Guest post from David Haas

Hello friends, I have posted an article by David Haas on the benefits of exercise when you have cancer.  I can fully appreciate the importance.  Before cancer I was walking two miles a day.  Chemo steals your soul, but only for a little while.  As the chemo fades, the ability to do more increases over time.  Thank you David for your well written article. 
Peace and blessings, Denise

Cancer Patients Can Benefit From Exercise

It is a great accomplishment to survive cancer and the main priority for most cancer survivors is to keep the cancer from returning. Current research points to the fact that exercise can benefit cancer patients.

If you have traveled down the long road of cancer treatments for any type of cancer including but not limited to colon cancer, breast cancer, or even a rare and aggressive disease like mesothelioma, or any other type of cancer, you are probably searching for ways that can help you stay healthy. Exercise for cancer patients has been shown by research to help cancer patients create a longer life expectancy when there is a grim prognosis, and even helps the body fight the chance of recurrence if they have already pushed the disease away. In several different studies, it has been proven that being unfit and lethargic after completing treatment was linked to a higher risk of the cancer returning and a shorter survival time.

The benefits of exercise are highly stressed for the normal population, but it is not as well known that cancer survivors can experience many of the same benefits. The benefits towards one’s body include less weight gain, leaner body mass, and greater muscle strength, but the real benefits have to do with the regained energy one receives and lower stress levels they have. Whether one is going through treatment or recently completed it Physical fitness can help gain these energy levels back that are usually sucked out of the body from the treatments.

The research has shown that people who have been diagnosed with cancer tend to slow down. This is attributed to depression, stress, and feeling fatigued from cancer and the treatments. It is extremely understandable to be having these feelings but it is counterproductive to not take a stand against them. It is recommended that cancer patients start exercising as soon as possible after their diagnosis and treatment. In other words, if you have slowed your physical activity after your cancer diagnosis, now is the time to rev your engine.

According to the National Cancer Institute, the American Cancer Society recommends 30 to 60 minutes of exercise five times a week to receive the maximum benefits for reducing your risk of reoccurrence and raising your chances to beat this disease.  The types of exercise recommended are flexibility exercises to keep you mobile, aerobic exercises for cardiovascular health, and resistance training to build muscle.  Everyone is at different levels of exercise and if you are at a low level to start just taking a walk can go a long way to relieve some of the stress involved with this awful disease.

By: David Haas

Teal is on the horizon, wear teal on Sept 2, 2011

http://www.unitedstatesofteal.org/take-action/

Time	Friday, September 2 · 12:00am - 11:30pm
Location	Across the United States
Created By	Ovarian Cancer National Alliance
More Info	Teal is the color of ovarian cancer awareness. On the first Friday in September, our national ovarian cancer awareness month, we urge everyone who cares about this disease to wear teal--and tell others why you are dressed in this color. This year, we're adding a social media component to Wear Teal Day. Please post photos of yourself decked out in teal on Facebook, and tag the Ovarian Cancer National Alliance. We want to create an album of women and men in teal from coast to coast.

chemo brain creates headache at work

As you may know, I have memory problems and get rattled with too much info too fast.  I have a job that does not provide me printed references because I work in a completely virtual world.  I am working with the assistance of DVR and a community neuro rehab therapist to help me retain my job and assist with accommodation requests.

My employer is aware that I have some cognitive challenges.  Well, I made a mistke tonight, didn't realize the gravity of the mistake and that it was such a big mistake. I am so upset.  I just can't remember everything and they don't give me enough time to re-read policies.  I hate this, I hate this, I hate this.

For $12 per hour. 

It's a golden job opportunity with a great company, but I can't do well because I can't keep up with all the restrictions and limits associated with not being allowed to have printed material in my work from 

home setting.

Just feeling zinged.  I am trying so so hard to be a good employee.  I feel demeaned and stupid.

How can anyone memorize hundreds of pages of policies?  And I can't navigate the computer quickly enough on my small screen.  I am requesting a larger monitor so I can have multiple windows open, so that I can keep the policy references up and ready to access.  Seems logical right?

Just frustrated.  I still have a 7mm stable tumor on my liver.  Great to think I'll spend the rest of my life in low paying jobs constantly getting in trouble because I have a bad memory.  Fine.

