Mom is home

While mom was in the hospital, many days passed by.

What started out to be a weekend of fun, plans to see "Rock of Ages", abruptly turned into two weeks of rounds for our family.  More importantly, two weeks of pure Fight like hell days for mom.

What started out as super high blood sugar (diabetic ketoacidosis) turned into every nightmare you can imagine.  I cannot detail it exactly for her privacy, but it is safe to say that my mom is my true heroin.  She just never quits, never never never.

Our family had to be with her 24 hours a day 7 days a week while in the hospital.  I'm tired and joyous at the same time.  Thank God her sister came out when she did.  She is still here. God Bless her.

As mom rotated from one floor to the next to the next, my sister and I had birthdays.  The nation had a birthday.  Mom was fighting to tell her doctors to help her.  It was so scary to see her experience so many different problems, and not be able to communicate.  But with her will, our will and the prayers of many, she made it, by the grace of God.

She is home now and so so so so beyond thrilled and joyous to see out her living room window.  To walk in the sun.  To have her own food and sleep in her own home.  To watch the people walking by with their doggies and stollers.  To see the neighbors and see the children smile.

Most of all to see her family and feel our love.  She has some determination that comes from no place I know.  I have my cancer to deal with, and had my Lipodox yesterday............but overall it's just not that big of a deal. My mom is everything to me.

I remember one day a few weeks ago, I had knocked on her door.  "Come In" she would say with her boisterous voice, as she knew it was me.  I remember my glancing thought...."I wish I had recorded that".

She made this meal when my Aunt was out here in June, just a great spaghetti with peppers and all the good stuff.  I decided to freeze my portion of the left overs.  I just had to keep it.  My mom actually can't eat that kind of stuff, but my Aunt was returning home and my mom really wanted to cook up something good.  She sure did.

Now she is on a new road.  It will take a few weeks for her to get her strength back from this most recent ordeal.  I just pray that she accepts the help she is given.  Her independence is crucial to her survival.  That's mom.

As I recall the lonely halls at night in the hospital, arriving after work to relieve my sister or my Aunt, I would see other people all alone.  It was heartbreaking.  Especially on the critical care floors.  I'd walk by the same room day after day and see that no visitors were there, no extra voice to speak for them, no watchful eyes.

That is the truly scary part.  Hundreds of thousands of people are alone in the hospital, they live away from family, have no local support network or are from a nursing home and may have few family ties.

I can guarantee you that if we weren't there, my mom would not be faring so well.  We had to stay on top of everything.  Her specialists are so amazing, but it's the in-between people.  The change in shifts, change in floors, a constant new orientation to someone different who did not really understand the complexity of her medical condition.  They have too many people to help, can only take time for what is needed.

I know I was a pain in the butt, but it was necessary.  When someone you love is fighting for their life, you just do what you need to do.  That is all you can do.  I pray.  I want to thank all of those who prayed for mom and sent their warm wishes and positive healing thoughts.

It feels strange to be sitting here being able to take time to even type this out.  The past few weeks have been spent running back and forth to the hospital, coordinating shifts and my work and errands.  My poor kitty cat was so good......I think she knew.  She complained a little, but for the most part, did OK.

Now is time for healing and peace.  I continue to pray that my mom can find some time to do what heals her spirit, her art and just doing some fun things for what remains of our summer.  She loves her grand kids so so so so so so much and her family.  She is so bright and wants to be involved in important things.

She just needs a break to get some time to do these things while she is feeling good.  It's so hard in between doctor appointments etc.  It will happen.

We still need to take our sweet trip to Bainbridge Island, the one we won in KLGandHoda.

She just called to see how I am doing........yay.  I got to hear her voice.  I got to talk with her and my Aunt.  My day is better already

For today I am resting, will work tonight and hopefully visit mom tomorrow.  My sister has just done an incredible job of coordinating and running things.  She is the best sister ever.  My sweet Aunt is here, such a blessing.  A few nurses and nursing assistants really were so so so so so so good to mom, you really were.  Thank you for your tender care....especially Mario and Sean.  Thank you deeply to her specialists who really look out for her, you are wonderful.

I love you mom.  I love you mom.  I love you mom.

More well wishes and positive thoughts needed

Hi everyone,

This is just a simple note to you to let you know how mom is doing.  She is STILL in hospital.  We are trying so hard to get her stable, she is so complicated.  She had new and severe issues arise after she was admitted and we are dealing with all of that mess.

I can't go into details, just know anything you can do to send a prayer or a cheery thought her way would be welcomed with open arms.

