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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.

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?

2019 Blog Entries

As some of my readers (all 2 or 3 of you) have noticed, I’ve mostly been posting updates that were originally posted on my Caring Bridge site in 2017 and early 2018.   While I do enjoy that platform, I think a more formal and more public blog is more my speed now.  That wasn’t the case early on, so this is a change for me.  Anyway, I’ve posted everything on this new platform from Caring Bridge and am now drafting and posting original thoughts, musings, experiences, etc.  From now on, I’ll mostly be posting weekly as I’m sure no one wants to  read a post every day and I simply don’t have that much material or the time to be posting something every day.  So, watch for an notification of weekly posts with some other random stuff thrown in for good measure.  Thanks for reading!!

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.

Happy New Year, 2019

2019 is here.  Each new season and calendar change means something very different to me now.  When I was young, I felt the frustration and anticipation of yearning to be older and for time to pass more quickly.  As I’ve gotten older, time seems to move too fast sometimes and not fast enough at other times.

After I had children, I kept coming across the saying … “The Days are Long, but the Years are Short.”  This statement is so true–sometimes each day can seem to last forever, yet we blink and the children are taller, older, more capable, etc.

Once I knew that my lifespan will be cut amazingly short, time has taken on a new meaning.  I struggle to remain in the moment at times and other times, I can’t bear to see the moments end.  I sometimes visualize what my boys will look like when they are older, what their children might look like, who they might choose to spend their lives with.  Sometimes that is too hard because I will most likely miss that.

If some of most recent studies on lifespans is accurate and my cancer stays in my bones, I can hope for a life expectancy of approximately ten (10) years.  Next March will be my 2 year cancerversary, so that means about 8 years left.  This is better than the 2-3 year median life expectancy of breast cancer overall, but that is still nowhere near enough time.

With these thoughts swirling around in my head, I sat down to think about my word of the year for 2019.  My word for 2018 was JOY and that reminded me to find the joy in the every day moments, to look for joy in the moments that did not seem joyful.  I meditated on that word for 2018 and found that if I truly looked for joy, I found it.  I found joy even during the most difficult days.  I read once that what is inside will spill out, so if you are an angry person, when tested anger will come out; that if you are joyful and hopeful, when you are stressed, that’s what will spill out.  I’m still very angry, but I’m working on filling up on good things so that’s what comes out.

For 2019, my word is EMBRACE.   This could mean taking me out of my Midwestern bubble to embrace others physically (all of the embracing and touching expected down here in Miami is such a stretch for me!) or to embrace new adventures or to embrace this new life that includes terminal cancer.  I will know more at the end of the year what God intends for me to experience in 2019.  Whatever it is, I know that it will be an entertaining adventure that will stretch me beyond my wildest dreams!!

Happy New Year!

New Year’s Eve, so long 2018

2017 was a doozy, probably the worst year of my life to date.  2018 has been quite a different animal. Yes, there have been some hard days and the adjustment to living life after the traditionally active treatment (i.e., IV chemo) has been rough at times; at the same time, we’ve finally figured a few things out …

  1. We’ve re-discovered that living life closely with family can have ups and downs.  As many of you are aware, after my diagnosis in 2017, my husband, two kiddos and I moved from Orlando to Miami, Florida to live with my parents.  Living close by is my sister, who also relocated to Miami from New York, my other sister, who already lived here in Miami, and my youngest brother, who already lived here in Miami.  Having this much close family time for the first time in decades has brought it’s own challenges and navigating those issues as adults is very different from when we were kids.
  2. We’ve discovered that as soon as things seem stable and quiet, things change!  One of my sons has been in three different schools in 2018.  None of that was his fault and he’s in the best possible place for him now, but the movement during the year and the time he spent outside of school while in the throes of toilet learning were … challenging to say the least.
  3. We’ve discovered that while cancer has changed the fabric of our family in big ways, we are all the same people underneath.  As we’ve reclaimed some normalcy in our lives, we’ve seen glimpses and clear pictures of what is different and what remains the same.  So many important things are still the same.
  4. We’ve discovered that both old and new friends can be just as important and meaningful.  Old friends know who we were before cancer took over our lives but have a hard time understanding how much has changed.  New friends know all about how cancer has irrevocably changed our lives but have a hard time understanding who we were before those fateful words.  Both sets of people are important and need to be prioritized differently.
  5. We’ve discovered that being a part of the right community is important for the whole family.  It has taken us a bit of time to find that community, but I think we have found a place where we are all supported and we can be friends with other families.  A “play date” with a bunch of boys is a little different from “play dates” with girls, but we’re figuring out how to make it work for everyone.
  6. We’ve discovered that I find just as much to do to keep myself busy being a stay at home mom as when I was working.  Its different hours and my priorities are far different, but finding my place in cancer advocacy has been an important part of feeling useful and productive.

At the end of the day, family is the most important.  At the end of the day, the boys being healthy, learning to be authentic and growing up with the values we consider important is so key.  If we can help others along the way, then so much better.  Here’s to ringing in 2019 with a much better outlook on life than 365 days ago!

Compromised Immunity

I have understood for some time that I have a compromised immune system.  It’s hard to ignore when I go to the doctor’s office at least monthly to have bloodwork done and the lab always calls my doctor’s office right away to report the feeble amounts of white blood cells detected.  Learning the medical terms and becoming well versed in the complicated way my own body reacts to the toxicity of the medication that I take every day has become a whole other learning experience.

I’ve always had a strong immune system or maybe I’ve just deluded myself into thinking that.  I would get the colds or flu “going around” especially now that I have kiddos, but I would typically be the last one to get sick and usually it would last the least amount of time.  My husband would chide me regularly for the fact that I didn’t have a primary care physician.  I never missed my yearly well woman visits and would go to urgent care if there was a serious issue, for instance, when I had walking pneumonia or when I had mono.

Now that my immune system is compromised, I still don’t get colds or ordinary stuff, I get weird stuff.  Like the two strains of E.Coli my GI doctor recently discovered.  One was no big deal, but the other one is aggressive and called for immediate treatment; however, the treatment could cause my tendons to rupture and since I take medication that makes my tendons swell, this is a real issue.  I had no idea that antibiotics have a risk of tendon rupture.  I did stop reading all the inserts that come with the medication because it’s terrifying.

My neurologist also discovered that not only do I have a strep infection hanging around in my nasal passages, I also have MARCONS, which is similar to MRSA and is highly antibiotic resistant.  Google and I have a complicated relationship–while I appreciate all the information at my fingertips, I also scare myself regularly.

I do my best to be a compliant patient and I work hard to follow the doctor’s instructions and stay consistent with my medication.  When the boys are sick, though, they need their mamma and if that means I end up having to take more medication, then so be it.  Priorities, you see, are still important, even if you have a terminal illness and are immunocompromised.