Sorry, all I can think about is that I'm going to get fired now.

Great, just what I need.

Love All Life

Yesterday I was showered with grief over a crow that was dying in the street.  I was on my way to the pain clinic when I noticed a crowd of crows squawking and flapping their wings.  Inside this circle of black birds was a suffering, bleeding crow, flapping around, moaning with agony.  I pulled over, grabbed a towel from my trunk and gently scooped up the poor little soul to carefully rest him on the grass.  I said a little prayer and started to cry.

I looked into it's eyes and I could see it begging me to help him, and I could do nothing. He was almost gone. The other birds all gathered up along the telephone wire, continued their songs of fear and desperation, to help their friend.  It appeared that a car may have clipped this little guys wings, and rendered it to pass along with God.  I don't know.  It was just overwhelming.  

I suppose I should have called someone to take the bird away, but really I was too upset to do anything other than ponder how quickly life changes, zap, in an instant it's gone.

Like the poor people at the Sugarland concert in Indiana, suddenly, no warning, they passed to a new level of existence.  Just so tragic.

On the opposite end of the spectrum, my new job is to assist people with their emotions related to upsets over "stuff" missing, late, lost, etc.  Help them solve the problem  so they can do the important things in life.  I am so appreciative of my job, I just don't understand though why people put so much stock in stuff.

Why get so upset over stuff?  It's stuff.  It's not alive, it has no soul. Save your anger to defend the homeless man who is beaten to death.  Save your frustration to fight hunger.  Save your angst to give energy to help your neighbor.  Just a thought.

Below are a few articles on some new and non-traditional medical interventions to treat cancer.  

The article about a chemo bath is quite intriguing, and I wish I'd received a chemo bath when I was receiving my debulking surgery.  I remember distinctly speaking with a dear friend about this very thing, not knowing that the treatment was being studied. I said "why didn't they just spray a bunch of chemo inside my abdominal cavity while I was in surgery"?  I mean, seriously!

I was already going to be in severe pain. Oh well.  It just goes to show you how important it is for us patients to do research before surgery, if at all possible.  Patient be aware!  

http://www.10news.com/news/28853209/detail.html

http://edmonton.ctv.ca/servlet/an/local/CTVNews/20110817/EDM_cancer_110817/20110817/?hub=EdmontonHome

I know my post is kind of all over the place, but I had to talk about the poor little crow.  When you look deeply into any animals eyes, you see "them" their spirit.  Love all life!

Peace and Blessings

Denise

30 Years Ago: The Day the Middle Class Died | Common Dreams

30 Years Ago: The Day the Middle Class Died | Common Dreams

Take your life back. If the healthcare reform platform fails, we all will greatly suffer. Think seriously about this. I saw on CNN today that there has been a 70% increase in food stamps in the past 7-8 years!!!! Our country is not going to get better if hardcore republicans take back the White House. They want to take away the last remnants of any programs and policies that help the average person live a happy and plentiful life, meaning, the basics.

For those of us who have or are currently facing cancer treatment and/or managing side effects of our surgeries and treatments, disaster looms.

Every person deserves to live a decent life, around the world. We are going backwards!

Please think about this when you start to ponder your election choices. I am defending the President, and will vote to keep him in office. He needs to retain his leadership position, to remain an advocate who understands that we all deserve equal access to healthcare that is affordable.

I know the healthcare reform legislation is not perfect, but it is a starting point. Personally I would have preferred a single payer system, nationally available to all people who live in the United States. I just don't believe in "for profit" health care, but that's just me.

Protect your right to healthcare. Protect the rights of your children, their children, their children's children.

The Uber-wealthy can contribute more, and they should. N'uff said.

Peace

Update post chemoville

This is me before chemo in October 2009. Since then I've been bald and have grown

 super curly grey locks.  To color or not to color......still deciding.

I am finally scheduled to meet with the pain clinic next week to help me manage the never ending abdominal pain.  This pain has become much more evident as I've started working from home.  It hurts to force sitting for extended periods. I don't have as much flexibility with my WFH job as I'd hoped, and will just have to do the best I can.  I have a golden opportunity if I can just hang on and keep up with the rest of the group.

