I’m still here

Happy New Year, welcome 2017.

I was reminded (again) of this, my blog, when during the final weeks of 2016 a poster of Betty White made the rounds on Facebook stating  “I’m still here!  …”

Yeah; I’m still here.  I dropped the blog-ball when, towards the end of chemo, my fingers hurt too much to type out anything close to a cohesive sentence never mind then a paragraph.   One of the side-effects I experienced was the nails lifting off the nail bed which was painfully torturous.   A couple nails seemed to get infected, but soaking in vinegar then keeping them wrapped in a band-aid helped keep them intact.  Not so lucky with my toenails though, I lost the nails on my big toes, and halfway down on the middle toes.   Wearing shoes hurt for a long time.

But anyway, I am still here.  I finished the chemo and had a short break of about a month or so before I had surgery:  a lumpectomy and lymph nodes removal, and after a quick recovery from that there was 6 weeks of daily radiation.  I pushed to keep moving forward with my treatments as quickly as physically possible.  I wanted to beat this cancer to a pulp and not give it any chance to regroup and fight back (ie: come back)

I was tired.  Victorious but tired.  I took a two week, no agenda, vacation to the coast as water and salt air always seem to rejuvenate me.  And it did help as much as it could.  But I was worn down.  It was July 2015 and I couldn’t walk far without my legs feeling like they would give out.  I couldn’t do more than a flight of stairs up, and down was even more challenging.  My head was still foggy and I would get frustrated at work when I couldn’t quickly accomplish a task which I knew I had the ability to process.    Then I tried to dance.  I was weak, and tired quickly.  I could only take part in the warm ups.  But the worst was that the administration had moved our class out of the studio, and of our class – my troupe – most of my dance friends had moved on.

It has been and continues to be a long uphill climb of recovery.  I have had to push myself daily, and now looking back I am stunned at how physically drained I was.  But you know how it goes in life; when you are in the middle of something, you just have to keep pushing thru it one step at a time.  It’s not until later that you can look over the full situation and think wow – those were some pretty tough times.

As I was on this journey, the picture – the story –  I had in my mind was this:

I was a warrior in battle, hunting tiny monsters that were out to kill me, in a long dark murky canyon.  I had to travel through this canyon from east to west and I had to travel it alone.  I could see many loved ones at the top of the canyon walls shouting encouragement to me and occasionally one would swing down on a rope to give me something needed when I lost my sight or my foot got stuck, then they’d swing out of the canyon again to the precipice.   At first I was zapping many monsters with something like a wand, ala Harry Potter style. “Expelliarmus!” and each zap shot back a painful jab, but I was slaying them left and right, and recovering quickly.  After a few months of this, I was pretty beat up.  By then the canyon had gotten deeper.   My feet were heavy sloughing through the muddy floor where the sun could no longer reach.  The kickback from the wand had bruised my hands, my nails were getting torn from the fingers and my hair had fallen out.  Each purposeful step racked painfully thru my body, and with fierce intent I still hunted the monsters.   I could find no more and wearily climbed a slight plateau to rest.  It was elevated enough that I could hear the muffled sounds from my loved ones cheering at the top.

The next part of the journey terrified me.  I cried as I stood in front of an entrance to a cave of dark jagged rocks.  I would have to pass through this cave sideways, and with careful precise steps, otherwise it would cut me.  I needed to be on the lookout for the monsters as they sometimes hid in the dark caverns and I could not let even one be overlooked.  I was frightened to the core and wished I could just be teleported back to the top of the canyon right then.  I was not sure of my footing.  And, what if I ended up getting all cut up and in much more pain?  I didn’t think I could take any more; and yet – I could not take a chance on the monsters lurking in shadows and then coming back for me as they were known to do.  I finally steeled myself to take this step, to pass through this cave and make sure there was nothing hiding within.  When I started this journey, this battle, it was with intent to win and said “I WILL win this.”  I made it through the cave scarred with only two cuts, and the glorious declaration that no monsters were found.  I had probably got them all in my first leg of the journey.

