Nourishment of a new Kind….


The hard thing about being human are the times when you are breaking through a glass ceiling to a new level of awareness.. No one breaks it for you.  It is your hammer, it is your choice.  To acknowledge and break, or to sit there looking upward and see all the spots in the glass that time forgot to see or to you just forgot to clean.

Somehow, when you are below this threshold, hammer in hand, what you find you are preoccupied with is, at least for me, are the ‘shoulds’. Should I break the glass?, Is this the right time? Should I tell the truth about what is happening to me right now?  should I risk everything to tell the truth? And what will happen if I do? As in my case,  - will I die?, Will I be abandoned? Will I let my family down? And because it will come out that I had failed to use ‘Windex’ to keep my  my glass ceiling sparkling clean, would Netflix  now deny me future streaming and viewing privileges of ‘my big fat greek wedding’?

So about seven weeks ago, for no reason I could decipher, I started unintentionally dragging my left foot as I walked. I started to become extremely forgetful, and the balance and strength I had worked months/years on cultivating, were being challenged on a minute by minute basis. Scary stuff.

I think I fell 5 or 6 times in a week after completing several years in a  ‘fall free’ status. something my PTs saw as evidence of ‘normal’ cognitive and motor cortex functioning.I don’t think I’ll ever forget the panic I felt when I fell one day when I had the classic TV commercial playout in my head, ‘Help I’ve fallen and I can’t get up…my legs didn’t have have the strength to get me up, regardless of how many times I uttered my personal mantra,

” I have the power’

As I lay on the floor looking up – I saw myself in a mirror looking down on just the other side of the glass ceiling. I wasn’t going anywhere soon. I began berating myself for this ‘new change’. This was not supposed to happened especially after all those wretched weeks/months of high dose chemo and radiation! – I thought I earned the ‘right’ to be symptom free for at least a few years! Who was my GOD to now deal me another challenging hand?  I just didn’t understand their intentions. This new twist, seemed cruel and usual punishment .I honestly  took it very personally. I was not willing to think differently, I was in a space of total mental negativity.A bad place for a person with Cancer.

I ask, Can you blame me?I soo wanted to languish on the floor in my denial and resentment, and not deal with reality, no matter what.

(To be sure,  I come  prepared…I stash TP throughout my apartment for this very purpose in self deception).

But the problem with doing this long term, is that invariably, nature calls and you have to get up. or try too, or you have a HUGE mess to clean up ….alone, angry and frustrated.Better to call my doctor,and be honest.which is what I did.

And the sparks began to fly!

Next, the Uber powerful steroid dexamethasone was started twice a day, to begin to reduce my apparent brain swelling, a  Perfusion MRIwas scheduled within days of my calling, numerous blood tests,me telling the doctors and nurses the whole truth and nothing but…. I felt like all of my life was on a photographer’s light table and the doctors were using a huge loupe to look at all angles of me.I feared I had done something wrong. I lost the progress I had made this summer after all that *^%%* suffering.  I started to wonder should I feel like a failure?

Certainly that’s a choice one can make, There are aspects of cancer that you can choose to hide from yourself, sometimes you feel compelled to do this exercise in personal state of denial, as a way to get up in the morning when you are hurting so from treatment, you are SO tired of setbacks and want to  have a safe ‘world’ filled magical thinking, and no trauma – emotional or physical.  To live in ‘all will be well’ world.as Loiuse Hay says. BTW, I love her!

But, I digress…

sorry

Part of the ceiling breaking, included a visit to my two favorite doctors on Earth. A rare treat for  me, as they made time in their incredibly busy schedules to not only offer surgical counseling , but we had agreed on getting a second opinion at the same time I was at Univ of Chicago medical center.

At the first meeting the info presented was very hard to hear and I was told I ran a 5-10% chance of more disability following a long asleep surgery.

The tumor had indeed grown very large(HUGE!), still not impacting eloquent areas – like the first one, but the thought now was this growth was more of the same original cancer, just  really aggressive.When I heard I’d be asleep, when I processed knowing the first surgery was a 1-3% margin risk/injury and I had come out profoundly impacted and my life as I had known it was no longer the same, nor ever would be again.I told my beloved surgeon, to whom I trusted with my life,that I declined surgery and treatment; wishing instead to finish my life with a sense of dignity and responsibility for myself and release all from a sense of burden regarding my end. i was again strongly counseled all I had to look forward to was  a few months of agony before dying.

