A New View Of A Situation from DailyOM

“Tree House”

BY MADISYN TAYLOR

I subscribe to a site, DailyOM, which provides multiple options to help and/or heal our Mind, Body and Spirit through comprehensive Courses, or simple daily emails.

https://www.dailyom.com/misc/linktous.html

I received this today and found it so beautiful that I wanted to share.

A new view of a situation is just what we need to answer a difficult question, or see something we’ve been missing.

There is no greater way to escape the troubles of daily life than to ascend into the welcoming embrace of a tree house. Like a bird in its nest, we feel held and safe in the branches, cloaked within a curtain of green leaves. Here we can breathe more freely and think more clearly, our hearts and brains fed by the oxygen released by the leaves. We float above the everyday world of the ground, enjoying a bird’s-eye view of all that remains below.

We may choose to be alone or we may invite a special friend to join us. Either way, this is our private world in which we get to decide who comes and goes. It is our haven where we can fully be who we are, shed the masks required by the world below, and reveal our most hidden secrets, dreams, and desires. It is also an ideal vantage point on the life that continues below the branches. Often, a new view of a situation is just what we need to answer a difficult question, solve a challenging problem, or see something we’ve been missing. It is as if we have ascended into the heavens and are able to tap into a higher awareness. We can draw on this airy energy to revitalize us, relax us, and feed us new ideas. When we descend, we are ready to enter the world again, cleaner, clearer, and often more inspired. 

If you haven’t been in a tree house for a while, now may be the time to make one for yourself or find one you can borrow. If you can’t find or create an actual tree house, think of other venues that could provide the same experience–a rooftop perch, a quiet spot in a grove of trees on a hilltop, a light-filled attic. Or just close your eyes and visualize yourself ensconced in your perfect home in the branches of your favorite tree.

Welcome to My Treehouse

Just before my 3rd, most invasive and totally unexpected brain surgery that lasted over 12 hours, I backpacked across Costa Rica with my BFF who is really like a sister. Our major splurge was staying in a Tree House! It was unbelievable. Pictures cannot even capture the overwhelming feeling of it. Waking up to the monkeys screeching all around, the sweet music of various kinds of birds, sipping my morning coffee surrounded by a jungle practically untouched by human life! It was worth every penny.

I came back from Costa Rica a new, revitalized person. I surfed for the first time and even caught a wave on my first try! I slept in simple cabins and wore breezy, comfortable clothes. I stayed miles from a volcano. I went zip lining through a majestic national park. I even grabbed the massive rope swing and flew through the jungle pure Tarzan-style!

And then… weeks later I was back in New York City, a totally different jungle! Yet, I laid in the hospital awaiting a massive surgery. I suffered a horrendous seizure the night before on top of it all. Boy, how life can change so quickly.

Weekly Gratitude Quotes

Weekly Gratitude Quotes

@habitnest has a fantastic Gratitude Journal, which is a” 66-day, fully guided journal” that helps you build a gratitude practice for life!” (Trust-I am in NO way a paid advertiser for this company; one day I’ll be that influential, but for now, I’m happy just to write about their product). FYI If you click the image below it will take you directly to their site.

One exercise is to write a “weekly “gratitude” quote, and put the quote somewhere you will see it every day.

So, I have decided to add this as a new category to this Blog.

Part of the Habit Nest Journal’s philosophy is that we all mess up, essentially. The important lesson is that you recognize you forgot and/or neglected to follow the consistent daily/weekly readings and exercises. Thus, if I do not provide a quote here every single consistent week, it’s okay. None of us are perfect and we all have to learn to forgive ourselves more. Be gentle to ourselves and not our own worst enemy. So, if I skip a week here and there, I’m not going to beat myself about it.

I’d encourage everyone to do this. Join me. Let’s see how consistent we can be!

Week One

QUOTE “You already have everything you need to be happy” courtesy of the folks at Habit Nest, as shown below.

Week Two
Continue reading “Weekly Gratitude Quotes”

Struggling With Change

Thanks to a very kind soul, who follows my Instagram @braincancer _babe and who inspired me, I thought this was a great topic to start off this new decade. The idea of change has certainly been discussed throughout my prior posts. Yet, now it’s very different.

