Wednesday, January 20, 2010

Surgery Time

Will be off from now until the end of February.  Wishing you all health and peace.  As Arnold says," I'll be back!"  Hi Ho ..it's off to surgery I go.

My Best,
Amy

Tuesday, January 12, 2010

The Ask

You have become very ill.  Some of your friends that you thought would be there for you have run for the hills..they can not deal with you being ill.  Other people that you would never expect have come forward and said how can I help you.  Or Maybe you have no one to help for whatever reason and you do not know where to turn?  Here are some suggestions to help yourself.

Do not wait for people to call you...many do not know what to say or do.  They are afraid for themselves and you.  Many people have said to me over the years, "Call me if you need anything".  Some mean it and some do not.  I do not know until I call.  The folks that did not mean it...I let them go...it does not matter why they can not help you...they never will...let them go. And it is OK.

Folks that want to help need to be told what to do....I have no food...can you go shopping for me?  Are you cooking chicken soup anytime soon?  Are you busy on the 20th so I am not alone at my doctor appointment?  Can you help me with some paperwork?  How about we get our nails done :)?    It is a rare person that just knows what to do in these situations.  We can not be shy in asking at this crazy time in our lives.  Can you call my insurance company for me?  Can you come in my car and scream with me?

If you really are not supported very well...use the social worker at the hospital as a resource.  Go to places like the Wellness Community where social services are given to people free of charge.  Go to your place of religion.  If you have not been to your Temple, Church, Mosk..etc for years...go back!!!!

Moving forward in such a way will empower you and make you feel like you have some control.  It will bring you around people when you may really need it.  I have been doing this for 9 years and there have been times when I feel like I just can not do this anymore.

And then I think about all the people that have been there for me and are still there for me...and I keep going.
You would be surprised how strong you are.

Questions about medical issues

As I prepare for surgery I have some questions for you.  Are you single?  If you are not is your partner able to care 100% for you in case of an emergency or long term medical event?  Who is your medical buddy in case something happens to you?  Who will come running in the middle of the night...anytime...anywhere? These may not all be the same people.

I am single and my daughters who are 20 years old are fabulous people however they are not my medical buddies.  Should I leave this earth way too early they are in charge however for everyday medical stuff I am very fortunate to have dear friends that I could not be without.  This type of work would be too emotionally draining for my young daughters.

For example...I have a friend that will stay over night with me in the hospital for a couple of days until I am human again :). When I come home I will use my long term care insurance and that is another blog.  I will have lots of home health care as I move from the surgery into chemo for at least 4 months. (bye bye hair for the 3rd time...just grew it all back...damn!)

I have friends that help me with paperwork and talking to doctors if I need it.  I have friends who stare at me and say, "need anything?"  ....When all I really want is to do everything myself!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  And have my hair back :)...I can even do a ponytail now.

I learned how to do all of this from a friend of mine that has long passed away.  She would post a schedule on the internet to her friends as to what she needed and they would sign up.  She was not single however her husband had to work, she needed to get to the doctor, or chemo...and her kids needed some schlepping.  If you do not know schlepping....look it up :)..Lots of driving...lots of different places.

I have always hated asking people to help me.  I used to do EVERYTHING myself.  I have long ago let that go because of physical and financial issues.  It is very important for you to organize yourself so that you have proper help.  It is very important to ask people.   The next blog is about the ask....how do you ask for help when you are the person that usually gives it?

A Video of Me and Others

see http://www.healthination.com/

Go to true life stories.

Myself and others are there.  Go to Cancer Survival

Donating Money to a Cause

This blog is not about supporting any particular cause or charity however if you are inclined to do so, please do a liitle research before you give.  For example....when you give a dollar, how much of that dollar actually goes to the the exact cause?  How much of that dollar goes to paying people's salaries and administrative fees?  What exactly is the cause or charity supposed to be doing? Research where you give and find out if that particular cause really uses your money wisely.

There are many ways to give after research.  You can make a simple donation and enjoy the tax advantages.  You can speak to a certified financial planner, insurance planner, CPA, or estate planning attorney and learn about estate planning through annuities and/or life insurance.  Educate yourself before you give your hard earned dollars away.

I do not think a lot of cancer research money is necessarily going to the right place.  A lot of it needs to concentrate on how cancer acutally begins..why those cells start to multiply from the beginning...and not so much towards a lot of these crazy drugs.  There are exceptions.  Gleevec is one.  Many folks were literally in hospice with gastro intestinal  stromal tumors and along came this miracle chemo that melted tumors away. It was amazing.