We want our mom back.  I love you mom with all my heart.....................

PS.  I start my new chemotherapy treatments Monday the 16th.  It's breaking my heart because I won't be available to help for a few days.  I have been switched to Lipodox.  Just really need it to NOT knock me down.

Being lifted in spirit.

Love,
Denise

Mom's work from long ago, prayers needed

When we were young as kids, my sister, brother and I remember mom spending many nights creating beautiful paintings.  This is the only photo we have of her work.  Somehow this horse painting disappeared after the divorce years and years ago.  I never want to see the heart that created this stunning representation of a Spaniard and horse to stop.

I am asking for prayers for mom. She had a heart attack last week and a series of other serious complications are keeping her in hospital, including an infection she acquired from her central line. She is in so much pain and just not herself at all.  She is suffering.  Please keep her in your thoughts and prayers.

I saw my gyn onc yesterday.  Had a follow up CT scan last week.  Well, the carboplatin isn't working as well as my gyn onc would like.  My tumors have grown slightly, one the same size and there's a new tiny one.  They are still all small, but a threat if they keep growing.  I have small amount of fluid around my heart and something strange going on with my lungs.  Atelectasis....where the tiny sacs collapse. I only have small area on both lower lobes, so that is good.  I feel like that partially explains my constant fatigue and decreased activity level.

My last carboplatin treatment caused me to get very short of breath, and sometimes even now I catch myself not breathing very deeply.  So my goal is to start doing deep breathing exercises while I transition to a new medication.  Basically carbo is not giving me enough benefit for all the suffering, and I agree to change out to a new chemo medication.

So I will start a medication similar to Doxil in a few weeks.  The program is 4 treatments, monthly.  My chemo brain has caused me to forget the name of the sister drug, but I think it's called Lipodox.  I honestly can't remember.

Well, it's not the best news, but it's not the worst news either.  The carboplatin did make some difference, and for that I am thankful.  I have been so fatigued and really need to exercise.  I have gained 10 pounds.

The good news is that this new chemo may have more manageable side effects and I won't have to go in hospital to receive treatment.  My gyn onc is so good.  She really wants the time that I am in treatment to be as functional and positive as possible.  I believe she has made a smart recommendation to change at this point in the game.

I need to be there for mom, and work and be as active as possible. We have to get her back on her feet..........

I just wanted to give you an update.  Thank you for your friendship, care and prayers.

Love,
Denise

4th Chemo kicking my behind

My mom with Kate, at the NBC Today Show.  Kate was our producer, so sweet.  My mom still beats down the doors of diabetes every day, and wins!

I painted this little fish when I was on chemo in 2010.  I just love the  blue.

As I sit here drenched because of the side effects I wonder why I don't look like a swimsuit model.  I just can't explain how ridiculously sick I have felt since last Monday.  Actually, yesterday was a good day and this morning I am faring "ok".  

My sister took me home from the hospital last Tuesday after another round of Carboplatin via a desensitization protocol, and I was thinking "I'm good". She bought me a soy vanilla latte ( I know, bad soy bad soy).  I can't remember much after she left, except to say that all week I was very short of breath.

All week I got drenched in sweats and would have bad nausea, be unable to breathe well, and just super tired.  I hardly drank a thing for three days, big NO NO.  I did the best I could. I took my meds like I was supposed to, oh well.  I am on the up side of the recovery now, whew.

Yesterday was the first day I had a cup of coffee.

My mom and aunt were so sweet to come over Thursday night because I couldn't function.  I was crying because I couldn't catch my breath.  It wasn't like I needed 911, it was just a knowingness that my body was having a hard time with the chemo.  Harder than last time.

Today I am so lucky that I feel well enough, I can go with my mom to her rehab and spend some precious time with my aunt.  

I only have two more chemotherapy treatments to go.  Strangely my CA125 marker is slightly rising.  Not sure what it means because my gyn onc stated that the marker is not reliable.  When my recurrence was diagnosed, it was 15.  15 is a dream number, a great number, if you are not in a recurrence.  So for me, 15 is not good.  It was 38 at the end of May.  I try not to obsess about numbers, but hmmmmmmmm.  

So today is a great new day.  I am thinking about some friends, one who's mom and brother are ill.  One who is having her hip replaced and another who will be having brain surgery in a few days.  

We just need to keep looking forward and doing the best we can.  I feel so so so blessed that I get to talk with my family every day, or send a little text, or look at a few photos.  And, I have this sweet little cat named Marilyn, who stays within 5 feet of me all day long.  How bad can this life be?