None the less there was one leg left to go.  Looking at it, it appeared to be an easy path although with a steep incline.  With this part of the journey I had to quickly (and I did not feel like I could do anything quickly at this point) climb the path out of the canyon through a blazing sun.  I am prone to sunburn but this sun would burn and vaporize any remaining monsters if it shined on them.  I was feeling rather chuffed about my previous victory and propelled myself into this solitary race with that famous last wind.  I was doing quite well in fact, and as I got more and more tired in the uphill climb the thought of my old life, the life outside of the canyon, willed me on and gave me the energy I needed to keep up the pace.  I would think of songs to play at my “Kali Killed Cancer” party and think of choreograph for them.   I neared the end and saw my loved ones as excited to see me as I was them.   I approached the final rim and climbed out of the canyon; bloodied, burned, and bald.  Barely walking, yet intently saying “I did it.”    We all rejoiced.

And that was the story as it played in my mind.

I knew it would be a long recovery after all those battles;  the day I could bend forward and touch the floor of the dance studio, I quietly cried with gratitude.  The time I did a quick math calculation in my head I smiled to realize the gray matter hadn’t gone away, it merely had been muffled under a blanket. There have been many small mile markers, with still more to pass.

Yet, what I am now still saddened by and still working on is the realization that while I was gone to battle for two years, life continued on.  And life, as we all know, is about change.  I “came back” and so much had changed.  My dance troupe is gone.  People have moved, moved on, or taken on new hobbies.  Dear ones have moved on.    Life has gone on and done so without me.

I feel like I am sitting on the rim of that canyon, catching my breath thinking “what just happened?” and “Hello? Where did everyone go?”

I guess I just have to start walking and find out.

 

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ACT V : I’ve had more use for Lamaze in chemo than I ever did in childbirth.

Act V

I’ve had more use for Lamaze in chemo than I ever did in childbirth.

The way I would choose to describe Act V of chemo would be to say that it has become familiar. It is easier in the sense that when the Neulasta pains come I know it will ease in 2 days; or when I am feeling nauseated I know what to do to settle those muscles. When my mouth tastes full of rancid chemicals, I grab the bio-tene spray. I am tired as all get-out, but I am in control.

“Just breathe…”

I have two kids, and both times labor was so fast that I could hardly catch my breath never mind breathe. But, those Lamaze classes were not wasted!!  I first of all lived through the teen years (BREATHE), and now – chemo.

When that tell-tale sign, you know that watery tingle at the back of your tongue?, when that starts up I focus, breathe in through the nose, slowly out through the mouth… and often times I am able to calm the tummy down. Or at least buy me enough time to hustle to the appropriate facility.

The “hee hee hoooo” breaths work with the Neulasta pains. They come on suddenly and are pretty sharp, the short breaths help to ride them out.

And that grande finale of Lamaze? That “push push” ?   Save that for the next person that asks “Didn’t you go for mammograms?”

We are aware.

Here is a great article written by Ann Silberman that I want to share.  As she states in here, ok, we’re all aware about breast cancer… now what?

We need the medical world to be able to DO something about it.   We need more researchers studying how does this happen? How do we stop it?  That’s where I feel most of the money and attention should be going.  Everyone is aware of the prevalence of cancer, all cancers.  We need the smart people to find out what to do about it.  Keep the awareness going, and keep the research going just as much.   I myself am on a drug just approved last year, so yes I know there is still research being done; I feel we need that to be the stronger focus.

Please read this intelligent and well written article, and share.

http://www.healthline.com/health/breast-cancer/turn-from-awareness-to-research

Act III

act3-001

We’re all so different; even when sharing the same experience. I am halfway through chemo and finding it to be quite manageable; but the thought of the surgery that lies down the road scares me and makes me very nervous.   I talked with a friend about this tonight and she said that months of chemo sounds more unbearable to her than getting surgery after which you are immediately recovering.

