CDC Symptom Diary Card

Saturday, August 13, 2011

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


Monday, August 08, 2011

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


Sunday, July 31, 2011

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

Sunday, July 24, 2011

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

Sunday, July 17, 2011

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.

Saturday, July 09, 2011

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

Saturday, July 02, 2011

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!

Sunday, June 26, 2011

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.  

Friday, June 17, 2011

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


Tuesday, June 14, 2011

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

Friday, June 10, 2011

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!!!!!!!!!!!!

Monday, June 06, 2011

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

Saturday, June 04, 2011

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.