Still again, I declined treatment,  Personally stunned with what my soul was saying with such depth of faith and ease.  Somehow that glass ceiling which had been holding me bound in fear,had been clean of all imperfections, and I saw the God of my understanding, waiting there for me with their arms open.I felt no fear, no anxiety. I was being to true to my highest self.I was so proud of myself, I was not a failure in any sense of the word.

In the meantime my surgeon left the room, and we all were sitting there in stunned silence. glass everywhere…

IAs I sat there with my parents, my brother and sister on speaker phone in stunned silence,;I  contemplated how in the world to say goodbye to you all. To let you see that my choices were my own and my path, though I was and now am completely in the dark at the present moment, was a place I could live with with; my faith as my guide and my compass.I would walk forward trusting light would dawn.

Then Dr #2 came in the room…..

He asked if Dr #1 had gone over options,

I said, ‘yes’ and I had declined treatment and surgery’.

He asked, had Dr#1 given you other oncology treatment options?

I said,”No…. he had not…..I did not know any other options, other than I was going to die in 1-3 months – a horrible death”, as I was told by an expert whom I trusted.

Then a miracle happened.Someone struck a match.

I was given a precious gift.

This is seriously a true story.Two years ago, I happened, completely out of the blue, to see a Ted Talk featuring Dr. William Li, who was presenting a talk on cancer and foods that cause an angiogenisis effect in the body and  brain.It was absolutely fascinating. speaking as a former chef.

I put this talk, and the intuition I felt for me personally as as a potential viable option, in my mind in a secure area – never to be forgotten, and to my neuro-oncologist’s credit, he patiently listened to me as I repeated brought up this style treatment as my cancer advanced and morphed; sharing with me that I did not qualify to use the drugs out there even though I was hearing great new from friends using the drugs to halt their diseases.Please watch and check out his foundation.frustration!

And then as Dr#2 sat there – me thinking I was a goner, he offered me Manna.He said out of the blue, “Anna, have you ever heard of drugs that have a angiogenesis impact on tumor blood flow?

Oh my God!  Oh my God! This is what I had been waiting 2+ years for!

The Universe had come into that room of darkness and not only broke the glass ceiling for me , but filled the room with hope, light, faith and grace. I now understood fully the meaning of the hymn, Amazing grace’.The God of my understanding was my partner and he had not left on the floor ,alone and paralyzed, but he gave me his hand to hold onto as I got up.  His belief in me, was now my hope and strength, to persevere come what may.

It was noted, my treatment, avastin is experimental in my treatment regime. The idea is that it will stop blood blow to my brain tumors, as I supplement with foods that Dr Li talk about.

I get to incorporate my culinary background and self healing together, infusing all with positive affirmations and a total elimination  of fear based thinking.. Very Powerful imagery indeed.

To that end, I’ve had a surgical port put into my chest, so my every 2 week infusion will be a piece of cake! Tuesday 2/18, my 52nd birthday not only will I celebrate with Avastin, but I live the day feeling  truly alive and grateful for all the broken glass around me.

What I love about this image is that glass can be recycled into new and better things……

I love you all and cannot wait to share this next year with you!  Thank you for your prayers – reading my blog entries and walking with me.

Anna

Aside | Posted on by | 4 Comments

a little color to this dreary, cold day in IL…..

Ptimate Pencils

Hi all !

This list below is ‘borrowed’ from a great blog I read all the time .you can see the original here, if you like – it’s great! :http://www.marcandangel.com/2012/09/24/12-things-my-grandmother-told-me-before-she-died/

But before I start… I’ve always loved gorillas; a dream of mine is to see them crouching in the midst, in their native habitat. The culmination of my affection arrived on my doorstep one birthday many years  with the gift of a life sized chainsaw carved gorilla, that to this day, graces my parents driveway.

When I saw this picture today  - it came up when I googled ‘wisdom’ with an image filter – I saw him….and whoa!……This primate means business.