I’d like to share my moments of success in dealing with the chemo side effects. And I would really like to know what has worked for others in this area too. Here’s what has worked for me:

The nausea; I have fortunately inherited a cast-iron stomach but nonetheless have experienced the queasy yukkiness. The medications given to prevent it do a great job at keeping it at bay, but there still have been moments. I’ve triggered the problem at times. I drink a lot of water, and while true it is good for you to drink plenty, I would down a full glass which was too much for my stomach to take in on those sensitive days. Pepto-Bismal has helped me on those days, and drinking room temperature ginger ale or orange Gatorade. Another friend has had good results with peppermint tea. Ginger candy ( gin-gin ) is great. This worked wonders for me after my first chemo session, but my taste buds have been super sensitive since then and I have not been able to eat them again – yet!

And speaking of taste buds; my sense of taste gets really bad for the first 2 weeks of chemo. I have to eat small amounts that are not hot, and swallow it quickly. I feel like my mouth is full of something acidic and rancid. Things will smell delightful, but once in my mouth this awful taste is triggered.   Any taste is amplified, so spicy becomes super spicy, and so sharp that it hurts. I used to say I loved “food on fire” because of my love of hot and spicy; i.e.: my favorite pizza is Black Rock Pizza’s “The Brush Fire”. Oh man, I miss enjoying food! But, I know this is temporary and I will enjoy it all the more when I get my taste buds back. In the meantime, a friend told me she used Biotene spray. I will be testing that out after my next infusion. I also take the store brand of prilosec and tums, because this acidic feeling gives me bad heartburn too. What I can eat at this time that really helps is real Italian Ice. It doesn’t fill you up, it’s soothing, and made with real fruit so it is good for you too.

I have always been prone to canker sores my whole life, till finally a doctor told me to try L-Lysine. I take it that moment I feel a tingle of a sore starting, and it has worked. I rarely get them anymore. Now during this ordeal, I take it beginning day 7 after chemo until I get to feeling almost normal again.

For my skin breaking out, I soak in a tub with Epson salts – often times including essential oils of some sort. This is very soothing in and of itself, but it is good for my skin too. I use coconut oil for moisturizer (moisturizer is essential in the high desert where I live in Reno Nevada). When I first break out it feels very itchy, like an allergic reaction. So for those times I use hydrocortisone, and twice I took Benadryl for the itchiness.

I get cold easily, so I keep some kind of heating wrap with me always; an electric blanket or a microwaveable heating pad. And now that my scalp is not sore, I can wear hats, scarves, and wigs. I’d suggest browsing etsy. I have a couple hats from here that I really like:  https://www.etsy.com/shop/CJHats

and here: http://www.curediva.com/shop-by-product/hats-head-covers.html

I hope these are helpful tidbits for someone; feel free to share your own helpful hints too!

Hair

When performing, if your scarf, earring, whatever, falls off – you don’t stop to pick it up and put it back on; you kick it to the curb and dance on!

There is a theatrical side of me that really blossomed when I started belly dancing.  My spirited dance teacher used to say, “There’s no such thing as ‘too much’ in belly dance!”  ie: Big earrings, tons of jewelry, layers of costume, lots of make-up and for us, always, glitter.   This one year I bought a big circle skirt for a particular performance, and it was a gorgeous bright fuchsia. My hair was a dark burgundy at the time and I remember giggling as I told my hairdresser that I wanted to try something a little crazy with my hair: fuchsia highlights, as bright as this fabulous skirt I was dancing in.  That’s where it all began; a few bright highlights that became bigger and bolder with each follow up appointment til one day I suggested we just do the whole thing in fuchsia.  Oh it was beautiful and FUN!!  From there I have tried all kinds of color combinations as the products became available.  It has been a conversation starter and topic of interest for years! And my answer to the inevitable question of ‘why’, or ‘what’s next?’ was to explain that my hair was simply a whimsical accessory and I would change it as easily as I changed my earrings.  It wasn’t important, it wasn’t a statement, it was merely fun.  I don’t think many people really understood that point of view. So, of course as friends and coworkers heard of my diagnosis of cancer, they thought of me and thought of my colorful hair.

Cancer = chemo = hair loss.