Love you all.........................

More on New York, it stays with you always

Mom on the way to New York City May 7, 2012

Our cabbie was a great driver

The NBC Today Show Studio crawl

Me with the producer and her camera ladies...yay

Kate in the middle with her camera ladies

Mom enjoying the 360 degree View Restaurant, what a spectacular way to see New York

In New York, everything is big and tall

A view from "The View"

More views

And another view

A view once more

Things sure look small down there

Times Square

Times Square

Our first look at the city, arriving late into the evening

Mom and I have yet to take our little get away on Bainbridge Island, but we will soon.  It's just been a whacky time since we got back.  It took forever for me to even find photos because I had lost my cell phone at JFK airport.  Luckily I got it back.  Mom had severely bruised her tail bone getting into a cab that Tuesday and we spent all of Wed handling that.

As it turns out, mom had the ride of her life on a pedi-cab the day before the show.  She was in awful pain and finally we decided to go into a clinic.  Kate was such a gem helping us out with all of this, but getting there was crazy.

In New York they say take a cab everywhere.  Seems harmless....NOT. You can't catch a cab on smaller side streets, you have to walk to a busy corner.  My poor mom, walking around with me trying to find a cab.  So after one cabbie refused to take us...seriously.....this wonderful Irishman with bright blue eyes came up to us in his little pedi-cab and asked if we needed a ride.

I have to tell ya, I was not real confident in that, as the day before I saw pedi-cab race across four lanes of heavy traffic practically tipping the whole thing over.  Mom was excited.  We explained that she was in tremendous pain and that we were on our way to an urgent care clinic.  He promised me that he would go slow and take good care of my mom.  So we got in and held on...weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee

Mom laughed and laughed and laughed and laughed and laughed.  She said that was exactly what she needed.  It was also a great way to see the city.  I have a small video clip of our ride...........

It was a trip of a lifetime and we will never forget it.  Thank you Kathie Lee Gifford, Hoda Kotb and Kate for hosting us.  Thank you to David Friedman, Chandra Lee Schwartz, Davy Wild, and of course Kathie Lee Gifford for creating such a beautiful song "Strong Like You" from me to my mom.

Here it is over a month has gone by.  I go into the hospital tomorrow for my 4th round of chemotherapy desensitization.  I went chemo shopping today for soups, veggies, yogurt, etc etc etc.  Of course I forgot my colace and flax seeds.  I just want it over with.  Not looking forward to almost 10 days of bad nausea.

I have been sleeping 12 hours per day for a long time.

Mom has been in hospital twice since the trip.  Geeze.  She can't catch a break but looked great today.  She is just a real trooper.  She is all excited because her sister is coming out to visit.

My sweet sister is finally up and around again, the whole family dealing with whooping cough.  Can you imagine?

Several of our teal sisters have passed away this past month, and that is really hard.  I pray for their families and hope that they can keep the conversation going.

Every day can be rich with life, the little joys and the small smiles that really warm your heart....that is what we need to look for each day.  Can't worry too much about what may or may not come.

I have a beautiful and loving family, a kitty cat that just gives me pure joy and I think she is happy too.  I have really nice friends and most of all I have God.  We all have Him there to love us and carry our pains.

I love you all......................Denise

Art doesn't fall far from the tree

My mom taught her well.  My sister is showing her works on Poppytalk Hand Made, as well as on her blog.  I always enjoy her work.  It makes me smile and brings me joy.

Those of us with chronic illnesses, no matter the name of it, deal with many of the same issues. Pain, disruption of life, lingering thoughts about how we have used our time up until now.  "Could I have done better?"  "If only I would have done this or not done that."  We have no answers, only God knows these things.

What I do know is that we need art and music and play and laughter to be part of our lives, in a big way.  It's healing to see beautiful art.  We go to distant lands or other places and either imagine wonderful things or remember experiences that made an impact.  Granted, we may not always feel "good" but art is about truth.  Truth is cleansing, and cleansing brings about peace with our selves, which can bring about peace with others.

I love you sis!  Good work!

Poppytalk: Affordable Art: weathered silo: One of our participants this month at Poppytalk Handmade is Mandy of weathered silo . As we feature affordable art this coming week, I'm ...

A song for mom. "Strong Like You", by Kathie Lee Gifford and David Friedman

http://video.today.msnbc.msn.com/today/47372225#47372225

Visit msnbc.com for breaking news, world news, and news about the economy

My mom and I had the most amazing experience on the Today Show.

She is such an inspiration to me.  I know she can be an inspiration to others.  We all have our challenges.

