A Kansas Hurricane

A Kansas Hurricane

I looked back with a smile as I was leaving to see my mom holding the screen door open.  The little white house with the deep gray roof, the simple paneling, a window on either side and the narrow walkway that led from the porch to the sidewalk said “Kansas” with an exclamation point.  I could see a pale blue sky and little puffy clouds overhead.  It should have been a perfect day.

I was headed to school.  Mom was standing in the door, like she always did, wearing her favorite maroon shirt.  Standing tall she was squinting just a tad so that she could see me wave goodbye and shout out “I love you mom”.  She waved back and said "I love you too sweets".  Then of course I had to tell her I’d see her later, as I knew I would.  As I started to turn my head in the direction I was walking, she showed a slight look of concern and forced another little grin.  If I close my eyes I can hear the screen door creak and shut with a little snap. 

The school’s architecture was very strange, no flow or symmetry.  As I entered, it appeared that I was immediately escorted into a large cubicle, one of many throughout.  You never saw one end of the building or had a clue as to your direction or destination. No signs, no numbers, no labels or directory.  There was literally nothing, no computers or phones.  Just walls. The walls were either a shade of silver or blue.  It was stark and cold. 

I sat at the table and this man came in wearing a black suit and tie.  Crisp, as in executive crisp.  He placed a briefcase in the middle of the table, pulled out a document and began reading to me terms and conditions of some sort of insurance policy.  As he droned on through the paperwork a feeling of panic surged through my body.  I felt as if this was some sort of reading of a will, a new destination, a place that had been pre-determined for me and I wanted nothing to do with it.  I wanted to go back home to be with mom and that was that.  I was supposed to be going to class and this event was not in my plans.  I ran out of the room in search of my homeroom, my place of study. 

The halls were narrow and zig zagged from side to side.  I ended up in what was an auditorium.  The room had two tiers.  I found a seat in the first row of the second tier, straight in the center. I had the perfect view. The benches morphed from luxury theatre seating into small seats you would find in an old gymnasium.  Then back again to soft cushy blue seating.  It was as if the room could not decide what it needed to be.  That was the mystery of this building.  When you walked in it sort of becomes what it needs to be.

Today it needed to be a classroom, a place of learning, a place of hope.

I am never one to arrive early.  I am always just a tad late. This time I was early and was so pleased to see that I had a perfect view of the grand chalkboard and had a chance to settle in, taking notice of each new person’s entry into the auditorium. I wanted for mom to be proud of me.   

As I was waiting I noticed that my bag became overly heavy, cluttered with lots of papers, books and personal items.  Another wave of panic set in.  I started to get worried that I had lost my phone.  I loved my cell phone.  It was so unique.  This phone was in the shape of a combination lock, golden and fit perfectly in my palm.  The dial was old fashioned in the sense that if you wanted to make a phone call, you aligned the digits vertically.  

The code was the phone number. Each row was 0-9 and there were 10 rows.  I loved the sound, “click click click”, the lock would open and I was on the phone with mom.  I loved my phone.  It was the only means available to talk to mom outside of the house.

I quickly pulled the bag onto my lap and plunged my right hand straight to the bottom.  I was swimming through its contents over and over hoping to find my phone, the only lifeline to mom. Out of nowhere a huge gust of wind and rain swept over the building. The sound was deafening.  People started running towards the edges to get to safety, stepping on top of one another, screaming and crying.

My bag and all of its contents spilled out onto the stairs. I watched my shiny golden phone roll off the edge of the balcony and drop into oblivion. My only connection to mom was gone. The only line to hear her voice again was lost forever.  I closed my eyes to see her once again, standing there, waiting for me to come home.  I had never felt such pain until that moment in time.

The building rocked again and there was a thunderous bang, a surge of rain and darkness overcame us.  I tried to gather my belongings but I could not stay steady.  I found myself hanging from the second tier by my fingernails.  Someone pulled me up and and we managed to get to safety. The fierce wind and water hit us like tiny bullets.  We could barely see as the rains grew stronger.

What was once inside was now outside.  The roof blew away in one giant flash.  What was a sea of sunflowers was now a sea of water.  For miles and miles nothing but cold water, snowy water, dark black water filled with debris.  I looked and looked and looked for mom’s house.  I could not see her house.  I could not see anything.