But he’s in color….and to me that represents hope – encouragement, in this frosty climate.And when you identify the medium used to produce the image – I took it as a jab in my side to get writing….

Additionally, today I completed watching the episode ‘The ascent’ from the DS9 series – Season 5 .It chronicles an heroic journey 2 characters make to stay alive. The story, conflict and imagery, resonate deeply with me.2 sides of a coin – 2 sides to myself and my experience with cancer – and how the characters portray so many aspects of my journey with cancer

Truth be told, Star Trek in all it’s forms has been my personal support group through the past 2 years since diagnosis.This is not a new phenomenon.Many people I know glean wisdom and insight to life and living,  in the varied cultures, character and messages implied and or featured. Its a funny thing – I often see episodes with the very conflict or message that I need to hear/see. I watch, and I evolve. I like this….

And I saw this list today -I felt the ‘Federation ” Support group was (FSG) teling me:to boldly go(of course adjusted for my gender) visited me, Dropping by with some universal tidbits of wisdom and things to consider courtesy of the blog

This list is borrowed from a blog I read all the time .you can see the original here, if you like:http://www.marcandangel.com/2012/09/24/12-things-my-grandmother-told-me-before-she-died/

  1. Breathe in the future, breathe out the past.  No matter where you are or what you’re going through, always believe that there is a light at the end of the tunnel.  Never expect, assume, or demand.  Just do your best, control the elements you can control, and then let it be.  Because once you have done what you can, if it is meant to be, it will happen, or it will show you the next step that needs to be taken
  2. Life CAN be simple again.  Just choose to focus on one thing at a time.  You don’t have to do it all, and you don’t have to do it all right now.  Breathe, be present, and do your best with what’s in front of you.  What you put into life, life will eventually give you back many times over.  Read The Power of Now.
  3. Let others take you as you are, or not at all.  Speak your truth even if your voice shakes.  By being yourself, you put something beautiful into the world that was not there before.  So walk your path confidently and don’t expect anyone else to understand your journey, especially if they have not been exactly where you are going.
  4. You are not who you used to be, and that’s OK.  You’ve been hurt; you’ve gone through numerous ups and downs that have made you who you are today.  Over the years, so many things have happened – things that have changed your perspective, taught you lessons, and forced your spirit to grow.  As time passes, nobody stays the same, but some people will still tell you that you have changed.  Respond to them by saying, “Of course I’ve changed.  That’s what life is all about.  But I’m still the same person, just a little stronger now than I ever was before.”
  5. Everything that happens helps you grow, even if it’s hard to see right now.  Circumstances will direct you, correct you, and perfect you over time.  So whatever you do, hold on to hope.  The tiniest thread will twist into an unbreakable cord.  Let hope anchor you in the possibility that this is not the end of your story – that the change in the tides will eventually bring you to peaceful shores.
  6. Do not educate yourself to be rich, educate yourself to be happy.  That way when you get older you’ll know the value of things, not the price.  In the end, you will come to realize that the best days are the days when you don’t need anything extreme or special to happen to make you smile.  You simply appreciate the moments and feel gratitude, seeking nothing else, nothing more.  That is what true happiness is all about.  Read Happiness Is a Serious Problem.
  7. Be determined to be positive.  Understand that the greater part of your misery or unhappiness is determined not by your circumstances, but by your attitude.  So smile at those who often try to begrudge or hurt you, show them what’s missing in their life and what they can’t take away from you.
  8. Pay close attention to those you care about.  Sometimes when a loved one says, “I’m okay,” they need you to look them in the eyes, hug them tight, and reply, “I know you’re not.”  And don’t be too upset if some people only seem to remember you when they need you.  Feel privileged that you are like a beacon of light that comes to their minds when there is darkness in their lives.
  9. Sometimes you have to let a person go so they can grow.  Because, over the course of their lives, it is not what you do for them, but what you have taught them to do for themselves that will make them a successful human being.
  10. Sometimes getting the results you crave means stripping yourself of people that don’t serve your best interests.  This allows you to make space for those who support you in being the absolute best version of yourself.  It happens gradually as you grow.  You find out who you are and what you want, and then you realize that people you’ve known forever don’t see things the way you do.  So you keep the wonderful memories, but find yourself moving on.
  11. It’s better to look back on life and say, “I can’t believe I did that,” than to look back and say, “I wish I did that.”  In the end, people will judge you in some way anyway.  So don’t live your life trying to impress others.  Instead live your life impressing yourself.  Love yourself enough to never lower your standards for anyone.  Read The Last Lecture.
  12. If you’re looking for a happy ending and can’t seem to find one, maybe it’s time to start looking for a new beginning.  Brush yourself off and accept that you have to fail from time to time.  That’s how you learn.  The strongest people out there – the ones who laugh the hardest with a genuine smile – are the same people who have fought the toughest battles.  They’re smiling because they’ve decided that they’re not going to let anything hold them down, they’re’re moving on to a new beginning.

