Overstuffed

Do you ever just need a break from your life?

The last few weeks have been challenging, to put it mildly. I feel as though I’ve been darting around stressors and issues like a gawky teenager in a dodgeball game. After finally being hit smack in the face, I am calling uncle!

This morning as I was driving into work, I thought about how deeply I’ve been letting things get to me lately. And how much more negatively I’ve been seeing the world and even my life because of it. This is not me. I have prided myself on my growth as an adult and my ability to still seek out the positive even in the most trying times. Falling down the rabbit hole of despair is not how I choose to spend the time I have left to me on this Earth. Yet, how do you pull yourself back up when the bad hooks to you like an anchor?

Rip off the Velcro of Negativity

Every little thing, and most of them are little, that causes you grief attaches itself to your person like stepping in hot bubblegum. (I am heavy on analogies today.) That bill you are having a hard time paying? The argument you got into with a family member? Stress at work, stress of kids or spouse, your house that needs a hazmat unit to come in and clean it. All of these things build up to become one large storm of stress and negativity. Now sprinkle that sundae with a cancer topping and you have a recipe for an historic melt down.

I have been in the thick of my own for weeks and have not been able to shake it off. So instead of looking at everything piling up as one big tornado, taking my happy mood and goodwill toward man with it, I decided to break down each one and tried to see it in a different light. This is something that is a learned practice for me and one I’ve been improving upon for years. I don’t want to be the frowning faced lady with cancer. That is not how I see myself and it surely isn’t the memory of me I want to leave behind.

Turn that Frown Upside Down

So what is stressing me out, driving me mad, and making me miserable right now? Let’s take work first…this time of year is always stressful at my job. Deadlines to meet, performance reviews to write, and audits to perform well at. I have been pulling my hair out and working myself to the point of exhaustion every day. But aside from the negative aspects, how can I set this into a positive motion? For one, I love my job, I always have. I am so lucky not only to enjoy my work, but to also love the people I work with. My work family has become a cornerstone of my life and I am thankful every day for them. I am also lucky, and I know how fortunate I am, that I am still able to work with my illness. I have the support and trust of my colleagues as well as the empathy from my upper management. When I remember this, work doesn’t seem so antagonizing after all. I am placing additional stress on myself because I want to do a good job for those reasons.

How about that argument with a family member? I think family and cancer is probably the most difficult dynamic to navigate. Some are afraid to hear about it, afraid to ask, or don’t know how to approach it. This can be taken as uncaring, however that is probably stemmed from my own insecurities. Then there are those that need to be seen as the caring, unwavering, member of the support system when the truth is, they really don’t want anything more than to be included in the attention a cancer diagnosis brings. Without going into specific details, I am madder at myself in this situation than the other party involved. I had so wanted to believe that things had changed, that old hurts were memories, and that we’d learned from our mistakes. I was naïve. I allowed myself to be pushed right back into a familiar situation and this time? I carried my son right in there with me. The fact is that some people, even those who claim to love you, will never respect the boundaries you set. Sometimes when you open that door a crack, they come barreling through like a bull in a china shop. The realization I have come to is that I need to forgive myself. I can’t blame myself for taking a risk and believing in the best just because it didn’t work out the way I had hoped.

Don’t Say Cancer is a Gift

Of course, beneath all of this is the boogeyman under my bed. Cancer. Cancer is hard to put a positive spin on, because really? Between the pain, the pills, the appointments, the fatigue, and of course those damn medical bills, there is nothing positive about cancer. One day I am riding a mechanical bull in Las Vegas (bucket list check) and three days later, I have treatment and  difficulty walking. Every day you wake up and do a mental check-up, what hurts, what doesn’t, and what kind of day can I hope to have in respect to that. By the time I roll out of bed, I am already doing a mental calculation in my head to see if I’ll be able to squeeze in a nap later that day. #napqueen

I may not be able to bring forth any positives about cancer itself, but I can bring about positives that have come up in my life the last four years as a result of my MBC diagnosis. First and always, I have met some of the most amazing people, some of the best friends I could ever hope to have, through this awful disease. Friends so strong, so full of life and love, that you would almost not believe they were ill if you didn’t also share in their darkest moments. I am forever grateful for each of them.

