CDC Symptom Diary Card

Thursday, January 27, 2011

Mom and I at the beauty parlor

Today I had the great pleasure of taking mom to the salon for a hair re-do. I have not had my hair cut since it started growing back from chemo. Mom was up in arms over her hair and was desperate for a change.

My hair grew back super kinky curly, gray, and just really a nightmare to style. I had been managing with simple straightening of the front and top, while leaving the curls to fend for themselves. But.......lately my hair has started looking like clown hair, so the time was now to make a change.

For now I'll have to get my sister to take a photo of mom and I over the weekend, and I'll post that photo. Mom is a bit camera shy right now.

The goal was to be happy with our hair and our goal was met.

I just want to live at an Aveda salon, I mean, luxury, spa, candles, lotions, art, everything you need to feel beautiful. I wonder what they'd charge me for rent. Anyway, this beautiful litte girl in the above photo is my mama, Jane. Isn't she sweet?

Love to ALL!
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Wednesday, January 26, 2011

Vocational Testing has begun

Today was the first of two days of vocational testing.  I do the rest of the testing next week.  Before I go into details I need to express the complete and total gratitude I have for the fortune of receiving these tests.  I have been lost for such a long time when it comes to career, and since getting cancer and chemo and surgery , that just shattered what little confidence remained within me.

I don't know how long I'll be here, but I really do hope that this testing puts me on a clear and purposeful path that allows me to help others and feel gratified at the same time.

Today was a series of "bubble" tests concerning interests, psychological health and an assessment of my barriers to work.  Nothing addressed my actual ability or aptitude, meaning I strongly like dancing but probably not a candidate for ballet in this lifetime.....oh well.

I just feel like a total failure.  My mom says I was speaking full sentences at 6 months of age.  I did well in school without much effort and had an ace memory before cancer.  Now I can't remember what you name a game of "squash" without help.  I can drive to new places, just afraid to........maps confuse me more than they used to.

I feel like chemo stole my soul, part of my mind and emotion.  I feel like it drained my passion and put my legs in cement blocks.  I "want" to do so many things, but just don't.  I can sit and stare forever.............

Anyway, I am so happy that this ball is in motion.  So grateful to God that he keeps sending me little angels to help me along. 

Love you all!


Either Called "Chemobrain" or "Chemofog," the Long-Term Chemotherapy-Induced Cognitive Decline in Cancer Survivors Is Real - OncologySTAT

'Here's chemobrain for you, I can't remember if I've posted this link of or not. Thanks everyone for your kind and supportive comments. Hugs.

Either Called "Chemobrain" or "Chemofog," the Long-Term Chemotherapy-Induced Cognitive Decline in Cancer Survivors Is Real - OncologySTAT

Tuesday, January 25, 2011


I can't understand it, but for the past three nights in a row I have been having nightmares.  As I sit here and type, I can visualize last nights epic adventure into mayhem.  It was just awful, terrors in a church, and I lived in the church, a little cute cottage attached off to the side.  Hundreds of people were trying to help me escape the attacks and I was ridden of all my posessions.

Maybe this is a sign.  I have nothing to really speak of, a car, a computer, a few clothes, a TV and an exercise machine.  What I actually have is the Grace of God's beauty all around me, my loving family and friends.  My compassionate doctors and nurses.  The neighborhood kitty that likes to say hello.

I don't really want for what I don't have except to say that what I have is what I want.

All I know is that my dream literally scared me to surrender everything.

Maybe tonight I will dream about puppies!  HA

Love to all

Monday, January 24, 2011

Blocking rogue gene could stop spread of cancer, new research suggests

Here's some interesting research. One day I hope to see an article that says "we know why you have cancer and here's how to prevent it". Until then, this will be a great start.

Blocking rogue gene could stop spread of cancer, new research suggests

Saturday, January 22, 2011

Moments go by and off we go

RIP to my dear cancer sister, Daria Maluta.  You were a brave and articulate compassionate soul, striving to help all your cancer sisters.  Just a few weeks ago you were set to participate in a new clinical trial and suddenly things changed.  You had so much grace, and worked so hard to tell us how you lived.  You really cared about everyone around you................

I am deeply saddened by the loss of another sister to cancer.  "Why" will never be answered.