Kathie Lee Gifford and Hoda Kotb are so incredibly sweet, so thoughtful, so kind, so sincerely interested.  What an honor for mom and I to have had this chance. I watch the show all the time, it always makes me smile.  Being on the set gave me a permanent smile.  Love and hugs to Kathie Lee and Hoda, I sincerely care about you.  My mom told me she really felt that your sweetness, care and love.  I wish my mom was writing this in her words, but you know what I mean.

All the people on the set, hair, makeup were so courteous and happy and you can tell that the people at NBC love what they do. Bobby, thanks for the joy and for doing my hair.

On the set, you can feel the positive energy in the air.  You need something, all you have to do is ask.

For my essay to have been selected from the hundreds or however many are submitted is just a miracle.  Kathie Lee was so genuine in providing prayers to us and I could feel her spirit.  I just can't believe I was in Hoda and Kathie's presence, wow.

I wish I could write out all the laughter and joy that my mom is feeling right now.  The trip was a real challenge, because we both have some limitations and mom just pushed through everything like the trooper that she is.  I love the look on my mom's face right now, she is BEAMING!

Thank you Kathie Lee and David Friedman for creating such an incredibly beautiful and inspiring musical piece for my mom. WOW, that is truly amazing.  I posted on my FB page that I am truly humbled.  I feel like God has lifted us with this truly beautiful gift.  Chandra Lee Schwartz, your voice is so beautiful. Davy Wild, thank you for your keyboard talent.

Katherine Cook, you are incredible, thank you so much.  You are so responsive and talented, please give everyone a huge hug from me and mom.  Superhug to you!

I hope to find my cell phone because it has all our precious photos from the trip.  I was crying my eyes out on the way home.  I lost it somewhere between the security checkpoint and the gate at JFK.  I wish I had worn a camcorder on my head the whole time.  New York City is just indescribable, and we were overwhelmed.  I mean, what can I say.  You have to be there I guess to understand.  It's huge.....you almost fall over backwards looking up to the top of the skyline.

To my sister and aunt who helped with getting the photos and helping get us ready to go, a major huge hug and love to you.........what a whirlwind.

I pray I did not forget anyone.  There is so much more to tell..

This was a once in a life-time opportunity.   I love you mom!

Denise

Mom and I will be on KLG and Hoda this Thursday

I am extremely proud of my mom and can't wait to see the glow on her face when she gets a chance to share her life with Kathie Lee Gifford and Hoda Kotb.  I had written into the show about how inspiring my mom was to me in helping me cope with ovarian cancer and how much strength she demonstrates in her constant battle with Type I diabetes.  It is a miracle that she is not on dialysis at this time, and her having her heart attack on Valentine's Day may have played  a role in her healing, of all things.  I call it a miracle.

I had asked God for just a little more freedom for her, and here we are.  You will get to know her as a person, a real human being, and know why I love mom so much.

I am so so so so so so so so so so so so so happy that my essay has touched my favorite producer in the whole world.  I'll call her "K" for now.  She has been so generous and I can't wait to meet her and Kathie Lee Gifford, Hoda Kotb, and Sara Haines and the rest of the Today family.

I owe a million thanks also to my sister Mandy, brother Arnie, aunt "D" for really digging in and physically helping me through my transition from California to Seattle.  My sister especially, because she had sacrificed so much precious time with her young children and husband, and their lives are so busy.

Caregivers are so important, whether they are literally caring for you or being that angel in waiting, as a shoulder to cry on.  I love my entire family so much, I just can't say it loud enough.

I know that most of all, we are so proud of mom.  Mom I love you with all my heart and want to thank you for all that you have given me.

I can't wait to write about our experience.

Peace, Love and Blessings to you all.

Denise

Rivkin Center awards grant for cognitive study

CONGRATULATIONS DR. GRAY!

Heidi Gray, MD

University of Washington

Behavioral and neural indices of cognitive rehabilitation in ovarian cancer

Millions of ovarian cancer survivors live with residual symptoms of impaired thinking and impaired memory severe enough to interfere with basic activities of daily living and work. However, very little is known about how to treat problems in cognition. Pharmacologic interventions have only been modestly helpful, if at all, and not all patients desire or are able to take medications. Dr. Gray will examine the ability of a 7-week cognitive rehabilitation intervention to improve memory and thinking abilities in ovarian cancer survivors. In addition, the project will measure changes in brain activity patterns from the treatment using neuroimaging.

