Chiropractic Care during Cancer Treatment

Let me first say that I’m not a doctor, nor do I have any medical training whatsoever.  This blog is not meant to give any sort of medical advice only to share my personal experiences and shed light on what I view as important information.  That’s it.  Read further at your own risk.

I have not always been a fan of chiropractors.

Growing up with a physical therapist for a mother made me skeptical and wary of anything that affected bones or was viewed negatively by the medical establishment. When my parents began seeing a chiropractor and found so many benefits, that did help to thaw that sense of leeriness; however, it wasn’t until I was pregnant with my second son that I saw a chiropractor regularly (for any pregnant mamas in Orlando, check out Diana Gabaldon in Baldwin Park!).  That experience definitely made me a convert as there was no way I was going to be comfortable without those adjustments the last trimester.  When my eldest was getting back to back ear infections and the pediatrician started talking about tubes, we took him to a chiropractor and he didn’t need tubes (for anyone looking for excellent chiropractic care check out Comprehensive Health and Dr. Aaron Webb).  Dr. Webb also took care of me leading up to my initial breast surgery while I was living in Orlando.

After I had surgery and received clearance from my doctor, I went back to see Dr. Webb and started getting weekly massages from the massage therapist in his office.   One thing that many people don’t realize is that seeing a chiropractor is not just about cracking your back or physically based adjustments.  Many chiropractors (including Dr. Webb’s office) have a variety of modalities and other professionals like massage therapists and even physical therapists.  The massage therapist in Dr. Webb’s office gave me so much relief while I was healing.

Now, a big hurdle at the beginning can be the general negativity about chiropractors from the medical establishment and talking openly with your medical oncologist would be key at the beginning.   Most organized chiropractic offices would request a letter saying it’s safe to provide care or what care is safe before embarking upon treatment.  This is for everyone’s safety.  For those of us with bone only metastases, it doesn’t take much to break a fragile bone.

When we moved from Orlando to Miami, I had to seek out options to replace Dr. Webb’s office.  I’ve had to find both a chiropractor and massage therapist separately, but having both on my “team” has been so necessary and so needed.

Dr. Lewis Arrandt is my current chiropractor.  He is truly an intuitive healer.  The regular adjustments and other modalities in his office have been so helpful.  Since I’ve been seeing Dr. Arrandt for a little over a year, I know that he knows my body and it’s capabilities/weaknesses.  My aches and pains are less when my skeleton is aligned.  I won’t try to explain the science/biology behind how it works because I’m not entirely sure I understand it all myself.  Suffice it to say, the better my body works and it’s natural processes are effectively working, the better I feel, inside and outside.  My liver and kidneys have taken a beating in the last over 2 years of treatment and anything that helps them work better is helpful overall.  Also, I have lots of pain due to the metastases in my bones and the alignment affects the level and intensity of my pain.

So, there you have it, for me, chiropractic care during my cancer treatments has been helpful for functioning and for pain relief.  My medical oncologist is tolerant of my desire to seek both traditional and complimentary medicine; I know that she does not always believe it is helping, but so long as the complimentary interventions are not causing problems, she doesn’t fuss at me too much.

As I stated at the outset, I’m not a doctor and I cannot give medical advice.  I am super careful to ensure that all my doctors know what I’m doing, especially the complimentary/alternative care I seek out beyond the medical professionals I trust to oversee my care.  Even if I get looks or comments or even lectures, I seek out what works for me and then I am open about it.  I absolutely 100% believe that only with true transparency can any medical professional hope to their job effectively.

Insurance

My first introduction to the world of insurance was as a personal injury attorney.  I will forever be offended by the term “ambulance chaser” since that was never part of my experience as a lawyer representing people who were genuinely harmed in a variety of ways, but that is the stereotype.

During my tenure as a personal injury attorney (and I did represent some insurance companies as well as plaintiffs), I learned to truly distrust insurance companies.  While I am well aware that many people are not fully honest about many things, struggling to get funds for genuinely injured people who were adversely affected in the most significant ways has forever tainted the way I look at insurance companies.

