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Creating Lasting Memories

Ever since I knew that I have a terminal illness, I’ve been much more intentional about creating lasting memories with my boys.  They are currently five (5) and three (3), so I am quite well aware that their actual memories of me may not be all that vivid if my life expectancy follows the median of those with my disease (2-3 years is the median life expectancy).  One of the major ways I make sure that I will be visible in my boys’ memories is to take a lot of pictures.

Life isn’t perfect and I am often not happy about the way that I look in the pictures.  That used to mean that I didn’t post pictures or even take them and when I did, I’d carefully ensure that only the best were displayed.  Now, I take pictures all the time and I post and share pictures quite a bit.  I’m not at all narcissistic, I am intentionally making a record of the time that I have with my boys for them, for their future.  They will be able to look back and see all of the times we’ve had together.

When my dear friend, Jennifer Pace, posted information about an up and coming non-profit that schedules photo sessions for those of us with metastatic breast cancer, I jumped at the opportunity.  The photo session was nothing less than amazing and the pictures that came out of it are priceless.

I’ll post more on Facebook and all of the pictures, but I’ve tagged one of my favorites in this blog post.  Check out Joe Leone Photography and like 13th Hour on social media.  Joe and his sweet wife are traveling around Florida capturing poignant memories that cannot be replaced.

Treating Cognitive Issues

Once my neuro-psychological testing revealed a 20 point IQ drop, the next step was to discuss treatment.  The areas identified as deficient have to do with recall, processing speed and executive functioning; exactly the areas I’d reported issues with.  I was referred to a speech therapist.

A speech therapist?

I was surprised since my perception of speech therapists is that they, well, work with speech issues.  Turns out, speech therapists are so much more than I’d understood.

In addition to the exercises I completed in person with the speech therapist, I was told to download and start utilizing the at home exercises in the application for my phone called “Brain HQ.”  I’d heard of Luminosity, which is similar to Brain HQ.  My PhD neurologist explained that while Luminosity is not research based, Brain HQ is.

The games/exercises I completed in person and on the ap didn’t feel like they were exercising my brain, but they were.  My speech therapist followed my progress in the application and after only 4 sessions in person, I was released in light of the progress I’d been showing.

Next step, repeat the neuro-psychological testing to see if the progress I’d noted was sticking.

It did.

I re-did the testing in the first few weeks of the new year and received my results from the neurologist just recently.  I’ve markedly improved on all the areas of focus.  In fact, I’ve regained all but 5 of those missing IQ points.  Doesn’t mean that I’m back to “normal” for me, though.  I still search for words and there are still those moments when I just can’t follow a conversation.

BUT

The improvements I’ve seen clearly demonstrate that if you exercise your brain, it gets better!!  Hope for the most infuriating aspects of the aftermath of chemo is available and within reach.

Now download the application and set your daily, weekly, monthly goals.  It’s worth it!

Neuro-Psychological Testing

2017 is a bit of a blur for me.  There are some moments that stick out; however, not many.   It was the most eventful year, medically, for me and the addition of chemo to all the surgeries and hospital stays and procedures, its no wonder that it feels hazy and not quite real.  Since there were so many medical issues going on and I was adjusting to so many different side effects, I didn’t say much about the issues going on inside my head. Now that I’m hitting my stride a bit more, I started noticing cognitive issues and finally brought it up to my team.

First of all, I find myself grasping for everyday words.  For anyone who knows me, this has got to be one of the most difficult to adjust to.  I’ve been a litigator all of my professional life, speaking publicly and advocating with words all day long, every day.  To then be searching for simple words to describe something to my children has been a huge humbling adjustment.  It’s never the SAT words I have to reach for, it’s the every day words, like plate or car or tree.  My kids think this is hilarious and I’ve turned the frustration into something of a Socratic method type question and answer time.  It’s still annoying to me, but if I don’t focus on the stress or frustration, it helps.

Secondly, I am literally unable to multi-task.  I used to be able to do many things at once; juggling lots of balls in the air and complete each with pretty good accuracy.  I had to be able to do this to manage all of the things in my life.  Now, if I don’t focus on one, maybe two, I get nothing right.  I once booked a plane ticket for the wrong day and showed up 12 hours late to the plane flight.  Yep, it sucks and having to remind myself to slow down is an ongoing issue for me.

