CDC Symptom Diary Card

Wednesday, May 04, 2011

New York Times on Chemo Brain Lasting up to 5 years

MAY 4, 2011, 1:18 PM

Chemo Brain May Last 5 Years or More

“Chemo brain,” the foggy thinking and forgetfulness that cancer patients often complain about after treatment, may last for five years or more for a sizable percentage of patients, new research shows.
The findings, based on a study of 92 cancer patients at Fred Hutchinson Cancer Research Center in Seattle, suggest that the cognitive losses that seem to follow many cancer treatments are far more pronounced and longer-lasting than commonly believed.
The study, published in The Journal of Clinical Oncology, is a vindication of sorts for many cancer patients, whose complaints about thinking and memory problems are often dismissed by doctors who lay blame for the symptoms on normal aging or the fatigue of illness.
“It’s clearly established now that chemo brain does exist and can continue long-term,” said Karen L. Syrjala, co-director of the Survivorship Program at Fred Hutchinson and the study’s lead author. “The real issue here is that recovery from cancer treatment is not a one-year process but a two- to five-year process. People need to understand the extent to which the cells in their bodies have really been compromised by not only the cancer, but also the treatment.”
The 92 patients in the study had all undergone chemotherapy as part of bone marrow or stem cell transplants to treat blood cancers. Although the range of effects of different cancers and treatments probably varies, researchers said the finding that cognitive recovery can take five years or more is likely to apply to breast cancer patients and patients who have undergone chemotherapy for other types of cancer.
The patients in the study were compared with a case-matched control, like a friend or sibling of the same age and gender who had never undergone cancer treatment. Both groups were given a battery of tests to assess memory and motor skills. The tests included a number of memory and word tests, like trying to recall a list of words or coming up with as many words as possible that all start with the same letter. Tests to match numbers and symbols and timed dexterity tests, in which thin pegs were to be placed into holes, were also included.
Comparing the test results of the cancer patients with those of the matched controls, the researchers found that among cancer survivors, most of the cognitive problems are largely temporary but may persist for five years or longer. Patient recovery generally followed a bell curve, with some showing improvement after a year, while others took two, three or more years to recover.
Dr. Syrjala said the good news is that information processing, multitasking and executive function skills all seemed to recover within five years.
“One of the things people complain a lot about during treatment is word finding, where you know the word, it’s a tip-of-the-tongue experience, but they can’t come up with it,” said Dr. Syrjala. “We hear that so frequently during treatment. The happy news in this data is that that piece of cognitive function does recover, but it usually takes longer than a year.”
However, verbal memory and motor skill problems continued after five years among a large group of patients. Although some neurocognitive deficits are expected to occur with natural aging, the percentage of cancer patients who still had cognitive and dexterity problems at five years was 41.5 percent, twice as high as the 19.7 percent reported in the control group.
Although the news of long-term cognitive problems may be disheartening to patients, it’s important for families and patients to know that recovery can take a while. More important, patient treatment plans should include the teaching of coping skills to compensate for potential cognitive losses.
“The first step is to set realistic expectations for people,” said Dr. Syrjala. “It’s not just patients, but their families and employers who need to realize that their brains aren’t processing as rapidly.”
Many of the cognitive deficits were relatively mild and easily addressed with coping skills like note taking or strategies to improve focus.
“We all lose memory with time and learn to compensate,” Dr. Syrjala said. “These patients just have to recognize that their brains are perhaps not as finely tuned as they were before they were diagnosed with their cancers, but they can compensate very effectively.”

Tuesday, May 03, 2011

Dear Sarah, Rest in Peace

Sweet Sarah has passed away today.  I just learned of her passing and although I knew she had chosen to let go, I did not believe she would pass so quickly.

I just did not believe it, it's too much.  Please visit her website http://carcinista.com/

Sarah appeared to me as a cornerstone in the community of women with ovarian cancer. She will be desperately missed by all.

I feel selfish for having written about myself earlier. I am in shock.

Will miss you Sarah.  My deepest sympathies to her loving husband, children and family. May you rest in peace dear sister.

