Sunday, March 29, 2020

“Hello darkness my old friend....”



I have been having a hard time in lockdown.  Oh! I’m definitely used to being at home now, learning all sorts new that now fill the free time I have since I went in long term disability over a year ago - the difference between dress pajamas, handing groceries/”Silkwood” showers whenever coming in contact with another human being outside your little bubble of a world- is a whole new kind of mindgame.  My fight and flight instincts have kicked in HARD, and I have had a complete shorted circuit meltdown that is preventing me doing anything, any thing  that would make this easier for me to bear.  Interesting ¿coincidence? that the Kickstarter CD, “The Sound of Silence “ by Jeremy Arndt, I funded a while back, just happened to show up in the mail, about the same time we were figuring out when we were going to go to campus to pack up Connor’s stuff for him to finish out his freshman year of Uni at home

 I feel like I’ve been using this time to figure out the tipping point of when forgoing taking a shower is considered “budget-friendly” vs. “I’ve lost-all-the-fux”.  Still, and I really don’t know what it is in the back of my brain, there is that THING that insists I get up every time I think I can’t handle one more punch in the gut, one more crappy diagnosis, one more betrayal of trust. But here I am...back here on Pixie BA’s turf, ...telling the world I haven’t given up just yet. I have to make that one baby step to turn my feet in the direction of moving forward, even if it’s just one tiny step.

  I had the pleasure of befriending Jeremy and his lovely partner Nancy in the yoga teacher training class I took after I finished up my chemo.  They are traveling musicians, artists, yogi, and in my opinions, gurus; sharing their love and wisdom with the wider world.  I haven’t listened to his music in some time.  To tell the truth, I haven’t been in that great of a state of mind to properly appreciate his gift.   His music is truly awe inspiring to me, otherworldly, and bigger than the sum of its parts.  Just what I could use a big old helping of right now, as well as a few others, I imagine.

At this point in time, he and Nancy, like so many of us, are deprived of the ability to go out in the world when they want, but also deprived of the ability to make their living, as it’s based on touring and performing.  I have no doubt that Jeremy and Nancy will use this time to their best abilities and turn a time of uncertainty and fear into something beautiful and inspiring.  That’s just the kind of people, and artists they are. And I want to share that beauty with a world that really needs it.  I want to do them the simple small act of posting a link to their music, their work, to shine a light on them, so that they can keep doing what they’re doing, and to share with my friends out there in the virtual world, that they might feel a little of that beauty in their small part of the world, too. Just in case they need a pick me up or reminder that there is beauty, kindness, community, hope, and, yes, too, all different sounds of silence out there in the world right now.

https://open.spotify.com/artist/7KZzcubMLbaEJMPIHw9Q1T

Jeremyarndt.com



Thursday, October 26, 2017

All good things are wild and free.

 I've gotten away from writing in my blog - as the years pass and life returns to a new normal, the pull of the cancer experience fades into a hazy memory.

One I've been abruptly pulled back into with the sad sad news of another bright and shining star passing out of this world and into the next on 10/24/2017 -

Victoria Davis, aka Victoria Hope aka HopefulandSmiling.blogspot.com

My old blog posts pop up on my FB feed every now and then and I sometimes take the opportunity to open the window to my past and refamiliarize myself with what was going on with me back then  - fears, hopes and aspirations.  Luckily for me my cancer experience is something I can take off the shelf, dust off and re-examine poignant reminders to live my life to the fullest.  I haven't been doing that much lately, real life has gotten in my way, person tragedy, the loss of loved ones, illness and stress.  I have been shut down and away from the world for quite a while.

Losing Victoria, who lived with her cancer everyday for 5 years + Ten months and really LIVED her life to the fullest for those 5 years and 10 months.  Reading through her blog is a litany of tumors, surgeries, complications, more complications and still more tumors, yet she always managed to remain hopeful, to understand that the current state was temporary and the likelihood of good things coming to pass just as valid as not.

I have been in the situation where I envied her freedom to do what she wanted with the rest of her life, and actually DO it! despite her body's attempt to designate the opposite.  I must take to heart the lessons she lived and shared with so many- it doesn't matter how much time you have in this world, (in fact we can never assume we know this anyway)  but what matters is what you do with that time while you are here.   thank you my friend, I will try to honor your memory by making sure I am living my life more and not letting my time here on earth just pass me by.


Wednesday, May 7, 2014

Only know you love her when you let her go

Kasi and her hubs, Cliff
"...Only miss the sun when it starts to snow
...Only know you've been high when you're feeling low
Only hate the road when you’re missin' home
Only know you love her when you let her go

so you let her go."  