The Rivkin Center is delighted to announce the recipients of its 2012 Scientific Grants. With another record-breaking year in grant funding, the Rivkin Center has awarded over $1 million in research grants to better understand and combat ovarian cancer. This year 3 Scientific Scholar Awards and 10 Pilot Study Awards were conferred in addition to funding for the second year of the two-year Challenge Grant.   A one-year award of $60,000, our Scientific Scholar Award is intended to assist promising young laboratory and clinical scientists in pursuing a career in ovarian cancer research. For more about our Scientific Scholars and their funded projects, click here.   Christina Gewinner, PhD Anne Noonan, MB BCh BAO Brigitte Theriault, PhD   2012 Skacel Family Scholar   2012 Gilman Family Scholar    University Health Network     xUniversity College London   National Cancer Institute   A one-year award of $75,000, our Pilot Study Program will support investigator-initiated pilot projects in all areas of ovarian cancer research. For more about our Pilot Study Awardees and their funded projects, click here.   Matjaz Barboric, PhD Lavakumar Karyampudi, PhD   University of Helsinki   Mayo Clinic  Heather Cunliffe, PhD Ilona Kryczek, PhD   Translational Genomics Research Institute   University of Michigan Tyler Curiel, MD, MPH Fang-Tsyr Lin, MD, PhD   Univ. of Texas Health Science Center at San Antonio   Baylor College of Medicine Heidi Gray, MD Meera Nanjundan, BSc, PhD   University of Washington   University of South Florida  Shelley Hooks, PhD Jeremy Stark, PhD   University of Georgia   Beckman Research Inst. of the City of Hope   The 2011 Scientific Challenge Grant, a two-year, $150,000 research grant focuses on the origins of ovarian cancer with the goal of accelerating the early detection of ovarian cancer. For more about our Scientific Challenge Grant, click here.   David Bowtell, PhD   2011-2013 Lester and Bernice Smith Fellow   Peter MacCallum Cancer Center

Cancer Lifeline needs volunteers on May 18th

CANCER LIFELINE SEEKING A FEW VOLUNTEERS ON MAY 18TH

Cancer Lifeline’s mission is to optimize the quality of life for all people living with cancer

Volunteer at Cancer Lifeline

Date: Friday, May 18 2012

Time: 10am-4pm

Number of volunteers needed: 4-10

Contact: Amanda Boyle, Development Manager at Cancer Lifeline

            206-832-1273 or aboyle@cancerlifeline.org

Description of what we will be doing:

Help to beautify the healing gardens at Cancer Lifeline. We have three gardens on the upper floor that need renovation and care. We have one additional garden on the lower level which also needs attention.

 Here are a few tasks that need to be done for the facility:

• Weed and tidy garden beds
• Pressure wash decking and chairs on all decks
• Sweep decks
• Paint awning/pergola a new color, scrape any excess paint.
• In downstairs garden, sand and treat the wooden pergola. Remove current vines.
• Clean candle lamps in meditation garden
• Refinish and sand benches
• Plant new items for summer
• Replace soil
• Clean fountains
• Trim back leaves, branches, and climbing vines as necessary

How it benefits the community and Cancer Lifeline:

Our healing gardens are an important aspect of Cancer Lifeline because it provides participants and building visitors with a lovely outdoor space to call their own. After dealing with heavy thoughts and burdens about a cancer diagnosis, these gardens can provide a new kind of reflection through calming fountains, sunshine and conversation in the outdoors. Cancer Lifeline is a special place of sanctuary and healing; we’d like to preserve its special quality for years to come with garden beautification efforts.   

The gardens were designed and installed by the U of W’s Landscape Architecture students. Planning the Healing Gardens was an amazing experience for students, clients and staff.

The Celebration Garden (first garden – west-at top of back staircase)

Theme: there are often many things—small and big that can be celebrated in the process of healing. This is our “clients’ garden.”

A horticultural therapist planted different herbs as the basis for client and staff involvement in this garden. 

The Reflection Garden (second garden-west)

Theme: Healing can take place through reflection and meditation

The fountain – a wonderful cascade of soothing sound – was built in honor of our Executive Director Emeritus’ husband.  There is a feeling of tranquility with the soft murmur of the bamboo plants, a wonderful quiet space.

 The Earth and Sky Garden  (largest garden-east)

Theme: the connection between healing, and the earth and sky

Our largest garden, fitting for classes outdoors or for a lunchtime meet-up for clients.

 Lower Level Garden  (smallest garden, south side of building lower level)

    A bench and a wooden pergola provide a nice sanctuary to the building.

http://www.cancerlifeline.org/

Cancer Lifeline is very dear to my heart.  

