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Mother’s Day 2019

May, 2019 is the third Mother’s Day I will celebrate with cancer. It’s only the second Mother’s Day I will celebrate since knowing that I was de novo metastatic (meaning from the beginning) since it took a few months to figure that out after the initial bombshell in March, 2017.

Every holiday since cancer, especially metastatic breast cancer, takes on a new significance. Every time, I can’t help but wonder whether this is the last of whatever holiday it is that I will celebrate. Every time, I go a little more overboard in celebrating just in case it really is the last time. Every time, I have to consciously look away from the storm clouds gathering overhead, especially when a scan or other treatment is coming up.

As a daughter, I hope the celebrations and gifts for my mom have gotten better over the years. My mom is pretty forgiving and accepting of our efforts over the years, even the misguided ones. It makes my heart smile a little seeing how she has kept a variety of the trinkets and projects I made over the years for her. One of our most memorable mother’s days, for me, was driving together (just my mom and me) from Virginia to Florida after I graduated from law school. Being one of six means that we all rarely got our mother’s undivided attention. Her attention was and is priceless and coveted. Being the eldest means I still have 18 months of her undivided attention more than any of my siblings.

A few mother’s days stick out for me since becoming a mother myself. My first Mother’s Day as a new mom in 2013 when j finally got to celebrate as a mom. My first as a mother of two when we came home from the hospital on Mother’s Day in 2015 and I tandem nursed my boys for the first time, marveling at how HUGE my 2 year old eldest looked compared to his newborn brother. The very first gift I received on Mother’s Day that my son made for me at school, which I display proudly on my piano to this day. Since Mother’s Day happens during the school year, there are usually celebrations and trinkets and fun activities with the kiddos.

Each of these celebrations were and are a salve to the wound of watching other women celebrate Mother’s Day when I ached to hold a child in my arms. Each of these celebrations remind me how lucky I am to have an amazing role model in my own mom.

The older I get, the closer I get to the end of my life, the more I treasure time. Time to be with those that I love. Time to celebrate milestones and time to impart important lessons I’ve learned.

This Mother’s Day and every day, I am reminded to be grateful for the mothering I’ve received, grateful to be gifted the opportunity to be a mother to my boys and the awe-Inspiring responsibility it is to be a mother. I’m also reminded of those mother’s days when I longed to be a mom and my heart hurts for those families that feel incomplete.

Today, and every day, thank those people in your life who show love, who nurture without thoughts of reciprocation and who make life and love beautiful. Those people don’t have to be moms, dads are pretty good at nurturing too, as are Aunts and Grandmas and people who give freely of themselves. After all, Mother’s Day is just a made up holiday anyway. 😉

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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.

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.

Scanxiety

When I was initially diagnosed, I began seeing this term in many of my support groups.  I’m sure it’s no surprise to anyone that cancer metsters/thrivers have their own jargon that helps to explain the shared experiences.   It’s sometimes like learning a new language, especially the acronyms.  I’ve also found that the jargon changes in various parts of the country and the world (for example, in the UK, metastatic cancer is referred to as secondary cancer).

Some background/context …

When one is in “active treatment,” which usually involves IV chemo, the scans happen all the time.  When I say all the time, I really mean all the time.  I had so many MRIs and CTs and bone scans and x-rays crammed into a month or two in 2017, I’m surprised I’m not glowing.

And then, you fall off a cliff.

The end of “active treatment” really does feel like free falling without a parachute or any knowledge of how far down the bottom actually is.

Even though “active treatment” can be overwhelming and painful and horrifying and will forever be blurry because of all the medication, it also feels productive.  With each and every IV or pill or even the side effects, it feels like something is being DONE about the crazy cancer cells.  Family and friends rally around you, meals are delivered, and even though sometimes putting one foot in front of the other takes strength you didn’t know you had, it can feel triumphant when you reach each milestone.

And then it stops.

Well, treatment never really stops for us metsters, but everything slows waaaaayyyyy down once that initial “active treatment” ends. Scans go from weekly to monthly to quarterly and, now, every 6 months for me.  Check ins with the medical oncologist become spread out too and the safety net that you began to expect, to rely upon, is missing.

At first, that return to “real life” where cancer isn’t front and center, feels like you are visiting an alternate reality or even another planet.  All of a sudden, you have to do laundry and figure out what’s for dinner (actually, I still don’t do this, thanks, Mom!!!) and get everyone up in the morning and settle sibling squabbles. What?!?

Life just goes on and you settle into something that resembles life, irrevocably altered, but routine and “normal.”  This season is seductive.  It’s easy to think, maybe I dreamed it. Maybe it was a mistake.  Maybe I don’t really have cancer.  Maybe everything is all good now.

And then another scan comes up on the calendar.

I found the picture I pinned at the top of this post at some point while browsing online and I love it.  Scanxiety is usually defined as “uneasiness waiting for the results of scans after cancer treatment.”  Since I’ll never be done with treatment, I usually think of scanxiety as the uneasiness waiting for the results of scans after active treatment is completed in order to determine whether progression has occurred.  Maybe I’ll think of a way to make that more catchy and less wordy, but it’s a doozy.  Like really awful.