- Passenger 

It's been too long since I've written anything that wasn't involved with Yoga teacher training. I can't believe I've finished up my Yoga anatomy workshop and getting ready to head into my 6th month of training!  

*update: It's now MAY, and I'm DONE with Yoga teacher training classes.  This post has been in draft mode for several months!
Our last class!  the satsung, at Sally's house

Honestly, though, I haven't had the heart to blog here for many months. (and obviously, a few more months after that!)

Everyone needs time to grieve.  I know that my journey through cancer will never really end, as long as there are still people living with and dying from it. The best I can do is try to honor the ones that have passed by living my life on my own terms.  This is a hard thing for me.  I want and have wanted my life to be so many different things, that I've often become paralyzed from doing anything.  Fight, fly or freeze is the stress response.  My MO is usually to fly or freeze.  
Totally frozen Great Lakes, a first for many, many years!

Juan walks on water @ Lake Michigan,
 Holland State Park
















And with the polar vortex winter we had, that is also a literal thing! We had a record winter for cold temperatures.  Payback for the last several mild winters.  Michigan pulled out all the stops for our exchange student, Juan, who is used to a Mediterranean climate.  He is taking it in stride.  He told me after several typical Michigan cloudy days that he finally understands the line about missing the sun in "Let Her Go".  

Lucky for me, I constantly get pushed outside of my normal reaction of freezing in times of stress by the movement of yoga.  And now it's required because I've doing my Yoga Teacher Training, since September.  I can't say that I've been super great in my physical practice during training; I had several months of illnesses and injuries that kept me from doing much at all.  But, as I came to realize during my cancer recovery, Yoga isn't always and only about the asana, or physical practice.  It's in the mind, too.  

I've been lucky enough to be allowed to teach a class in a real yoga studio, while I finish up my certification, which will probably take me most of the next year, working full time at the state, and teaching yoga part time.

Teaching Yoga has allowed me to practice stilling my mind in order to lead others in the stilling of theirs.  For me, it is still hard not to let my brain go to the chaos, but I'm sloooowly working on it.  One second at a time.

Namaste.
Om Shanti Shanti









Tuesday, September 3, 2013

Pink Arrow Week

Aka. the first week of school.

WOW. Summer is over, school has begun, and we have one more family member this year!  We invited a foreign exchange student into our home for this school year.  Juan is 15, and from the beautiful island of Mallorca, of the southeastern shore of Spain, near Barcelona.  Unfortunately for my hubs, he is NOT a Barsa fan, but instead roots for Real Madrid.  As if the whole MSU/UM thing going on in our family is not bad enough!

Being THE mom, I require at least ONE photo the first day of school, every year.

Here is Connor starting 7th grade, and Juan, starting in American 10th grade.

So far we are enjoying the new experience of hosting a student from overseas. He is very courteous and helpful, and a little shy, but still friendly, willing to participate in family activities and speak up when he doesn't understand something we've said.  I'm trying to learn Spanish from him, but I fear that it's hopeless for me. Maybe, maybe not.




In lieu of dying my head pink, I plan on wearing pink all week, the heavens know I probably have enough to wear for a month!  Since I forwent(?) the pink hair this year, I think I will do feathers for the big game on Friday, either in my hair or my hot pink feathered earrings that I bought for belly-dance costume props.  I'm wearing my pink ribbon earrings today, a gift from a friend and my pink silk sandals. The Lowell Pink Arrow Bracelet I will wear for the entire week.





The school celebrates this week, and uses it to promote cancer awareness to the students. It all wraps up on Friday with the big football game- the field, players, cheerleaders, refs and both bleachers- all pink.  This project started out as a fundraiser for 1 year- 6 years ago and has turned into a community event- raising over $500 million, all kept within the community of Lowell.  We've been on the Today show and this year, we'll bring in our first out-of-state team to play against - a team from Chicago - hopefully spreading the word even farther afield. And though it's called the Pink Arrow, it's really not just about fighting breast cancer, but all cancer.


Tonight, hubs and I run my 2nd Pink Arrow Quiver 5K.  (Hub's 3rd).  Both of us feel like we are coming down with something, so this may be more walking in the run/walk than running, but we are still doing it, and that is an accomplishment.  This year, I'll be wearing my pink arrow VI shirt during the run, to honor my friend who lost her battle with cancer last month.  I'm running for her and her hubs - Cliff, as much as for myself.

Because I can.

