CDC Symptom Diary Card

Sunday, May 08, 2011

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

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.