I have also found my voice in a way I never understood was possible. Most of my life has been spent trying to make other people happy without really knowing what would make me happy. I have allowed myself to be mistreated, minimized, and manipulated. Even understanding it was happening at the time, I never knew how to stand up for myself, to speak up. That is completely foreign to me now. When you are told your life will be cut short for whatever reason, you find that you do not have time to waste. I am very conscious of my time and how I spend it, including who I spend it with. Someone who brings me down is not someone I choose to waste time on and I no longer have a problem saying it. I will always be a people pleaser at heart, however I now include myself in that conversation.

I have discovered freedom, fulfillment, travel, and the pleasure of having my time to spend how I want it. Depending on the day, it may be a Netflix binge and pizza, another margaritas and dancing. Cancer has forced me to be present, every day, and I don’t want to waste that focusing on the things that bring me down. It is easy to get overwhelmed, but you don’t have to lie there letting things continue to pile upon you. Break it down, one by one, and find the balance. There is one. Things wouldn’t feel so terrible if there wasn’t something wonderful to compare it to.

Find your balance and focus on the upswing.

*Notice I never went back to talk about my dirty house. It’s a disaster. But I’m choosing to focus on the fact that it is lived in with love and creativity. It’s not a mess if it’s for creative purposes, right?

 

**And Colin, if you are reading this, know you are the light of my life. You drive me insane. Like, bang my head against the wall crazy, but you are the funniest, big hearted, and loving boy. You CAN do your homework; you just don’t want to. You are so smart and make me so proud. I love you more than all of the stars in the sky. I always will.

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Don’t Tell Me You’ll Be There

Don’t tell me you’ll be there for me. Don’t say I can depend on you.  Out of the numerous family and friends who have made that statement, I can count on one hand those who actually mean it.  So don’t say it…and I won’t be let down when I realize you don’t really mean it.

It is often said that living with a life threatening illness is an interesting dichotomy. On one side, you have those people who have said they would show up for you and really do.  The other, not so much.  For those of us living this life, we understand that for everyone, life goes on.  We all have our priorities and our own challenges to deal with.  I know I do not begrudge anyone for living their lives as they choose just as I choose to live my life my way.  The rub is that I am consciously aware of my mortality, all of the time.  My challenges are life and death, pain and well-being, fear and peace.

I wish my biggest worries were money, job headaches, and weight gain.

As stressful as those things can be, I now reflect on those trials with a fond innocence. Oh to be worried about bills and nothing else, how cute I was. I do not place the level of importance on them that used to consume me.  When staring your mortality in the face, you realize with all certainty that the only important thing is your relationships with people.  That being said, when those relationships fail you, it is all the more deeply felt.

Expectation is the root of disappointment.

In my heart and my perspective, I have never had the ideal relationship with my family. I love them.  I know on some level that they love me. Some I am closer to than others and some I have sporadic contact with, at best.  And some, well, some seem to go out of their way to make my life harder or more dramatic than it already is.

I learned a long time ago that you cannot expect anyone, especially family, to treat you the way you treat them. To love you as you love them.  Or even to place the importance of your relationship with them on the same level that you do.  Because of that, I have found myself retreating from some of these relationships as a kind of defense mechanism.  If I don’t expect you to be there for me, it won’t hurt as much when you aren’t.

I Cannot, Will Not, Do it Anymore

Have you ever had someone in your life that acts like tragedy is a competition? My illness is worse than yours.  I know you have cancer, but this headache, back ache, knee ache just won’t go away.  If you have experienced this, then you know how exhausting it can be when you are already exhausted from the universe having its way with you.  I can’t do it anymore.  I made the choice a while back that unless someone is adding something positive to my life, then stay away from me.  I will not go down that rabbit hole of someone else’s desperate attempt at martyrdom.