Yet, I bought a lot of insurance.  I suppose that is somewhat inconsistent, but I also saw how many people are under-insured on a daily basis for years.  My husband was always more skeptical than I about insurance and my desire to purchase so much of it, but we’ve also seen some big upsides now that I am no longer working.

I now deal with my health insurance company nearly daily.  I don’t want to, but the outcome of having a terminal illness is that I see doctors and other medical providers at least weekly and sometimes more than that.   It’s ironic to me that I am not considered to be in “active treatment,” but I still see my medical team more than I’ve ever seen doctors before my diagnosis.

There are a few things I’ve learned along the way about dealing with health insurance companies in the midst of a terminal illness and here are a few items of note in no particular order …

  1. Find out what requires an authorization in advance.  This widely varies by insurance company and plan and is extremely important to know.  Most of the time a pre-authorization carries with it a tracking number.  Get that.
  2. Don’t take anyone’s word for anything.  Another way of saying this is trust, but verify.  This is particularly important when it comes to pre-authorizations.  An example — my health insurance company requires a pre-authorization for PET scans.  It says so on the back of my card.  I pointed this out multiple times to my former hospital.  When I arrived for my PET scan, I was told that a pre-authorization was obtained.  It turned out that someone called an automated line, entered my insurance policy number and “heard” a recording that a pre-authorization was not required.  This was not the case.  I didn’t know any of this until I received a substantial bill in the mail a few months later.  Now, I didn’t pay that bill (probably the subject of another blog post), but dealing with the insanity of talking to a hospital trying to collect funds and an insurance company trying to avoid paying is draining and takes so much time away from my family, so now I verify and verify and verify.
  3. Know what your plan covers and when.  An insurance contract is likely hundreds of pages long; however, when you have a specific terminal diagnosis, there is likely a smaller amount of language specifically applicable regularly.  Every time I encounter a situation where my insurance company does not want to pay, I go back to the contract language and make sure I’m on good footing when I call. An example–my contract requires that if my doctor has to appeal a decision, the insurance company must provide a peer.  When my insurance company has a doctor without credentials demonstrating that that doctor is my doctor’s peer, I found out that I can require a second peer to peer consult with an actual peer.  My doctor’s office was not aware of this–I found out because I didn’t stop asking why the request for a PET scan was denied.  It hasn’t been denied again.
  4. Don’t be afraid to ask for a supervisor or a supervisor’s supervisor.  I’ve found that I often don’t get what I need by talking to the first group of people who answer the phone.  Most of them give me contradictory answers and/or have no idea how to apply my policy to the situations I encounter.  I get that my situation is more complicated because I am both terminal and am receiving curative care.  So when I don’t get the information or the answer I need, I simply ask for someone else.
  5. Write down names, details, dates and times.  I’m a bit obsessive about this.  I have notebooks full of data that I don’t need and likely won’t ever need; however, this information has saved me several times.  That first group of people who answer the phone at my insurance company and many individuals within my cancer center have often written “notes” that are not accurate.  I’m thankful that most of the time these conversations are recorded, but I am not happy that I often have to point out to supervisors that their subordinates actually lied to make themselves look better.
  6. An insurance executive suggested a letter to the President of the company to address larger concerns.  I attended a conference last summer where an insurance executive made the case that insurance companies are full of people who care about their policyholders and are trying to figure out a way to pay for the treatment we need.  I don’t think any of the patients in the audience actually agreed with him, but one thing he suggested that definitely resonated with me was to write a letter to the President of the health insurance company if there is a systemic issue.  I believe he also wanted to impart that the executives at the top of the food chain simply don’t have much patient contact, so if a patient/insured can get the attention of the executives, then the executives circulate the letter and that gets something done.  I’ve not tried this yet, but I’m keeping it in my back pocket for when I need it.
  7. Companies, generally, are responsive to negative reviews or comments/posts on social media.  I’ve noticed that Twitter is the most productive for publicly shaming companies.  I’m also now connected to a lot of people who work for insurance companies on both LinkedIn and Twitter.  Not only do I want to make sure that I am a credible person to bring up an issue, but I want to know who I might need to communicate with if there is a big issue that needs to be dealt with on a larger scale.

