CDC Symptom Diary Card

Tuesday, October 29, 2013

It's Always Nap Time: Cancer Related Fatigue

The days pass by in a blur for me.  I am on avastin every three weeks, sleep excessively and am in more pain in my joints now.  The fatigue is what seems to now be causing me the most trouble functioning on a day to day basis.  It is ALL worth it though to keep my ovarian cancer under control.

I am officially "unreliable" if any plan is made that requires my presence before noon.  I have actually missed several doctor appointments, missed following through to go with mom here and there.  Spent much of my sping trip to Colorado sleeping.   I find myself sitting and closing my eyes, no matter how many hours I sleep.

To make matters worse, my schedule is way off whack.  If I lived on the East coast, I would be praised as an early riser.  If I lived in Hawaii my timing would be perfect to arise around 9 am.  Alas, I live in Seattle, the gloomy days are closely falling upon us, and I awake any time between 11 am and 2 pm.

Because my clock is off, I have a hard time falling asleep before 2 am, I work part time hours into the late evening and just cannot unwind fast enough.  I need 12 or more hours of sleep per day and usually sleep through most of Sunday.

My trusted mental health professional and I are working on implementing resources to increase my energy, improve my sleep and cope with the heavy stresses in my life.  I can't talk about it all, but somewhere along the line I made it a mission to do all I can to help others live a happy life.  Nobody should leave this earth sad or deprived.  If there is even a tiny thing I can do, I want to do it.  I am however learning that my good intentions may be applied in the wrong places and at the wrong times.
In treatment we are now using the terminology "cancer related fatigue".  This is another one of those things that most people believe goes away about 6 months after treatment stops.  Not always true.  People heal at their own pace and sometimes this healing time does not match the reality of day to day demands.  Getting emotional support during these times is critically needed to find bridges and resources to fill in the gaps

In 2009, starting  my first chemotherapy round with multiple toxic agents (carboplatin, taxol and cisplatin) I totally tanked and was in a deep brain fog, was lost and scared all the time.  I had a very high level of anxiety, and multiple physical issues of abdominal pain, nausea, hot flashes, shortness of breath etc, that added to the fatigue from being poisoned and having cancer.

I regained some strength during my period of NED, but retained severe abdominal pain, severe sweating, nausea and fatigue.  My overall cognition has improved.  Eventually it came to be that I have some sort of panic disorder and the medications I take have helped with that, thankfully.

Being back on chemotherapy now for almost two years for my recurrence has compounded the fatigue. I have been counselled with great compassion that many women live long lives on chemotherapy.  I feel alright with that now.  I did not think I would, but as long as I can tolerate the side effects, I am all in.

During the second time around, with carboplatin desensitization we were able basically keep more tumors from developing, but the existing tumors were still growing.  I think there are around 8, very small, but there nontheless.  With Doxil we were able to stabilize the growth.  I was on Doxil for approximately a year.  Now on Avastin, we are hoping to shrink the tumors by cutting off the blood supply that feeds them.

I am seeing some improvement in my CA125, but am not counting too much on the number, just paying attention to the trend. 

I have treatment tomorrow, and next month I am due for another CT.  

We have a lot going on in our family, just like every other family that is not independently wealthy.  Little time is taken to cross things off the bucket list, so to speak.  We are getting there.  I think all of us could use a real vacation!

To be honest, I have no bucket list yet.  There are things I want to do, but my focus is family and maintaining self sustainability for as long as possible.

The one constant in my life is daily prayer.  When I awake and when I get into bed, I pray.  I thank God for each new breath and pray that others ask for Him to help them. 

Please click on the link below for some information about cancer fatigue.

Love to you and yours,

Thursday, October 17, 2013

TED Talks Brave Neuro World

I found this series on "TED Talks" this evening.  I was looking for something interesting, not related to politics or our healthcare system.  Our government is now back in business and the Affordable Care Act remains law.  Finally can rest.

After watching this episode of "TED Talks", I realized that she is right, we need to spend much more time engaged using our right hemispheres.  

Please watch to learn why and also learn some fascinating things about the experience of a stroke.

Peace and Love,


Why you should listen to her:One morning, a blood vessel in Jill Bolte Taylor's brain exploded. As a brain scientist, she realized she had a ringside seat to her own stroke. She watched as her brain functions shut down one by one: motion, speech, memory, self-awareness ...

Amazed to find herself alive, Taylor spent eight years recovering her ability to think, walk and talk. She has become a spokesperson for stroke recovery and for the possibility of coming back from brain injury stronger than before. In her case, although the stroke damaged the left side of her brain, her recovery unleashed a torrent of creative energy from her right. From her home base in Indiana, she now travels the country on behalf of the Harvard Brain Bank as the "Singin' Scientist."