The good news is that I may get some help paying for some ergo designed keyboard, monitor and may set up space so that I can stand and work when needed.  

We'll see, so much effort to earn less than I earned in 2006.  Oh well, what can I do, I'm so lucky to have this new job.  Have to do what it takes.  I just hope I remember things....yikes!

It hurts to sit for a long time and wear a bra or anything crossing across my waist.  I find myself wearing little sundresses a lot, thank goodness it's warm.  But this cannot continue.  There's no way I could show up for an office meeting in a moo moo, or whatever.

I'm just so tired, catching  up on paperwork and calls to doctors that I missed over the past three weeks.  I need to reschedule a mammogram for my BRCA1 mut+ follow up.  And, my mom has been warrior woman battling the woes of dialysis.  Any advice???

Last week my sister took her, this week I take her.  It's like a part time job for mom and very stressful, long days.  Somehow I believe God will give us all the strength to get through.  She has been through the wringer.

Now that I have a part time job, I can focus on increasing my life's stability, and be more valuable to others.

Cancer greatly reduced my "market value' in terms of being a regular employee, but it has increased my community value, which is where I need to focus my energy. My priest even told me to use my cancer to help others with cancer. I must stay on this track, that is where I provide the best value.

Once I'm a little more stable, I'd like to create a non-profit that fills a niche area of need within the ovarian cancer community.  I know I can be successful, once I determine the needs and my best skills and resources.  Now is the time, now is the moment.

Pressure is on to move into my own residence, which I hope works out to be sustainable.  After 9 months of trial work period, I will probably stop receiving my benefits, and I'll be back to square one in terms of low income again.  So I'll need to plan a way to prevent problems there.....so much to consider.

My job is time-intensive, lots of pressure. It's like running everywhere, never walking.  I'm not sure I can hold up.........Lord help me stay afloat and not get demerits..........please. Seriously, I hope I make it.

I don't know what is going to happen in the near future, so my goal is just to keep my job, help my mom, be there for God and family, go on a few dates with "J" and stay positive.

I am so lucky to be breathing........Thank you God.

Peace and Blessings to all

training day gone bad

I am finally able to take a few minutes to say hello to everyone and provide an update on venturing back into the work world.  I'm exhausted and feeling pressure from everywhere.  I had no idea that working with my new employer would be so hard.  I applied for a work from home customer service job.

Imagine standing in a swamp and just off into the distance is a heavenly garden, with little bunnies and deer, puppies, kitties and children laughing and playing.  Everyone and all things are beautiful and peaceful, happy.  But  you are standing in a swampland and the only way to get there is venture through the gators and cling to vines.

If I am able to survive training and keep this job with all it's restrictions, I will have a golden job.  My actual job is only part time, but the training has been full time and it's been very intense.

I woke up on Saturday morning and my knuckles on my right hand were all swollen from all the typing, which  I hope will  NOT be the case if I get a modified keyboard, and will be on part time hours.

I can't remember all the stuff I need to for training and need more time.  I may have a hard time keeping up with their attendance requirements because of my disability.  It's so so so strict, and for them, there is a good reason, it just sucks for me.  All I can do is ask for accommodations and hope they accept.

My gut says this company loves it's employees.  I just have to keep the faith that I am here for a reason and that whatever happens is intended to happen, even if the result is job loss and looking for new work.

I just had no idea what I was walking in to.  I thought it was going to be easy going.  Boy was I wrong.  I just wish I'd have know about all these restrictions before I applied, I would have probably never applied.

So I am going to continue to give it all I can.  I remember when I was in college and I was learning neuro-anatomy, that was easier than this new learning.  I have never worked for a company that did not provide written training, ever in my life.  I hope I make it and I don't drown.

On another note, my mom has started hemo-dialysis.  Her life is upside down and she needs prayers.  Thank you for all your thoughts and prayers for her.  I love her so much!

Peace,

Denise

Disclosure of a Dsability

As many of you know, I have been fiercely seeking a job, no easy task in this economy, add cancer and rheumatoid arthritis, a two year gap in the resume, and well................I was surprised and am excited to say that I have found a part-time job.  Yay.