How about the people who get mad at you for irrational or petty reasons? All I can say to that is bye, Felicia.  These are not the people who genuinely care for you.  These are the people who crave attention.  Narcissists who have no logical reason to try to cause you distress other than their own irrational need for controversy.  Be mad at me, I really do not care anymore, because if you were really in my corner?  Petty issues that upset you would be discussed, not lashed out at.  I would not have to see passive aggressive attempts to get my attention for a contrived slight.  I know I’m not perfect and I make mistakes as much as anyone.  I own my errors and would be happy to have a rational discussion about it, especially with someone to whom there was mutual love and respect.  But four years after a terminal cancer diagnosis and I am a no- drama-llama all day.

Never Enough Time

We are all here on this Earth for a very short time. A blink in the eye of the universe.  Whether you are facing a life-threatening illness or not, at the end there is never enough time.  I, and most other metastatic cancer patients, understand this on a fundamental level.  We have gotten used to the people who disappear from our lives.  Personally, I am okay with it.  I respect that life goes on and I respect their choice not to make my issues a priority in theirs.  Go on your way with love and fondness.  But, please, do not pretend, do not make promises, and do not give me hope to expect something more from you than you are capable of giving.

Life can be hard for all of us. We all have struggles, challenges, and fears.  I do not choose to live my life in that zone.  I choose to live in hope, positivity, and action.  I choose happiness over sadness and peace over distress. My life and my circle of friends and family have SHOWN UP.  They said they would and they did, they do, every time.  I am content and my peace of mind is my sanctuary, my home.  Do not come into my home and disrupt that.  I am real, I am ME, and I am not changing.  I love the woman I have grown to be and everything that has gotten me to this point…even cancer.

You do not have to. And, I won’t expect you to.  We will not disappoint each other.

To my friends, my true family, those of you that I’d swim through shark infested water for (well, maybe those sharks that don’t have teeth, but you know…), I appreciate every day that you are THERE. Whether we met two years ago on the internet or have known each other most of our lives, you have taught me what it means to be loved and respected unconditionally.  I take that lesson to heart and put it back out into the universe, to you.  Never underestimate the importance of your relationships.  At the end of your life, that is what you’ll be thinking of, that is what matters.

 

And to my beautiful boy…Colin, if you are reading this, I love you more than all of the stars in the sky.  You are my favorite everything, but please, please stop playing Fortnite.

Living Honestly

Sitting up, wide-awake and late one night, I did some deep thinking. I made an effort to be consciously honest with myself.  What are my priorities?  What do I still want to accomplish?  What is my biggest fear?

Recently, I was told that I might be at the end of the line for my available targeted therapies. My doctor bluntly stated that I had “blown through them too quickly” leaving my next options to be strictly chemotherapy.  My last and most recent appointment showed that my tumor markers had doubled within the month and my pain had noticeably increased.  Like hardly able to walk, increased.  Because of these two things, I was referred to a radiation oncologist for some “spot welding” as my doctor calls it.

Somehow, I had lucked out in my nine-year history with breast cancer and had never experienced radiation before. All I knew were the horror stories relayed by my friends of horrible skin burns, fatigue, pain and further discomfort.  As with anything unknown, I was terrified.  The whole thing makes no sense to me. You are flooding part of your body with radiation hoping it kills cancer cells.  Doesn’t radiation cause cancer?  Not to mention that they take X-rays every day prior to starting the radiation.  I felt like Chernobyl walking.

Regardless, I found myself lying on what looked like a CT scan table, naked from the waist down. Oh, hi strangers, no this isn’t awkward at all.  X-rays were taken, marks were drawn with sharpies, and eventually tiny tattoo dots were placed mapping the area to be struck with radiation.  I was terrified to move in case they missed their target and hit my intestine or colon, the doctor having told me that they wanted to make sure not to hit those areas as that would be bad.  Just that…it would be bad.

I was told I would have ten rounds, or every day for two weeks. Later, I found out that this was really nothing considering I met a woman there who was on her seventeenth week.  I began to feel dumb for making such a fuss about it.  However, here is where it gets cool…after the fourth day, I began to feel…better.  The pain had noticeably decreased. I was overwhelmed with fatigue, but the pain had definitely lessened.

During all of this, I found myself in a very dark place. I was just sad. I have never been one to wallow in my moods, but I feel I did a fair share of wallowing over those two weeks.  Maybe even the last month.  So instead of letting fear set my navigational compass, I asked myself the three questions above and really listened to my answers and myself.