I’m sure I will come up with more suggestions/comments the further I get into the health care world/system.  It is a place where I certainly don’t want to be, but since I’m here, I might as well understand it as much as possible.

Fight or Flight

When I was first diagnosed with breast cancer in March of 2017, the “fight” language/metaphor appealed to me.  As a recovering lawyer and high “type A” person, the illusion of control is really hard to relinquish.  Thinking in terms of fighting to win, of beating cancer, of taking control, of having a say in the strategy and utilizing all tools available to me, this gave me something to focus on.  It helped to think I could do something to affect the outcome.  I honestly don’t remember if any of my doctors utilized the battle/fight metaphor, as so much of that time period is a blur, then and now.

The thing about a cancer diagnosis is that you can’t run from it.  There is no option to opt out, even if that is the thing you want most in the world.

Once I learned that I was actually stage IV from the beginning (a/k/a de novo) and I did some internal work and work with my mental health providers to have a better definition of what was going on for me, I started to resent the the battle metaphor.  It has taken me some time to define for myself why this metaphor is so problematic for me and, as I’ve discovered, for many others as well.

You see, I can implement every bit of fight I can muster into this struggle with cancer and I’ll still lose that fight because the fight isn’t up to me, the deck is stacked, and I have no power over this disease in the end.

Can I affect the outcome?  Thinking positively, changing my diet, etc.?  I’m not quite sure I can define the exact affect of these things within my control, but you can sure bet that I’m employing whatever I can.

Yet, I still don’t embrace the battle/fight/violence metaphor.

“Czechmeister has called the metaphor a “two-edged sword,” suggesting that, while metaphors are fundamental to individual and collective expression, they are also capable of creating negative forces, such as confusion, stereotype, and stigma, within society.” *

The “fight” metaphor can be extremely motivational and attractive.  However, those of us who are “fighting” in the context of illness can feel disempowered by violence metaphors when we are not given the right “weapons” to fight or that the doctors are “the generals” and they’re just common “foot soldiers.”  In my view, the “fight” metaphor enhances the division between patients and doctors and emphasizes the power differential between doctors and patients.

My own professional background as a lawyer put me in the position of advising and guiding clients through difficult legal issues and I have always viewed doctors in a similar context.  I respect the fact that doctors have more education and more expertise than I do; however, I have never viewed doctors as having all the answers.  Being terminally ill means that I have a significant personal stake in my care and I know that what I bring to the table is my own newly found expertise on my own body.  If a doctor doesn’t respect my part in the “team” and my right to refuse or select treatment, then I move on.  I’ve had quite a few rather antagonistic conversations with various doctors and that’s ok with me–if something isn’t right, I’m not going to leave it alone because my actual life depends on it.  It’s not theoretical or an interesting puzzle to figure out, it’s my future with my children   I am quite well aware that my perspective is not the easiest for people (and doctors) to take.  I am blessed to be under the care of doctors who respect my personal autonomy and my consent.

I also get that doctors are working hard every day to find a way to explain very complex issues to overwhelmed patients and metaphors help with that.  When there is a metaphor that resonates with patients, then doctors and others go with that.  I suspect that is why the fight metaphor has existed for so long and is so prevalent among patients, their caretakers and the medical community.

The media also perpetuates this metaphor and this is where things get sticky.  A doctor/patient discussion is private and protected, so whatever metaphors or analogies are utilized stay private and can morph and change with time and circumstances.  However, when the fight/battle language is used publicly and without a patient’s involvement or perspective, I believe that this is the negative side of the metaphor and where stigma attaches.  Not everyone embraces the battle/fight metaphor and that should not be imposed on anyone.

At the end of life, the fight metaphor can be extremely negative and stigmatizing as those who are “losing” the fight with their death can feel as though they are at fault, that they didn’t try hard enough.  This feeling could push a patient into trying more and different treatments rather than focusing on the quality of the time that patient has left.  The patient may feel as though they are letting their loved ones down if they don’t keep “fighting,” even if what is really best for that patient is to focus on comfort and palliative care.