If you are in the Seattle area and have some time to help, please join us! 

Peace to you.

New OC NON-Screening Guidelines abandon women

http://www.cnn.com/2012/04/13/health/ovarian-cancer-test-brawley/index.html

I have been thinking about the results of the Ovarian Cancer Screening guidelines for several days.  Today I am finally going to share my gut feelings about this.  Although I respect the medical community and their research, I believe that at the end of the day, this is a total abandonment of women and will kill many.

The truth is that the only reliable way to detect the early stages of ovarian cancer is via an expensive PET scan or other equally complex scanning.  A CT scan is not reliable.  A blood test is not reliable. A transvaginal ultrasound is not reliable.  A bi-manual pelvic exam is not reliable.  BUT...any screening is better than no screening!

How do I know that PET scan is reliable?  My brilliant amazing gyn-oncologist spotted a suspicious situation with a tumor on my liver via a CT scan and ordered a PET scan.  The PET scan ironically revealed that the liver tumor was not active, but there were THREE other active tumors, breathing, living, ready to mature into larger tumors at some point in the future.  It is a miracle that my recurrence was caught in the early stages.

My CA125 was only 15.  I had no unusual symptoms other than increased fatigue.  My constant abdominal pain is not anymore a symptom because it is constant.

My stand is this:  Either we allow all women, and I mean ALL women, the opportunity to receive a PET scan if there are any subtle signs of ovarian cancer, (not just the big 4, but weird abdominal pain, low back pain, unusual bleeding, increased fatigue)  and make it affordable............

OR

We declare that all ovarian cancer is a chronic condition so that we can apply for benefits to live what is left of our lives in dignity.

We can only apply for a limited number of benefits while in active treatment (corrected comment).  When we are declared NED, we cannot apply for new benefits, but we can keep benefits we have.  The problem is that this disease does make us less able to work full time and the medical expenses are ridiculous.

I am so grateful to have this time now, even in a recurrence and being on chemo.  BUT, I am not really living the life that I'd like.  I also want to add that I am not saying that I have no control over my future or anything like that, but it is very difficult to be a cancer patient, find work and keep it.  So, yes we do need to reach inside and find our entrepreneurial spirit.........and I am on a mission of raising awareness.  But if this is really true, that the recommendation is that there be no real active screening, than it is almost a certainty that all ovarian cancer diagnosis will be advanced.

There is this false belief that people with cancer somehow find a way to live their last years checking off the items on their bucket list.  Well that is great, but it takes money.

I had to go back to work before I could do some of the travelling that I wanted to do.  Now all I can do is just do all I can to keep my little part time job so that I can keep my apartment and car and do little things.  I am not starving, and am getting by, thank God!  But, really?  Is this it?  The rest of my life is going to be spent paying bills to get chemo to live to pay bills to get chemo to live to pay bills.

The extra money (like thousands of dollars and free time) to travel, just be next to a dolphin once, take a month and travel, see a broadway show, take my mom on a short cruise, yada yada yada.....well I'll pry have to write my novel and make the money to do that because what I'm doing now won't cut it.

My point is that if the CA125 had been given to me at the time the oncologist in California denied it, I could have been detected at an earlier stage.  Thusly I would have not had as complicated of a surgery and maybe not needed chemo.  That would in turn have created a body that would be better able to work a higher paying job that could have created a better lifestyle with more flexibility.  I didn't even get a CT scan of my pelvis when I had glaring symptoms!

At the end of the day, the new guidelines say not to screen for ovarian cancer. The result is that insurance companies can now deny payment for legitimate screening tests and women will only be diagnosed with advanced ovarian cancer.

I am not being negative, I am saying we need to fight for what we know works!  It will be decades before a blood test is proven reliable.

A PET scan does work and we need them to be readily available and affordable.  That's it, that's the only solution we have that will work until scientists come up with a blood test or something less complex.

PET scans do have some risks, but really it's minor compared to death.

That's where I stand.

Crying all day

Today has been horrible.  It hit me like a brick that being compromised, not able to do all that a person wants to do in life, when it comes to being with the people you love, is just devastating.  I had been crying and crying and crying and praying for God to give my mom just a few days of freedom from her trials and angst.

It all started with the image of my mom being able to drive her grand kids to a vacation park, play in the sand or have a picnic in the mountains.  For some reason this image caused an emotional break today.  A total collapse.