I am not sure what happened next as I think I passed out from the trauma. I awoke to find myself in a car with a very nice couple who said that they were here to help me find my mom.  The car had no wheels and was on a black conveyor belt.  The terrain was very steep with lots of hills.  I could hear the clanging of the gears as we escalated up to the top of the first hill, then down we went, sliding to the bottom, only to be brought up to the top again.  This ride went on for a bit and somehow we were routed off to the side into their home.

The house was empty, more like a stage than a home.  It had no furniture, no food  and no belongings.  It looked abandoned, but not.  It was their home.  Nothing was actually attached to any surface.  I remember a kitchen and a bathroom.  The white paint was chipped and the kitchen counters had some sort of metal molding all around it.  I sat for a moment to gather my thoughts and began searching for a phone.  I ran from room to room looking in every corner, every closet, every cupboard and every vent.  I fell to my knees begging them to give me their phone and each time I was told here was no phone.

I accused them of lying.  I begged and pleaded.  I needed to hear my mother’s voice!  I needed to know that she survived!  I needed to know that she was OK and wanted to tell her again how much I loved her.  I needed to talk with her one more time. I needed her to know that I was there and that I was going to help her. 

I recoiled in exhaustion and sobbed.  I would never be able to speak with my mom again.  The waters from the hurricane had flooded the state of Kansas, reaching from the Gulf to Nebraska.  Those of us that were left would start all over.  Her words of “I love you” from that morning would be the last words I would ever hear from my mom.  

That would be the last time I would feel her loving smile.

The end.

Denise Archuleta 

February 16, 2014

===============================

I awoke this morning from that nightmare in total upper body pain, including severe pain along my collar bones and neck.  I must have been squeezing 

my body in a ball all night long.  

I miss my mom so much.  I want so desperately to talk with her 

just one more time.

I love you mom!  

"A Healing Place" by Colette Montez

Dear Readers,

My dear friend Colette Montez embodies a passion for living.  As a fellow sister in TEAL her experiences, wisdom, heart and dedication, have helped me become a better person living with ovarian cancer. 

Thank you sweet Colette for taking us to your healing place!

.........................................................................................

A HEALING PLACE

Find one, create one, visit one, it is important that you do so!

Quality of life. It’s a term bandied about by the medical profession. They most often refer to the physical quality of life, but this phrase can and should also encompass the emotional quality of life as we live with cancer. Part of maintaining an emotional stability while facing a threatening illness is to be able to carry on and live life as normally as we possibly can and as well as we can. Maybe we cannot carry on exactly as we’ve done prior to our diagnosis. However if we can get a break of normalcy every now and then, our attitude will be so much better and that in turn keeps our body healthier.

During Christmas break I took my retreat to a town that is close enough to be easily doable, but far enough away to feel like I’ve gotten away. It involves a drive, a Washington state ferry ride and another drive, to transport me to a place that I feel heals me.

There was the beach, desolate and solitary in the coldness of December. Sand wet from the misty rain, treasures of sea glass and shells and pebbles brought in by the tide. Herons, gulls and crows constitute the wild life that I see, my eyes scanning the water for any porpoise with purpose which on this trip I do not find. I watch a ferry in the distance coming in to the dock of the town.

I think happy thoughts, feeling well to be able to walk the beach to a lighthouse, remembering past trips, immersing myself in a fantastically interesting sky. God’s light streaming through the clouds, fat, white, shades of gray cotton balls that are scudding across the sky with the wind.

This is my getaway trip, my retreat where I sometimes go. I journey to this healing place sometimes alone, sometimes with family. There are no rules to any of it except one. I don’t think of cancer. I act like I will live until I’m 90. I go into town and shop. I buy myself something nice, never worrying or considering about whether I can use it enough before I die. There is even a bead shop there and this particular trip I pick up a strand of chocolate freshwater pearls that I will add to wire wrapped necklace I’ve already created with white pearls. The chocolate and the white will add more visual interest together then alone.

Eating good meals at the restaurants I enjoy brings to my mind how grateful I am to be so well at this time. I enjoy and savor each bite. One can really appreciate eating after having had meals through an IV drip!

After a night in my favorite hotel, I awaken to screams and indignant screeches of the seagulls. I know instantly where I am and it completes the auditory segment of the picture of a seaport town.

It’s important to have a healing place that you can go to. So much of this illness is emotional and mental in nature. We have Doctors who can address our physical discomforts and illness, but how many of us have someone or somewhere to go with the emotional turmoil that cancer creates? Find a place. Go there for a healthy distraction.