Tuesday, August 20, 2013

Fear- revisited- revised: An homage to a dear friend

I was reviewing my past blogs looking for a specific picture I needed for a project I am working on and I came across my "Fear" post from December 2011.  As I read through it, I thought that I would write an update on those fears, just to give some perspective, and to possibly help someone else going through that stage of treatment.  However, like most times, other things come up that seem more important to write about. So it is with today's post.

I lost a very close friend, Kasi Gajtkowski, last week after her Stage 2 BC came back less than 2 years later as Stage 4 incurable, and then, in what seemed like a blink...she was gone.  I'm still in shock.  She was my rock, my tether to hope, as she was going through everything I was, just ahead of me. She gave me tips and advice on what was coming, how good or bad it was, and how long it would be after chemo before my hair and eyelashes would grow back, as well as the best way to put on fake eyelashes, draw on eyebrows, and taking bets on what color and texture our hair would be when it finally DID grow back.

We never met in person, as she lived in Maine, and I, in Michigan, but thanks to the website: ihadcancer.com, where I met her, and innumerable email, texts and cell phone calls, we were able to keep in touch, to keep each other going, she for me, more than me for her. I will miss hearing her voice, reading her replies to my pages-long emails written in the middle of the night, and just in general, for the wonderful, inspiring woman that she was.

This makes three people, who I've known closely since my diagnosis, to lose their battle with cancer in the last year and a half.  She is the youngest, at 33, and the one I was closest to, so it has hit me hardest.  I was lucky enough to be able to send her a text while she was in the hospital last week, which her husband read to her (and made her laugh, to my delight), and she was able to have him send one back from her.  So even though I didn't get to hear her beautiful voice and laugh one last time, I was able to let her know how special she was to me and how truly blessed I was to know her.

Losing someone who was so close in diagnosis, so close in age (ok - so she was 9 years younger), so quickly after finishing treatment, brings up all the old fears that I had during those 'dark nights of the soul'. These were usually the nights that I was up, emailing my friend, who would wake up the next day inundated with a slew of emails from me, and laugh at my sheer volume of work that I managed to produce in one short night.

As I said, I began this post as a follow-up to my original "Fear" post, but right now is not the time for that.  I'd rather just use this post to honor the friend, the woman, her family and friends who lost a shining soul last week.  We love you Kasi. You will forever be in my heart, and in a piece of my soul. Until we meet again....

As her Obit was just posted, I will share it here, it says so much about the wonderful woman she was.
WINDHAM -- Kasi Marie (Bean) Gajtkowski, 33, of Windham, passed away peacefully on Thursday, Aug. 15, with her signature grace and dignity. Her loving husband Cliff, parents Merrill and Lesa, brother Derek and faithful and loving puppies Rosco and Pebbles were at her side. She was surrounded as well by several family members and friends.
Kasi was born in Waterville on Sept. 26, 1979 to Merrill and Lesa Bean. She attended Oakland schools and graduated from Messalonskee High School in 1997. In 2001, she graduated magna cum laude from the University of Southern Maine in Gorham with a bachelor of arts degree in communications. Following graduation, she worked for several companies in the Portland area, making many long-lasting friendships. In 2011, she took a job as an SEO specialist for PowerPay in Portland, work she truly enjoyed.
On Nov. 7, 2009, Kasi married her one true love and soul mate, Cliff Gajtkowski, in a beautiful ceremony on the beach on the island of St. Lucia. They settled in Windham with their two dogs.
Kasi was predeceased by her paternal grandparents, Bernard and Vivian Bean; and maternal grandfather Leslie Stevens. She is survived by her husband, Cliff; parents Merrill and Lesa; brother Derek; maternal grandmother Eileen Stevens; several aunts, uncles and cousins; her sister-in-law and three brothers-in-law and families; dogs Rosco and Pebbles; several close friends and best friend Lesley Mosher.
A special thanks goes to the members of Kasi's Krusaders for their dedicated Facebook page, all the kind words and the walk to support her. It had a profound effect on raising her spirits to read the daily posts and to know that so many were walking in her honor. Kasi had asked that any money collected from the walk be donated to the Cancer Community Center in South Portland.
A quote from Winston Churchill, chosen by Kasi, became the motto for the Krusaders.  To quote: "If you're going through hell, keep going." In these past two years in her fight against breast cancer, Kasi did just that, as well as touching so many lives in such an inspirational way. It is evident from the outpouring of love she received from literally hundreds of friends, both locally and from around the country, some of whom she had never met, that she truly was an uplifting and endlessly caring person. For those who would like to see more of her inspiring personality and the work she enjoyed, it is recommended to visit her web page/blog that she designed and built to provide content to help others going through similarly tough situations, as well as insights into her own life and a means by which to contact her for support. The web address is www.purpleismycolor.com.
A private family service will be held. A celebration of her life will take place from 5 to 8 p.m. Thursday, Aug. 22, at T&B's Outback Tavern in Waterville. Kasi, we love you SO MUCH!
Published in Morning Sentinel on August 20, 2013

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror.  I can take the next thing that comes along'. You must do the thing you thing you cannot do." 
-- Eleanor Roosevelt --


Sunday, August 11, 2013

"every breath you take, every move you make, every step you take, ..."