Saturday, October 12, 2013

Affordable Care Act Resources VIDEO 

The link above takes you to a really easy to watch and basic video that helps us to understand how this works.  Worth your time.

The Affordable Care Act - also known as Obamacare - means better coverage for those who already have health insurance, and more options for those who don’t, including a new way to shop for affordable, high-quality coverage.     (I know it has been jammed, but don't give  up)


Here is a copy of resources from The White House

Myths and Facts  Link for you

State-by-State Monthly Marketplace Premiums

A new report shows that the Affordable Care Act will deliver on its promise to make health insurance more affordable and accessible for Americans who need it. Download the full report
The report, released by the Department of Health and Human Services (HHS) finds that in state after state, affordable options will be available through the Health Insurance Marketplace in 2014. Nearly all eligible uninsured Americans (about 95%) live in states with average premiums below earlier projections. And nearly all consumers (about 95%) will have a choice of health insurance companies,each of which offers a number of different plans.

The Marketplace will be run in partnership with States or fully by the HHS in 36 states. In these states, on average, consumers will have a choice of 53 health plans (bronze, silver, gold, and platinum plans), and young adults will have the additional option of low-cost catastrophic or youth plans.
Use the map below to explore a summary of the choices and premiums expected in those 36 states. Final, complete information about all the plans in each state Marketplace will be available via on October 1.

Get Started in the Marketplace

Wednesday, October 09, 2013

Time For A Positive Post

I had a very good day at the Seattle Cancer Care Alliance.  I almost didn't get there because I slept until noon.   I fell right back asleep when I got back home from treatment around 6 pm and slept until 11pm.  I am hydrating and eating, feeling sleepy again.

I don't know, maybe when you get cancer you feel more of everything after a while.  I care deeply about the happiness of others.

I was filled with so much gratitude to have access to medical care today.  

I am praying for the government to be running now and for the Affordable Care Act to move forward.  We can always work to adjust problems, but lets get started.

Thank you God for my health team.


Tuesday, October 08, 2013

What the Tea Party Can Do With......

WARNING....foul language.  I NEVER write like this, but the madness must stop!  End the government shutdown now!  Official rant!

I am so exhausted and I cannot fall asleep.  I cannot understand why the stinking tea party thinks they rule the wold. We are maxed out guys....time to stop messing with our lives here.

Try at age 15 getting debilitating rheumatoid arthritis.  Garner all the go getem spirit you can, then lose your career anyway to arthritis.  Go without health insurance for 10 years, learn sales, try to start a company, fail...all the republican go get um things they say to hard play hard.....burn the midnight oil......and still not make it.    Then be ridiculed for not making that's the best ever.

Finally get a stable job with a great company, maintain it and have health insurance because of the job, and get deadly ovarian cancer. which by the way haunts me all the time.

I have paid into the system.  I am not a drag on society....And I don't earn my keep on the backs of others either.

I spend my life much time with family as I can since all I care about is family, my kitty, and the vacation in savings or 401K to cash in.   hmmmmm,...anyway.....all while still on chemo.  You tea party people are cowards.  Battle the Affordable Care Act on it's own terms, stop holding innocent people hostage. You are like the guy who puts his kids in front of him when his malice is being called out.  

Republicans say I made my bed, so I must lay in matter how hard I worked....close only counts in horse shoes.   At the end of the least we should be able to agree that human beings deserve good affordable health care in the United States Of America!  

We have running water, electricity and the best pool of potential healthcare professionals in the world.

John Boehner can jam a cancer stick up his ass and light it for all I care.....not really,  any stick will do!

If I would of at least had healthcare those 10 years, maybe my arthritis would have faired better and I could have gotten regular checkups.  That would have gone a long way to maintaining better work as opposed to sales work.  Sales is not for me.    A sales rat tried to take advantage of my mom not too long ago.....

Why does the tea party want to hurt people with illness or who have disabilities?  

The Tea party is over, the flavor is gone.....lights out.  Time to end your drunken madness and sleep on it.  Maybe you will regain some compassion in the morning.

You guys are actually hurting people, stop it!  Government workers are putting their lives on the line and not getting paid like you are....they have to wait.  Enjoy your steak while they suffer. Enjoy your wine while moms in the WIC program cry at night because their babies have no formula.

Monday, October 07, 2013

"Parenthood" Season 4 : Kristina's Cancer And Other Important Stuff

Just on a side note, I love the Braverman family.  We all need our escape from reality and watching the show "Parenthood" is one of my favorite distractions.

I have been extremely tired, it just gets worse and worse.  When I am not working or with mom I turn on my Roku and catch up on old seasons of my favorite shows.  I need the distraction and who can resist the show "Parenthood".

Season 4 has Kristina Braverman battling breast cancer. For television, I think that they did a fair take on cancer.  It is not a real life documentary.  It did a good job, touched enough on important events and issues related to treatment, fears, complications of treatment and also how family adapts to these challenges.