I do not plan to ever name my employer, for obvious reasons.  I love the company and hope everything works great.  I get to work from home, which is needed.  Our training is full time and on the first day of training I was sent to the ER from the office because I got dehydrated, sicker than ever.  Not a good way to start off a new job.

I'm having some challenges keeping up with the training, and hope some requests made for easy accommodations work.

I hope that the company uses me to better their ability to hire others with disabilities, and let me be a positive resource.

I'm really tired, just wanted to share the good news.  I pray I am able to keep it.

Peace,

Denise

He invites, it's up to us to respond

I met with my priest yesterday to talk about my shortcomings and how I feel that I am failing God.  I won't give details, except my worries were about my pains and my new boyfriend.  I had promised God that I would serve him in whatever capacity presented of His choosing, because He has left me here for a bit longer.

I was blessed in so many ways with great cancer care day of diagnosis and chemo.  My follow-up is wonderful and I have confidence in my medical team. My family is the ultimate blessing, in ways that cannot be measured. My sister and mom have made ongoing sacrifices, an aunt lends a tender ear.  My brother there to step in on a moment's notice.  My uncle, aunt and cousin calling every week while in chemo.  My dad calling every week. And countless other family and friends.  I feel undeserving.  All Catholics understand this. Yesterday I received a new perspective, the gift of a new light to shine on my life. Taking away that ongoing guilt that hangs and lingers.

It has been presented before by another friend blogger of mine, and here is what the Father said to me.  Cancer being brought by our Lord is a gift.  Not as in "oh lucky me, look what I have".  It is a gift that should be shared with others, to help others with the same fear find comfort in my strength and healing.  And to share how my faith in God, relentless prayer and constant search for His presence kept me always hoping and believing that I would be alright.  He suggested that I become even more active in helping others with cancer.  I have always felt this to be my calling, but exactly how remains the question.

I currently help women who are members of an online ovarian cancer community, but know I can do more.

Now that God has blessed me with a part-time job (not official until the paperwork is signed), I will have the ability to base my energies around that focal point, church and my dear mom. (Mom starting dialysis and it's been an awful struggle, sigh.  Please send prayers).

I believe that once the job training is complete and I have a sort of "routine", I can create more energy to be on God's purpose line.  I have creative ideas, and plan that this will be valuable and beneficial for women with ovarian cancer.  

So we are all invited to join with God, respond to His call and make a better world, but not all do.  I am not to judge who does and does not, for judgement is up to God.  We are all mere mortals doing the best we can, but if we reach out to God and ask for help, we can get what we need.  Sometimes what we need is not what we want or think we want....................always a frustration.

Please have faith.  Trust in God.  I do.  I love my family and friends so much.  Please pray for mom that her doctors guide her intelligently, treat her with great care and that she begins to heal and feel better as she travels the road of dialysis.

Peace and Blessings to you all.

More on brain drain

I can't disclose the source of results for further cognitive testing, but I do have some real problems with my memory.  I had another battery of tests a few weeks ago, and the results are interesting to me.  It's very difficult to explain the gravity of the consequences of this "chemo brain" stuff, but let's just say that I have a whole new appreciation for what once was my persona.

The tests showed that I have fairly good concentration now, but new information kind of disappears into nowhere land.  Not ALL new information of course, but generally new information is hard to recall.  So important events, appointments, recalling things I did last week or even a few days ago, just kind of get all gelled together or lost.

I have started keeping a journal of what I do each day, in terms of activity.  Except I forgot to write in it for the last two days...............HA!

The other thing is that I do have trouble verbalizing my thoughts sometimes, can't generate the "right" word when I'm talking with someone.  It takes me more time to process information, and I can see that for other people this is frustrating.  Sometimes I stutter.  I never stuttered before cancer.

I have had emotional upsets and conflicts with other people at times because I've said the wrong thing, or used poor judgement in a social situation.  I'm poorly understood.  I feel like hiding now, but I won't.  I can't do anything right and still feel like a failure sometimes.

But I am much more hopeful than ever before......I just have to keep on moving, keep going forward.  We all do, for what choice do we have.  Yesterday is gone.

These refined results are good for me to know because I can do more specific things to compensate for my problems.  I get overwhelmed with too many things to do at once..........................blah.