Love,
Denise

Body Image, dating and freaking out

"J" and I had such a great phone conversation on Monday.  We talked for almost an hour, everything from the Bin Laden situation to religion to kids' soccer.  It's been a really long time since I had a guy show any interest in me and it felt pretty good.  I am relieved to say that yes, he believes in God, and has some Catholic in him.  Yay.  The most important thing was a belief in God.  He doesn't regularly go to church, but that's fine, no judging here, he has kids and stuff.  So anyway, with all that's going on in the world, I am a bit consumed with this new individual floating around my little world here.

He invited me out tonight for a light dinner and drive, because I am new here in Seattle, that would be super.  I of course said, "sure".  Well, as today progressed my panic grew.  I'm not ready to date, just not, no way.  I never knew I wasn't ready to date, how could I know until now.

Oh geeeze, my stomach got all upset and I said to mom, I have to cancel.  She said "why".  I said "Because I'm not ready, I just can't date".  Mom and I talked a little and I sort of gave her the short version of all my issues, but she understood.

See, I can tell "J" and I have good chemistry.  He makes me laugh and he's very good looking, and we seem to be able to have good conversation.  I know in my heart there will come that moment when we could kiss or something and I just can't start that.  I have too many issues related to having gone through all the debulking surgery.  Some issues are body image, not feeling pretty or sexy or whatever.  Some issues are that I literally have all this pain and cramping.  I just don't want anyone else to actually have to deal with that.

I'm not in the same shape I was.  Even though I'm not overweight, I have a lot less muscle tone.  I'm exercising every day but trust me when I say, it ain't what it used to be.  Haven't a clue if I'll ever
get my tone back.

I don't want to be the one to disappoint in the end so I sent him a text saying that I was a bit of a mess and needed to cancel but could we talk.  So he called me and we talked for a bit.

I expected him to totally say that this was too much information, too many problems and good luck.  Instead he became empathetic and caring.  He just said that if "friends" was all I could do right now, that was cool.  He didn't want to have pressure on dating necessarily, but it was up to me.  I was so relieved.

So we are supposed to have a coffee or something on Thursday evening.  I just want to have fun with him for now while I work out my issues.  PLUS, I don't want to get attached to some guy and then have him drop me because I have all these issues.  It's better that we just be friends and get to know one another, and see what happens.

This roller coaster of emotions prompted me to call Gilda's Club.  I have an appointment later this week with a social worker to see if going to a support group would work for me.  I have been in denial that I needed a support group.

I feel safe in my little room, being with mom and just doing the minimum in terms of treatment for now.  I just haven't really gotten on board full scale to heal my heart.  My heart is a mess, and I have no self confidence.

I am close to becoming a nun, no joke.  I have often thought that I should spend the remainder of my life in prayer, that works for me.  I never in a million years thought I'd even have one  more date.  I realize I sound like a teenager here, but it's true.  I mean, I didn't expect to survive, let alone meet a cool guy.

I owe everything to God, and am resolute to doing my best to honor in God in every way.  

There is a plan, and I have no clue what it is.  All I know is that the more I listen to the little voices in my heart, the inklings, the feelings, the better I do.  If I would not have said anything, gone out on a date, knowing that I have no intentions of intimacy for a really long time, that would have been wrong.

So the friends thing is good for now.  I do like him.  

I still need to have my mastectomy.  I mean, there's just too much left unsaid right now.

Well, thanks for listening.  I hope this makes sense to somebody.

I just need to address some emotional issues on a more personal scale, and really handle them.

Love you and Peace

Thursday, April 28, 2011

Dating after cancer, complicating

I just had a wonderful date with a guy I met at a hospital here in Seattle.  I was shocked that he asked for my number, but I gave it to him anyway.  We had met one time before when my mom had a prior surgery, so I was familiar with him.  He works there.

He smiled a lot and generates a good "vibe" so I thought, well, what's the worst that can happen?  

We chatted on the phone the other day for about 15 minutes and set a date to meet at a 
casual Mexican food place for dinner.

I am not sure I'm ready for this step in life.  I mean for all practical purposes, I literally have no "date" clothes.  I threw all that away when I moved from California, only so much was gonna fit in my car.  I  needed to make sweat pants a priority.  I can't wear jeans any more, so that was just a waste of trunk space.  Anyway, a girl likes to dress up, even if it's for a taco.  (Actually I had pasole, and it was yummy).