A miracle happened.  She called to say that her kidneys are doing better.  There is a possibility that she may be able to take a break from dialysis.  WOW  Now this needs to be tested and be verified, but even a little break would improve everything.  She is so much healthier since her heart surgery.  I have desperately wanted for her to have some normalcy.  I have been praying and who knows exactly why but this is such great news.  She is still in shock.  This is her above, isn't she so beautiful!!!!!!

When we go out together, and people learn she is my mom, the look at me like I'm lying.  Really?  Really?  They say to her how wonderful she looks!  They always think I'm her sister.

I have been really emotional all day.  AND I have this weird numbness on my face.  I left a message for the gynonc, and I'm sure they will address it.  My right upper gum, part of the right side of my nose has been numb.  This has been since chemo, but it wasn't too noticeable or I thought it would get better.  Not sure.  Maybe it's just a dental issue (I lost a front tooth to chemo about 6 months ago and wear a prosthetic).  Maybe my prosthetic needs to be replaced.  I'm certain that is it............but it's just weird.

I'm feeling trapped and stuck.  I want to fly.  I want to run away.  This news about mom is just so precious and uplifting.

I created a little bluegrass station on Pandora, and I love it.  It's so fun to listen to bluegrass.  It's like so awesome.  It gives me little happies.

I am so so so so so so so so so so so so hugely happy for mom, thank you God!!!!!!!!!!!!!!!!!!

What happened to simplicity?

I am longing for simpler days and simple life.  Longing for less complications with everything from paying bills, grocery shopping, using my computer to just having a cup of coffee.  Everything is so complex and difficult to do these days.

Remember when you were a kids you had a circle of local friends who you went to see?  You rode bikes and played house and played store.  You built far away places by hanging blankets on the clothesline and told spooky stories.  You explored the local field and thought you were in another country.  You went to a friends house and waited for mom to call out your name for all to hear, "Denise come home, dinner's ready!"

I desperately wish that kids today had those "kinds" of days, to play freely and run around the neighborhood.

Every day we are here is a gift and we have to schedule every moment now, all of us do.  There is no waiting until tomorrow to find "a better time" to laugh or shine or cry or do nothing but enjoy the birds singing.

Today is the first day since my second round of carbo-drip desensitization that I have felt good enough to get out and about. It's been tiring but full.  Got to see mom, went shopping and had coffee.  That was super great.  Just to sit at the coffee house and watch people and sip sip sip.  I then did my job from home and am exhausted, but OK.

Do all  cancer patients go through this? Sometimes all I can do is think about my past mistakes and just tear my hair out wishing for second chances or a new opportunity.  But those moments are gone.

I am loved by so many amazing people, but I am not sure I'll ever be able to accomplish anything worthy of being proud.  Just living, literally.  In this world of over achievers and extreme artists, athletes, intellects, scientists, filmmakers, geeks and doctors, I am but a simpleton.  All I have to offer is my heart and I hope that will do.

My not having any children to help me as I age, I fear, has placed a level of worry on others that was never intended.  We never expect ourselves to be "in need".  Luckily I have an amazing family and circle of friends who are willing to help me if I need it.

Never allow a doctor or anyone to tell you not to have children.  I never should have listened to that doctor when I was young, my whole life would be different.  I could have had a normal life and a family.  Some of you may not know this but when I first got arthritis at age 15, my rheumatologist told me not to have kids because I would not be able to take care of them.  Medicine for RA was bad and he may have been right, but that was still my choice to make, and I let him make if for me.  I was never the same after that and was and felt abnormal.  I still cannot get over the irony that I have ovarian cancer when I had been told not to have kids.  If I would have been given the option to remove my ovaries ( especially now knowing that I have the BRCA 1 mutation) I would not have gotten ovarian cancer.

Sorry, I guess I'm not over that ....................sorry for the repetition.  I just don't understand the cruelty.

I didn't want to heal from cancer to be thrown back into the rat race!  I just can't resolve this inner turmoil of needing money to pay bills to exist to pay bills which need money. I don't want all this chemo to be wasted on a life of meaningless daily drills of bills and pills.  I must nourish my creative spirit now.

I am going to write a book, I have a very unique experience that needs to be told, that you don't know about yet..ha ha ha. That is all I have to offer.

That is the only creative thing I can do....my hands are crap, can't paint.  Can't draw, can't sing. but do love to dance.  Seriously, my hands are bad and using them to create won't work.  Maybe I can paint with my feet.  Hmmmmmmmmmmmmm

Anyway, you may have figured out that chemo has an effect on our emotions and I am praying to make a difference. I tend to ramble when I have so many conflicting emotions inside.

