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Saturday, May 28, 2011

Remember Ovarian Cancer and Dr. Oz

I'm thinking out loud here...........

Why is the medical training segmented into body systems versus body regions?  I ask this because this "systems" frame of reference is probably one of the biggest reasons ovarian cancer is often detected in an advanced stage, if at all.

I attended a very informative survivors course on May 20th designed to help ovarian cancer survivors better heal, understand this illness and look for ways to start to move forward with their lives.  I enjoyed it and was fortunate to hear my gynoc speak, she did amazing.  I met some women from my online ovarian cancer support group, yay.  Overall, I learned a lot, walked away with good resources, and made new friends.

Dr. Goff presented incredible research done on early detection of ovarian cancer.  But we are really still in the research stage.  Of course I can't remember all the details and left my notes in another place, but it's safe to say that Ovarian Cancer researchers are aggressively testing for valid and reliable early detection methods.    It's on the agenda and we must continue the fight.

So at the end of the day, the best mechanisms for early detection are for women to pay attention to their bodies, look for early signs of ovarian cancer and tell their doctors what's going on. Then we need to depend on the physician to know what tools are needed to accurately detect what illness is present, and know then how to properly treat the illness. Is it IBS or ovarian cancer?  We are constantly amazed at how frequently a woman with deadly ovarian cancer is told she probably has IBS and almost dies.

So what about women who aren't even aware of the symptoms?
What about women who have few or no hard symptoms?

We pray for good doctors.  If a female has an under-informed or misinformed or outright negligent primary care doctor or regular gynecologist, please pray for her.  

If you know my history, you know what I'm talking about.  Here's a reminder.....early symptoms for me were low back pain, cruel/severe abdominal pain, whacky periods........eventually bloating, even more abdominal pain, unable to eat real food, getting full quickly, problems with urination ( I was told to do kegel exercises).

All of these symptoms occur in the abdominal and pelvic region of a woman's body.

BUT, instead there are multiple doctors evaluating the same region of your body, all looking at different systems. Not ONE, not ONE detected my ovarian cancer early.  Early detection rarely occurs.  

I went from PCP to regular gynecology to gastroenterology and even oncology.  The last gynecologist who treated me in California never did a bi-manual pelvic exam.  I was having problems.  I'll always wonder if he could have detected it early....

The gastroenterologist did a colonoscopy/endoscopy and found nothing.

My PCP was worthless, and said it was up to the specialists to figure it out.  She's the one who told me to do kegel exercises for my urinary frequency.  Meanwhile I was having other problems....ugh

And, I'll remind everyone I was told by at least three doctors I was too young to have ovarian cancer.  One oncologist (who only saw me one time) told me he chose not to do a CA125 test on me because of my rheumatoid arthritis.  Since I was told I was too young to have ovarian cancer, I actually believed them.

Again I thank God that He sent me an excellent surgeon and then an excellent gynoc in Seattle.  It's like finding the last lifeboat on the Titanic.

So here's my solution.  Instead of a million doctors looking at different systems in the same region, lets have a few specialists look in the abdominal as a whole and see how things work together for a change.

If medical care was based on regions, then all the organs and tissues in THAT region would be analyzed.  It doesn't mean that the doctors couldn't incorporate their comprehensive system knowledge, it just makes diagnosis more efficient.  I think we assume that the PCP is supposed to wear this hat, be the central information communicator.  Alas the PCP seems to have been reduced to a referral agent.  I hate to say it but they don't seem to know as much as they used to, maybe that's all in my head.

In other words maybe a new area of medicine is necessary, an abdominal cavity specialist.  Not to detract or add to the multitude of specialists already in existence, but in the case of ovarian cancer, the symptoms show up when the tumor grows large enough to negatively impact other "systems".  It impinges on say the ureter or the bowel or some other organ nearby.  It is then that we know something isn't right.

You would think that logic would dictate that because the ovaries are hidden, that doctors would be MORE aware of ovarian cancer, because they should be aware of hard to detect illnesses/diseases as well as easily detected diseases.  It's like the medical community only wants the easy patients sometimes.  How harsh us patients must be if we were to expect a gastro doc to be aware that ovarian cancer symptoms are similar to IBS.  We are demanding aren't we....

So at the end of the day, we as women need to tell the doctors we might have ovarian cancer.  Unless you are favored by God to have an amazingly bright and informed physician who remembers ovarian cancer, you may get misdiagnosed.  


In the mean time, please link to Dr. Oz show as he is taking the daytime TV show lead to help teach women the signs of ovarian cancer.  Dr. Goff is also on his show.  She provides valuable and lifesaving information and explains very clearly how dedicated she is to ending this deadly disease. She also reveals new research in the field of ovarian cancer, please watch the program. 


Peace and Blessings

Thursday, May 26, 2011

Dear Cathy Rest in Peace

I have to take a deep breath because I'm about to write a difficult blog.  Our beloved online teal sister 
Cathy A. has left our earthly world and has moved on to a much better place.  

She is now with God, resting and hopefully smiling.

When I first joined this online community of amazing people, Cathy was more than likely the one to post a funny story or joke, to help us heal through laughter.  She was gifted, blessed and very generous with her humor.  I always enjoyed her posts and looked forward with great anticipation to reading her quirky notes.

She fervently raced after a clinical trial, but only God knows why her road was rocky.  Although I never met her, she will forever be in my memory as an unselfish and graceful woman who fully gave of herself for the betterment of others.  As I was saying goodbye to my little bee, her dear family was saying goodbye to her.  She went home, and is no longer in pain.

Rest in Peace dear Cathy.  I pray for your dear husband and family.  May God hold you gently in his arms.