For those of us living with cancer, scanxiety truly isn’t about being afraid of the unknown, but worrying about a reoccurance of the most horrible thing that’s ever happened.  Once the news of a cancer diagnosis has turned your life upside down, there is no longer the ability to live or think as though the worst won’t happen, that the sky won’t fall again.  Once that has happened, it feels imminent, at every moment.  Every ache, every pain, every time something feels weird, the inescapable conclusion is that it must be back, it must be growing, it must be taking over and maybe this time is the last time, this time is when it will kill me.

The only way to cope is through.  The only way to calm the racing thoughts is to get the call that everything is ok, or everything is not ok, but at least you have the answer and know what you are facing.

The next time you hear that someone is facing a scan, that someone will be learning about whether they will have a reprieve from the cancer that infects their body, understand that that person is barely holding themselves upright.  Offer to help.  Offer a hug, offer a distraction, offer your presence. Check on them and then check again.

They need it.

Holding Space

I had never heard of this concept before my cancer diagnosis and I must confess, I SUCK at holding space.  I have a hard time sitting still and so much of the time I spend listening to people, I’m thinking of how I can help them, how I can meet their needs.  Just sitting in silence or just listening to “hold space” for a person is a skill that I’m still working on.  Turning off my brain and my instincts to “DO” something about whatever is being discussed is really hard.

When I first heard of this term, I thought it sounded weird.  I’m such a literal, grounded person, that anything more subjective is often difficult to grasp at first.  As I’ve spent more time in yoga and thinking about holding space, I think it’s more helpful to me to think about what it’s not.

Holding Space is NOT ….

  1. Thinking about a witty response while half-listening to the other person.
  2. Jumping in with a story about yourself or your dog or brother or friend or whoever.
  3. Telling the other person what to do with the information they are sharing.
  4. Interrupting the other person at any point.
  5. Checking your watch and wondering when the tirade or the venting or kvetching, etc. will end.
  6. Any combination of the above five (5) no-nos.

I read in an article that I cannot find now to give proper credit that in order to hold space for someone else, you have to be able to hold space for yourself.  This view of holding space for yourself, this author suggested, was linked to the concept of self-compassion.  In other words, in order to have empathy and compassion for others, you must be able to apply that to yourself.  Being gentle with yourself, being kind in your “self-talk” and accepting that you are who you are, faults and all is a major first step before you can do the same for others.

Maybe that’s part of why I’ve had to get to a different place in my life to be able to hold space for others.  Or maybe my own life choices meant that I was never the person that others went to for holding space. As a litigator, my job was to tell people what to do and then fight for whatever it was that I was hired to do.  I was always doing.  I was always asked to be doing.

Now, not so much.

I do help as much as I can when I’m asked (and sometimes when I’m not asked!), but that part of my life has changed significantly.  Because of the people in my life who hold space for me, I can see the value in this practice, in this skill.  I see how powerful and impactful holding space can be because it has been modeled to me.

So, today, I recommit myself to practicing holding space.  Holding space for myself, for my husband, for my children, for my family, for my friends, for my fellow metsters.  I’m so much more comfortable doing something, but until then, I will hold space.

An open letter to my youngest on his 4th birthday

M, when you came into the world, it wasn’t as I’d planned.  Yes, I’m a planner, and I so wanted your birth to be idyllic and empowering and lovely and calm. 

You had other plans. 

After 26 hours of labor (with quite a few unmedicated hours of back labor because you decided to turn around) and an emergency C-Section, since the cord was wrapped around your neck and arm, you were whisked away to the NICU for some time to ensure that you were ok.  Thank God you were, but little did we know that your momentous entry into the world was simply a foreshadowing of the person that you are.

You are amazing.

You are confident.

You are a force to be reckoned with.

You know no boundaries.

You view an obstacle as simply something to be conquered.

You hear no as an opportunity to try something new.

You jump in with both feet, literally.

You run headlong into new situations, new people, new adventures.

I forget sometimes that you are still little and are now just four (4) years old.  We’ve worked hard not to compare you with your older brother, especially because we know how much you look up to him and want to be like him.  You are your own person, delightfully unique and wonderfully gifted.  There are no boring moments with you around and you are quite well aware that a cute look or hugs or kisses can often soften the upset adult when you’ve done something extra dangerous.

You are entirely extra. Extra boisterous; extra loving; extra adventurous; extra loyal; extra perfect for us, your family.

We can’t wait to see what you will accomplish with your life.  It will be stupendous, it will be awe-inspiring, it will likely be full of risk, and it will be all you.  You can do whatever you have decided to do and your Dad, brother and I will be there to cheer you on every step of the way.

Happy 4th Birthday to the amazing little boy who completed our family.

Love Always,

Mom

xoxo

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. 😉