I just wish things could be simple...............I pray each of  you can find peace and simplicity and hang onto it forever.  Love your family more than anything...........

Love and kisses and thanks for putting up with me.......my kitty Marilyn says hi tooooooo

Up for more Carbodrip? Must meet Marilyn first, my kitty cat friend

Before I go into anything serious I just have to share a little video I made of Marilyn.  Marilyn is my new kitty cat, who was previously at a shelter and then a foster-family.  Her foster parents were so nice and took such wonderful care of her.  Marilyn is so sweet and a true little lady.  She is polite and clean and really amazing.  She loves to play with her birdie toy and most of all she loves to be cuddly.  Exactly the kind of cat I wanted.  Being back in Chemo-ville creates a bit of anxiety and expected fears and loneliness.  It’s just part of the overall scope of symptoms of chemo, and cancer.  I believe in the healing powers of pets and the perfect little angel fell into my life. 

My Sweet Marilyn, she is six years old and comes from a foster  family.  Originally found wandering in Seattle, and taken to a shelter.  I am blessed to have my little friend.

 I apologize, I have been trying like crazy to upload several very cute videos of her, but we will have to wait. On my Facebook page there is an adorable play session, and I'd encourage you to check it out.  

I hope that you all had a beautiful Easter Holiday. 

Monday morning I go to the hospital for my second cup of carbodrip, with cream of course.  I have been keeping busy today, reflecting on the message of Easter and feeling warmth knowing that we are in a time of rebirth and renewal.  We have new opportunities to clean up our messes and start fresh.  Isn’t that just amazing?

I was fortunate to go to Easter Vigil on Saturday night.  All I can say is that I really needed to go.  It felt so good and I am so grateful to be here.

I wanted to share with you some of the reasons why people support and have joined the cause 

“Turn Facebook Teal to Heal in September”.  I spent a lot of time on Saturday catching up with the members and sending out a few notes.   

WHY PEOPLE ARE SUPPORTING THIS CAUSE: 

I am a cancer survivor myself and would like to see something done with this silent disease...it has taken so many lives and caused so much pain. I want to do anything in my power to change this and would like the love and support of family and friends to share in the support

I lost my grandmother to ovarian cancer, and would like to make others aware of this terrible disease.

I lost my Aunt to ovarian cancer & I pray every day for a cure so one day no one will ever have to feel the pain of losing the ones they love in such an awful way!!

I am an Ovarian Cancer Survivor. Stage 1a. I am one of the lucky ones. We need to get the word out. Early Detection is key.ave lost way too many friends from the hideous illness called Cancer !!

I lost my mom to ovarian cancer

I am in my 3rd year of remission, always a fighter, I now fight for me and all those still fighting, and for our angels who got wings we will always love and remember the fight you all fought.

I am facing a terminal illness, it is time to act. Get with a program and support it however, you can.

-Carol Lyn Wnuk

Ovarian Cancer took my sister 02/02/2010.

I have seen the human body and spirit ravished by this evasive disease. The cure for Ovarian cancer may open the door to the cure for other dream killing disease within the body. 

Carol Wnuk

I want to raise awareness to help more victims become 

survivors like my sister.

I lost my Mom to Ovarian Cancer and I want to find I way 

to stop it from taking any more amazing women

In support of my dear friend Jessica xo

I am an ovarian cancer survivor of 3 yrs. I want to spread the awareness so no other woman has to suffer from this hideous disease! Lets put teal on the map so everyone knows what this color means without having to ask!!

I am a 25 yr survivor and blessed with a Beautiful 21 yr old daughter.Just wanted to let women 

know you can beat this disease.

CANCER the most hurtful word ever spoken. It takes our loved ones way to soon and it is evil. Lets fight it together and try to beat it the best we can. I love and miss those whom I have already lost due to cancer and DON'T want to lose anymore. 

I shall stand tall!!!!

Because no young girl or woman should go through what I or any other woman has gone through from Ovarian Cancer. 

HELP US BREAK THE SILENCE!

My Mother passed away from Ovarian Cancer at the age of 55..that was almost 1 yr ago. I miss her so much.

I hope to help prevent anyone else from suffering.

These are just some of their heartfelt words......

I'll be in hospital til Tuesday, so long as all goes well.  It will be the same 

de-sensitization treatment as last time.  10 hours of chemo, yay.

 For some reason my CA125 is now 33, but I was told that was a reaction to chemo.  Oh well, that marker is not too reliable for me anyway.

I love my family, friends and followers.  Thank you God for all your gifts and grace.

Love Denise