The REAL reason I'm not ready is the obvious, intimacy.  Read no further if you don't want to know about all this, but it's part of life and most healthy people have a partner.  Truth be told, I only want intimacy with the man I marry.  At this point with all I've been through, nothing else is OK.......sigh.

He (J) is cute, funny, adorable and I know that we'd do fairly well for a while.  He's fun, but real, down to earth, has kids, is really responsible....hello?????

But I may have a prophylactic mastectomy in the next year or so.  What if my cancer comes back?  I still have all kinds of icky problems from Chemo, and abdominal pain, etc.  My huge scar.  Do I really want to get all excited about a good guy only to at the end of the day have to say goodbye because of my cancer issues.  I couldn't blame him.  He doesn't seem the type, but he has his wishes, just like everyone else.

He knew I had ovarian cancer before our first date, so I gave him an out right away.  We talked a little about it again, lighthearted discussion, and he still wants to see me again???

He is so sweet.  I want to just take it a day at a time.  I haven't been on a date in over two years.  Yikes!

So.....I don't know, I'm more comfortable with me and God.  God loves me no matter how icky my body is or how much nausea I have or how terrible I look.

People are different.  If I'm dating I want to look pretty and not be feeling bad.  

Well we have a long way to go anyways, cause we haven't spoken about real important stuff like religion and politics yet.  So....really the most important thing is God.  Politics aren't really a barrier, he has a good heart, I can tell.  But I go to church all the time and want someone who is faithful to God.

I pray he is, and I pray he can accept me.  But should it not become more than a friendship, he will be one of my finest male friends here in Seattle.  If he wants that.

I don't know what to do here.  I guess I'll just go along with what God has presented to me and see what happens.  I feel really lucky that I went on a date.  I thought that would never happen again.

PS.  my neuropsyche results are in, just need to get our appointment set.  So I'll be sure to let ya'll know about that.

Peace and Blessings to you all.

Wednesday, April 27, 2011

Dogs that can sniff cancer from ABC News


This is an impressive video clip about how dogs can help catch cancer in it's early stages.  I learned about this segment from a teal sister on inpire.com.  Thank you for sharing this with us.  I want all my followers to know more about how man's best friend is truly a life saver.

Peace and Blessings to you all.

Denise

Monday, April 25, 2011

Pateeta, may your sweet heart rest in peace

I am writing to say that our dear teal sister, Pateeta, has passed away.  I did not want this day to come.  We knew it would be here.  I am so sad.  Pateeta was such a strong, spirited, fighter. 

She was a rock to us in the ovarian cancer community.

See her blog "Shades of Blue"

Dear God, please keep Pateeta close to your side, keep her warm and safe, happy and well. 
 Rest in Peace Pateeta.  My deepest sympathies to her family.

We love you Pateeta and will miss you dearly!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

God Bless

Sunday, April 17, 2011

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

Monday, April 11, 2011

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

Thursday, March 31, 2011

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

Wednesday, March 30, 2011

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

Saturday, March 26, 2011

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.

Sunday, March 20, 2011

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.


Thursday, March 17, 2011

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

Friday, March 11, 2011

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

Saturday, February 26, 2011

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.

Wednesday, February 23, 2011

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!


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

Sunday, February 20, 2011

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.

Thursday, February 17, 2011

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

Friday, February 11, 2011

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!

Wednesday, February 09, 2011

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..........

Monday, February 07, 2011

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....

Sunday, February 06, 2011

Limboland

Feeling like nothing is under my feet today, nightmares again.  Oh how they keep me on my toes.  Life goes on.  Embrace the day.

To the people in Egypt, keep fighting, never quit!

Saturday, February 05, 2011

Tears

The Mitch Gift post and the story of OC Warrior1026 "If cancer was easy they'd call it your mom" is so heartfelt, so touching, I just have to encourage you to read it.  I'm speechless................................

Friday, February 04, 2011

Fight with a fury

The passion of the pro-democracy fighters in Egypt is amazing.  I leave my TV on CNN when I go to bed and periodically wake up to check in and see what is happening.  We truly are blessed in the US.