When I was first diagnosed, I'd visit this town and wonder if I’d be back the following year. Now, four and half years from diagnosis, I go to this place on the Olympic Peninsula and never worry if I will be back. I just plan on being back and so far that has worked just fine! Someday will be my last trip, but I don’t concern myself which trip that will be. I just revel how grateful I am to be able to come back here each time I need to. Create memories, see the natural world and leave my treatments and procedures for 48 or 72 hours.

My current photo is of Terry, my Norwich terrier, at our healing place. We’re at the beach where she can walk on sand and spy on the gulls that remain frustratingly out of her reach due to her leash! The first time I brought her she ran to the water, took one drink, tensed her face and never did that again! She was a rescue dog off the streets of Los Angeles and captive on death row in a kill shelter when the rescue group saved her. I can only assume Terry had never seen such a body of water, or even been on a beach before.

Now as the photo shows, Terry is sitting on the driftwood, reflective, calm, content, churning her doggie thoughts over and you come to figure that maybe even the dog needs a healing place where they can just “be” in the moment with all nature’s beauty at paw.

I fervently hope that all of you have a healing place, be it far or near, that you can get a much needed mental break from all your troubles. Renewed, refreshed and once again hopeful.

Colette Montez

Old Time Staycation Surprise Letdown

bhttp://sportsfans.org/2012/03/why-is-the-national-football-league-given-tax-exempt-status/

http://www.policymic.com/articles/79887/the-nfl-pulls-in-10-billion-each-year-all-of-it-tax-free

http://www.guidestar.org/FinDocuments/2010/131/922/2010-131922622-0706081b-9O.pdf

When I was a kid we went on one vacation as a family.  One summer day at the spur of the moment it was decided that all of us hop in the Ford Pinto Wagon and take a weekend road trip to Dillon, Colorado. Wow we were jazzed!  We just did not have the resources to "travel" as a family and when this opportunity arrived, we were pretty happy.

I remember what we were wearing!  I remember pulling off to dip our toes in the lake, inhaling the fresh pine air and staring in awe up into the clear blue sky.  The trip ended abruptly the next day because dad had a toothache.  There ya go.

So instead of vacations, we had what people call nowadays "staycations".  I can think of just a handful to include Thanksgiving, Christmas Eve and Christmas Day, baseball games, maybe a summer holiday and the Bronco games.  The Bronco games provided us with many fun loving memories and laughter.  Our house was Broncos central. Aunts and uncles, grandparents, cousins and friends would come over, we would enjoy great food, and for the next three hours think of nothing else.  I loved being a kid during those times. I loved watching the adults and listening to them talk about the game, razz each other, tell jokes and laugh. I loved helping mom with the food if she wanted it.  I have written about this before I know, but it is true, the Bronco games were our primary source of family entertainment.

It was so much fun to cheer and holler.  We even had season tickets. Two seats.  Mom, myself, sister and brother would rotate games to go with dad.  We always parked at grandma's house and walked with the rest of the rowdies to Mile High Stadium.

As an adult I don't really care about football, just the Bronco games. Otherwise I don't really watch sports.  As a cancer patient I have found that watching my Broncos really makes me forget about cancer, chemo and worries for that three hours of time.  Of course it's not the same now, no big family get together, just me really, but still I love my Broncos.

So now to get to the reason why this blogger who writes about ovarian cancer is blogging about football.  Well, I am late to the game and did not know that the NFL is a non-profit organization.

For obvious reasons this is just wrong on every level but I want to talk about my teeny little gripe that does effect my quality of life.

I do not have cable TV.  I have Roku.  If I want to watch my Broncos play a regular game, I would have to pay to subscribe to the NFL to watch live streaming Bronco games.  What???  Only during the playoffs have I been able to actually watch a game on my Ipad.   The few livestream news channels on Roku aren't allowed to show the game streaming even if it is free to their local viewers.  This is a racket.  It actually upsets me.  

Funny, I live in Seattle.  The Superbowl will be very exciting this year.  I will hope to go somewhere to watch the game.  Everyone in Seattle sure is excited, so for me I can't lose.

I need my little joys, my little breaks. Everybody needs their little happys.  The family memories of cheering for the Broncos make me happy and darnit I just want to watch the game and enjoy fond memories.