I struggle with any kind of major change, like seriously struggle!  However, I’m not one to just sit around day-in day-out, and accept redundancy. I get bored very easily doing the same thing all the time. In fact, it makes me utterly miserable. These two concepts may seem to conflict, but they actually don’t.

As a very simple example, I lived in the same one-bedroom apartment for 17 years. That is pretty much unheard of in the New York City metro area for someone in my age bracket (under 40 years old). Moving and even the thought of moving was horrifyingly stressful. Yet, my resume was full of varying places of work because I found every job, up until my last, so painfully boring. Another example is that I hated being on my couch doing nothing. I always had to keep busy, go out, work out or be active in some way shape or form. Otherwise, I’d be left with my thoughts and I’d drive myself crazy worrying about some meaningless thing. However, I also needed, No demanded, time to just be alone.

My Myers-Briggs personality is something in between an introvert and extrovert. I just don’t remember exactly what it is at the moment.

Anyway, more to my point and what brought me to write this post, is to discuss just how deeply challenging my diagnosis/treatment/side effects of treatment/what-have-you and the changes they’ve caused have been.

In my humble opinion, no one can ever go back 100% to the person they were prior to a cancer diagnosis. You learn to live the “new normal”, as many of us say. I went from being a career-driven litigation attorney in Manhattan, to someone who still cringes when asked, “What do you do for a living?” or when having to check the “disabled” box on any form asking about my employment status. I went from a young woman, who always wore make-up, had her hair & nails done in my 4-inch heels and power suit, to what I’ve donned “homeless chic” (no offense to the homeless). If you’re wondering what that looks like, it’s sweats, sneakers, no make-up, messy hair, my cane, a hat to cover my bald spot, and NOTHING like what I looked like before.

While this all may sound very vain and petty, it’s actually not. As a wonderful nurse in acute rehab told me years ago,”You’re allowed to grieve the former you – no matter what that is.”

Even worse is the total loss of independence. Right now, as I await my 7th brain surgery in less than 6 and a half years, I have no use of my left hand and cannot raise my left arm above my head. My balance and coordination is so off, I cannot be left alone. My husband is with me 100% of the time, minus the occasional trip to the grocery store or to pick-up my meds. Yes, I am extremely fortunate to have him here, but losing every once of independence I once had is mind-numbing. Obviously, I cannot drive. It’s too cold here for me to even go outside because if I do my whole left side tenses-up so much it’s physically painful. I used to constantly work out. Now, I can’t even do physical therapy. Hell, just walking to the bathroom is a feat these days.

Halloween 2019, of all days, I wound up in Urgent Care at my hospital after a bad fall at home. I was admitted, but waited until 4:30 a.m. to get a room. My scan results led to my 6th surgery, to drain the fluid from my brain. Yet, the tumor removals and so much radiation to my brain in 2014 & then 2015 created this cavity in my brain, where fluid will consistently flow into, and cause constant imbalance and pressure inside my head. Thus, there are no other options but this 7th surgery.

I actually fell a few weeks ago. I believe I experienced my 1st concussion. Whoa. That was not fun! Besides being covered in blood by the gash across my eyebrow, I immediately became nauseous and wanted to just go to sleep. I truly saw stars and couldn’t focus my vision. I’ll tell you, I do NOT know how football players do it. (I write this while my husband is literally watching football)

My poor, poor brain!

So, Yes, I hate the negative changes brain cancer has caused. It is an every day struggle to face these challenges! However, as I’ve written throughout this lil ole blog of mine, it has brought positive change as well. I’m not going to rehash them all here, but some very important ones:

  1. I never knew just how strong I was until I had to face this beast and all the havoc it has wreaked upon my life.
  2. I have learned who truly loves and cares for me – and who doesn’t. It’s a painful lesson in many ways, but I found “my tribe” and I’ll never let them go.
  3. I was always an advocate – that’s kinda the whole lawyer side of me; but, I know through my charity work that I’ve inspired people I may never even meet face-to-face. That’s why I tell my story to anyone who will listen. If I help just one person, well then, that’s enough.
  4. I’m not just a survivor. I’m a “thriver”! I took on brain cancer, twice, and said, “Nope! Ya, ain’t gettin’ this stubborn Irish girl” or at least that’s what I like to tell myself… whatever works.
  5. Yes, I’ve had some very dark moments, some even in the last week or so, but I MUST fight on.

