Changing The Way Ovarian Tumors are Treated-Ovarian Cancer- Clearity - Oprah.com

Changing The Way Ovarian Tumors are Treated-Ovarian Cancer- Clearity - Oprah.com

Please take a moment to view this article and The Clearity Foundation's website. I pray I don't have a recurrence, but if I do, I plan to seek their help. They can help ovarian cancer patients receive a more customized medication based on the tumor's blueprint, better matching us with the right clinical trial. This is so much better than "hit and miss" based on generalized research. I am so happy to have been routed to this informationl.

Great Article on ChemoBrain

http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1642

Not to justify my problems or anything, but this is a great article that helps explain some of what I experience.  Especially the part about short term memory and word recall.  I still need 10 hours of sleep per night.........but I hope it gets better. 

Maybe as the days get longer, huh?  That would be great.

What matters

Mom had her surgery on Monday and is doing well.  She is preparing for dialysis and the vascular surgeon needed to create a few access ports in her body, one vascular, one peritoneal.  In the midst of her personal challenges I have been glued to the TV, like many, shocked by the Japanese tragedy unfolding before us.

Libya also now has a "no fly zone" and yet people are tweeting about St. Patrick's donut designs.

I get really confused with all this chaos and inconsistency.

On one hand we need to do all we can to be personally responsible for self maintenance and happiness, seeking whatever solace we can find in God, nature, family, work, etc.  Yet, collectively it does not matter, when you see an entire town vanish before your eyes with a fierce wall of water and debris.  When you see on TV a huge ship next to a wrecked home, and debris everywhere, you can't think.  You're stuck because you really can't do anything other than Pray and give money.

But here in my home, we still need to eat, take meds, go to doctors, watch TV, talk to family, plan for something fun to do when mom heals from surgery, etc etc etc.

I still battle my daily nausea and still can't wear jeans because I literally cannot tolerate pressure on my abdomen.  Wow, do I need a fashion make-over or what?

I see voc rehab at the end of the month.  Does it matter in the big pictuer?  It does, because I need to still take care of myself and those around me. 

We all need to follow the Japanese when it comes to community.  America is so "independent" that sometimes we hurt ourselves.  We frown on elderly and disabled living with family, as it it's some kind of crime.  In Asian culture, they take care of their parents, with pride.

I love helping my mom and pray she will continue to "let" me help her as much as possible.  She is so so so inependent, and in a way that independent nature is what literally feeds her life force.  But it is OK to ask for help.

Today I pray that people learn from Japan's tragedy and take care of their family and neighbors, love one another more and more.  We never know what will strike us down.  My faith in God keeps me going and is really the only thing that can calm and center me.  And when I say that, I see God in everyone around me.  So say when my sister comforts  me or mom, she is like a beam of light shining from above.  Or when my aunt comes to town, and brings much needed cheer to my mom, it's like one of Gods's angels said to tell her God loves her.

Love one another, especially today.

Peace

Missing Jayne from Shoppingkarma

I wasn't ready to read about Jayne's passing, not at all.  I'm not ready to say goodbye to a wonderful OC sister who helped me to live more.  Jayne has the blog "shoppingkarma" off to the left.  I feel sickened, literally.  She had so much joy and love to give, and give she did, freely.

I had been out of touch most of this week, and tonight I was going to post a message to the people of Japan.  I always check on my friends before posting, just in case something closer to my heart arises.

My heart aches deeply for the people in Japan.  My heart aches and I can't breath for the loss of Jayne.  May God Bless her husband Jimmy and may God carry Jayne in his tender arms and take make to vanish all of her pain.  I'm so so so sorry that Jayne has passed.

I miss you Jayne, and will send you my love in my prayers.

God Bless,

Denise

The past......is it still me?

Did I ever really talk about the vocational testing?  It was tough to do the psychological interview.  She asked me a bunch of questions about my personal history, relationships etc.  It was good and bad to revisit the past.

I am trying to figure out why such detailed questions were necessary, especially now.  I don't know about you, but having experienced this whole "cancer thing" has altered my perspective on so many levels.  I just don't feel the same as I did before cancer.  I AM A DIFFERENT PERSON.