As cancer patients and survivors, it feels like we need the same amount of "fight" to maintain a strong hold on the track to survival.  We should be rallying in the streets just the same for equal health care for all.  We should be rallying in the streets demanding a real cure for cancer, not just more tests on treatments!

I read somewhere that today is World Cancer Day. 

I'm tired of the marketing campaigns and am ready for the money to be spent on the nitty gritty, the truth.  Why do our bodies spin out of control?  Is it the toxic water?  Is it the toxic air?  Is it the toxic food?

Deep inside I think somebody has the answer, but isn't really able to share. 

We need to get our "fight on" and win this battle and win the war on cancer.  I wish I had the "how" for you, but I don't.  I'm just feeling frustrated today.  As I watch the plight of the people in Egypt, and pray for their safety and that they are able to gain true freedom, it makes me want to "do" something.

So I write.

Please say a prayer for mom, her cousin and my brother-in-law's uncle.  My mom needs a kidney, and the other two are facing the war with cancer.

God Bless

Tuesday, February 01, 2011

More nightmares

My brother made this tweety bird when he was either in the second or third grade.  According to mom, my brother incisted that we put it on the Christmas tree, and this little guy has become a seasonal "regular" ever since.


I say this today, being February and all, only because I was looking for a treasure to touch my heart.  Today is just a crazy day in the world.


Egypt is in chaos, Australia is facing a catastrophic typhoon/cyclone/hurricane, and the US is facing catastrophic snow and ice event.  Every day I get the joy of experiencing time with mom, hearing from family, reading blogs and journals from OC sisters, emails from friends, and yet I still have nightmares.


Last night I dreamnt that I was attacked by a pack of dogs.  In the dream, I was visiting a family and they had at least a dozen dogs.  The house was all junky and the family had lots of kids.  None of these people are "real" people I know, just fabricated people.  I was sort of an uninvted guest, arriving to return some clothes I had borrowed.  I entered the living room and was assaulted by big dogs, and they were of all kinds of different breeds.  The thing was, they would growl and put their jaws around my ankles, but only press lightly, to intimidate me.  Then, amongst them were a few gentle loving puppies and smaller dogs who "loved" me.  They would come up to me and beg me to pet them, making my heart sing with joy.


The father of the house was trying to teach me how to gain the trust and love of the big mean dogs. He was telling me how to talk to them, how to reach out, how to signal to them that I wanted love, not harm.  So I tried and tried, but was only able to gain the trust of a few dogs.

Suddenly, the mom of the house asked me to take two sick dogs home, so that I could care for them.  She gave me two dying smaller dogs, and I embraced them and took them home.  My roommates got angry with me for bringing them home and made me place them on the outside porch.  I was looking at them and then I was suddenly thrust back into the home of that same family again.

Only this time, their house was an airplane trapped under water.   Like living under the sea, you could look through the windows and see fish, dolphins and whales in the beautiful blue water.  The family again was annoyed with my presence, but was polite and asked me to play a game of cribbage.  Only, it wasn't cribbage, it was a game I'd never seen before. It was more like something you'd see in a Harry Potter movie, and I was terrible at playing the game.  Suddenly, the airplane started to succumb to the pressure of the water, and started leaking.  We all started running out of the plane and ran straight back into the dark and cluttered house.

Then I woke up.

So as I sit here and type, and watch the news, and wonder why I can't get my behind up and exercise, I wonder what THIS dream means.  Just bizarro!

Ironically, I was on You Tube last night watching cute puppy videos.  Hmmmmmmmmmmmmm

I hope we find some warmth and peace in the world today.

God Bless





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!
Posted by Picasa

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!

Denise

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

Nightmares

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

http://myemail.constantcontact.com/In-The-Know-With-OCRF--Teaming-up-with-SheROX-Triathlon-Series-and-More-.html?soid=1102150261756&aid=7VrRvYybVDk

http://myemail.constantcontact.com/In-The-Know-With-OCRF--Teaming-up-with-SheROX-Triathlon-Series-and-More-.html?soid=1102150261756&aid=7VrRvYybVDk

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.

Love,
Denise

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.....

Love,
Denise

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 OK.....it has to be.

Love.
Denise

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.........

Anyway,

Have a good weekend.

Thursday, January 06, 2011

whatever

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 counts..........so 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.

Lost

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,
Denise