In the end, metaphors are helpful, they clarifying and motivate, yet they are limited and flawed.  I’m all for motivating patients facing horrific issues and odds by utilizing metaphors; at the same time, when those metaphors cause harm, then they should be discarded.  The battle metaphor is one of those.

When a fellow metster reaches the end of his/her life, I typically say that cancer murdered that person.  I realize this phrase isn’t perfect and actually invokes some of the battle/fight metaphor; however, I also feel that it focuses on the fact that the patient had no say, no way to prevent their demise from a foe that cannot be beat.  And there I go again with the battle metaphor.

I have one request, dear readers.  When breast cancer kills me, please don’t say that I lost my battle with cancer.  It’s ok to say that cancer murdered me, because it will eventually do that.

*Czechmeister CA. Metaphor in illness and nursing: a two-edged sword. A discussion of the social use of metaphor in everyday language, and implications of nursing and nursing education. J Adv Nurs 1994;19:1226–1233. CrossRefMedlineGoogle Scholar http://theoncologist.alphamedpress.org/content/9/6/708.full

 

 

Inaugural Orlando METSquerade

February 2, 2019.

Last summer, I met Lindsey Scholl at a conference in Tampa and she was the first to tell me that the wildly successful model of holding METSquerades to raise funds for Metavivor that started in Arkansas was coming to Orlando.  I immediately knew that I wanted to be involved.  I live in Miami now, but Orlando was my home for nearly 20 years and for my husband, even longer.

It was a labor of love for us metsters as we worked hard to put together an event that honored the men and women we lost in 2018 as well as those of us still living with Stage IV metastatic breast cancer.  Lindsey and her family did the most work and their efforts were not unnoticed by the crowd of more than 500 who packed the ballroom at the Loews Sapphire Falls Resort at Universal Studios in Orlando, Florida.

Our featured speaker for the evening, Lisa Quinn, talked about how she just started her 8th and final line of treatment.  There are no treatments left for her after this one fails to control her cancer and the only way she will live to be with her two children is for research to find more treatments for her.  She is living her life to the fullest and spending time with her children as much as she can in the middle of IV chemo.  My heart hurts for her and her family and yet she took time from her vacation to come speak before a crowd of strangers and tell her story.

During dinner, there was not a dry eye in the house after watching the Angel video that Jennifer Pace created.  Jen had been released from the hospital Saturday morning and then came Saturday night to the event.  That’s what living with Stage IV metastatic breast cancer looks like sometimes. Others that hoped to join weren’t able to because of illness, but they were with us in spirit.

I took charge of the living obituary project and am so thankful I got to interact with and learn more about the other women who are living with Stage IV metastatic breast cancer and thriving.  Each of them wrote a unique tribute to themselves, focusing on what makes them an individual and what they want to be remembered for.  The audience was reminded that without their generous giving, all of the living women honored would join the angels in the video.  Powerful stuff.

Being surrounded by family and friends at such a poignant event was immensely moving.  Watching the video featuring so many women that I got to know who were murdered by breast cancer in 2018 was both difficult and motivating.  One of the women honored at the event by her family and friends was one of the first women living with Stage IV metastatic breast cancer that I met online in 2017, right after I was diagnosed.  She died in 2018.  How can one not be moved to contribute to the legacy these women left behind?*

We did a great deal to raise funds for metastatic breast cancer research through Metavivor on February 2, 2019, but it was a drop in the bucket compared with the funds needed to fund the life-saving research for those of us living with this terminal disease.  We honored the women who have lost their lives as much as we can; however, the only way to truly honor their lives and deaths is to carry on their work, carry on their torch, carry their lives with us as we continue to put pressure on the powers that be to allocate sufficient funds to be meaningful to us living with this terminal disease.

Check out Metavivor.org and give to the only US organization that gives 100% of the funds they raise to Metastatic breast cancer research.  I’m not aware of any other organization in the US in that category and there are a lot of organizations that ostensibly raise money for research and yet keep most of it.  Putting money where it can be most likely used for the most good is important and could save my life as well as the other amazing women who are living with Stage IV metastatic breast cancer.