All we can do is all we can do, to breathe love in and out and around to those we love.

My precious sister and I spent some time last night just talking over coffee while her kids were at karate practice.  It felt so incredible to just talk and share and see her smile.  I pray every day for God to grant my family the ability to share joy with each other and others in the world.

God Bless you all.


Thursday, January 20, 2011

Breast health and voc rehab update

Today I went to the SCCA for a thorough breast exam.  The results were good, the nurse practitioner found no unusual bumps or issues.  Next appointment should be around March, to include a mammogram.  She asked me if I was ready to discuss prophylactic mastectomy due to the BRCA1+ mutation.  I'm not ready yet for that, that's all I could say.  For now I'm just grateful to be without noticeable change, and free to forget about it for a few months.

I saw State DVR rep yesterday.  We also had a representative from Harborview Med Center there, to talk with me about a comprehensive vocational evaluation.  The CVE will be a better test than working in the community for a few weeks under constant supervision with constant testing.  I am so relieved.

Next week I will begin the testing, starting next Wed afternoon.  It'll take 3 - 4 hours to complete the first part of the test.

I don't know too much what to expect, but do have a general idea of what it could be due to my own work history.

This is a hard week for my cancer friends, several going back in hospital, and two on home hospice.  Things seem to turn so quickly in cancerland.  Even when you are well, suddenly from nowhere it comes again.

Please pray for them and pray for my mom, that her kidneys recover and that her diabetes stabilizes.

I love my family so much.  My brother and sister are rocks........My aunt and uncle beach rocks.....


Friday, January 14, 2011

Cancer lifeline

Today I was blessed with the opportunity to see the dentist through the Cancer Lifeline in Seattle.  The program offers low cost or free dental care to cancer patients, who would otherwise not be able to receive dental care.  I found out about the program through Survivor program with Lance Armstrong Foundation.  I was so lucky.  I had a cleaning, tooth fixed, simple x-rays and was treated with so much compassion.  It was truly amazing.

I have only 4 cavities that need filled (one bad) and get to go back in March.  I truly was expecting more cavities because it has been so long since I've been to the dentist.

Lot's of newer research can show correlation between dental health and overall health.  Now that I'm NED, I need to do everything I can to treat my body well, and be "healthy".  I never know what my life will really be.

Two of my OCA sisters are really struggling.  Shopping Karma and Shades of Blue, please pray for them.  Their painful struggle with cancer recurrence always gives me pause.  Daria from Living with Cancer is also going through it and could use our prayerful thoughts.

Today I pause to remember my blessings.

I'm fielding prayers for mom.  She will be starting dialysis sometime soon, and she is still absorbing it all.  I will be here to do whatever it takes to make her happy.  I have such a loving and caring family, and I know it'll all be has to be.


Friday, January 07, 2011

CA 125 now 12

Today I feel a little better.  I just have to let go of expectations for my life.  I really just want to help my family, that's all.  I want to be able to take care of myself, that's all.  I don't need to travel the world, I don't need to win a million dollars, I don't need to climb a mountain, I don't need to do anything spectacular.

I just want to feel love and give love. 

My CA125 is rising slightly, now 12.  The nurse said that the last time it was also 12, I thought it was 10.  Confused a bit on that.

I am trying not to worry, under 30 is normal.  But a slow steady rise is not comfortable.  I just have to let it go, I have too many other things to take care of and I can't do anything about it anyway.

I just hate the feeling of instability.

I want to know where I'll be in six months or a year.  I want to just have stability.

I sent my medcal appointment schedule to DVR today, and I meet with them again on the 24th of Feb for benefits meeting.  That seems so far away.

My white counts are low again.  It's getting time for a neulasta shot.........


Have a good weekend.

Thursday, January 06, 2011


Pleasantly surprised to find that the seasons channel on cable is still playing Christmas music..yay.  Anyway, I wanted to share up to dates on health, work progress, help needed, etc.  My body feels "OK" and I think the new supplements and cantelope are helping my belly.  My nausea is not as strong, still every day, but more manageable.......which gives me great hope.

First, since I've been battling cold with strong cough, I had to reschedule the psyche appointment.  I hope to see them this month.  I really do need at least one visit, especially after I finsih telling you about my appointment with voc rehab.