"...I'll be watching you."
~ the Police.

My birthday and my 2 year 'cancerversary', much like the month of July here in Michigan, came and went without much fanfare.

However, they were all very UNLIKE the previous 2 years in myriad of ways.

This year, I decided that I was NOT going to celebrate my birthday.  Overtly, that is.  I'm not saying I'm in denial that I am having another birthday, I don't mind getting another year older (especially when people tell me they can't believe my actual age).  What I wanted was a quiet day, a Friday, too! where I didn't have to plan, worry, anticipate, be disappointed, be upset, etc. etc.  I have had a small number of really great birthday celebrations, and much of that is due to my wonderful husband, but I have also had more than a share of real doozies, of which I won't recall here.

Needless to say, I just wanted to have a DAY, where if you knew it was my birthday, you could wish me a happy one, if not, then, no big whoop. 

I woke up to my hubs wishing me a happy birthday and a kiss.  Nice.  Exactly what I wanted. 

Since I'm a contractor, no one at work had my birthday on the department calendar, so with the exception of a mutual coworker/FB friend, no one was the wiser - flew under the radar on that one - no group of people who don't really even know your last name ringing me in a circle to sing (gasp) and the ones who only show up for the treats.  Sorry if that sounds cynical, but again, I've had some history.

My mother proposed we come to her house for dinner on Sunday to celebrate my birthday. I told her politely, no thanks, I'm not celebrating this year.  Another reason not to make a big to-do, though I realize that is what mothers are for, and some actually love doing it.  I didn't want to put anyone through any stress on my behalf.  I just wanted me and the people around to enjoy the fact that I was still on this earth, and not have to worry if the oven needs preheating, or if it's going to be too hot to even use the oven (no such luck THIS year). 

Instead, I invited THEM over for post lunch/pre dinner snacks on the deck, under the pergola the hubs built last year, The west and south side thickly covered in grapevine (exactly as we had envisioned the 9 years before the pergola actual got built!).  It was, in Holly Golightly's words, loverly.

Exactly a week later, and I got to celebrate my 2 year cancer free date. I prefer to use 'cancerversary' for the day I had IT removed from my body, since that is most easy to remember - one week after my 40th birthday. 

The actual "Discovery" of my cancer was such a long drawn out affair, filled with appointments, tests, endless waiting, tears, phone calls, and...duh DUM..."THE DIAGNOSIS",  I can remember general timeframes, but why celebrate THAT part of it all?     I have it all written down in this blog...at the beginning, in tedious detail -  if you want to know when and in what order those milestones occurred.  Feel free to go back and find the old blog that documented them (give me a few more page views!)  But that is what we held on to at the time....what was the next step?  don't look too far down the road, you don't know what you'll see.  So...

So, 2 years cancer-free.  So different than last year's day.  or the one before..WOW that was a real doozy- waking up with body parts missing-! Not an experience I'd recommend to anyone, even if it does mean saving your life.  Try and avoid it if you can.

How has my life changed in those two years? Dramatically, and then slowly its's faded back to normal.  Sort of the opposite of that quote I just read somewhere by someone famous I should recall....oh wait!...I remember.. from the Great Gatsby I think...how did he go bankrupt?  "Slowly, than all at once".

(ahhh...and here is the most annoying part of post cancer treatment - I've lost my mind.  Not like that, though there are days I feel like I have. No, I've lost something that used to be very precious to me- my ability to remember and recall all sorts of things.  "chemo brain", though I can just as easily blame it on the blonde :), or the "chemo-pause".  Add up all three, and you have a terrible triumvirate of factors that leads me to grasp at words, names of people I know, movies I've seen, etc.  If I think on it hard enough, I can sometimes bring it back, but then there are times I just give up and figure, it's really NOT that important if I can remember the botanical and at least one, if not multiple, common names of all the plants I have in my yard.  But this is a loss to me, still, a small one that points out how different my life is two years hence.)

