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