Testing Day

Yesterday I completed another round of cognitive testing with an assistant to a neuropsychiatrist.  I was wiped out, and had to take a nap when I got home.  I was toast for the rest of the evening.

My examiner was friendly, I'll call him "B".  He was a really nice guy, young, hard working, and seemed to know what he was doing.

I had to drive to a new building in downtown Seattle, so of course I got a little lost but made my way.  I parked, walked around a bit not knowing the best entrance because the main doors were locked.  The parking attendant helped me along to the skybridge.  I had to call "B" twice to help me find the Starbucks.....trust me there was no signage.  Anyway, I was nervous, probably a contributor to my rocky start.

The total test time really was about 4 hours.  We went into a "little room" and he asked me a zillion questions.  I was nauseous and had some abdominal pain, the usual.

He did try to make me feel comfortable and explained each section along the way.  He asked me to remember lists of items, meanings of words, to remember story content, re-draw things from memory, put blocks together, do math, and finish sequenced drawings on paper, amongst other things.

I remember from my last round of testing that I thought I did better than I actually did, so I dare not try to predict my outcomes.  I can only say that I know I did better on some parts versus others, but who knows.

I really had a hard time with remembering lists and it wasn't until this morning that I remembered who painted the Sistine Chapel.  I could see the fresco, visualize the other works of Michaelangelo, yet could not remember his name.  That's so darn frustrating.

For real I have a hard time reading.  I can play around on the computer for long bits of time, my eyes get tired.  Reading a book though is different, for some reason.  I get real tired, can't stay focused.

Anyway, "B" seemed proficient enough and let me take a break when I needed it.  He's probably given this test so many times, he's memorized it by now. 

I think I was given the WAIS-III, because I saw part of the cover of the testing manual off the side of his computer.

So what will this matter in the long run?  I think it's really important because maybe patients on chemo may need to be more proactive with mental exercises as part of their treatment, IF that's even possible.

I remember being so drugged out I couldn't concentrate on TV, now that's bad.  Feeling like an observer, like other people are talking, but I'm not really there.  "wa wa wa" kind of thing, all the time.  I had just no excitement.

The only emotion I remember while on chemo is fear.  Real true fear.  Fear of people breaking in the house, fear of other people dying, fear of the shower head, fear of everything.

Now that fear is gone, but I still worry about other people more than normal.

If the rest of my life consists of me as who I am with huge holes in my memory, then OK.  I am alive. 

How will I be able to work though if I have a really bad memory or can't process information correctly?  That's the rub.

I remember the other day for the first time in two years I drove around an extra 20 minutes to listen some CDs and sing in my car.  I LOVE music and am really just now starting to enjoy it again.  I want to have a little place of my own, blast music, sing along, dance in the kitchen, and just laugh. 

I have to believe that I will make it and earn enough to live my own life again, I just have to.

Sigh.  So there is a lot riding on this test.  I pray the outcome is that my defecits can be mended or at least compensated for somehow. 

If I have two years or five years, I want those years to be meaningful.  I feel engaged in life now.  I feel ready, even though I still need 12 hours of sleep per day, I'm more awake and more energized. 

I will post my results...........not sure when I'll get them.

Well, this is Easter week.  Always a trying time for me.  I feel the pain of Jesus so deeply and although the ultimate joy will be his resurrection, the week of Easter seems to always bring me a real challenge.  Always has, like a car accident or losign a job.  So I pray this year I am free of any additional pain.

I thank you God for my family, friends, doctors and the opportunities before me.  I pray that my mom has good news this week, that my niece regains her inner joy and that my family stays strong and healthy.  I pray each of you feel God's love each and every day.

God's Peace and Blessings to you all.

Denise

Kathy Bates on Ovarian Cancer, courtesy You Tube

http://www.youtube.com/watch?v=ZEMjgYyJZxg&feature=player_profilepage

For all women to see.

Peace

CA 125 and chemobrain

Well, to start off with the good news, I received copies of my labs and my CA125 is 8!  I am so so so happy, I almost feel bad about.  There are so many OC sisters struggling right now with rising levels, recurrences, and in the midst of treatment, and I don't want to gloat.  I just want to mention it so that you all can see that there is hope a year after chemo ends.  Thank you God.

Although there is no guarantee that my level will stay low, I FEEL stronger and more confident that now is the time for me to do something that will make a difference.  I have some fundraisning and awareness ideas for the Seattle area, and I'm awaiting the completion of some brainstorming sessions before I share. I've spoken with a local cancer support group and am awaiting their response. I can't do it alone, but I think my ideas are unique and valuable opportunities for the Seattle area.

Chemobrain is one of three enemies right now. 

Chemobrain, abdominal MAYHEM and rheumatoid arthritis are always crashing my party.

As you know I received bad news on my aptitude testing.  I am scheduled to see a neuropsyciatrist next week (or is it neuropsychologist) for a major battery of testing.  We'll see.

