Wubby wubby feelings and the brain train

Just got home from a "happy walk" with "J" around the lake.  What a refreshing way to top off the day, lots of laughing, wubby wubby feelings and smiles.  I had such a great time with him.  He makes me laugh.  He is adorable, a real guy's guy, loves his kids so much and really cares about fellow human beings.  I hope it never stops.  Even a small dose of "J' brings light to my day (happy rhyme).

Still just friends.  I wish I was just a normal woman, healthy and able to just have a normal day.  OK, stop living in dreamland, it is what it is.

My head is swirling with thoughts of him, thoughts of my visit with the brain train engineers, as well as wondering how my future mastectomy is going to effect everything.  Sigh

So, to update you on the neuro-psyche visit today: great news.  I'm not at a total loss, YAY!.  The previous tests were showing that I was like a second grader in terms of math, etc.  So I got very depressed.  Well, the latest testing provided much more detailed and isolated findings, that encourage me to feel positive about my vocational future.

I do have short term memory problems and spatial problems, but my verbal skills are above average.  I'm between 80% to 90% in reading, math and spelling.  The testing revealed that I have strong abstract thinking abilities.  Non-verbal reasoning was strong, but remembering information out of context was below average. I wish I could give examples of this. I forgot the examples they used (ha). 

They were almost more concerned that my depression and anxiety aggravate my memory problems, but felt overall that my challenges can be managed.  That was a huge relief.  Nobody wants to directly say that chemo caused my memory problems, but I will say that it did.  I have an unwavering belief that chemo effected my memory, but I also have an unwavering belief that I can improve my memory and it will get better, especially when I get a part time job.

The one thing was they really wanted me to ask about getting on a different antidepressant, so I'll probably ask my doctor about changing medications.

I'm still petrified at the thought of being in a work setting, would rather have a million dollars drop out of the sky, but oh well.  I just don't want to get fired from a future job because I can't keep up.  That's a big fear.  I have a big list of things that make working hard, but I have to be positive.  One day at a time.

So this whole experience of going through neuro-psychological testing was needed, wanted and brought good results.  I want my family to be proud of me.

The next step is practicing interviews, getting my resume up to speed and getting clothes.

I was issued  a voucher to receive some free interview clothes!!!!  Yay Yay Yay  I have no money to buy anything to wear to an interview.  Having the opportunity to receive a few little dress suits will be much appreciated.  I am so grateful.  My next meeting with DVR is in a few weeks.

In the back of my mind I know I am going to have a prophylactic mastectomy, just haven't set the date.  As far as voc rehab goes, we're not putting anything on hold, we are forging ahead and will cross that bridge when we get there.  I'll need a little time off work to heal.

I am saddened though the more I think about "J" and how much I like him and how I feel pretty sure that the whole mastectomy thing could be a big turn off.  He wouldn't intend on that, of course, but I can just feel it.  See, I wasn't really planning on reconstructive surgery because I can't afford it.  I don't have 100K.  I need to look into my insurance policy and find out, but the reconstructive surgery is really three surgeries, and geeze, it's too much to handle right now.  Sorry for too much detail here.

So anyway, I'm just thinking out loud about "J".  He doesn't know yet.  I'm just now finding out what kind of movies he likes...................keeping it low key is just better.  I wish I didn't like him, it'd be easier.

So, good news on the brain train, and what else? Oh, "J" is perfect so far.  Not going to think any more about the BRCA1+ stuff tonight.

I forgot!  I went to Gilda's Club yesterday too. I officially became a member, finally.  Yay.  I have made a commitment to participate in a support group.  Even though it's downtown Seattle, ick, I'll go.  It'll be in the evenings once per week, only people who have or had cancer.  The social worker, whom I met with, said they are pretty concerned about the integrity of the group.  They want to keep a solid group together for 16 weeks, not a lot of in and out.  So I hesitated, then agreed.  

I think it needs to be done, go to a group and talk.  

I don't know when the group starts but I'm looking forward to broadening my network.

Here's a big hug to all you guys who support me and read my little thoughts from time to time. It means a  lot to me that you care.  You are in my prayers too, love you.

Peace,

Denise

Thanks Mom

My beautiful mother is taking a cat nap, here on the couch.  A perfect time for me to give thanks for being blessed with having this intelligent, thoughtful, beautiful and caring individual as my mom.

We had a great weekend.  My sister, her husband and girls came over to the house.  We played games and watched the Kentucky Derby.  Mom got a new grab bar for the shower, thanks to my brother-in-law.  Re-learned how to play "Clue" with my nieces.  Got to spend real quality time with the family, visit with sis and just relish the joy that mom is here.  My sister is a great mom!  I really admire her.

My brother called this morning to tell mom Happy Mother's Day, that was great.

So many OVCA sisters have passed this year, leaving behind, husbands, children, siblings, parents, etc.  It's a bittersweet time to celebrate any holiday now.  It's heavy.  Even though I know they are in heaven, and that they are now at full peace, it's sad.  I'm very lucky, very blessed, and hopeful.

I spent some time with "J" on Thursday. We had a light dinner, toodled around Seattle, went to a park for the perfect view, and then had a cupcake.  It was relaxed and fun.  Easy breezy, just the thing I needed.

As my mom relaxes here in dreamland, my most pressing thoughts and prayers are that she is happy.  She is travelling a tough road, finishing up surgeries for dialysis and taking all kinds of tests to determine her eligibility for a kidney transplant.

It's a tough time.  Please pray for her.  She is a rock.  She gets pummeled every day with challenges from her diabetes.  She is so tired.  I love her to death.  

So today I just wanted to tell God thanks, thanks for sending me my mom, and thanks for giving me my family. 

I hope all had a peaceful Mother's Day.  To those who have lost their dear mom's, I am certain that she is up in heaven smiling for she still feels your deep love.

To my Mom, I love you so much. Thank you for taking me in and being my angel.

Peace and Blessings

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

By TARA PARKER-POPE

“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.”

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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