient relationship than the RELATIONSHIP.  To have one, both parties to the relationship have to listen to the other and that relationship includes all of the members of the office, not just the doctor.
  7. There is more going on than you can understand.  The intangibles of being a patient with a terminal disease are complicated and many.  A patient may be experiencing PTSD while just sitting in the waiting room. Waiting for the results of a scan can be impossible and heavy.  Realize that a patient not reacting well or not being “cooperative” is likely about so many more things than what another person can see.  Be kind and be flexible.
  8. Touch. There are more and more studies that demonstrate the power of touching another human being and how that affects both people involved internally and externally.  Suffice it to say, a gentle touch during an exam or discussion or encounter is powerful and should be utilized frequently when appropriate.
  9. Talk to and about the patient in front of you ONLY. I cannot emphasize this enough.  I’ve stopped keeping track of how often I hear commentary and information about other patients, sometimes very personal information.  Most often, it is the support staff complaining about a patient.  I’m sure I’ve been the subject of complaints a time or two.  Griping about work issues may be healthy in the appropriate context.  Where other patients can hear is not that.

I’m sure medical professionals have their own dos/don’ts for patients, but these are mine as a patient with a terminal illness that will require me to see and continue to see many doctors for the rest of my life.  Fair warning, I fill out every single survey I receive and I always include names.

When People Pretend

Since I was diagnosed with Stage IV Metastatic Breast Cancer in mid-2017, there have been two people that I followed closely on social media who were “outed” as not actually having the level of illness they had claimed. I’m not going to use their names in this blog post because this is about me sorting through my feelings about what has happened, not what happened to them or what they did. I don’t want to give anyone who has behaved badly more attention; at the same time, it is important to understand how this sort of thing affects the entire community.

We’ll call the first person “J” and the second “K.”

The first time it happened, I was floored. Literally flabbergasted, horrified, and completely blindsided. I’d invested myself and my energy in following the journey of “J,” a woman who posted about having to get cancer treatment while she was pregnant, a pregnancy that would likely kill her because she had to forego levels of treatment to protect her as yet unborn daughter. J talked about her advocacy efforts and the blood transfusions that were keeping her alive. She’d posted about having blood drives and all of the bucket list activities she was completing. I stalked her like I don’t usually stalk people online because I was invested in her experiences and I was so afraid for her.

Then, around the time she should have been giving birth, when I literally prayed for her and her daughter daily, J’s profile disappeared. I honestly thought she must have died and tried to search for her obituary. I didn’t find any notification of her death, just articles and information about how she’d been found out. That J was lying about being pregnant, about having cancer, and that this was a pattern of behavior that had repeated itself multiple times, at least the part about pretending to be pregnant.

I was devastated.

It literally affected me to such a deep point that I was a bit concerned. How could I have gotten so attached to this stranger, this person I’d never met? How could the betrayal feel so personal? What was going on with me that led me to be so invested in her experiences and the outcome?

It’s hard to articulate how devastating that first experience was and it led me to pulling back a bit, to not investing as much in the metastatic community because it scared me. It scared me how much I was identifying with a person who turned out to be scamming people for money. I know that a big part of why I was so focused on J was the part of her experiences that affected her child. That resonated with me, it pulled me in, because it has been such a HUGE part of my struggle to reconcile my own cancer diagnosis with being a mom; with how having a terminal diagnosis affects my children.

Inevitably, I engaged again, I started following the experiences of others more closely, but I confess that I’m more skeptical now. When something feels off, I look a little closer, and I have tried to protect myself a bit more. I’m not sure I’ve succeeded much, but that first experience gave me a lot of pause. So much pause that I confess to interrogating or perhaps cross examining people when stories don’t add up. I do try to keep myself under control, but this is a MAJOR trigger for me now.

Recently, another woman was outed, we’ll call her “K.” I’ve been aware of the concerns about her for longer than J. I wasn’t as personally invested in K’s experiences or the details, but this time, I was privy to more information earlier. I spoke with various people who had been directly affected by K’s behavior and tried to provide some legal guidance as to what could be done. The information was gathered and notes were compared before anyone went public.

And then the internet exploded.

Maybe that’s a bit of an exaggeration because people outside of the metastatic cancer community may not be aware as much about the issues or the affect on so many people; however, the affect on the people within this community has been profound. The same way I felt when J was outed was how so many people in the metastatic community felt when K was outed and they were vocal and MAD about it.

You see, both of these women preyed on people who could not really afford to help them. People within the metastatic and larger cancer communities gave more than they really could afford. When it came out that the recipients of this generosity was not being honest, were pretending to be in dire straits medically or in other ways, the feeling of betrayal and outrage was practically leaping off the page.

Another difference between these two experiences was that J, while often complaining about how she was treated by people who clearly knew something was up, K often displayed overtly aggressive and bullying behavior. Being a strong, outspoken, and direct person, I’ve gotten complaints over the years in a similar vein. I do think that certain personality traits can be misinterpreted as being aggressive and female behavior is labeled and addressed differently than a man’s.

However, in this instance, I’m not talking about just being strong, I’m talking about going over the line, to be unkind and calling names and behavior that becomes more than a misunderstanding. This is an important distinction.

I don’t pretend to understand either J or K. I don’t understand their motives. Living with a terminal diagnosis is awful. It is hard, it is heartbreaking and it is isolating. To voluntarily pursue that experience is baffling. I suppose that there is an element of attention, if you want it. It’s just not something I’d want to get attention for if I had a choice.

At the end of the day, I know intellectually that hurt people hurt people. I am well aware intellectually that mental illness or unresolved trauma or unmet needs can lead people to do things that look inexplicable from the outside. I’m not a mental health person and I can’t pretend to understand the why behind the behavior.

What I do know is that you can’t just say J/K (a/k/a Just Kidding) about something like this.

No person can co-opt the experiences of others and pretend to be a part of a courageous and often desperate group of men and women without consequences. Perhaps the legal cases will go nowhere. Maybe GoFundMe won’t ever require that people prove that they have the medical conditions that provide the basis of requests for funds. Maybe on this earth, J and K won’t be held accountable.

What I do know is that there will be a reckoning, maybe in this life, maybe in the next.

I’m a big believer in karma; that what you put into the universe will come back to you; what you sow, you will reap. Even though I would like to personally give both of these women (and anyone else who pretends to have cancer) a choice piece of my mind along with some choice language that I don’t often use, pretending to be something they are not will, in the end, hurt them the most.

These women deserve our pity, not our vitriol. The greatest revenge, after all, is to live well; to move on as if these people have had no affect. That is how we show them, and others, that their efforts to disrupt the supportive community, the encouragement we give each other daily will not bear fruit. You see, those of us who genuinely care, who push past the point of pain to offer encouragement and support even while we carry our own burden, we aren’t pretending, about having cancer or anything else.

Nameste.