They are trying to figure out why there was such a descrepency between my verbal and math and abstract thinking.  Do I really want to know how mushy my brain is?  Or is this the start of something good?  I think overall if I know my strengths and weakness, I won't start down the wrong road when it comes to work.  AND, I can target my mental rehabilitation better.

My testing also shows I want to remain isolated.  The only thing is, a big huge reason I want to stay away from crowds is that I have a weak immune system. I think that detail is not clarified in the psychological testing, so it looks like I am a complete hermit.  I tend to be a homebody, but I did used to have a life before my chronically weak immune system reared it's ugly head.  Oh well, what can I do?

My WBC/and neutrophils are currently below normal, so I am susceptible to bacteria and viruses.  THAT is why I don't go out much.  I'll try to explain that to the tester, but we'll see.

He said that there's nothing more I can do to prepare for it, just be ready.  To tell you the truth, I'm nervous.

I know I have memory problems.  I forget things all the time, and as I've said before, my personality is different.  I feel almost like a child, weird.  I just want to PLAY.

Can I get a job where I play all day??????  Ha, that would be true joy. 

I was so happy to go to church last evening and have an opportunity to pray deeply for my family, friends, doctors, OC sisters and other friends with cancer who are in pain.  I pray for you every day.

Thanks for taking time to check in.  I'll send a note about how the testing session goes.  I haven't a clue as to when I'll get the results.

By the way, after the testing, Dept of Voc Rehab plans to put me in a community based job setting to see how I actually do at "work".  Nervous about that too, but I need it. 

Peace and God's Blessings to you.

Love,

Denise

Fantastic doctor appointment

After being up most of the night with worries, I was able to come home today from my appointment and take a long nap.

I saw my wonderful gynoc today and received excellent news.  She can't see any cancer for now, Yay Yay Yay.  I went in early for a chest/abdom/pelvic CT scan and blood test, as part of my usual 6 month routine.

Because of the ongoing abdominal issues, I was concerned that cancer may be returning, especially since I still sleep almost 12 hours per day.

She spoke to those issues and said that I just need to keep exercising, and keep doing more, because I am getting better.

I distinctly remember that my overwhelming joy today was so different from my emotion this time last year.  Last year I was cautious, numb from chemo, super tired, and really couldn't believe I had made it.  NOW, I am here with great results and plan to cherish each precious moment God gives me.

Even though the vocational testing indicates me to be cognitively challenged right now, I am going to do all I can to get my brain back together and working well. 

But at the end of the day, if today is how the rest of my life goes, I am the luckiest person on earth.

Thank you God for bringing me my doctor and family and friends to help me survive the incredible challenge of ovarian cancer.  I will post more on this, I just wanted to get the exciting news out.

Peace, Love and God Bless

More on Chemobrain

I had the pleasure today to meet with my DVR counselor and the specialist who provided my Comprehensive Vocational Evaluation.  I am writing a short note about the results and about what will happen in the future. 

I also see my gynoc tomorrow for CT exam and blood level check up to monitor for OC recurrence.  I want to make certain that my Dr. gets this vocational information.

Well, if you knew me in highschool, college or after college, you would have thought me to be relatively smart enough to live a good life.  I got through high school and college fairly easily, and up until chemo, never had any issues with cognition.  At least not that I know of.  Mom always said I had an above

 average IQ.  Now I want to get my highschool records to see.

Now, my life is different.  I rank at 18% in numerical reasoning/skills, 14% abstract reasoning, and 80% in verbal reasoning.  All these were timed aptitude tests.  I did show some improvement on the untimed tests (numerical @26%) and (abstract @ 61%).

I would have never been accepted into college, let alone OT school with these very poor scores.  I've never really dealt with impaired cognition before.......................will I ever regain the strength of my brain?

I am in shock and very sad today.  BUT......there is good to be found.

Although my personality test showed me to be introverted, my interest tests show I want to be involved in artistic, social and conventional activities.

So, voc rehab plans to have me receive one more psycho-neurology test and then place me in a community based setting for on the job function assessment.

They are very supportive to help me find work that accentuates my strengths.  I am now not sure if I will ever qualify for any retraining.  I just don't know what to think.

Like I said, I am really shocked at such low scores, and bummed.  They want me to join a support group too so that I can build my self esteem.

Can you believe cancer can do all this?  Isn't it enough that my body was ripped apart and left me with ongoing pain and nausea that will probably last for life.  Now I have to deal with the financial consequences of losing my mental strengths, and am not sure if I can rebuild my mental skills or not.

I pray that I will be able to improve my mental function.  I will post on the results of the neuropsyche evaluation and CT Scan as well.

I just don't want to be "dumb"..............I never thought in a million years that I'd have to deal with cognitive decline.  It's not the end of the world, it could be worse, so that I know.

I have to accept that I operate differently now, I'm not the same.  I'm me, just different.  There is a silver lining here somewhere and I am so so so so relieved that my DVR team is so supportive.  It seems they are taking great care to help me get back to a normal life as best as possible.

I guess don't send me any budgets to balance or anything like that, HA!

Peace and God Bless

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.