So now that It has been revealed to me that the NFL is a "non-profit" I wonder if it is legal for them to charge any fees to watch their games.  

When you read the articles above you will see how much money top management gets paid and it most definitely smells like a profit to me.

I am just disappointed all around.  They pay no taxes.  That makes me pretty mad.   I wonder what kinds of needed programs could be saved if they paid their fair share?  

I want to know why the Non-profit NFL requires me to pay a fee to subscribe to their services to watch the Broncos.  I need my little staycation.  I realize this is selfish of me but I want a chance to cheer and root on my team, no matter where I live, for free.  Edit:  I am grateful for life and all God brings to me, please remember that as I vent a bit about this issue.  Peace.

Pass this around if you agree.

This is part of my "Little  Happys" series for those of us in grief, dealing with cancer or any other chronic or acute illness.

Go Broncos!

Love,
Denise
 

ps...when I move I will get cable as long as Comcast does not force me to keep my business services.  That was the reason for my cable issue.  A few years ago when I got my little apartment I needed internet to work part time from home.  Some Comcast rep sold me an unnecessary business package with a two year contract and I did not know I would have to buy out a two year business agreement in order to change to a residential service with cable.  Their business services won't allow customers to have basic cable.  I just work from home, gee wiz.  So for the past two or more years I have watched TV at mom's (may she rest in peace) or streaming via Roku on my Ipad.  Rarely is there any live activity.......ugh.  anyway...Peace

I just saw it on CNN.com: 'He's going to be better than he was before'

http://www.cnn.com/2014/01/18/health/fish-oil-recovery/index.html?hpt=he_c1

One of the most traumatic nights of my life happened not long ago. Someone I love more than anyone else on earth passed away.  I am sorting through memories of those teeny tiny increments of time.  It is like trying to catch snowflakes with tweezers.  Then every once in awhile something reinforces the strangeness of that night, the intention that may or may not have been.

I wonder how I would have reacted if I had known about the information in this video at the time we found out there was no hope for mom.  I am certain I would have asked the doctors for fish oil.  I would have fought tooth and nail to at least give it another day, one more chance.

In the above article they talk about saving their son's life  and how they threw "everything but the kitchen sink" at his treatment.

This article is very inspiring. It makes me want to DO something. Sometimes I feel like I am swinging at air. Then after a bit I relax into peace. Up. Down. Up. Down.

I want to turn back the clock.  I want a second chance to have that night again.  But do I?  I would not want for one thought of suffering for mom once more but what if there was a chance? 

After re-reading this post several times I am also remembering though that these events are not choices. We must go when called, and THAT cannot be doubted.  I go through this circle very day, what if and then to God.  God is where Peace lives.

I also have a thousand thoughts about this article, but I will just leave one.  In the case of this boy he had very strong-willed parents who were searching for anything so that their son could be saved.  The right information was presented at the right time, not a coincidence. It is our fortune to learn more about this treatment.

I pray for those who are alone in the hospital that have no voice, no cheerleader, no individual who can stay with them while receiving treatment.  We all need an extra pair of eyes and ears if we are in the hospital.  

I applaud this family, the writer, Dr. Gupta, and the other doctors for revealing this important information.  It adds another layer of help and hope for those with brain damage.

Peace and love,
Denise

Researchers discover ovarian cancer biomarker

Researchers discover ovarian cancer biomarker

Posted from our friend Karen Ingalls

http://www.amazon.com/Outshine-An-Ovarian-Cancer-Memoir/dp/1592984622

Love

I gave my undivided attention to this PBS documentary about Lipizzaner Stallions.  I had heard of these beautiful horses from my mother, and of course my adorable nieces, who loved and love horses.

 I have a funny memory of mom being followed by one of grandpa's racing horses.  She was laughing one of those panicky laughs while trying to keep away from him.  He got out from inside the fence and was running up behind her along the long driveway. I think he liked mom's hair or thought she had carrots and apples.  Anyway, it was pretty comical.  Mom loved horses.

What I found most interesting in this documentary was not just the complex history of this rare breed of horse but truly the love and care that is given to these beauties since their birth.

All I can think about is what love means and how do we show love.  Why can't all humans receive this kind of love?

The horses are well fed, pampered, groomed, bathed and spoken to with gentle care, their entire lives.  

They therefore learn to love back and trust.