Okay – Truthfully it’d been a little rocky lately..Kidney infection from Hell,South Pole temp making it challenging to want to get up in the morning – let alone go outside; wanting to nest in my chair under a wrap sippinging hot tea or pumpkin spiced cold coffee I make with sugarless Illy coffee in little cans, Ice, lactose free Organic Milk and coffee mate Pumpkin flavored creamer.(I’l lalways be a chef/Barista  in one form or another) :-)

Recent Highlights include hair!!!!! Attending Tai chi classes in a hot water therapy pool at my gym., Holidays with my sister and family, Being alive on Jan 1st 2014….I seriously had my doubts this year..and that my arm and hand are improving – I had developed a serious case of carpal tunnel, leaving my fingers and arm numb, and that I’ve made it almost 10 months without any cancer treatments or setbacks.

gratitudeWriting this last line, brings tears to my eyes.Lastly, asking for and getting Dragon software and headset…My next Upcoming blog entries  will be dictated ….be prepared! :-)

Finally This next sentiment has  stayed with me as a source of strength:

Lift your inner gaze beyond apparent conditions to what you can imagine is possible. See with the eyes of faith and remember that with God—with conscious awareness of the higher true Self—all things are possible.—Ellen Grace O’Brian

all my love to you all!

Happy New Year!!!!

Anna -

Image | Posted on by | 2 Comments

Are you ready?? I’ve a riddle…….

I’ll give you 2 clues………

large-passed! driving test +bathing cap brain

Hi my friends!

You guessed it right! – I’m driving and I’m swimming!

She shoots…She SCORES, And the crowd goes wild!!!!!!

smiling

Deep Breath…

I seriously cannot believe my journey since I finished the last of my radiation and chemo treatments in May! At that point in time, I would ‘walk’ 50 feet and need to rest for 20 mins, I was a pale shade of gray – I think my body was having sympathy pains with my gray matter  - and I never thought I’d think clearly again. I had started treatment induced menopause – and I was so grateful to have no hair as the hot flashes we/are going thru my head. Thank God for small favors…

So to go from there to where I am today is nothing short of miraculous. I am not intending on giving myself a pat on the head consciously, but in one way, maybe I am. Is that so wrong? This morning I privately thought to myself;

“I am thrilled to be alive, I am joyful; and I am hopeful.” (seriously)

I know things may go array in the future, but the ‘now’ is what is most important, for you, me, everyone.  Living in the now is where life is met head on; not yesterday, not tomorrow, It’s now….

As my driving instructor told me repeatedly, “YOU are in the driver’s seat – YOU have as much right to be on the road in this life, as the next person….. Now make that left turn – and don’t forget to signal!” What a perfect metaphor in this new phase of my life -

New Motto:  All fear is bondage, and I refuse to be held back if I have anything to do with it.

To that end, I begin and end each day in a quiet place of contemplation, as well as listening to a very interesting audio recording called ‘Super Longevity’ by Centerpointe Research Institute, where I visualize my body’s DNA activating my body’s healing energies.  That practice, plus a host of supplements (caffeine included….[It does great things for my speech], are ways I meet the day on as stable footing as possible.