Third, I forget things.  Literally forget the smallest things.  I read a book or part of a book and I have to go back and re-read or re-watch nearly the whole thing.  It’s frustrating and I’m down to only about a half a book a day rather than a whole book.  Yeah, yeah, I’m complaining about something weird, but its frustrating and makes me not feel like myself.  I can’t boast a photographic memory or anything, but I’m an auditory learner primarily and have always had a very good memory for conversations.  Now, I don’t.

When I was finally referred for neuro-psychological testing, I wasn’t quite sure what the results would show.  I was floored when the results demonstrated that I’ve been dealing with a 20 point IQ drop.

Um, what?

I’d heard of Chemo Brain and that while patients complain of the cognitive affects of chemo, doctors haven’t been sure it is really a result of chemo.  I’m not going to put all of the blame on chemo, but that certainly didn’t help.  All of the medication I’ve been on since I completed the summer of 2017 also has ongoing cognitive side effects.  Having a hysterectomy and the ongoing suppression of any remaining stray estrogen in my body also doesn’t help.

My next question was whether there was treatment that could help me recover the missing IQ points (20 does seem like a lot) and the answer I was given was yes, there is treatment. Stay tuned next week for the treatment I’ve completed.

Chemo Brain

This is a real thing.  I’ve read several times that doctors are not convinced that it exists and that it is hard to test.  Nearly everyone I’ve talked to who has undergone chemo experiences various cognitive affects.  It is hard to quantify at times, but it is a real thing.

A rather humorous example that happened to me not too long ago …

I arrived early to a doctor’s appointment and sat in the car for a bit beforehand since the AC inside the office is always set awfully low.  When I got out of the car and pressed the button to lock the doors, I thought it was odd that the horn didn’t beep.  I unlocked and re-locked the car, checking each time that the door locked or unlocked as expected.  When it appeared to work, I went inside. After my appointment, I walked out to my car and realized that it was still running.  Since my car has keyless entry, I was able to take my key inside my appointment, leaving my car running the entire time.

So, glad to know that my car wasn’t stolen, but this was a good example of how chemo affects your reasoning ability.  Any time under stress or a situation that causes heightened awareness, lowers my ability to think clearly or well.

Chemo brain is a real thing and it can have such far reaching effects in the long run.  My best solution has been to slow down, to take notes more often, and to give everyone around me the freedom to remind me repeatedly.  I forget a lot and have to rely on those around me to keep me on my toes.

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.

 

Why I don’t call myself a Survivor.

For those of you who didn’t read my blog post about early stagers vs. metsters, suffice it to say, I have encountered some conflicts with labeling since I was diagnosed de novo metastatic in 2017.   If anyone is interested in the details, the earlier blog post lays some of those out.  There was an ongoing conversation involving the label “survivor” recently, and so I posted a brief explanation of my conundrum in several support groups, asking for opinions because I could see the pros/cons of either decision.

And, then the internet exploded.

Ha, not really, but the fervor of the ensuing debate, especially in the groups that have both early stagers and metsters blindsided me.  I completely get that there are differences of opinion and different experiences and I’m all for differing points of view.  While we all have breast cancer, there is a variety of experiences and backgrounds, all of which are valid.

Yet, this word “survivor” is much more polarizing than I realized.  I suppose I should not have been surprised since I have very strong feelings about it too and I’ve taken a bit of heat when I’ve resisted the label.   It took me a bit to figure out why I have such strong feelings and that’s not a situation I find myself in very often–I am usually able to define and explain the why behind my positions fairly quickly.

Survivor is a word with many nuanced meanings.  As I’ve been drafting this post, I googled the definition of survivor and read pages of explanations and definitions.  I am aware that the American Cancer Society’s definition of the word survivor does include anyone who has been diagnosed with cancer, period, and that the survivorship starts right after diagnosis.  This sounds nice and inclusive and I know that many accept this view.

Yet, survivor is past tense, meaning that the experience is in the past, it is over.  Without getting too detailed on the diagram of a sentence (I took several classes on linguistics, folks), and the transitive or intransitive nature of this verb; let me say clearly that this is an issue with a lot of tangible and intangible moving parts.  I really don’t think that there is a hard and fast right or wrong answer on this one.