We are worth it.

 

* We didn’t have any men living with stage IV metastatic breast cancer with us at the event, but I do want to note that men do get this same diagnosis and also tend to pass away at the 2-3 year mark as well.

What do I want to be called?

I posted last week about why I don’t want to be called a survivor.  That begs the question, what do I want to be called, what label do I embrace now that I’ve had nearly two years of living with stage IV metastatic breast cancer under my belt?

I’ve had a lot of labels in my life … Daughter, Sister, Wife, Aunt, Great-Aunt (this one makes me feel old), Mother, Sister-in Law, Lawyer, Guardian ad Litem, Attorney ad Litem, Volunteer, Student, Employee, Employer, Business Owner, Board Member, Advocate … each of these labels describe one or more part(s) of me and define the different relationships that I have with the people in my life and some of the positions I’ve held at various times.  Some labels are forever, some are for a time.  Some labels carry more weight and significance than others.

For those of  you who know me, precision/accuracy is super important to me.  For instance, it confuses me when people outside of blood family are labeled with “aunt” or “uncle” or “sister.”  Yes, I’m revealing my midwestern roots.  Living in Miami is often very confusing when I try to figure out how people are related to each other, only to find out that there is no blood relation.  I get that sometimes labels are imperfect and trying to find the right label for something important and valuable can be challenging.

When I started participating in the breast cancer support groups online, I came across new labels.  “Survivor” is the label with probably the most baggage for many.  “Pink Sisters” also seems to be a popular one, along with “Breasties,” however, these labels exclude the men who have breast cancer as well.  “Metsters” in the Stage IV groups is a little more prevalent and is a bit more inclusive.  Some people resist the label “patient,” others embrace the fighting metaphor and like “Forever Fighter” or “Lifer.”  At a recent conference I attended, a patient advocate was given a ribbon that had the label “Survivor;” she promptly crossed out the three (3) first letters and added “Meta” to make the label “Metavivor.”  Some of the breast cancer advocates from Metavivor (the amazing organization which raises funds for metastatic research) were recently featured on Good Morning America and the “Thriver” yoga pose was introduced. Many of the breast cancer support groups will label themselves a “tribe” and thus the members are members of that tribe.

I believe that the intensity of the shared experiences in the breast cancer “community” affects the selection and perpetuation of labels. There is an instant camaraderie that cannot be explained easily.  Even if we never meet some of the people we “know” online, that does not mean that the relationship is any less intimate (in some ways).  Having a label helps to define and explain what is hard to explain to those outside #Cancerland.

For the situations where a label is desired, I am comfortable with a few of the examples I described above.  I use “metster” when I’m talking to other stage IV men and women.  This label seems to have the least controversy and it’s catchy and its relatively inclusive.  I typically ask to be labeled a “thriver” when I’m dealing with the public or am in the company of early stagers because it rhymes with “survivor” and I think has a positive connotation, somewhat in the same category of survivor, that also distinguishes me from the early stage men and women.

However.

I don’t always feel like I’m thriving.  Some days I’m the opposite of thriving.

I also worry that endorsing this label puts me into the category of whitewashing or “pinkwashing” a terminal illness.  It is problematic and doesn’t work for everyone.

All of the labels are imperfect.  None of the labels fully describe me or any individual specifically.

At the end of the day, I am Abigail. I am my own person.  I am more than the labels.  I am more than the relationships I have with various people and institutions.

I am much more than cancer.  Yes, I have cancer.  I will always have those darn rogue cancer cells in my body, but this experience with breast cancer does not define me as a person.

Overall, I do identify with thriver the most.  Through effort and intention and focus and lots and lots of support, on the whole, I am thriving.  I am also surviving, today, in this moment.

Just don’t call me a survivor.

 

Death

I realize that’s not the most inspiring title; that’s just want I’m thinking about right now and have been for quite a while.  Last week, while I was experiencing a small version of my blog post going “viral,” I learned that a friend of mine had died.  I use that word a little tentatively since online friends are in a different category, I think.