This Tuesday, I’m due for another MRI – the 3rd since my formal treatment phase ended. Now with driving, tai chi classes in a hot water pool several times a week, and reclaiming my place on the road of life, I don’t have time for cancer :-) I’ve forgotten I have it – a professedly long term effect of successful brain surgery and treatment……

To date, I’ve been in Boston at a favorite night club during college, ‘Spit” for a party (with serious earplugs), I’ve been to Ravinia to hear Lyle Lovett, I did my annual pilgrimage and hiked around Walden Pond with my buddy Lynda, I’ve been to see a cranberry bog being harvested in Cape Cod.

Plus I’ve reconnect with many friends and loved ones, and not to mention getting various treatments, in short, I’ve been a busy girl.

On a serious note, I reflect, with tears of gratitude that the last time I was not in treatment, I had only a matter of a few weeks till the cancer started spreading and morphing,  and Tuesday, if all goes well, I will have completed 4 MONTHS without progression.

I have no appropriate words here, but thank God!

And thank all of you for your prayers and healing energies sent my way, and for your help.  Seriously Thank you.

During my last treatments, and then in coming back from the dead, I came to a deep place inside me where I encountered suffering in all forms. At times I thought I’d be lost in the abyss literally and figuratively.  I felt I was living in my own private Gethsemane, and literally I was also trapped a few times in my apartment, too weak to do the 18 stairs. I wondered if/when it would change.  It did.

I’ve come to learn, our bodies want to heal themselves – if you just get out of your way -

This I know on a profound level, and I have a great story to illustrate this point. I recently started to develop symptoms of carpal tunnel in my right hand and arm. This explains the delay in my mails.

I couldn’t type or talk on the phone without my hand and forearm falling asleep.  I was absolutely freaking out, panicking, totally afraid I was to lose the use of my other arm. I tried creams, braces, straight massage, special exercises at the gym. I’d wake up at 4am most mornings in agonizing hot pain in my fingers and arm.

I reverted to my old ’type A’ way, trying to push myself thru the day with an undercurrent of fear coursing thru my veins. I even had a nasty nerve test which showed I didn’t have neuopathy from chemo  treatments, nor carpal tunnel.

I literally came face to face with my biggest fear – NOT that I would die of brain cancer – but I would be alive, and have 2 arms that didn’t work. This potential situation was totally more than I could deal with, even with my deeply held faith. (even now as I recall this period, I have tears in my eyes).

This propelled me to ask for a spiritual healing. I had no idea if a healing was possible, but I asked for help, and began to hear I needed to listen to my body’s needs first. This listening is a work in progress, but I am so committed.

Secondly, I discerned I needed to find a highly skilled masseuse therapist; one who was not afraid of a disabled woman with 2 affected arms, and who, by the way, has brain cancer. I some how found her and she is a God send.

My treatments are trigger point oriented where she identifies the most painful areas in my neck, arms, back, etc and she works there, as I cry/vocalize thru the pain, to release the muscles that have fused together over time. It is excruciatingly painful at times, but with each treatment, I can stand more and the muscles release more.

To my utter amazement, my right arm/hand is improving, AND to my utter disbelief and joy, the fingers in my left hand are starting to move independently again. I never thought I’d see the day.

Let me repeat, To my utter amazement, my right arm/hand is improving, AND to my utter disbelief and joy, the fingers in my left hand are starting to move independently again.

Against all odds, not only is my right arm improving, but my left arm and hand are coming along for the drive. Get out your kleenex……

The other day for the first time ever I was able to crudely touch each finger to my thumb using my left hand!

I even will type my name with my left hand at the end of this mail. All through my treatments I would make progress in my arm/hand in rehab, to then lose it every single time I started popping chemo pills. You cannot imagine how frustrated I felt as the months went by with success followed by certain setback. Kleenex time……

And to see my left arm now moving in the warm water buoyed by the lack of gravity, and the heat engaging my muscles to loosen and move, as I remind my brain/nerves there still is a left side to my body and it wants to listen and act.

This tells me that all along, my body was waiting for the right circumstance to reactivate.

I just hadn’t found the way to get out of my own way….yet.

In recent weeks, I have to tell you several times in the pool I have felt overcome with emotion and gratitude to God, to my body, and to my faith for not abandoning me in my suffering, though it was sorely tested.