At the same time, I do have an opinion as to how this label applies to me …

While cancer is a diagnosis that never actually ends despite what some doctors say or early stagers hope, there are truly those people who look at having cancer as something in the past, over.  Some doctors use the word “cured” with early stagers when they are done with active treatment.  I totally understand that in order to live life without feeling as though the sword of Damocles is hanging over one’s head, it is preferable to believe that you “survived” cancer, that is in the rear view mirror, that you are indeed “cured.”

Well, those of us metsters are always in #CancerLand; that sword is a permanent fixture over our heads; and the experience of cancer will never be in the past.  For me, utilizing the term and celebrating “survivors,” only drives home to me that I (and my friends who are also metastatic) will never not have cancer, that we are excluded from that club.

Stage IV metastatic breast cancer is the only stage of breast cancer that is 100% fatal.  Unless there is a cure found before I die, I will either die of metastatic breast cancer or the side effects of the cancer or the side effects of all the medication I’m taking.  There’s no relief from that reality for me.

Please stop and think about that for just a minute.

I WILL NEVER NOT HAVE CANCER.

I am angry about this.

The fact that there is no cure right now, for me, is infuriating and devastating.

Any time I’m reminded of my impending mortality, it cuts my heart open again.

Any time I’m reminded that I won’t get the chance to see my children reach adulthood, I am overcome.

That’s quite a bit of feeling roiling around, all the time, just beneath the surface.  It honestly doesn’t take much for those feelings to come out, to boil over.  Sometimes that comes out in unkind ways, as much as I try not to.  Being a terminal cancer patient is freaking hard.

As I struggled with my feelings about the label survivor when I was diagnosed in 2017 and all things cancery, I began following Beth Caldwell’s blog at The Cult of Perfect Motherhood (it’s more than amazing!).  She utilized the following analogies to help explain why she did not subscribe to the label “survivor” for herself …

“Let me use an analogy, because y’all know I love analogies. Say you’re in a plane crash, but you don’t die instantly–instead, you linger on in a coma for a day or two, and then you die. Would you say that you survived the plane crash? Of course not, because you died. That day or two of suffering from your injuries doesn’t change the fact that the plane crash was the cause of your death. You didn’t survive that plane crash, you died from it. It killed you.

Or how about another analogy: my grandfather served as a bombardier in the Korean War, but he died when his plane went down during a bombing mission. Would we say he survived the war? Of course not, he died in the war. That he flew quite a few missions before he died doesn’t make him a survivor of the Korean War.

Well, that’s what metastatic breast cancer is like. We might not die right away–we might suffer through treatments for a while, but eventually, nearly all of us will die of our disease, and 100% of us will die with our disease, because it is incurable. So, how can I be a survivor of cancer? I can’t, of course. How can you survive something that will eventually kill you?

For me, hearing the word survivor is a constant reminder that I’m different from non-terminal folks. It’s a button that people push, a button that says “That will never be you. You’re going to die.” I don’t really enjoy thinking about my death if I don’t have to, so I wish people would stop reminding me of what will never be. I will never be cured. I will not survive my disease. And you’d be surprised how often you see the word “survivor” in cancerland. Yesterday was some sort of national survivor day, and I know of two cancer conferences that happened over the weekend with the word “survivor” in their name. I didn’t attend either of these conferences. Just hearing the title of them turns me off and makes me feel like they aren’t for me.” **

Beth was a great writer and the world is poorer for her absence–I wish I had had a chance to meet her before Cancer murdered her.

Beth’s words resonated with me the first time I read her blog and still do.

Beth’s analogies laid out a logical explanation for why the word “survivor” just didn’t work for her and doesn’t for me either.  In fact, after I dug deeper into my feelings and examined the foundation underlying them, I think I resent it more now that I’ve considered it carefully.

Bottom line for me, that word is the embodiment of what I can’t have; what will never be for me. That word highlights how I am excluded from the celebrations, the bell ringing and and the fluffy pink tutus.  That word highlights that unless there is a breakthrough in research, I will never be cured.

I fully take responsibility for my own relationship with the word, “survivor.”  That’s my issue, my opinion, my perspective.  If no one agrees with me, that’s ok.  If this explanation resonates with no other person in the world, that’s just fine.  The point of the matter is that this is how I view the world.  This is how I view how I fit into the world.  This is part of how I cope with having a terminal illness.

Just don’t call me a survivor.

** You can read Beth’s full post about being a survivor here: http://metup.org/index.php/about-us/not-a-survivor/.