What are my priorities?

Obviously, my number one priority always has been and always be my son. Being the best mother I can be and leaving a lasting impression on him is my everyday goal.  That being said, I also need to be better about self-care.  I push myself too hard.  I am so used to having to do everything myself and I resent not being able to do the things I once did, so I push to the point of breaking.  I should not, nor do I want to do that to myself any more.  What I once felt was lazy, is now a much needed self-care day of rest and restoration.

Continuing to work and doing well at my job remains a priority to me. Do I lose sleep over an unfinished report or that one thing I forgot to do that day?  No.  Not at all.  My career gives me an outlet and opportunity to keep some normalcy in my life.  It also affords me to live comfortably and give my son great experiences.  I am proud of my work, but my life happens when I am home.  I do not live to work.

My friendships are another of my great priorities. For the friends who want to be here, that is.  All of us in the breast cancer community have lost friends and family members who, for whatever reason, cannot handle being present for our cancer experiences.  It hurts at first until you remember to show them the door.  I will not ever waste a moment of time chasing people so they are still in my life in some capacity.  I would rather save my energy to have great moments with my friends and family that are still here.

What do I still want to accomplish?

I have realized that I no longer have grand quests to conquer. My accomplishments are much more narrow and close to home.  For instance, I really want to re-paint my bathroom;  What I was thinking with that green is beyond me now.  I want to read more books.  I want to travel and show my son places he will always remember having been with me.  I want to grow my hair out (I think…maybe not). I want to start painting again and find that creative spirit that has been lying dormant inside me for too long.

Large-scale goals are great, but I have found that it puts too much pressure on me. I do not like having the stress of something lingering that I need to do.  I want to do those little things that fill me up and give me satisfaction.  I am not giving up by any means, but I am trying to let go of the control I so badly want to have on my life.  I am learning to meditate and with it, to let go of things that do not fill me positively.

What is my biggest fear?

Recently, I posted a graphic on my social media pages with the admittance “my biggest fear is being forgotten”. For me, this is the core of my fears in this life.  I cannot control my death, either the when or the how, and I have come to accept that.  I fear death, of course, and that great unknown that all of us will eventually face.  However, my biggest fear comes from the thought that someday (hopefully a long time from now) my son may forget my voice, my laugh, my smell, or how it felt when I held him.  He may have that moment where he realizes he forgets something about me, and it crushes me to think of his pain.

A lot of us, myself included, feel forgotten already by our families, friends, and spouses. Feeling forgotten in life makes it so difficult to have sympathy for those you know will be sad at your passing, yet they do not attempt to be in your life now.  This may be where this fear comes from or it may just be a mother’s lament.  Yet, I have realized that this fear has been my motivation for the last four years.  It is there in everything I do, every picture I take, and every word I write.  It is my way of trying to leave something of me behind.

What now?

Feeling as if I am in a good place, I am going forward reminding myself of the things that matter most to me. I am going to travel as much as I can.  I am going to paint that ugly bathroom.  I will show up at work and give it my all, and then I will go home and be the best mom I can be.  I will not fear what comes next in my treatment, whether I get some more mileage out of this medication after completing radiation or if I have to move on to chemotherapy.  And I am going to keep taking pictures, videos, and anything else I want to document not just my life, but my and my son’s life together.  Self-care starts with admitting to yourself what you really need…this is the first step in mine.

 

 

*Colin, if you are reading this, I love you more than all of the stars in the sky. My sweet boy.

A Mother’s Day

Yesterday was my third Mother’s Day since my metastatic breast cancer diagnosis. I spent the day exactly as I wanted to, with my son.  For being such a commercial holiday, it really does stir up a tornado of emotions.  I am elated to be here with him, to be a mother. I know how fortunate that I am in that regard, for I, too, was told that I would never be able to have children.