It is so simple a concept, yet we humans have such a long way to go when it comes to loving one another.  

Humans have great capacity to love, yet we don't always.  

Imagine every child on the planet clean and bathed, well nourished and only treated with utmost kindness and love.  Not ever a note of anger or violence to be experienced.  Wow.

Just that alone could change the world.  Imagine every elderly person and disabled person receiving the same.  And everyone else.  Love is the foundation of our existence.

When you watch this you will see.......

http://video.pbs.org/video/2364999318/

Love,

Denise

Support Her

I just found a very helpful study that confirms what we knew all along: social support, spiritual health and psychological health correlate with our quality of life, even moreso if you have ovarian cancer.

I am posting the link below, as I cannot copy it to my blog directly.  

This may be a very useful article for your own knowledge and well being.  It also may help you if you need a medical professional to have more empathy towards your overall well-being. It especially adds value in terms of communication with loved ones and caregivers.

I am really fortunate in that my gyn oncologist has always placed my quality of life as her number one priority when it comes to my care.  I currently have a counselor and my support network is open and listens to my needs.  Cancer is complex, ovarian cancer is no exception.  Adding cancer to your already complex life and to the lives of those around you brings about all kinds of opportunities for generosity, but also can bring about sadness and isolation.

If you have ovarian cancer and feel that you need more emotional support, you are not alone.

This article outlines areas of need and validates that supportive environments play a critical role in our quality of life.  Not everyone gets the support they need, but personally I think it's not always because of lack of potential. Giving help and receiving help are sensitive issues in general.  Caregivers and loved ones may not really know how to help and understanding cancer fatigue, for example, is almost impossible unless you know it yourself.

It is somewhat of a relief that this area of need is being studied as it relates to ovarian cancer. I hope to see more research and help in this area for all who are effected by ovarian cancer.  

I have believed since the beginning that psycho-spiritual-social treatment should be automatically included as needed in the overall treatment for ovarian cancer.  Insurance should cover this as well.  We have multitudes of support groups, both online and in community, available to us but the issues at hand can be so involved that a psychologist or psychiatrist may really be needed to help mend our open wounds.

Peace and blessings to you!


http://onlinelibrary.wiley.com/doi/10.1002/pon.3322/abstract

Roland, K. B., Rodriguez, J. L., Patterson, J. R. and Trivers, K. F. (2013), A literature review of the social and psychological needs of ovarian cancer survivors. Psycho-Oncology, 22: 2408–2418. doi: 

10.1002/pon.3322

Happy New Year 2014

Happy New Year!  

Generally speaking, I don't make new year's resolutions.  Instead I sift through the areas of my life where I have done well and not so well.  Then I think about why I did well and what area of my life needs the most work to be the best contribution.  I do my best then to find one goal I can improve upon.

Last year I wanted to be the best daughter I could, get healthier and continue to raise awareness of ovarian cancer, whilst always bringing myself closer to God.

This year I think I did most of that, pry helping too much or where I was not wanted. I did as best I could, but also realized I really lost contact with our Lord.  Not so much on a daily prayer basis, because I pray several times per day.  I have not yet truly engaged in my spiritual community.  This year will change, after reparation the goal is to find a way to renew that committment.

I have been blessed with home ministry communion from my local parish over most of this past year due to extreme fatigue and flares of arthritis.  I will ask Sr. Marie to help me through this to attend mass earlier now that our family is moving through the  most devastating loss we ever could imagine.  Healing from this loss will be a lifelong work, I could have never imagined this pain.  But I also could never imagine the relief knowing that she is with God, safe, free, unhindered by earthly anchors and pains.

I know that helping others heal from cancer and raising awareness of ovarian cancer is part of my mission, I know that cannot be done without an ongoing lifelong dedication to building my relationship with Him.

I want simplicity in 2014.  In the most literal sense.  

I ask for prayers to heal those who are sick, impoverished, burdoned with anger and loneliness, and for those who are missing their most beloved.

Below is a link for a message from Pope Francis.  I found it interesting because he noted the importance of our elders.  I pray that this message rings around the world for our elders give us hope, knowledge, confidence, pleasure, love, grace and community.  One of my mom's most fierce passions were the plight of the elderly in this country, being discarded, marginalized and sent away.  It would bring tears to my eyes at what she would endure sometimes   May this trend change so that pur culture brings the aging parents back into our lives.

http://www.telegraph.co.uk/news/worldnews/10543818/Watch-live-New-Year-fireworks-and-celebrations-around-the-world.html 



http://vatican.com/news/frame.aspx?url=http://www.catholicnews.com/data/stories/cns/1305423.htm

I dedicate 2014 to my sweet strong loving mom.