I never met Kari Roush in person, we never even talked on the phone; yet, we “talked” electronically regularly for over a year.  We mostly communicated via Facebook messenger after having been connected as Sister Buddies through an online support group.

The sister buddy program in one of my favorite support groups is designed to connect members to ensure that no member is “lost” in the shuffle.  Since those of us with Stage IV metastatic breast cancer are often ill, often dealing with bad news, often struggling silently, often not very open about struggling …. well, you get the picture … the program is designed so that outside of the larger group, we can connect on a more personal level.

We connected.

Kari and I have the same subtype of metastatic breast cancer and our sites of mets was the same, bone only, until October when the cancer left her bones and invaded her organs, specifically her liver.  We have been on the same treatment too and experienced very similar side effects and issues.  We were only months apart in age.  We are both mothers and talked openly and frankly about our joy and fears at how cancer is and will continue to affect our children.

When Kari had progression on the same medication that I’m currently taking, we talked about death.  Breast cancer is sneaky and mutates often to get around medication.  Hormone positive breast cancer mutates often and aggressively, often years even decades after an initial diagnosis.  We talked about how she was feeling until she stopped engaging as much or as often.  She kept talking about being tired, how she was sleeping for most of each day, how she was afraid and losing hope.

Kari died on January 3, 2019.

Kari died because her cancer mutated beyond the ability of the current knowledge to stop it.  Why is that?  Because not enough funds are allocated to metastatic breast cancer research.  Because not enough progress has been made to understand how metastatic breast cancer works.  Because not enough people are motivated enough to eradicate this horrible disease.

Even though I had not met Kari, I’m so sad that she is no longer in this world.  I not sad that her discomfort and pain and sadness and struggles are at an end.  I know that she is in heaven and she has attained her perfect body, free of all the struggles of this world; at the same time, I am selfishly sad that we won’t have those late night exchanges, getting the other without the need for words.

I addition to being sad about the world’s loss of an authentic human being, I’m angry.

Not just angry, I AM FULL OF RAGE.

Kari didn’t have to die.  Her family didn’t have to deal with the loss of a special person who loved and cared for her children, her mother and those around her.

Why did she die?

Kari died because the mechanism of cancer and metastases and progression and how to address what happens to the human body when cancer invades and spreads has not been solved.

Why hasn’t this puzzle been solved?

Because insufficient funds have been allocated to solving it.  When funds are allocated, when smart researchers and statisticians and bright minds are focused on a problem, it is much more likely to be solved.

There are many arguments about percentages and specifics and the motivations behind whatever actions or inactions, etc.  It’s hard to care about all of that when my friend is dead.  It’s really hard to care about details and statistics and processes and procedures when there are way too many similarities between Kari’s experiences and my own.

The bottom line for me is that there are many many dollars (and every other kind of currency) raised every year in the name of breast cancer and finding a “cure.”  Yet, so little of those funds goes to metastatic breast cancer research.  I don’t know the exact percentage nor do I fully understand all of the politics, what I do know is that every person is unique and wonderful and worthy of a cure.

I was motivated before Kari died and now I’m even more motivated to speak up, to point out disparities of care and funding and to shine a light on what others might want to keep hidden–especially those “charities” that raise money ostensibly to find a cure and then spend the majority of that money on “awareness” and “education.”  Yes, I’m referring to the marketing machine that rakes in millions every year and yet allocates less than 25% to research.  It’s pathetic and enraging and I take it very very personally.

I HATE breast cancer; hate it with every fiber of my being.  I deserve a cure, Kari deserved a cure, and the hundreds of thousands of men and women living with metastatic breast cancer deserve a cure.

Who’s with me?

Early Stagers vs. Metastatic Patients

I had no idea this is a thing, but it is!  Before I was diagnosed with Stage IV Metastatic Breast Cancer, I honestly looked at breast cancer as one illness.  Now, I understand that it is so much more complicated than that and the more I learn, the more I am amazed at how much I didn’t know.  Yes, my mother is a 16 year survivor of early stage breast cancer, but we definitely supported her through that experience and didn’t look back all that much.