Like today I have a pile of folders that contain "to do" and "job search" etc.  The process of looking for a job, keeping track of my applications, resume submissions, follow-up letters, doing Excel training, looking online for jobs, etc is just a LOT.  I'm finding it takes FOREVER to look around on the net, create my little tickler system, respond to questions etc.  Wow, I can't wait til I actually find work.

I have had four requests for interviews!  Yay.  I don't want to jinx anything, but I'm praying one turns out to be a winner.  I will feel blessed with whatever comes my way.

I have decided to fully disclose my cancer and rheumatoid arthritis to all potential employers.  I have no other way to explain the gap in my resume and my scattered work history.  I'm tired of hiding my disability.

I want to work for someone who actually accepts me in total, no resentment. 

Some of the inquiries are with companies that allow people to work from home.  Fantastic!!!!

I just hope I'l be able to keep up.  I am going on an interview next week for a full time job, in the hopes that maybe they would consider part time.  Not likely, but the job itself would be rewarding. 

One of the other options requires 40 hours week of training for three weeks, for a part time job.   I would really love that job too..............but I am worried that I won't handle the training well.  I mean, that will be really difficult for me to do.  Ugh.....but I have to do it.  I need to push through.

Mom starts dialysis next week, and we have training classes.  I pray deeply that her energy improves with dialysis.  We are going to have some fun tonight, to get her mind off the upcoming change in her life.  This is a big deal, a complete change in lifestyle...........please keep her in your prayers.

My sister has a birthday tomorrow!!!!!!!!!!!!  Yay.  Happy birthday Mandy.  I love you.

Peace and Blessings

Birthdayversary

At the end of July it will be two years since diagnosis.  In March 2012 it will be two years since treatment completion.  Milestones in terms of recovery.

Today, July 2, 2011, is my birthday.  This is the first birthday in Seattle that I felt totally engaged in and part of the celebration.  I know that sounds untrue, but it is totally honest.  I have so much more energy than last year and my body is recovering.  I've decided that the remaining pains and problems will probably be life-long.  For to have a life that is long with this pain is my blessing.......

I had the best time with my MOM, Sister, her husband and their two lovely girls.  We went to a Greek restaurant in Phinney Ridge called Yanni's.  It was delightful.  they cook all meals made to order, fresh food and comfortable, friendly atmosphere.  Beautiful venue, soft blues, nice artwork, clean, Greek music in the background.  I definitely want to go back.

The best part was that everyone enjoyed their meals, laughed and seemed to have a good time.  

The sun was so bright today, it was nice for a change not to worry about a coat. 

 Everything just came together,

My brother called me, my dad, my aunt and uncle, an old boyfriend sent flowers ( don't tell "J")...just kidding.  He is a friend and lives on the other side of the country.

Speaking of "J", things seem to be going well.  We walked around a green lake last week in the evening and had a late bite. Casual but so much fun.  He's so sweet.  Sigh....

My labs are good, 9 of 35 for the CA125.  I have some twinges in lower pelvis and that pesky ongoing abdominal pain that has taken up residence since surgery.  I was told that in that area are surgical clips.  Supposedly surgical clips can become surrounded with scar tissue, and get "inflamed".  Great....sigh  

So my pain is an ongoing issue, plus I get nausea with every single hot flash.........drag to the max.

I have a CT scan next week to rule out recurrence.  If nothing shows, they may refer me for an endoscopy.  I hope we have more conversations as to how to manage the clips.

I don't thing the clips can be removed as they were inserted to block the ovarian arteries. Now that I have no ovaries, there's no need for their blood supply.  But it makes complete sense that these darn clips are causing me pain.  Not sure if anything could ever be done about that........the battle continues always.

Ha...wanna hear a funny.  I got rejected to work in a call center.  How pathetic is that.  I guess I'm not quite the shark they need. Probably all for the better, I'd pry end up hating it, too much stress and rejection.

So the job hunt continues...........................................

I'll send an update on the CT scan.  The main energies in our family are directed to supporting my dear mom right now.  She has surgery in a few weeks and will start dialysis.  It's scary for me, not sure about anyone else.  I want her to do well and pray that she adapts easily to the treatments.  Most of all I pray she feels better and regains her sense of "life" and vigor.  I love you mom!!!!!