When Do You Walk Away?

I’ve been told that I give more to people than they deserve, and that it only winds up hurting me in the end because I’ll never get back what I give in terms of my heart. So, when someone I let close to my heart, hurts me it hurts even more than the average person.

I have what’s known as a “highly sensitive personality”. If you’d like to know basics on this personality-type, here’s a link: https://highlysensitiverefuge.com/highly-sensitive-person-signs/. A more in-depth article from someone with this personality can be found here: https://medium.com/invisible-illness/highly-sensitive-person-hsp-637295745aa

Some traits of people with this type of personality:

1. We absorb other people’s feelings no matter whether we know them personally or not, and it’s overwhelming for us (trust, I’ve cried through literally EVERY Disney movie);

2. We withdraw a lot, not necessarily because we want to be alone, but we NEED it;

3. Change comes very hard for us, and not just, “Oh no one likes change” – it’s extremely challenging;

4. We are always thinking, not just about something like the weather, but deeply and intensely. It typically comes off as being “shy” or even “cold” (Yes, I have Bitchy Resting Face, but I’m not angry, I’m just constantly in deep thought)

5. We notice everything and it can lead to an immediate sense of like or distrust of a person we hardly know. So, we’re labeled as “judgmental”.

6. When we hurt, we really, really hurt!

Do I expect people to be perfect? Absolutely not! I’ve got plenty of flaws, myself.

Lately, I’ve been asking myself, “When is it just time to walk away?” Recognizing that I do take things more personally than the average person, when does a relationship become toxic enough that I just have to let go? For me, this isn’t a romantic relationship, but so-called “family and friends “.

I don’t have any magical answers to this one, but I imagine, in fact I know, a lot of people who are ill face this dilemma. When we face our own mortality, we can’t help but look around at who has been there for us, who has offered help, who has sent well-wishes, cards, flowers, etc. On the other hand, we also see who hasn’t. People are supportive in different ways, but if you haven’t gotten one iota of support from someone, and you’re tied to them because they’re family or you have multiple friends in common, it’s tough.

I’ve made a promise to myself that in 2020, a new year, a new decade-I’m going to be cutting out a LOT of people. I can’t handle the pain of hoping this person, or that person will suddenly be there for me. They won’t and no matter what I do, I can’t “teach an old dog new tricks”.

So, it’s not me, it’s actually you. Buh-Bye!

“Losing Yourself”

“Losing Yourself”

It’s fitting I’d find this quote on Instagram today, because I do feel like I’m “losing myself”.

It’s partly due to losing connections with certain people who I’m supposed to consider family, as well as the loss of some friendships. These relationships were important to me in the past. As I noticed these people distancing themselves, I didn’t think much of it. I had a lot of other people supporting me.

As always, my fellow cancer “thrivers” understated the most. I mean, they had been in the trenches too. Even if we weren’t in that metaphorical “foxhole” at the same time, they know everything I go through, all the terrible things that run through my head way too often. They know that sometimes even replying to a text message is too much. They have perspective others in my life don’t and hopefully, for their sake, never will.

I could only wish my biggest complaint was that my nail polish chipped right after I left the salon. Or, that my order from Amazon came late.

So, No, it “literally” wasn’t the worst day of your life because say, your boss yelled at you. Yes, it sucks, and no one wants that. “Literally” the worst day of your life is when: you hear “you have cancer”; or you have to say “goodbye to a loved one; or that lump they found is not just cancer, but that you’ve actually been diagnosed with “terminal cancer” and you should start “making arrangements”. I’d say picking out my own coffin would “literally” be the worst day of my life.