I love everyone in my family MORE than ever and cherish my friends like never before.   The hard part is that I can't seem to express it well.

Maybe the chemo has also exacerbated problem areas which is creating a situation where I feel stuck.  I am a turtle, I move slow, and to much the dismay of those around me, I wil likely not be able to move any faster. Each day my physical priority is to get my gut in order, then the rest of the day is fine.  (TMI I know)

In my past, I have been one who had a few close friends, but otherwise, was very shy.   In my late twenties and early thirties, I had a bunch of friends for a short time.  When I filed bankruptcy, I retreated and eventually lost contact with them.  I had such a great group of friends.  Now I have reconnected with a few on Facebook, and I am so thankful to God for that gift.

Now, I am in a new area, and my friends are my family and a few people in California.  I feel really isolated.

I wonder if my family thinks I am too dependent on them now, and too needy?  I don't mean to be. 

I am going through what some would call REGRETS right now.  This is probably a normal experience when you have really faced the possibility of death.

I regret not spending more time with my little sister and brother.  That is probably the biggest regret I have.  I am 4 and 5 years older than they are, and I always saw them as a team, and now I want in.  I love them very very very much. 

Everything is moving too fast around me right now and I wonder how I will keep up.  See, since 1996, I have always had to live with someone else because I just couldn't afford the cost of an apartment on my own.  I am part of the "working disabled" community, the working poor.  And I had a lot of medical expenses because of my rheumatoid arthritis, and most of those bills went on credit cards.  So you can imagine. The only way I could live was to rent a room, and I went from house to house, like a gypsy, just getting by.  But I was as independent as I could be.

I am not sure if I will be able to exceed that level of living. 

Emotionally, I was already depressed from my RA.  The oc made it worse, and better.  I know that sounds weird, but it's true.

Now I see what is important, and have so much more love in my heart.  But I lack resources, not motivation.  My stuck feeling comes from not being able to take care of my needs in the right order and with the resources to do it.  I need a mastectomy, and if I get a job, when will they let me off work to heal?

So now I'm thinking to just do it now so that I can be healed before I get a job.

And then I think, well, forget the BRCA issue and forget the mastectomy.  Deal with that issue when you get breast cancer.

Another regret I have is the multiple attempts I made to start my own business or operate a home based business.  I can tell you that nobody wanted me to do that, but at the time, that was the only way I could bring in money.  I really had hard times finding jobs I could keep because my RA would get in the way eventually.  I wish people believed me there.

So because of THAT, my work history is just scattered, my resume sucks.  It is what it is.  This is the first time in my life that I have received any help from the government, and I've earned it.

But I feel guilty too, like a slug, like a loser sometimes.  People ask me why I don't have a job, where do I live, gee don't you want to live on your own???????????????????????????????????/

Of course I do!!!!!!!!!!!!!  I haven't had my own place since 1996, of course I would relish in THAT.  I would have an open wooden floor and dance my little dance all darn day.  But I am with mom right now, and you know what, I LOVE it.

I get the total godly joy of seeing my precious mom every day, good day or bad day. I get to relish in her stories and her smile, and I get the joy of doing what she asks me to do, if she needs it.  I'm not ashamed, I love it.  I love my mom.  I don't feel alone when I am here.

I feel protected.  AND, I want to support my mom too.  (she has her own challenges)

But I can't move out yet, but the plans are in motion.  I sent out another resume on Friday.  I meet with Voc Rehab next week to go over benefits and will meet my counselor again real soon to go over test results.

I do need more financial help soon, though and am worried but I know it'll be alright.  I'm not sitting idle awaiting a rescue, I just need a little more time. 

So to those of you who wonder what I'm doing, I'm applying for some jobs, not many, because only a few of them fit my physical needs.  But I look every day.

AND I am continually rebuilding my health as best I can.  I also applied to be a volunteer at a local cancer center.  I sent off the paperwork for a background check a few days ago.  I hope they accept me.

I participate in an online support group for ovarian cancer patients and caregivers.  That really helps me out.  I have connected online with one woman who lives in the area and she is organizing a get together for the local Seattle gals, for the springtime.  Yay.