And to boot, my Neuro oncologist, said out of the blue at my last exam,

“Anna you should investigate driving again” Can I say?……..WHOA!

Fast forward……20 hours of private one-on-one training with a driver ed teacher who specializes in rehab diving, further testing and specialized eye and spacial/cognitive testing, and yours truly has gone thru 2 tanks of gas in my prius which gets 48-52 MPG!  Remember the song?…’Ain’t no stopping me now…..’

My parents are so happy to not have to drive me everywhere, they’ve already gone through a case of kleenex, and they finally have started to take vacations and play again…I’m so happy for them!

So the question you all have ( I just know it)……what was Anna for halloween?….

Seeing that I still have 1/2 a head with dark hair and a half with peach fuzz with a very strange hair line…. I put 2 poka-dots on my head – one white and one black,, and I went as yin yang…..

NewImage.png

Oops! Time for lefty……

all my love,

Anna

Posted in brain cancer | 2 Comments

POSTED: No Construction Zone!

my current thoughts

My current thoughts and potential tattoo site……

Hello and welcome to my head again!

Finally there’s more than peach fuzz happening, and even though I have a LONG way to go to being able to hold onto my hair, Can I be honest here? I LOVE being bald!!

Talk about being cool in the summer, talk about putting a face to cancer, talk about never having a bad hair day….. well, I might want to reconsider this given my current hairline….

A story of recent triumph; I took my trip!  And while in Long Island visiting my sister, we attended a Shabbat/celebration where  incredibly brave, elite trained Israeli solders wounded in combat, were honored by about 80+ people on a trip they made to the US being sponsored by several families in the group.  I felt truly humbled to be in their presence, as you knew without their saying, these men/women had  experienced extreme trauma and fear, many now suffering from PTSD.

I thought many times that night how, as I was approaching my awake brain surgery, how afraid I was. I also remembered having the distinct feeling that if I could speak with soldiers in our armed forces about how they approached combat and the fear of the unknown, I might just have enough courage to ‘partner with my fear’ as my friend Sarah L  coaxed me into considering and adopting the mindset, not only for the surgery, but in general in the months since that fateful day.

As I sat there listening to the soldier’s stories of trauma, injury, their internal personal call to duty to return to action as soon as possible, and ultimately taking their new found wisdom and sharing hope and strength with other battle worn comrades, I thought how incredibly lucky I was to have a decorated soldier counsel me with her wisdom and real life experience. I also thought, I wish there was a way to unite cancer patients and battle worn military personnel, to share hope and strength.  Both groups must endure extreme hardship, pain, loss, and they are compelled to continue to fight. In the case of  cancer patients, the symptoms/diagnosis usually comes with no warning. Unlike a trained warrior, I was totally unprepared to understand what I was walking into or how to handle my fear of the impact brain cancer would have on my life. I was in serious need of ‘combate training’.

I came out of the this Shabbat wishing I could find a way to connect both groups, as I am convinced a kind of healing synergy would occur. If you have any ideas or contacts who might be open to talking about  the idea of soldiers and cancer patients sharing hope / strength and how they partner with fear and trauma, I would be most grateful for this info.  I could then follow up on my own.

well, I have good news – no, GREAT news! There has been a second MRI showing progress! The images are my head preCRT (chemo/radiation), post CRT, and now, a few months after treatment ended. At this point, there is no treatment ordered until there is cause…..

my head 8:20 copy

on:offLIGHTBULB moment…….. courtesy of the musical Pippin and Berthe:

pippin

‘Oh, it’s time to start livin’
Time to take a little from this world we’re given
Time to take time, cause spring will turn to fall
In just no time at all….’

What’s up now? Living and more Living!  I celebrated my results going to my first live music concert in 2+ years with close friends. GREAT time!!! And maybe driving will come back into the picture too – I get tested for the first part on Friday.

Fingers crossed!