I love you!

May each and all of you bring in 2014 recharged, to make just one area of your life in support of community.  For those of you who would like to celebrate the new year in prayer, here is a link that may serve you well:

http://cnsblog.wordpress.com

Missing Our Beloved At Christmas

Christmas Without The Dearly Departed

The tree this year stands at 2 feet, and a tiny string of lights seems just enough.  The complexity of emotions revealed at Christmas just after the death of a dear loved one can be impossible to manage.  We pray for the Grace of God and hope to behave gracefully at this most bittersweet time of year.

To reconcile it all makes no sense.  Be and breathe.  Cry and rejoice.  Trust in Him to comfort you.  We can only do the best we can do, in each hour and day.  Take no stock in the material and offer a smile of joy.    

There is a beautiful poem below the tree:

Christmas In Heaven

We’re wondering what Christmas in Heaven is like  

As we grieve alone and pray,  

longing for one who has gone before  

To spend Christmas in Heaven today. 

And so in our dreams we wander far  

From the scenes and sounds of earth  

‘Til we catch the strains of the Heavenly choir  

As they sing of the Christ Child’s birth. 

The Angels we envision there  

As they join in the restal gay 

And there amid the throng is our Loved One 

Spending Christmas in Heaven today. 

There’s joy in the faith that teaches  

When our life’s work is done 

Of a place in Heaven awaiting  

And the crown we worked for is won. 

In our grief may we learn well the lesson  

So to work and suffer and pray 

As to merit the joys of our loved one  

And to spend Christmas together some day.

~author unknown

Published by TCFAtlanta.Org

http://www.tcfatlanta.org/HolidayPoems.html#~Christmas%20Without

Merry Christmas to you and yours,

Denise

Happy Thanksgiving to you and yours, Love Servivorgirl

Prayer to St. Raphael | St. Raphael Prayer

Prayer to St. Raphael | St. Raphael Prayer

I say this for all of you.  Today was a day that crushed me.  A better light will shine tomorrow.

An Amazing Story Will Soon Be Told

http://youtu.be/aZV53SuPMPU

http://youtu.be/GYMLMj-SibU

It's Always Nap Time: Cancer Related Fatigue

The days pass by in a blur for me.  I am on avastin every three weeks, sleep excessively and am in more pain in my joints now.  The fatigue is what seems to now be causing me the most trouble functioning on a day to day basis.  It is ALL worth it though to keep my ovarian cancer under control.

I am officially "unreliable" if any plan is made that requires my presence before noon.  I have actually missed several doctor appointments, missed following through to go with mom here and there.  Spent much of my sping trip to Colorado sleeping.   I find myself sitting and closing my eyes, no matter how many hours I sleep.

To make matters worse, my schedule is way off whack.  If I lived on the East coast, I would be praised as an early riser.  If I lived in Hawaii my timing would be perfect to arise around 9 am.  Alas, I live in Seattle, the gloomy days are closely falling upon us, and I awake any time between 11 am and 2 pm.

Because my clock is off, I have a hard time falling asleep before 2 am, I work part time hours into the late evening and just cannot unwind fast enough.  I need 12 or more hours of sleep per day and usually sleep through most of Sunday.

My trusted mental health professional and I are working on implementing resources to increase my energy, improve my sleep and cope with the heavy stresses in my life.  I can't talk about it all, but somewhere along the line I made it a mission to do all I can to help others live a happy life.  Nobody should leave this earth sad or deprived.  If there is even a tiny thing I can do, I want to do it.  I am however learning that my good intentions may be applied in the wrong places and at the wrong times.
  

In treatment we are now using the terminology "cancer related fatigue".  This is another one of those things that most people believe goes away about 6 months after treatment stops.  Not always true.  People heal at their own pace and sometimes this healing time does not match the reality of day to day demands.  Getting emotional support during these times is critically needed to find bridges and resources to fill in the gaps

In 2009, starting  my first chemotherapy round with multiple toxic agents (carboplatin, taxol and cisplatin) I totally tanked and was in a deep brain fog, was lost and scared all the time.  I had a very high level of anxiety, and multiple physical issues of abdominal pain, nausea, hot flashes, shortness of breath etc, that added to the fatigue from being poisoned and having cancer.