In July of 2009, I received my first breast cancer diagnosis. Although it was early, stage 1b, my oncologist dutifully went over the effects treatment would have on my body.  The hardest pill to swallow was being told that I would likely never have a child, the chemotherapy putting me into early menopause from which it was unlikely I would ever rebound.  Having discussed with my doctor my prior attempts, and failures including a very early miscarriage in 2008, and desire to have a child, he stated that I could look into having my eggs harvested.  That decision would delay any efforts to combat the disease, as chemotherapy would have to wait until that was completed. Obviously terrified, I scheduled my bilateral mastectomy and chemotherapy start dates.

Stolen Dreams

I had always dreamed of being a mother. Never the girl to picture the big wedding and fantasy spouse, my priority always lay with my career, my house, and stability.  I took for granted that I would have a child someday, even researching into sperm donations should I end up walking that path alone.  In my early twenties, I remember dreaming of a blue eyed boy with curly blonde hair that I was mother to…it was so real, I can still see it in my mind.  To be told I would never have the chance to meet that boy was a life altering heartbreak.

Imagine my surprise when, the month following chemo’s end, I found myself with a regular menstrual cycle. For three months, I was like clockwork, leading me to think that not all hope might be lost.  Nevertheless, it was a quiet hope, one I did not even voice aloud to my husband at the time.  Trying as hard as I could not to think about it, I found myself crying, on Mother’s Day of 2010 to be exact, because my cycle did not come that month.  Tearfully, I admitted to my husband that it must have been a fluke getting it the last few months.  I finally admitted that my sorrow lay in not being able to have a child.

A few days later, still nothing. In the past, when I had been trying actively to get pregnant, every time I would take a pregnancy test, I would start my period.  So I figured, I had a test laying around…might as well take it to be sure.  Maybe it will bring it on and I can stop torturing myself, right?  Imagine my surprise when those two little lines showed right up.

I’m pregnant!

What do I do now? Have a mild meltdown, it turns out. My mood went from instant sadness to elation, to raw, primal protectiveness.  I called my OB/Gyn for an immediate appointment, after all, it had only been about three months since my last chemotherapy treatment.  What if there were lingering toxins in my body that hurt the baby?  What if, like the last one, I lost this baby too?  All of the common fears at becoming a parent ran through my head, but most of all I felt a sureness that this was my baby, my son.

He may not have curly hair, but he is definitely my blue-eyed wonder. I have said many times, that I believe that I had to go through what I did to be able to bring my son into this world.  For whatever reason, it was not happening prior to my early stage diagnosis.  I have also said numerous times, that I would do it over, all of it, if that were what it took to be his mother.  To bring this boy into this world has always been my purpose.  It is what I am most proud of in my life.  He is my life.

What I did not realize in speaking those words aloud, was that the universe was listening and apparently felt the need to call my bluff. Cue my metastatic diagnosis when my son was just three years old.  A mother’s life is a constant battle between wanting to protect your child from the world and wanting them to be capable of navigating that world when they are grown.  How do you do either of those things when you know you are dying, that you may be leaving them when they aren’t yet prepared, won’t understand, and likely will not recover from the loss?

Which is worse…not being able to have children at all? Or having them, but knowing you are going to cause them possibly the greatest sorrow of their lives?

Selfishly, I still would not change a thing about my life, because of my son. I do not want to ever leave him and I will do everything in my power to delay that moment as long as I can.  I hate, hate, the thought of him growing up without his mother.  Weddings, graduation, childbirth, all with a black cloud of my absence over them.  I cannot stand the thought of my baby in pain because of me.  I also know the only thing I can do about it is love him NOW.  I try, every day, to love him so much that he will never not feel it, even when I am gone.  I take pictures and video of us together so he will never forget what I look like or the sound of my voice.  I even write all of these words so that one day, he can go back and read them if he wants to.  These thoughts fill up my day, every day.

Now that another Mother’s Day has passed, I can only hope to be here for the next one. My heart goes out to all of the mothers with this horrific reality, struggling to hold onto their babies as much as time will allow.  In addition, my heart goes out equally to those who wish so badly for their own baby to hold onto.  Both situations, and everything in between, are so hard in this life.  Neither are to be made light of.

 

And Colin, if you are reading this, I love you more than all of the stars in the sky, my sweet boy.