One of the reasons my blog has been pretty stagnant lately is that 1. I'm usually too brain dead from my job during the week I have no energy to find an unoccupied computer to write down my thoughts.  2. Nothing that interesting is really happening to me once the main excitement of HAVING CANCER has died down.  3. TOO many things are happening around me to get them all down, and are they really that interesting to write about, or only interesting to me? 4. I have so much to write that when I think about sitting down to write about just ONE thing, I can't pick one, so I just don't do anything.   Sort of like this lovely little blog post my hubs sent me, from a lovely little blog:  http://tinybuddha.com/blog/stuff-we-dont-need-and-5-reasons-why-it-doesnt-lead-to-happiness/


There is a reason I subtitled my blog as I did; I wanted to be able to write about what life was like AFTER the big C and how it changed me.  Obviously, physically, I'm changed, though, I find it interesting that people tell me how beautiful I look, how thin I am, how lovely my blonde corkscrew curls are-are surprised when I tell them it's from the chemo, 'oh yes, I had breast cancer'...the shock, the doubt as to what to say.  I want people to know THIS is what cancer looks like, too.  I don't do it to make people uncomfortable, but to bring light onto this horrible disease that has killed too many and will kill too many more;  to let people know I am a survivor of it and a warrior.

I frequently 'analyze' (my hubs might use the synonym 'complain') my altered image.  Robo-boob is dead, the lotus breast has replaced it.  My hubs, my wonderful hubs, tells me he loves all that it is- plastic, silicone, and ink- because my having it means that I am alive and cancer free these past two years.

To him, he sees what most people see. I am a woman, enviably skinny (foolproof diet I tell people who lament their weight- it's called 'the cancer/chemo diet' -Guaranteed to make you thinner.  Most people aren't all that interested in it, for some reason).   And I guess that is ok, because people don't want to feel sorry for you forever.  They want to see that the cancer is gone and it's never coming back (god forbid), and this woman is standing here as proof that there is no monster under MY bed tonight.

 But I live on the other side.  The side where, yes, in clothes and even a bikini, my body looks wonderful, healthy, fit.  I appreciate that I was spared the horror that I see other cancer friends endure- permanent disfigurement, essential organs removed, incurable metastasis. I'm so grateful for that. I really am.  But I still live with a body that is partly not my own.  I am reminded everyday as I get dressed, do I wear a comfortable bra that doesn't lie about what's real and what isn't? or do I wear one of my 'boob' bras, the uncomfortable ones that make the girls look FANTASTIC, and symmetrical, but as one of my girls frequently said...."It's all smoke and mirrors"?  This is the part I think people DON'T want to know about.  It's minor, I agree, it could be worse.  But it's certainly not a picnic in the park either.

Worse for me is the doubt.  Yes, they removed all my cancer on that day over 2 years ago.  There is no more on that side.  However, as my doctor pointed out.  Anyone with breasts is at risk of getting breast cancer.  I chose to keep one.  I wanted to keep every thing I could at that time.  I felt like I was losing enough, and the thought of taking one perfectly healthy breast off for the 'what if' of tomorrow or 5 or 10 years from now was not an option.  But today, that sentence my surgeon uttered is always in the back of my mind, reminding me......Every cough, lump, bump, weird symptom, I worry, has it come back?  Has it gone somewhere else? Will I have the strength to fight again if the enemy ever comes back to my shores? 

I don't know the answer. I don't think anyone does.  I didn't think I would have the strength to fight the first time, and somehow I managed.  I didn't think I could run a 5K- to prove to myself that I was indeed a warrior, but also to do it because others I knew could not, they were too busy fighting their own battles.  I walked 12 hours this year at Relay for Life, to celebrate the cancer free diagnosis of my girl Victoria, and to remember the friends I had lost this past year.  Though I hadn't planned it, I'm running the Komen 5k AGAIN this year, and hope to beat last year's time, not because I love running (I don't, I actually hate it), but because I have to do it for my girl who cannot THIS year.  And, I suppose, unfortunately, I will always find another person to add to my growing collection of luminary bags for Relay, and I will always have another friend fighting a battle that will inspire me to run another 5K in their honor, as much as it pains me to do it- physically, emotionally, mentally. 

Or, I will do it just because I can, for as long as I can. 
 
Peace, light and love to all ~ Namaste
 
~pixie

Tuesday, July 16, 2013

Writing About Writing (And Occasionally Some Writing): Changing The Creepy Guy Narrative

I came across this Blog post today and while it has NOTHING to do with MY chosen blog topic, in the spirit of the original article I wanted to share it with as many people as I can.  oh....and do read through the comments, there are absolute gems in them, moderated, and TOTALLY worth it.


Writing About Writing (And Occasionally Some Writing): Changing The Creepy Guy Narrative