I regained some strength during my period of NED, but retained severe abdominal pain, severe sweating, nausea and fatigue.  My overall cognition has improved.  Eventually it came to be that I have some sort of panic disorder and the medications I take have helped with that, thankfully.

Being back on chemotherapy now for almost two years for my recurrence has compounded the fatigue. I have been counselled with great compassion that many women live long lives on chemotherapy.  I feel alright with that now.  I did not think I would, but as long as I can tolerate the side effects, I am all in.

During the second time around, with carboplatin desensitization we were able basically keep more tumors from developing, but the existing tumors were still growing.  I think there are around 8, very small, but there nontheless.  With Doxil we were able to stabilize the growth.  I was on Doxil for approximately a year.  Now on Avastin, we are hoping to shrink the tumors by cutting off the blood supply that feeds them.

I am seeing some improvement in my CA125, but am not counting too much on the number, just paying attention to the trend. 

I have treatment tomorrow, and next month I am due for another CT.  

We have a lot going on in our family, just like every other family that is not independently wealthy.  Little time is taken to cross things off the bucket list, so to speak.  We are getting there.  I think all of us could use a real vacation!

To be honest, I have no bucket list yet.  There are things I want to do, but my focus is family and maintaining self sustainability for as long as possible.

The one constant in my life is daily prayer.  When I awake and when I get into bed, I pray.  I thank God for each new breath and pray that others ask for Him to help them. 

Please click on the link below for some information about cancer fatigue.

Cancer Related Fatigue from Cancer Research UK.org

Love to you and yours,

Denise

TED Talks Brave Neuro World

I found this series on "TED Talks" this evening.  I was looking for something interesting, not related to politics or our healthcare system.  Our government is now back in business and the Affordable Care Act remains law.  Finally can rest.

After watching this episode of "TED Talks", I realized that she is right, we need to spend much more time engaged using our right hemispheres.  

Please watch to learn why and also learn some fascinating things about the experience of a stroke.

Peace and Love,

Denise

http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

Why you should listen to her:One morning, a blood vessel in Jill Bolte Taylor's brain exploded. As a brain scientist, she realized she had a ringside seat to her own stroke. She watched as her brain functions shut down one by one: motion, speech, memory, self-awareness ...

Amazed to find herself alive, Taylor spent eight years recovering her ability to think, walk and talk. She has become a spokesperson for stroke recovery and for the possibility of coming back from brain injury stronger than before. In her case, although the stroke damaged the left side of her brain, her recovery unleashed a torrent of creative energy from her right. From her home base in Indiana, she now travels the country on behalf of the Harvard Brain Bank as the "Singin' Scientist."

Affordable Care Act Resources VIDEO

http://www.whitehouse.gov/share/what-obamacare-means-you 

The link above takes you to a really easy to watch and basic video that helps us to understand how this works.  Worth your time.

The Affordable Care Act - also known as Obamacare - means better coverage for those who already have health insurance, and more options for those who don’t, including a new way to shop for affordable, high-quality coverage.

http://www.cancerinsurancechecklist.org/resources/

http://www.ovariancancer.org/health-insurance/

https://www.healthcare.gov/     (I know it has been jammed, but don't give  up)

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Here is a copy of resources from The White House

Myths and Facts  Link for you

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State-by-State Monthly Marketplace Premiums

A new report shows that the Affordable Care Act will deliver on its promise to make health insurance more affordable and accessible for Americans who need it. Download the full report

The report, released by the Department of Health and Human Services (HHS) finds that in state after state, affordable options will be available through the Health Insurance Marketplace in 2014. Nearly all eligible uninsured Americans (about 95%) live in states with average premiums below earlier projections. And nearly all consumers (about 95%) will have a choice of health insurance companies,each of which offers a number of different plans.

The Marketplace will be run in partnership with States or fully by the HHS in 36 states. In these states, on average, consumers will have a choice of 53 health plans (bronze, silver, gold, and platinum plans), and young adults will have the additional option of low-cost catastrophic or youth plans.

Use the map below to explore a summary of the choices and premiums expected in those 36 states. Final, complete information about all the plans in each state Marketplace will be available via HealthCare.gov on October 1.

Get Started in the Marketplace

Please share information with others.

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