Second, went for CA125 lab and port flush yesterday.  I asked them to pull a CBC because it's time to get my WBC we'll see.  I'll know all that in a few days.

Third, I see the breast nurse practitiioner at end of month for thorough breast exam....for BRCA1 mutation maintenance.  Let's hope all goes well and no lumps please.

Fourth, voc rehab is driving me crazy.  I met with "G", nice enough young man.  He claims he never received my medical records until lately.  But after I asked him to look, they were stamped as having been received by end of October. WHEN IM MET WITH THE FIRST PERSON IN EARLY OCTOBER, I SAID I HAD RESOURCES TIL END OF JANUARY, THEN THAT WAS IT. 

Well, here we are and the next step is for me to do a community based trial work for 2-3 weeks, unpaid.

The want to see if I' ready to return to work.  The problem is that "G: didn't even know what skills I had or anything.  Plus, I already said that going back to my original type of work was bad because my arthritis is worse since my cancer.  I can do spurts of things, like wash car, or clean room, or move small piece of furniture......but working 8 hours per day filing or typing is way different.  I need a new career!!!!!!!!!!!

ASSUMING I LIVE long enough to graduate!

I hate these people.  They have it all backwards and are not geared for cancer patients.  I only earn 626 per month on disability.  I just need a fricken part time job that won't kill me, and have that for a bit to build up my tolerance.  Then I want to do some training to see about working at home!!!!!!!!!!!!

If I go back on chemo, which I probably will have a recurrence, than I can work from home.

Why is this so hard to understand?????????????????????????????????????????

Plus mom wants me to move out soon, she will be starting some serious health treatments and would prefer to be alone.  I can understand that, but she'll need some help.....

I just don't understand why she won't just let me help for a while when I'm working part time, so that I'm there in case she needs someone and I'm then able to build up residual to move out.

No, now I don't know what I'm going to do.  I'll keep looking for part time work along with the millions of other people.............I hate this fucking disease.  Meanwhile the bitch who misdiagnosed me is earning a healthy stocky MD figure living the high life.  Fuck her.


Saturday, January 01, 2011

Joyous Year ahead for 2011

At least for this we pray............what a great idea "happy new year".  Well I am hopeful for an even better 2011.  That's about the best I can do, for a resolution maker I am not.  Plus, I'm starting it off with a cold and was in bed by 10pm.  I did get to have fun watching Kathy Griffin and Anderson Cooper do their fun little show.  I think they should get together.......despite any rumors about AC.  I think he's fabulously handsome. 

They make the perfect couple.

Anyway, onto more serious topics, like LIVING.  Having been graced with the opportunity to talk with a few friends over New Years Eve really brightened my day and reminded me that friends can be the cornerstone for living long healthy lives.

My mom and I were talking about this for most of the day.  The most important loss she has sustained in moving to Seattle was the loss of close friends to "be with".  Seattle is not an easy place to get to know new people.  Everyone's covered from head to toe in rain gear, and running.  It's hecka heck to drive around out here, it's like living in a maze.  A lot of effort goes into planning a car trip across town, just a drag.  So it's hard to meet new people,

I go to Church and for the most part I relish in the opportunity to say hello, offer Peace, and be surrounded with a strong sense of community.  It lifts me to talk with God in his house.  Not everyone goes to church though, not everyone wants to go to a community center, or support group.  Somehow though, someway, we must find more ways to create meaningful healthy relationships with others, others who really do care.

The whole "It takes a village" thing is true.  AND, when we are receivers, we also need to be givers.  Maybe not all at the same time, but it's healing to be giving.  I always find ways to give with prayer when I am ill.  But I want to do more.  All of us can give with our prayers.

I really want to engage in a non-profit or start a non-profit to help women with ovarian cancer.  Maybe it will hone in on the needs of single women.  Single women who get cancer are really in a challenging place because although she may have good family and friends to help, the constant "partner" isn't there by her side to help with the details and daily things that are personal.

When you have cancer, sometimes all you want is just someone to hold you for a while. 

That being said, my hope is that for you the year 2011 brings riches in friends, family, jobs and community.  May the Lord Bless your home with Love and Peace.

Happy New Year,