Get a copy of this song if you’ve never heard it, or better yet, watch Martha Raye (in her 80′s) on youtube:

http://youtu.be/jIfAGN6o3Jg

All my Love – until next time,

Anna

Posted in brain cancer, broadway lyrics, chemo treastment, healing, radiation and chemo treatments, steroids, Trips | 2 Comments

Peach Fuzz

peach fuzzHi my friends,

I know it’s been awhile, and though it has been a long time between mails, I’ve been up to my bald head in chemo and radiation side effects. Without going into details, quite honestly, it’s been an agonizing time for me…..agonizing!!!!!   And the only thing that HAS and IS getting me thru this, is the knowledge that i am not alone in my agony – others suffer far worse, and no, I’m not trying to be Mother Theresa here, but i keep telling myself it is a matter of time as to when the fatigue, cloudy thinking, nausea, walking into door ways – left side neglect, muscle weakness, and hair starts to grow again and this chapter draws to a close.

Last week, to address what feels like never-ending muscle weakness and fatigue and because I’ve regressed in my physical abilities from treatment, I started day rehab therapy again at RIC outpatient. I’m doing 3 days a week, 6 hours a day of intense speech, PT and OT. I tell myself it’s a piece of cake compared to what I did post surgery when it was 8 hours a day, 7 days a week. I’ll work this schedule until mid August, and then hopefully i’ll be ready for a life.

All I really want to do is get myself strong enough to walk in the pool at my fitness center. I don’t know why this is such an important goal for me; I’ve had to give up the prospects of ever driving again. But having the strength to put on / take off a bathing suit, put on water shoes, get into and out of the water, plus walk up and back several times feeling the cool water on me, seems like heaven, and a powerful goal for this zodiac water sign Aquarian. Plus if I’m still bald, I don’t have to deal with a bathing cap…. True the ladies at the gym will miss seeing my head clad in a flower petal chic bathing cap…… But they’ll get over it.

bathing cap2

my current favorite…. if I have to wear one……

In the midst of my days, I have been thinking a lot and sleeping too. Pacing oneself when living alone is, challenging. I’m learning very slowly to ask for and accept help, as I’ve honestly really needed it. I’ve been developing a sense of acceptance, though it is truly a challenge for me not to push myself thru things as I always have done. A workaholic, ‘push myself aholic’, never time to smell the flowers lifestyle has met her match, while recovering from my most recent treatment.

No I’m not going to preach the need to stop and see the small things as a way to find inner peace. But admittedly, now I have started to rethink my outlook. And though i am kicking and screaming at times, i am adopting a similar mentality, it’s not because I have a new Guru; it’s my simple truth now – its my very survival…….I only have so much energy and mental clarity in a day. I am now learning to honor and pay attention to what i’m offered….and be grateful.  I don’t offer this emerging doctrine in a shame- based way ( ie. children are starving, you should be grateful for the meal in front of you).  But to approach the day’s moments, maybe as a child sees the world, with delight and wonder.

A tall order for anyone who has past thru childhood and is caught in the present world filled with missed expectations, loss, pressure and deadlines and mis-made coffee drinks. ( I can say this as I worked for Starbucks, and handed out my fair share of incorrect drinks.).

So the trip is on hold, and my social life consists of lots of Drs appointments, and I’ve just completed watching the entire West Wing series in between sleeping. fabulous! I’ve been a terrible responder to emails, though I’ve totally appreciated your calls and mails – but honestly many times I’ve been to tired to collect my thoughts coherently. My excuse to day is, I made a goal for myself that if I hadn’t sent out a blog mailing by the time peach fuzz started growing on my bald head, I drink kale shakes for eternity…….

So I ran my hand over my scalp today, and…….no time like the present….. BTW it will be months and months before I will attempt a comb over…..but I’m getting my polyester pantsuit ready for the unveiling….

FYI I attach a recent MRI ‘slice’.  Think if you cut my head open horizontally and looked side, this is what you would see;  the white blob is the tumor, the dark black ‘hole’ is where the resection took place, and the 2 pics reflect different time frames.

The one on the left was after the high dose chemo failed.  The second was taken in June.’13. And while there is a ‘good’ change from one to the other, we are hoping in August when I get the next one that there is no new growth, and further shrinkage . (I’ve been thru 2 relapses thus far) Fingers crossed please prayers are gratefully accepted.