A Case of the Blahs

It has been three years and eight months since I was told that my breast cancer had not only recurred, but had metastasized to my bones.  All this time spent with my mortality staring me in the face, precariously perched on the edge of a precipice.  Over three years of being grateful to wake up, yet waiting for the other shoe to drop.

I know I am one of the lucky ones.

With the median life expectancy for metastatic breast cancer at 36 months, I know how lucky I am to be here, to have woken up today.  I got up, showered, took my son to school, and headed into work.  My hips hurt and I have this electric shock-like pulse in the back of my skull, but I am here.  I shouldn’t complain.  Yet here I sit, in a sort of numb wariness, feeling just blahhh.

If I had my choice, I’d still be in bed, possibly crying, most likely just staring at the wall.  I don’t want to be that person, but sometimes I know my inner, secret self is that girl just trying to pretend this isn’t happening.  Today, I can already tell, will be one of those days where I just go through the motions of life, not really feeling as though I am living it.

This week has been a spiral of negativity.

Two days ago, I received my PET scan results from my oncologist.  While not horrible, it is his wording during our discussion that is haunting me.  Per my scan, I am about 90% stable, however three of my largest cancerous lesions on my bones are growing.  I was actually surprised by this as I’ve been feeling relatively good and active lately.  My oncologist does not want to change my current treatment regimen of Aromasin and Affinator because, as he said, my next option is chemo.  According to him, I have “blown through my aromatase inhibitors too quickly”.

This statement is like a shovel full of dirt from my grave.

For those who don’t know, my cancer is hormone (estrogen) receptor positive.  Because of this type of cancer, I have been on medications (called aromatase inhibitors) for the last almost four years to decrease the amount of estrogen my body produces in order to give the cancer less to feed on, limiting its ability to grow and spread.  I have already been on Tamoxifen, Ibrance, Letrozole, and Faslodex prior to the current two I am taking.  I have also had surgery to remove my ovaries to even further hinder estrogen production.

With cancer treatment, you can never go backwards.  Once I have used up my last anti-hormonal option, it’s all chemo, and progressively worse chemotherapy at that.  I know that I am fortunate to be here this long and to have been able to get here with the treatments I have had.  I have even been told (more times than I care to think about) that I have the “good” cancer because it is only in my bones.  Never say this to anyone, there is no good cancer.

In my mind, I cannot help but think about what this means for me, for my son.  In theory, not all chemotherapies force you make major life changes or have the visual evidence of cancer present.  Hopefully, I am still a way off from having to stop working, losing my hair, or being unable to play with my son in the backyard.  Hearing those words just forces me to see it all as I did, the fear of what is to come, the same way I saw it when I was first diagnosed.

I am scared.

To add to this already difficult week is the minutiae that comes with living.  An argument with a friend that you put a lot of faith in, now fractured.  The need to pick up groceries and clean the house.  Trying to figure out how to get my adorable dog to stop chewing up every damn thing she can get into her mouth. Bills. Pain. The damn ending of Avengers Infinity War (I have a 7 year old son, y’all).

The irritants and disappointments in life are mere pebbles when faced with the falling boulder of terminal cancer.   I am not thinking about fractured friendships or cleaning my house…I am thinking about my son, having to see his mother bald and sick.  I am scared of dying, but it is leaving my child that tears me apart.  Hearing those words from my doctor was a fresh reminder of what this life has in store for me…and my son.

So today may be hard, but I will go on.

Actually, every day may be hard, but it will not deter me from living my best life.  I will laugh when I catch my son singing “Jones BBQ and foot massage” (thank you internet, for that one), and I will get groceries because the thing about kids is you have to feed them.  My house may not be as clean as I want it, but no one is calling the health department anytime soon.  I watch Hoarders, I know I am still good.  As for a falling out with friends?  As any cancer patient will tell you, we lose friends all the time.  It is how we know that the ones still there are our real ones…and I have plenty of real friends.

As for my head…well, the doctor did say my recent brain MRI showed I had a normal brain, so I am sure I will get past this.  I have learned to live with fear.  My normal brain and I will focus on the 90% good news and whatever comes next, I will face that too.

I always do.