And the best thing is that I get to spend time with my family.  Mom, sister, brother-in-law, nieces.  My aunt is coming out here in a few weeks.  Yay.

And I post on facebook every now and then.

When I go to Church, I feel at home.  I feel safe.  I feel pure love.  I pray every night before bed, and exercise almost every day. 

That's my life.  All I need is a boyfriend and a puppy, and I'm good to go.

I've rambled on and on.

Peace and love.

Ha Ha Ha Ha Ha Ha Ha Ha Ha

For a BELLY laugh.  My inspire friends guided me to laugh today.  Hope you laugh too!

http://www.youtube.com/watch?v=0Au_8GMUxVs

I love flip flop guy!

Peace, Denise

Sydney Opera House went Teal

Thank you Jenny for helping us to see this on inspire. 

http://www.newsreflux.com/2011/02/22/opera-house-sails-illuminate-teal-for-ovarian-cancer/

Next step, the Obama house needs a little Teal, don't ya think?

Peace and Love,

Denise

Cutri-Mazur Art passed

I was going to write today about me, my voc testing experience and general feelings etc. Instead I want to talk about how stunned I am because two more brave and beloved oc sisters have passed from ovarian cancer. I belong to an online support group, and this group has been so helpful to me. Inspire.com provides us with a venue to share, vent, care, love and support each other. Ovarian Cancer is wicked and mean. It destroys lives.

I am shocked at how frequently we experience the passing of a dear beloved oc sister. It scares me. We need each other so much and yet there isn't a darn thing we can physically do to help one another, just pray and send our well wishes, helpful advice and good thoughts. The only comfort is that they are no longer suffering, but in the arms of the Lord.

Below is a link (Cutri-Mazur) for one of the wonderful women who just passed. She was an artist.

Dear God, please comfort Lisa's family and hold her in your loving arms.

Cutri-Mazur Art


PS Whenever I think of artists, I think of my mom, sister and brother. They are so talented. Dear Lord, please support them in their talent and that their work continues to shine and inspire others to love.

Jake Shimabukuro plays "Bohemian Rhapsody" | Video on TED.com

Exhausted from Voc Testing. Will tell more about that later, but for now enjoy this amazing artist. Thank you dear Barb for sending me this link!


Jake Shimabukuro plays "Bohemian Rhapsody" Video on TED.com

Pateeta

Please say a prayer for my friend Pateeta.  She owns the blog "Shades of Blue".  She is on home hospice and had a major surgery today. 

Thank you and God Bless.

Egypt

All I want to do is congratulate the people of Egypt for inspiring the world to fight for freedom!  I am just transfixed upon the minute to minute events as they roll out across the TV screen.

I am energized, and hope you are too!  Wow, it's just amazing what the human spirit will and CAN DO!  NOW only if we can find a way for all oppressed people to own their own government, especially places like North Korea.

God Bless the people of Egypt!

Patient Stories May Improve Health - NYTimes.com

I thank my readers for allowing me to share my story.  It heals me.  God Bless.

Patient Stories May Improve Health - NYTimes.com

Voc Rehab update

Hi there.  I had two voc rehab appointments this week. 

On MONDAY, I met with the rehabilitation sciences counselor, and she gave me some homework to revise my resume.  She was hoping to facilitate a meeting with myself and the manager of a horticulture center, but that isn't really working out time and distance-wise.

The good news is that she will now be able to speak directly with the state DVR rep,  because I signed a release for her.  She is so nice and sincerely wants to help me.

TODAY I finished most of my aptitude testing at the other Seattle location.  The state DVR rep contracted an outside agencey to administer all kinds of testing to see "where I'm at".  Needless to say I felt like a total failure today.  My niece is probably smarter than me by now (she's gifted and was probably smarter than me at age 3)  Anyway, I had to complete a series of timed math, reasoning, spatial, and association tests.

The environment wasn't great because a lot of people were talking and I had a hard time focusing on algebra.

I guess I could have cheated and practiced math ahead of time, but I really wanted my results to be pure.

I mean, I NEVER had incomplete on my standardized test scores!  EVER.  I had good testing results as a kid out of high school.  Not a genius, but definitely above average.