Until next time….

all my love,

AnnaB

brain before :after CRT

Posted in brain cancer, chemo treastment, healing, radiation and chemo treatments, steroids | 4 Comments

checking in……

LilyValleyBlossoms2

Hi all -

This is a short post, I hope to expand in the weeks to come.

thanks for the notes/mails. I’ve really appreciated them.  After I finished treatment, I severely crashed, not only with the treatment accumulation, but also with the mounting fatigue from all the toxin in me.  I’m also currently in a prescribed steroid withdrawal period, which is it’s own form of Hell. I’m quite weak, nauseous, cold all the time, and my mind doesn’t work as clearly as before – I’m told it will get better in about 3+ weeks, when I’m off the steroids totally and as I continue to detox – I hope.

I’m sorry I’ve not sent a mail before now saying I’m done – but this current difficulty started a few days before the chemo ended, and within 24hours after I finished chemo, I was on the steroid reduction program……Talk about walking from one fire to the next!

Steroid tapering is serious business, as is detoxing.  I’m sorry, you are me getting at a tough time. I didn’t expect this – I thought once treatment was done – I could relish in my new ‘freedom’.  I’m seeing It will take awhile longer than I thought/hoped. But I’m trying my best to do what is required of me – to push thru this phase.

I know you are with me on this one – Something I hold dear, and are very grateful for.

I’ll be in touch -

much love,

Anna

Posted in Uncategorized | Tagged , , | 3 Comments

Ah, Ah, Ah Stayin’ Alive…..

Hi My friends,

I’m deep into Chemo/Radiation treatment, and I wanted to surface to say I’m alive and kicking, as best to be expected….

I also want to thank you all for your support on the recent Walkathon I participated in for Voices against Brain Cancer. (FYI ,The organizers are still uploading images from Sunday’s event.)

http://www.voicesinmotion.org/site/TR?fr_id=1141&pg=entry

Here, I completed a 1+ mile, gave a short opening speech (at the request of the event planners) to the 500+ people participating in the event as a survivor, and then after the walk, met several other truly courageous people who also were being awarded with 2013 VABC Courage awards. See Mine below :-)

award

It was a beautiful day – full of hope, inspiration, great friends, tears, new connections, and Believing!

I also learned something very important too.  I had to fully commit myself on all levels to be there – I had to do cardio exercise 4-5 day a week (which included 2 days + with weighted leg machines working each leg to it’s maximum, and trainers for added safety, the 3+4th day was specifically arm work ), I had to eat very well, I had to sleep as best I could, and in each of these little steps – day by day, I had choices I could make.

Somedays I pushed myself very hard and felt like the drill Sargent from hell, other times I took a less harsh route and had to convince myself that ‘less is more’ in the scheme of things. Both were personally challenging on many levels.

And it’s been very emotionally and psychically challenging too, being part of these fun, life-affirming events, but deeply wishing I were at a place in my treatment regime whose end coincided at the same time with all this fun; But it wasn’t meant to be. I had to accept this fate at the onset.

I’m waking up still with no hair; my swollen face; the 35+ pills a day; the remaining daily schedule of outstanding radiation appointments; the multiple weeks of chemo to go; my 4-5 times a week exercise schedule; my constant monitoring of bodily functions for brain swelling; etc. And there is no stopping at this point…….

And I ask, do I regret this side road adventure with all the twists and challenges I had to take to prepare? Do I regret saying yes to participating because life after the ending isn’t easy?  Hell No!

I look and contemplate the many who have gone before me – who came literally here to show support in their wonderful ways – who have read this blog as I’ve fumbled my way thru it – and I feel recommitted to seeing the current treatment phase in all it’s incredibly grueling nature, thru to the end of the course – even with my chemo brain and incredible fatigue. I continue for you – I continue focusing ahead for me…..(if I’m honest)

In retrospect, I had to choose what my goal was for the walk/run before I started on Sunday.  I picked one step. Still I stay with that goal – one step at a time, till around May 20th, when I can start to transition and take several moments feeling gratitude, relief and profound thankfulness to all my support posse, myself, and my mostly my Creator for getting me thru this trial.

So – Onward I go… Stay’n Alive one step at a time!

I love you all!

Anna

Posted in brain cancer, chemo treastment, healing, steroids, Trips, Uncategorized | 2 Comments