Peace and Blessings to all.  Thanks for stopping by!

My dream

I had a really interesting dream last night.  I dreamed about my amazing surgeon, my amazing gynoc, my family and other people I don't know.  It was a celebration, my party, that I no longer had cancer.  

It was fantastic.

Imagine an old french cottage, but it's the size of a huge warehouse.  The cottage house was nestled up in some mountain range and I was frantically trying to prepare food for my guests.  I knew they were coming over to celebrate my recovery, but I had no food to serve.  This was causing quite a panic.

All I had were partial jars of spaghetti sauce (which I rarely buy) and a fondue pot.  I was so stressed because I had all these people over and nothing to serve. Anyway, the place was crowded, laughter all around, everyone was having fun!  My beautiful sister was entertaining everyone with her artwork and she had even designed a fantastic set design for U2.  She had mocked up a miniature set backdrop and was going to enter it into a contest.  Everyone was proud of her work.

My cousin and loving aunt were with me in the kitchen helping with food, the rest of the family and friends were in the living area.  Suddenly my surgeon came in and gave me a big hug and off in the background my gynoc waved at me and gave me a big smile.

My surgeon was wearing a huge fur coat and looked like he was off to go skiing in the alps, funny.  He looked deep into my eyes and said I was going to be OK.  (I can still feel his hug)  It was a great dream.

I see my gynoc's nurse practitioner tomorrow, for a follow up, get a CA125 and physical exam.  I hope my dream is a reality and that things stay good.  I'll let ya know.  Have a great Sunday.

Peace, love and blessings.  

Thank You Cancer Lifeline

I wanted to take some time to thank Cancer Lifeline today.  I have been graced with their help in several ways, and if you are looking for a serious place to donate money, think of Cancer Lifeline.

For the past several months, I have been able to receive free dental care, and let me tell you, that has been a huge savings for me.  Chemotherapy can do a number on your teeth, and through Cancer Lifeline, amazing dentists and dental assistants volunteer their time to help cancer patients maintain healthy teeth.  At the risk of getting too personal, I was unable to tend to my teeth while on chemo and for a while after chemo.  

Several months ago I was referred to their services by a team member of the Survivor program at the SCCA.  The SCCA takes very good care to help patients with aftercare, and the dental referral was part of that ongoing maintenance.  Wow, I couldn't be happier.

The other blessing offered to me has been a recent series of phone calls from a Cancer Lifeline volunteer.  I have the opportunity to talk about my feelings and figure out healthy ways to resolve emotions related to my cancer.  It has really helped me a lot, especially in the past few weeks.  

Cancer is complicated, everyone has their own view on cancer, it's process and an individual's future.  We all want for nothing but great results to come from surgery and treatments, and hopefully that IS the case.  Getting through the process of diagnosis, treatment and recovery comes with all kinds of issues, good and bad.  Cancer Lifeline offers just that, a lifeline.  Check them out and see for yourself.  Maybe you are a cancer patient in the area or a caregiver in need of a little support.  Peace, Love and Blessings

http://www.cancerlifeline.org/

Ovarian Cancer literally bullies it's way around

http://edmonton.ctv.ca/servlet/an/local/CTVNews/20110614/ovarian-cancer-cells-invasion-mechanics-study-110614/20110614/?hub=EdmontonHome

This article and accompanying video is fascinating, scary, potentially a breakthrough in finding the right way to handle ovarian cancer.

Prescription Drug Program

Prescription Drug Program

If you live in Washington, you can get a discount on medications through the Washington Prescription Drug Program. I received this information from helpful people at the Department of Vocational Rehabilitation.

I have not used it yet, but I researched one of my medications and there was a very substantial savings. I spent $131 on a new medication this weekend, ouch! I had to put it on a credit card. I have been stressed out because the monthly cost will be $200, and it's a very important prescription.

 I WAS DEBATING TO DISCONTINUE THE MED......

When I asked DVR for help, they e-mailed me this resource. It's free and worth a look.