Now, after chemo, processing things takes more time.  I forget names, faces, events, etc so easily.

She tried to make me feel better by saying "hardly anyone finishes the math one."  Ha.......In the past I would have finished.  I was a great student, took honors classes too...................sigh

I will be so totally depressed if the results come back that I've dipped in aptitude, in any area.

I just couldn't think fast enough, and got confused on the best approach to solving many of the problems in all the different testing areas.

I'll let you all know the results, I have nothing to hide.  I just don't want to look like a dummy on paper.

I need to take one more test and then she has a special interview for us to complete.

After that, she will run all the tests together for scoring and analysis, and formulate formal recommendations to me.  I am going to ask for copies of all results though, for sure.

No matter what the outcome, after the testing is done, I am going to make a special effort to improve my mental skills somehow.

I've never been a 'less than optimum" student...................never.  This is actually really scary.

I hope I'm overthinking this and that the actual results won't be that bad.

I wonder if I can use this to get my student loans pardoned....HA

Peace

Bad day yesterday

If you read my Travel post, I'm sorry.  I had an awful day and night, and just needed to vent.  Tonight my sister helped me iron some things out.  I love her very much..........

Some Giggly notes today

Isn't this the funniest little photo?  I needed a giggle today and maybe you will giggle too.

They say that laughter can be curative and healing.  I really hope so.  I had more nightmares last night.

Imagine someone you love being swallowed by a giant fish-lizard.  Imagine going for a scenic drive, getting lost, and the only way back is to drive up a road that is at least 80 degrees at the angle.  Imagine watching people fall hundreds of feet, but then miraculously getting up and walking away. Hmmmmmmmmmmmmm

So to cap things off, here's a little giggle about what it's like to have chemo-induced confusion, compliments of one of my OC sisters.  Peace and God Bless

A.A.A.D.D.

KNOW THE SYMPTOMS!

Thank goodness there's a name for this disorder.

Age Activated Attention Deficit Disorder.

This is how it manifests:

I decide to water my garden.As I turn on the hose in the driveway, I look over at my car and decide it needs washing.

As I start toward the garage, I notice mail on the porch table that I brought up from the mail box earlier.

I decide to go through the mail before I wash the car.

I lay my car keys on the table, put the junk mail in the garbage

 can under the table,and notice that the can is full.

So, I decide to put the bills back

on the table and take out the garbage first..

But then I think,since I'm going to be near the mailbox

when I take out the garbage anyway, I may as well pay the bills first.

I take my check book off the table,

and see that there is only one check left.

My extra checks are in my desk in the study,

so I go inside the house to my desk where

I find the can of Pepsi I'd been drinking.

I'm going to look for my checks, but first I need to push the Pepsi aside so that I don't

accidentally knock it over.

The Pepsi is getting warm, and I decide to put it in the refrigerator to keep it cold.

As I head toward the kitchen with the Pepsi,

a vase of flowers on the counter catches my eye--they need water.

I put the Pepsi on the counter and discover my reading glasses that I've been searching for all morning. I decide I better put them back on my desk,

but first I'm going to water the flowers.

I set the glasses back down on the counter,

fill a container with water and suddenly spot the TV remote.

Someone left it on the kitchen table.

I realize that tonight when we go to watch TV, I'll be looking for the remote, but I won't remember that it's on the kitchen table, so I decide to put it back in the den where it belongs,

but first I'll water the flowers.

I pour some water in the flowers, but quite a bit of it spills on the floor.

So, I set the remote back on the table, get some towels and wipe up the spill.

Then, I head down the hall trying to remember what I was planning to do.

At the end of the day:

the car isn't washed

the bills aren't paid

there is a warm can of

Pepsi sitting on the counter

the flowers don't have enough water,

there is still only 1 check in my check book,

I can't find the remote,

I can't find my glasses,

and I don't remember what I did with the car keys.

Then, when I try to figure out why nothing got done today,

I'm really baffled because I know I was busy all damn day,

and I'm really tired.

I realize this is a serious problem,

and I'll try to get some help for it,

but first I'll check my e-mail....