I now know many women who have been through chemo, they’ve shared with me how they handled the loss of hair. For many it was a ceremony or party kind of approach, with the sense of taking control of what was happening to them. Surrounded by friends and family they cut off their hair when they chose for it to happen, instead of watching it fall out. They had great names for their parties too: “Buzz Party”, “Coming Out Party” and “Close Shave Party”. These are perfect ideas for those that did them, but it doesn’t mean it is right for everyone. It wasn’t what I wanted. I don’t feel festive about this process.

What I want is to feel what is happening; I want to be in tuned. I am taking in a slew of drugs to kill this cancer, and that is what makes me feel empowered and in control. In the midst of this battle, I’m not going to stop to clean up and look pretty; I’m going to keep blasting at the enemy. It is the use of chemo that is empowering me.

And as my hair falls out that shows me that the drugs are working. Looking at a handful of hair I can say “Ha! Dying off like all the cancer cells inside.” And I triumphantly toss that handful of hair in the trash; Kicking it to the curb.

Hair Show

Turbulence

My appointment was bright and early on a Wednesday morning for my first chemo treatment. I watched the warm before the storm blow through tempestuous skies, tumbleweeds flying every which way.

As I sat in the waiting room, as the minutes passed by, thoughts I had been pushing away started swirling in my head (as unwanted thoughts are wont to do.) “After a lifetime of trying to live healthy and being careful of what I put in to my body I am now going to willingly allow poison to be pumped into me?”  “How can this be right?”  “I work so consistently to take care of my health, and now I am going to negate all that with poison?”

I wallowed in this sad confusion, getting myself more and more worked up for several minutes.  I was nearly in tears when my more ‘logical and in control’ part of my brain took control and said   STOP THIS.

STOP THIS NOW.

I remembered how my son would hit the button on his Nintendo system and say “Do Over” when he didn’t like how a game was going. I seriously did not like the way I had started this day, and sure wanted a “do over” myself. Without thinking, I found myself standing up, then walking out the door. Leaving everything: purse, blanket, notebook, phone; I just walked to the parking lot right outside. I looked to the heavens and in the midst of the wind I shouted “DO OVER!”   I stomped my feet and glared at the pavement and with each stomp I shouted,

THIS is NOT the way it goes.

THIS is NOT how it’s going to begin.

THIS is NOT the way I do things.

I paused, I stood looking at the door, I swear the wind stopped for a moment.

Out loud I said, “I need help. I need this medicine. I need this ammunition. I’m going to battle and this is what I need to attack with. I have to give my body the tools it needs. I need this. Give me the power to attack. I need this.”

I pulled my shoulders back, snapped my head up, and took a deep breath. A raindrop fell on my cheek as I marched back inside.

I gathered all my belongs, and within a few minutes was called for my appointment. I made a point to look at each person working with me, taking my vitals, showing me to the infusion area, and the RN hooking me all up to everything. This was my team, I was heading into a battle and I was depending on them to give me everything I needed for this battle. They did their part and now I was ready to do mine.

Angels amongst us

Angels around us

In a dark world we shine our light and gravitate towards those that shine a light back to us. The everyday life is filled with small interactions of kindness and consideration, spreading a little warmth between smiles.

Someone at work happened upon an ad for wigs, she thought of me and emailed the link. I knew that I *should* get a wig, but had made no effort to do so. So, I replied to the ad, contacted the person, and we made arrangements to meet the next afternoon.

I was surprised to meet a very young woman; and she had survived 3 years of chemotherapy. She had survived and was now 3 years into recovery. And – she wanted to give away her wigs to a chemo patient who needed them! These are expensive items, and she just wanted to pass them along to help out another person. She told me how to care for them, tips for wearing them, and I came home with 2 wigs – a long and a short one. This beautiful young mom was certainly inspiring to me.

Then today, several friends had a laying on of hands & a prayer circle for me. This truly touched my heart and left me feeling uplifted and strong. I know I am heading into a battle, but I know more and more every day that I am not walking alone.

Let’s not forget the angels at work around us, even on the simplest of days.

When life brings its difficulties as it always will, then those moments of light and thoughtfulness become ever more meaningful.   They shine a light reminding us what to focus on – the goodness and positive parts of our life.

I’m feeling grateful, and feeling blessed.IMG_0595-001