I literally do not have the money for my latest med, so this is so helpful. I'm still waiting on a decision from SSDI to get my payments up to what should be allowed, sigh.

I like this because it's a good example of how asking for help can be a good thing.

I don't always ask for help in the right way, or I ask the wrong people, or whatever. Hopefully this will help some of you. If you don't live in Washington, I hope that your state has a similar program.

Peace and Blessings,

Denise

Boot Scootin' along

A sprained ankle!  Welcome to the real world.  I fell off a curb the other night, and this is my reward.  I've never had a sprained ankle in my life, and now I get one....HA.  The curb was only a few inches high, but it was covered with leaves and little branches etc.  I had no clue that a curb even existed until I found myself tumbling to the ground, of course in S-L-O-W motion.  I could walk on it but it hurt.  "J' was walking with me and he was so sweet, he said he wished he'd held onto me.  We had been holding hands, but had let go right before I fell............sigh.

At 3am I found myself crawling across the floor to get some ice because I couldn't walk on my right leg.  The  next morning I was still crawling around because I couldn't put any weight on my foot at all.  My insurance company told me that they preferred I go to my PCP instead of ER.........so mom and I took a cab ride to the PCP.  They did Xray and found no fractures, thank God.

The thing is that it was great to have mom there with me, I really needed help.  AND it was sort of a refreshing change of pace to see a doctor for something normal.  No major episodes of anything tragic or cancer related, just a sprained ankle. Not that I'm happy to have a sprained ankle, but it was just nice to have something simple for a change.  

The doctor, the nurses, the techs were all so so nice.  Wow, that was great!!!!

Plus, we are changing my antidepressant now....yay.  Going to ween off of Paxil and start Effexor.  Hoping that this change will decrease my drowsiness and help me to get up earlier in the day.  Really need to be able to function on 8 hours of sleep versus 12.  Getting back into a normal life will demand that.

Thank you to my friends and previous co-workers who have given me permission to have future employers contact them for references!!!!  Really need THAT.

Please follow my sister on her Weathered Silo Blog, just to the left here of my blog.  http://www.weatheredsilo.blogspot.com/

I have seen her beautiful paintings and they took my breath away.  She really is talented.  I can't wait for her to start selling her work.  

My brother was chosen to coach a hockey team and they will be travelling out of state to compete in some championship competitions.  Yay for him.

My cousin Tammy is having her baby shower this weekend...yay.  My aunt and uncle are so excited!!!!

And my mom is having a good day today....yay.

Love you all!!!!!!!!!!!!

Sufferers of ovarian cancer get new hope - Chronicle News - News from @EveningChron

Sufferers of ovarian cancer get new hope - Chronicle News - News from @EveningChron

Some of you may find this really helpful to your cancer care. Peace and Blessings to you all!

Nightmares and job hunting

My mood is edgy, angry a bit, overwhelmed and begging for an answer to my "why".  I met with my vocational developer today to start the process of actually applying for new jobs.  It was as if nothing I'd said before about my needs, wishes, accommodations and preferences was heard.  I know it was, it's just that the reality of job hunting is not soaking in like a smooth bubbly bath, more like a how a hard wave of water slaps you in the face, ouch.

Speaking of water, before I get into the hurdles for today, I have to tell you about ongoing dreams that I've been having lately.  For the past few nights I have been dreaming that I am staying at this luxury hotel, sounds great right, except that everything that happens is weird and spooky.

Last night I jumped into the deep end of the spa pool feet first, and never touched bottom.  I remember feeling the rush of water sweeping upward along my body, desperately searching for the edge, to stop or spring up.  I can't remember how I surfaced, but I eventually did.  I thought I was going to drown. Then I was in a getaway car and one of my little nieces was in the driver seat.  She was laughing and having a ball driving this huge car, and I was hiding from an ex-boyfriend.  Then suddenly my sister and her husband lived in the luxurious hotel, and I was shown into the massive kitchen.  

The kitchen was made of all 1" square old fashioned blue tiles, everything was the same color, including the food and sink.  Then her husband offered me some licorice covered with frosting. My sister welcomed me for a tour, but I woke up before it started.

I have no clue what any of this means.