I know you don’t have to suffer tragedy to empathize. I also know that people are people, and what seems like a bad day for them isn’t what a bad day for me is like. My bad days usually include, falling flat on my face just trying to get up from the toilet, or being so fatigued I can’t walk without my cane and someone or something next to me. The really bad days include trips to the ER, or so many doctors’ appointments back-to-back, I leave my apartment in the early morning and don’t get home until after dark. Of course, the really really bad days are spent in the hospital (and I’ve done my tour of so many a friend joked I should start a blog on the food service in each).

Anyway, back to “losing myself”. Throughout these last 5 1/2 years, I’ve remained consistently positive. Sure, I’ve had bad days, some bad weeks, but now it’s very, very different.

I’m heading into procedure Number 6 on Thursday.

Well, this being “Black Friday” seems quite fitting. My last post discussed how I’ve now become one of “those” people who hates the holidays. I was never that person. In fact, I couldn’t stand those people! Since my diagnosis in 2014, I’ve lost count of how many holidays I spent in the hospital, or separated from my husband because MY sickness caused problems with his family (ya know, when you get married you think, “oh, now we’re all going to be one big, happy family!” Ha. What a joke!)

Some fences have been mended. Once those relationships are fixed, then others suddenly crash and burn. People you thought were “family” are no such thing. Friends you thought would stick by you, don’t want to be around you because it’s “depressing”.

I do know ultimately that removing the toxic people from my life is better. However, that doesn’t mean it doesn’t hurt losing more and more relationships. I find myself becoming angry and bitter. It truly feels like I’m losing more and more of myself – that strong-willed “have no fear” cancer thriver. I just hope I can find the will to find myself again.

Relationships, “It’s Complicated”

Relationships, “It’s Complicated”

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I could write for days on this topic… but, for now just a brief post.

When you’re the sick one, so often YOU have to “manage” all the feelings, emotions, mental state of family, friends, significant others, etc.  Yes, they love you.  Yes, they’re concerned about you.  Yes, they worry about you.  Yes, they mean well.

Yet, unless you’ve been there, it seems like so many of our loved ones don’t understand that while we’re going through physical, mental and emotional hell all of THEIR concerns and worries also get projected onto us.

If I had just a nickel for the amount of times I’ve had to reassure, or at least tell those around me, “Don’t worry.  I’ll be okay.”  Well, I’d have a lot more money in the bank!

It breaks my heart when I hear people, who have battled this disease and come through it, talk about all the people who walked out of their lives when they got sick.  The healthy ones who “couldn’t handle” it!

Closing in on six years in this “Big C Club”, I’m only now beginning to understand why that happens.  Ultimately, most people act weak until they have to face something tragic, go through something that challenges them to their core, or somehow become aware/enlightened of their own inner-strength through mindfulness or meditation practices.  We all have this strength.  Yet, so few people are aware of their inner-power, i.e., the power of our true spirit/soul/nature/whatever term you choose.

Honestly, before I got sick, I absolutely loved the holidays.  They’re a time we should be happy, joyous, surrounded by those we love and who love us.  I could never stand the people who complained about how “stressful” they were – it’s the exact opposite of what the holidays were meant to be!  I relished in trying to find that perfect gift for everyone.  I would sit there with such anticipation, so beyond excited to see the reaction on loved-ones’ faces when they’d open their gifts.  Decorating my Christmas tree every year with either “Elf” or “Christmas Vacation” on the TV has been my own little tradition since I got my 1st apartment.  I loved having my “girls’ holiday dinners” with my close friends.

Yet, these past few years I’ve dreaded the holidays.  Besides the fact that some medical catastrophe always seems to creep up around November/December, or around Easter especially.  Well now on top of all that, there always seems to be some kind of family-related “drama” – and if it’s one thing in my life I do NOT want, it’s drama.  It all circles back to the sad reality that when you’re sick:

  • Some people will inevitably turn their back on you because “they can’t handle it”
  • You, despite being sick, have to inevitably “manage” other people’s emotions and feelings
  • You will be a “topic of conversation”, like it or not
  • How many times will I have to answer, “How are you feeling?” though truthfully no one really wants the hard-nosed truth.  Imagine sitting around the table, while that delicious turkey is being carved and answer, “Well, I feel like absolute s##t almost everyday.  I struggle to just walk to the bathroom.  I sleep until noon because my body is so treacherously fatigued that if I wakeup any earlier, I may fall.  I can’t go outside because the cold air seeps itself down to my bones and my entire left side becomes completely rigid.  I have headaches almost everyday that debilitate me.  And, I’m one of the lucky ones!  Someone I knew just died of cancer.  But how are you?”  Yep, your family will really want to dig into those mashed potatoes and gravy after that…

So, yeah, as if cancer doesn’t suck enough, it makes relationships pretty “complicated” to put it lightly.