My first introduction to the division between metastatic patients and those with early stage breast cancer was when I was asked by a social worker not to come to the regular breast cancer support group.  I hadn’t actually tried it yet, but I had inquired about it when we thought I was Stage II initially and I followed up with her once I knew I was metastatic. She did direct me to a metastatic group, but that was so off putting that I never went to either group.

Her explanation as to why I shouldn’t attend the regular support group was that I might scare the other participants.  Yes, I suppose being reminded of your own mortality might be scary.  However, the longer I’ve lived with metastatic breast cancer, the more I think I should’ve shown up to that support group so that those other ladies could see what they might face.  You see, I’ve become very well aware that early stage breast cancer patients are often told they are “cured,” and not told that each of them has a 30% chance of becoming metastatic at some point.  While some may feel that being told this is scary, I do feel a responsibility to ensure that others are not living under an incorrect misapprehension that their breast cancer “journey” is completed when it might not be.

I recently attended a planning meeting for a local organization that puts on an event each year for breast cancer survivors.  I consented to be a model for the event in 2019 because when I attended in 2018, I was astonished at how little there was available for Stage IV patients.  I spoke up and asked why.  My medical oncologist is very involved with the planning and she immediately asked me to fill that gap.

So, I agreed. I’m a model and I’m working to get stage IV organizations to participate, but going to that planning meeting was HARD.  The women went around the room, celebrating how long each has been a survivor.  There was a table FULL of pink paraphernalia to purchase with all proceeds going towards the event.

I honestly felt sick to my stomach.  I will never be a survivor and so I have no idea how hard it is to be one.  I do understand that sometimes the best way to cope with something scary is to compartmentalize it and move on with your life.  I have to do that every day.

BUT

Each of the women in that room has a 30% chance of becoming metastatic.  When it came time for me to introduce myself, the room was very quiet and then the next person quickly jumped in.  I wasn’t looking for applause or a pat on the back, but I could tell that my impending mortality was not welcome.

When it came time to draft my bio for the fashion show, the person helping me with the formatting told me that I needed to conform to the script, which included an announcement at the end as to how long I’ve been a “survivor.”  When I objected and shared that I will never be a survivor, she had to get board approval to allow me to change the script from “survivor” to “thriver.”  Board approval to change the script?!  Now they approved it, but it is only more clear to me that this group caters to early stagers and those of us at Stage IV are an anomaly.  I’m not afraid to be the token anomaly, but it surprises me how little they know.

I attended another fashion show where I was permitted to speak about being a thriver rather than a survivor.  One of the organizers of the event posted pictures of the models afterwards, labeling all of us survivors.  When I sent her a private message pointing out that I will never be a survivor and simply asking her to change the caption to survivors AND thrivers or just a thriver, she didn’t respond.  When I then posted a comment on the post pointing out that the caption didn’t actually describe me, she blocked me.

SHE BLOCKED ME FOR POINTING OUT THAT THE LABEL SHE GAVE ME WAS WRONG.

I do object to being labeled a survivor, since I will never be done with treatment and my cancer will never be behind me, and in response, she talked to friends of mine about me being negative and then blocked me on all social media platforms.

So, why is there such a divide? Why can’t we all fight for the same thing?  Why don’t early stagers understand that finding a cure for those of us who are dying will ensure that they will not also die?  Why can we not join forces?

I wish I had the answers to these questions.  All I can say for myself is that being the elephant in the room, being the outsider, being told I am negative or scary for telling my own story is simply heartbreaking.  I am not looking for a medal or a pat on the back.  I am not looking for recognition, all I want is to be included.  To be recognized and to be given a chance to educate.

To those people who think I’m being negative for speaking the truth, sure go ahead and block me.  Keeping your head in the sand will only hurt you.  I’ll continue to advocate for research, research and more research.  When the results of that research helps those who didn’t listen to me, I won’t even ask for a thank you; at the same time, it might be nice.