Some of you may know that I am one of many women who were misdiagnosed and because of stupid doctors in California, I was diagnosed with an advanced stage of ovarian cancer.  Being forever grateful to God for my excellent surgery and chemo, I am lucky to be alive.  

To get to the point of today, I'm lucky to be alive, but feel like I have no control over what is left of my future.  I am doing OK with cancer so far, NED.  

If I want to be able to live independently, I'll need more income.  If I want to enjoy life and take a trip, I'll need more money.  If I want to give at Christmas, I'll need more money.  You see where I'm going here.

Today, my job developer pulled several possible job opportunities that she thought would suit me.  All of them are too far away, some only paid $10, most have expectations I cannot do or require skills I don't have.  Her approach is more like tossing a bunch of spaghetti on the wall and seeing what sticks.  My approach is to be laser focused so I'm not running around with my head cut off.

She is right, I just need to get out there and apply.  She guaranteed me that she will be my advocate and help me with accommodation requests etc, AND she can help communicate with the human resources department once I've submitted an application to help move the process along.

I am very lucky to have this kind of support,  I have fought very very hard to receive it.

My question is this:  Why is someone who has a high risk of recurrence being forced to go back to work?  Why can't I just ask the lousy gynecologist who ignored my symptoms, and didn't do a bi-manual pelvic exam, to give me money to live on so I can be happy?  Oh I forgot, he isn't held accountable for ruining my life.  (At least that's how I feel at this second........)

How do cancer survivors travel the world?  I'll never see that day.

My job developer is trying to understand, she knows I just want a job where I come home and feel good about what I did at the end of the day.  I don't want it to be more than 15 minute commute, because it's only part time.  I get tired, I get exhausted.  I don't want a long commute for a part time job, unless it pays really really well.  I'd love to work for an organization that helps people with cancer.

Hence, why am I being treated like I'm asking for the world when I say I want to to work from home, no sales.  Is that too much to ask?  PLUS, a job working from home allows me to work while on treatment if I have a recurrence, so that I can keep money coming in.  Geeze.

I hate this, competing with able bodied people who can burn the midnight oil.  I can't.......never could.

I don't deserve this ongoing heartache. I'm physically and emotionally spent when it comes to jobs and job hunting.  I don't want to play games, I just want to do worthwhile work and in the process of doing so, do that work in such a way that it doesn't kill me by stressing me out or exhausting the heck out of me.  Again, I ask too much.

Ever since I lost my career in the mid 1990's I have been struggling so badly and when I got cancer I had a good job with benefits, and had to move to Seattle.  I had no choices here.  For most of those other years I rented rooms in people's homes because I couldn't afford my own apartment, California is expensive.  I lived like a gypsy.  I don't want to be a gypsy any more.  

I am starting over again and hating it.  But I will pull through somehow, with the Grace of God.  Life could be worse, so I know I'm much better off than a lot of other people.  I do know that.....I just want a break.

Peace

The FUTURE OF SURVEILLANCE?

Medical News: Group Issues Gyn Cancer Follow-Up Guidance - in OB/Gyn, General OB/GYN from MedPage Today

I pray that women with gynecological cancers will be able to continue to receive their cancer surveillance services from gynecological oncologists. If the information in the article comes to fruition, your primary care doctor, the one who missed your cancer in the first place, will be responsible for monitoring for possible recurrence in the future.

What What What What What

How tragic ......

I don't know how to stop this ball from rolling but we all must pay attention to this possible trend.

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.  

ALL WE ARE ASKING DOCTORS TO DO IS TO REMEMBER OVARIAN CANCER.  THAT'S NOT TOO MUCH TO ASK IS IT????

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. 

http://www.drozfans.com/dr-ozs-advice/dr-oz-ovarian-cancer-symptoms-warning-signs/

Please......

REMEMBER OVARIAN CANCER

Peace and Blessings

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.

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 no...is 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:

http://www.foundationforwomenscancer.org/

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.

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

How heat helps kill cancer - The Scientist - Magazine of the Life Sciences

How heat helps kill cancer - The Scientist - Magazine of the Life Sciences

Maybe there are some positive benefits to having hot flashes after all!

A tiny break with tiny rabbits

http://weatheredsilo.blogspot.com/

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?

Peace,

Denise

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