 

 

 

 

– On Grief – “THERE ARE NO WORDS…”

– On Grief – “THERE ARE NO WORDS…”

“There are no words…”  It’s what I find myself saying when a friend is deeply suffering or struggling, when I learn someone has been newly diagnosed with cancer, and especially when I learn that someone has passed from this ugly disease.

I learned last week that yet another beautiful soul was taken from this world, all too soon.  He was just 30-years-old, the age when most of us in the New York City area are just “finding our way”.  Two years ago, he was living in Manhattan, had a successful job,  came from a wonderful family, and was loving life.  Then, out of nowhere he suffered a seizure only to learn he had a golfball-sized lesion in his brain.  It turned out to be a glioblastoma, which if you’re reading this blog, you likely know is the deadliest type of brain tumor.

NO ONE is a statistic, but the median 5-year survival rate from a GBM diagnosis is approximately 5-6%.  In other words, when people hear they’ve been diagnosed with a GBM many begin to “make arrangements” and typically pass within 10-15 months.  There are no words when hearing such a dire statistic.  There are no words when you hear that someone has been diagnosed with a GBM.  And I certainly have no words when I hear that a “30-year-young” man, who was so deeply full of life, is now gone.

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In May of 2017, I lost a very dear friend to a GBM.  I think about her constantly.  I miss her.  At the time she passed, at the ripe old age of 35, she had already undergone 4 brain surgeries.  I had just undergone my 4th in April ’17.  By then though, she was nonverbal, having had a severe seizure and suffering from an unstoppable tumor wreaking havoc upon her entire body.

We were “partners in crime” in our brain cancer world.  We were fighters.  We were strong, otherwise extremely healthy young women.  No one else understood me and what I was thinking, feeling, and going through like she did.  She’d have surgery.  I’d be undergoing more radiation.  Then, I’d have to undergo another surgery, while she was undergoing more radiation, or yet another clinical trial.  I would sit with her while she waited for her radiation treatment, or while she was getting her chemo.  She would visit me in the hospital while I awaited my next surgery.  Although we saw each other, thankfully, outside of the hospital, somehow someway we’d always wind up back there together.

I was, in fact, the first person she saw when she learned of her final recurrence.  Her husband was away on business and she went to her appointment alone.  We had plans to meet for dinner right next to the hospital because I too had an appointment that afternoon.  I’ll never forget that day for as long as I live.  Once again, I found myself muttering between sobs, “There are no words.”

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Yes.  As the quote above says, “Cancer is messy and scary.  You throw everything at it…”  Well, my sweet friend threw everything, and the kitchen sink, at it!  She never forgot to throw love at it too.  She was a fierce advocate for brain cancer awareness, raising funds for multiple charities.  She was even welcomed at Vice President Joe Biden’s Cancer Moonshot Summit.  Even though she was suffering, she would still find the will to speak publicly about her story.  She was my hero.  She always will be, yet she’s gone.

THINKING ABOUT THE END

There’s one particular moment before my 3rd surgery I’ll never forget.  My dear friend, even after undergoing who knows what round of chemo, still wrangled the strength to sit with me in my hospital room.  Of course, just as she arrived the aides came to take me to a pre-op scan. I had only been waiting ALL DAY for that damn scan!  Rather than going home to rest, she came with me to the scan.

Part of being “sick” is learning to wait.  So, of course, the aides parked my wheelchair in the “waiting area”, so aptly named.  Then my friend and I waited and waited.  We talked about casual, mindless things until we noticed a frail, elderly woman laying there alone on a hospital bed, crying out, “Help me.  Help me.”  She just kept repeating it, over and over.  She was too far from the desk for anyone to actually hear, or at least I want to believe that no one could hear her cries.