Sunday, May 22, 2011

When bees say goodbye

I was captured today by the behavior of two little bees, one alive and one who was no longer living.  I spotted these beautiful little critters on the back patio landing that leads our steps to the rickety basement.  The basement is not finished, but exposed and houses the laundry area.  I had taken some clothes downstairs for the first of several runs of laundry and upon coming up to the ground level, there they were, this lovely pair of bees.  I had  intended to write today about my seminar, but this story tells us about what I learned most from the seminar.

At first the bees were hard to see, with the old cement, moss, tiny pebbles and what not.  But as I bent down to take a closer look, I saw one on it's side, not moving and the other passifying and tending to what seemed to be a dear friend.  I know absolutely nothing about bee behavior and did a quick search so that I could find some substantial information about what I saw, but really found nothing.

As soon as I saw the bees, I sat down on a step and watched, and gazed and wondered and almost felt the pain of the living bee.  I felt so bad, and wanted to do something to help it, but couldn't.  Since having cancer, I have found myself much more sensitive to animals in general, I just feel them in a different way than before.  They have spirits and are not just nerves and tissue.  For example, just last night a raccoon was on our roof, and upon it seeing me looking at him, walked from the edge of the house to an area just above the door and he just stared at me.  I could feel him and wondered, wow, and oh this bad or good.  Either way, it was a being, not just an animal. (I've always believed all animals have spirits, it's just that now that sense is much more intensified.)

After sitting outside for a bit, I did a small search on the internet.  I did read that sick bees are either taken from a hive or take it upon themselves to leave the nest when they are sick, so as not to infect the rest of the bees.  It preserves the overall health of the nest and prolongs the hive's life.  I wonder if this is what had happened to the poor little bee.  Maybe the caretaker followed the bee to be with him during his last moments.

As I sat there outside on the step, I actually took the back of my hand and stroked the back of the caretaker bee. Before I did this though, I hesitated a bit because I thought, "don't do that, it's silly and it'll probably sting me".  Well, it didn't sting me or anything really.  It was focused on it's friend.  It just moved it's antennae  and continued to keep doing it's business.  The caretaker bee was stroking the dying bee with it's antennae, slowly moving around, seemingly to sniff and touch and massage it.  It was just fascinating. I have never seen anything like this anywhere. 

The caretaker bee was not in any way hurting the other bee.  The caretaker bee was literally taking it's antennae and touching the other bee in multiple places, as if to comfort it.  This went on for over an hour.

As I sat there, mesmerized by this activity, I started to think about what motivates a bee to do this. Why would a bee spend so much time taking care of another bee, who was obviously either dead or almost dead. I thought about love and how we, as humans, need love to thrive and to "be" and without love we could literally die of deep depression or other ailments.

I thought about how nature instills this loving instinct in all of us and why does this survival mechanism get bogged down and altered in humans.  

Well during this time I went back inside to call my dear Aunt who is having a minor surgery tomorrow,  to wish her well.  I went back outside when our conversation ended, and the caretaker bee was gone.  All that was left was the tiny body of the other bee, lying there still and in peace.  The space suddenly felt empty, and a feeling of loneliness swept over me.

So I stood there, quiet for a moment, and then moved the bee to the soil. I felt compelled to honor this little creature so I placed a few tiny rocks around it's body.  

At the seminar this past Friday, I felt lots of love in the room.  It was a course for ovarian cancer survivors, sponsored by the Foundation for Women's Cancer:

What I really learned at the seminar is that we all need to care for each other, care about each other, and pray for one another.  It is in this that we heal.

May you rest in peace little bee friend.  Thank you for reminding me of what love means, for without it, there's nothing.  To my readers, love your neighbors as you love yourself.  

Peace and Blessings to you.

Wednesday, May 18, 2011

Joy comes from all kinds of places

My JOYS for today:

1.  Playing a new game with Addie, she always wins no matter what.  I want to be a kid again, don't you?
2.  Just seeing my sister, gives me relief.  She came by with Addie Her daughter) today for a short visit, and it was just blissful.  Don't ask me what frog juice is, but I can tell you finding it is fun. I am thankful that she has a beautiful life with Patrick and the girls, it makes me feel secure.
3.  Seeing mom's huge smile when they were here just spontaneously having fun.
4.  Remembering the smile on my mom's face when my brother called Sunday morning.  And then I think about his beautiful children and I can't stop smiling.
5.  Remembering the smile on my mom's face when she talked with her brother today.  His son got a job in the airline industry, yay for him.
6.  Weeding (thank goodness the soil is really damp).  It brings you literally down to earth, you forget problems and enjoy the sun, the dirt, the green, and just working the soil.  I'll pay for it tomorrow for sure.
7.  Remembering being at karate last week with Mandy and the girls, what fun.
8.  Remembering going to Tammy's wedding two years ago, (almost) and now she's about ready to have her baby.
9.  Remembering the smile on my mom's face and the huge roar of laughter each time she talks with her sister Deb, it's fun to listen, mom has a great laugh.
10. Remembering the surprise and joy mom felt when she got a little blankie from her other sister Bern.
11.Remembering the soft little kiss from "J".  Now what am I going to do?  
12.  The most joy was the elated feeling I get from going to church, spending special time with God, praying for my family, medical team, friends, ovca sisters and the homeless. Knowing dad's OK.  Thank you God for all your help this week.

Peace, Blessings and all my Love to you

Monday, May 16, 2011

A tiny break with tiny rabbits

My very talented sister has been creating tiny rabbits for all to enjoy.  Thought you might enjoy a break from cancerland.

Seeing "J" tomorrow, he's hinting about a kiss.  Wooooooooooooooooooooooooooooo?


Tuesday, May 10, 2011

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.


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

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.


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