I was glued to the tv.

Granted, this tv family is whole.  Kristina is not single and wants for nothing.  Those of us with cancer or any serious illness have a harder road if we are single.   

That being said, if you haven't watched season 4, please do so.   I really took advantage of the ability to remotely share with the character, and cry a little.  If you are a caregiver or friend of someone with cancer or any life changing, chronic illness, it can improve your empathy.

I never promote tv shows.  Not my style.  It was nice to have the marathon escape.  Chemo again on Tuesday......thank you God for the medical care.

The little joys in life.....


Saturday, October 05, 2013

Obama's ACA Opens Door For Significant Cancer Research Options

More Cancer Research Available Because of The Affordable Care Act

Insurers required to pay for routine care costs in clinical trials


By Elsie Puig for TCAJOB

"Patients from all over the world have gone to the Seattle Cancer Care Alliance to participate in clinical trials, especially those for bone marrow and stem cell transplants.
“The benefits of choosing to participate in a clinical trial can be significant,” said Forbes."
I want to address the rumors being spread about how cancer patients will be left with fewer coverage options in 2014.  How do people say these things without actual evidence?  They say it because they don't like the healthcare bill and don't want all people to have access to quality care.
The above referenced article stated clearly  that because of the historic passing of the Affordable Care Act, not only will more patients have access to newly discovered treatments, research facilities will have a broader base of participants, which dramatically improves the quality and timeliness of much needed studies.
Insurance companies cannot deny coverage to patients who participate in a clinical trial.
I have opened up a response below from someone who claims that the number of options for quality cancer coverage is decreasing due to the Affordable Care Act.
Well, why would that be?  Hmmmm.  Maybe some insurance companies don't want to cover cancer, so they drop their contract with a facility that treats cancer patients.
So the insurance company is the entity responsible there I say.  Also, somewhere along the line big pharma really needs to lower their charges for medications, across the board.  It is ridiculous all around.
This is a really unique time for people with pre-existing conditions.  We will not let this go, ever, millions of us need the Affordable Care Act, even if it is not perfect.  The ACA has implemented within it Q&A, so it can adapt and change with demand.
I have already contacted the American Cancer Society and am looking forward to talking with someone on Monday.  Please also contact them if you have some concerns about these rumors.
The woman that I spoke from the American Cancer Society was glad to help me.  
As a Nation, we are for the very first time in history on the cusp of adding another layer of real equality to services that treat our lives.
It will take time for some of the problems to work themselves out, that is truth.  The right thing to do is to give everyone a chance for quality health care, not just the few with good jobs who are already healthy.  
Imagining a nation with less illness, more health, better education and improved strength is exciting to me.  Gee, maybe we can reduce and better treat drug addiction and mental illness.  Wow, more cancer screenings to catch cancer earlier.  More cardiac screenings to avert heart attacks.  Fewer people with diabetes.  
The Affordable Care Act is not just about cancer.  It is about everyone's right to have healthcare.  Healthcare that they can afford.  Healthcare that is ongoing, not just in the emergency room.  
Peace and Blessings,

Thursday, October 03, 2013

The Affordable Care Act: A Few Resources

I have seen a lot of mis-information in the news about fears for cancer patients and the Affordable Care Act.  Tea Party Republicans are holding the government hostage because they don't want people to be empowered with health and vitality, in my opinion.  It is historic and tragic.  I have always believed healthcare is a right.

I remember when I graduated from college and was shocked to learn that my health insurance was tied to my employer.  I have had rheumatoid arthritis since age 15.  When I lost that well paid career due to RA years later, I had no health insurance. That lasted for about 10 years.  Thank God I had good insurance to help pay for the optimal debulking surgery that diagnosed my cancer.  Had I not had insurance, I would have died.

We needed The Affordable Care Act years ago and it's time has come.  

The document is over 900 pages long.  It is understandable that people and agencies are overwhelmed.  Some of my ovarian sisters are scared about some of the outcome based strategies written into the new law that are designed to improve quality of care.  I think some doctors are also not sure what this will mean for some patients.  Some bad employers have  prematurely dropped spousal coverage as of October and these poor people are not able to be covered until January of 2014.

I myself need to shop for a new plan because my insurance decided to cut off my provider.  I want my doctor, I want my treatment team and facility so I will shop till I drop to keep them.

The big picture though is that millions of good people will have the ability to see a doctor.  The benefits in preventative care and screenings have been ramped up.  There will even be a program that will try home based delivery of care by physicians. Mostly, people with pre- existing conditions no longer need to live in fear.  

The ACA will take time to be perfected, but this is an historic opportunity for millions of people to have access to much needed screenings and care.

Here are a few resources that will help cancer patients have tools to better select insurance and also have access to treatment protocols that have been created.  

Love Denise