I could not get up from the wheelchair, but my friend who always cared for others more than herself, as weak as she was strode up to the desk and demanded someone assist the elderly woman.  When she sat back down next to me, we sat in silence.  We were thinking the same thing, although we didn’t want to say it out aloud.  Finally, as we shook our heads in sync, she finally uttered it.  “I never want to wind up like that.  I’d rather die before I get to that point.”

I didn’t have to say it.  She already knew.  Yet, I said it.  “I agree.”

AT THE END

I was thinking of that moment when I finally said, “Goodbye” to my friend.  People tried telling her husband that she was essentially gone-just a vegetable.  He refused to believe it.  However, I was sincerely scared of what I’d walk into when I entered her hospital room that day.  Was her husband right, or was he just in denial?  Would she look like that old, pale-faced woman crying out in distress?

As always, my friend never ceased to surprise me, or anyone, by her strength.  She looked so good.  Her hair had grown back enough that her husband and other visitors could put beautiful hair bands and scarves around her head.  Although she was nonverbal and could not move any part of her body, I knew the friend that I loved so dearly was still with us.

Another 2 women, who had known her longer than me (sadly, it was brain cancer that brought us together), were saying their “goodbyes”.  Her head was permanently turned to the right side, looking out of her hospital window.  I didn’t even think to walk out and give them all privacy.  In my defense, I was less than a few weeks out of my 4th surgery, connected to a 24-hour portable IV pumping an insanely strong antibiotic through my body, hoping to kill the massive infection in my skull bone.  (Yes.  That WILL be another post in the future).  I watched as she closed her eyes.  At that point, her friends decided it was time to go, so now it was my turn…

Everyone left the room.  It was just us, once again.  Yet now, it was so horribly different.  I sat down next to her bed and just began rambling.  I had a card of St. Jude in my hand and unconsciously, began rubbing it against her one hand while gripping the other, which was in a permanent fist from the seizure.  Suddenly, her eyes opened.  Again, she could not move so she remained staring out of the window.  Yet, I knew she was hearing me.  She was still there alright!

StJude

So, I began telling her how much she meant to me; how I didn’t know how I’d get through this without her; how I never thought we’d “be here”; how we were never supposed to “be here”.  We were supposed to grow old together with our husbands.  We were supposed to drink lots of red wine together.  We were supposed to see a cure to this wretched disease.  As I rambled, her hand began to tighten around mine.  Skeptics would say it was some involuntary movement, but I know it was far from that – she was telling me in the only way she could to stay strong and keep up the fight.  Even if her poor, diseased brain didn’t fully comprehend every word I said, her soul knew.

Eventually, it was yet another person’s turn to come in. I spoke loudly enough to ensure that if she could hear and understand me, she’d know.  I told her husband how strong she still was and that she was assuredly still with us.  As I went to leave, I came around to her side, kissed her forehead and said “I love you.”  I noticed two little tears at the corner of each eye and asked her husband, “Is this normal?”  He said, “No!  I’ve never seen tears in her eyes before.”

Walking out of the hospital that afternoon, I wasn’t sad.  I felt at peace.  Although I said, “Goodbye” to her physically, I knew I’d she her again.  Not in that body, of course.  She passed about one week later, fighting til the last moment.  Yet, I knew she would always be with me.  She would be amongst my army of guardian angels.

LOOK FOR THE SIGNS

I can’t think of how many times I know my friend has shown she’s still with me, looking over me.  About a year ago, I was walking along the seaside in Europe.  It was late in the afternoon.  There was practically no one in sight.  All of a sudden, I began to think about her.  Out of nowhere, I heard something that eerily sounded like my name.  I suddenly looked up and saw this beautiful, white bird soar across the sea.  I just smiled and uttered her name out loud to myself.  Then, another time while thinking about her, a monarch butterfly fluttered next to me.  And last week, when I learned of that young man’s passing from a GBM, a pristinely white butterfly hovered around me.  I believe that was my friend assuring me that she would take care of him, just as she’s always taken care of me.

In moments of grief, sometimes (well, most times) there are no words.  Yet, sometimes we don’t need words – just look for the signs.