Consider donating to rare cancer research.  It might save a lot of people's lives who otherwise had no chance of survival at all.

Monday, January 11, 2010

The Process

How do you get ready for surgery?  Do you go on a vacation and lay on the beach and pray?  I cannot afford a vacation just now however the idea of it is so appealing.  I might not come back, if I went. 

This is my 6th major abdominal surgery and my millionenth...if I count all the little ones..ports in and out, etc.
First I have one huge cry.  There is bliss in ignorance however I know everything that is going to happen here and then some..  This time I am loosing a kidney and whatever else needs to go with it.  After that I will be pulverized with chemo therapy.  This has to work.

So I did my huge cry and I am now in the planning stages of being able to disappear for months and concentrate on getting better.  This is a lot of work and I do most of it myself. ....I have to close up my business yet again and get others to help me out.  I have to tend to a lot of personal issues, make sure things are paid etc.  I do all of this without emotion as it is the only way I will get anything done.

After that I will go a little numb in my thoughts.  I will become a person that goes from task to task in order to accomplish everything.  I will not think about what is going to happen to me or dwell.  I will just follow the process.  This includes the process of getting ready for surgery as it is pretty intense.

The liquid diet days before and the enema the evening before.  By the time you actually go into surgery, you just can not wait to get it over with.  You welcome falling asleep and pray that the hell you wake up in will not last too long.

Sunday, January 10, 2010

UGH!

My blogging the next few weeks will be all over the place....sorry....My scans were not so great and looks like I will be heading into another surgery.  I will type whenever I can.  I will try to continue with health insurance and many other topics as well.

My Best,
Amy

Tuesday, January 5, 2010

Off Topic/Kids and Parents with Long Term Cancer

I am just off topic on this one blog ...I will be back on health insurance.  Some writers just have to go on inspiration every so often.  :)  A friend of  mine told me you are only as happy as your saddest child.  I think this is true.  These are some things I would like to say to the kids whose parents are struggling with years of illness and the possibility of death concerning their parents.   I have said some of these things to my kids over the years.

I am sorry I got cancer.  I hate the fact that even on my best days when things seem so normal.. that cancer and what it might do sits in the back of our minds.  I hate what it has already done to our family.  I am sorry that your Dad is gone as well.  There are no words...just lots of huge feelings to deal with.

The toughest days for a parent are those days when you realize that you can not help your kids with certain issues.....that they must figure things out for themselves and if they can not then it seems all the more painful.
I am sorry I can not take this pain away for you.  You must find your own peace along the way.  All I can do is make suggestions on how to help.

My hope is that along the way of having cancer that I have shown you how much I value living and being here for many more years with you.  I hope I have shown you how wonderful life can be with or with out illness.  I fight so hard to live because I know that around the dark corners are days and years of love, health, and happiness for you.  I would like to see it.

Now I do see the pain in your eyes.  I can hear you thinking.  Some parents can do that.  I am one of them. :)  No matter what the future holds you are here.  Make the most of it.  See the world.  Meet all kinds of people.  Do not be shy.  Shyness is worse than having cancer. :)....Because then you miss parts of the world and people while you are still here.  Complaining and worrying is also a waste of  time.  The stuff will happen anyway.

Breathe deep, take your time, and plan carefully.  Understand that if you decide to have children someday that they will not grow up to be anything like you thought.  They are time consuming, costly, and fabulous!  And stuff will happen to them that you can not fix and then you will understand.

I love you always.

Ideas on how to pick a Health Insurance Plan/Part II

You now are sitting with a big book in front of you either from your employer or the agent that just left your home.  You are confused.  I still am :)...I hate those books.  They can list as many as 20 different plans.  Which one do you pick?  Here are some basics.

There is the deductible.  That is what you pay every new calendar year until your plan actually kicks in and they start paying.  Deductibles have a huge range.  If you are not going HMO, pick a deductible that you can actually afford.  When I say the words,"That you can actually afford", I want you to look in that crazy crystal ball and think.  Think about what this plan will cost you if you are well and what this plan will cost you if you become very ill!!!  This is very important.  This is what also makes people go broke.

Your deductible starts new every calendar year.  Make sure you do all your wellenss visits before January first so you do not pay out of pocket for these tests or visits.

You have to read the fine points of the plan when choosing a PPO or POS.  When or if ever do they pay 100% of your medical bills.  Is it a family deductible or per person family member deductible?  If you have a $100,000 hospital bill for example for any reason...how much of that is covered?  100%?  80%?  70%?

Is the hospital you like to go to contracted with that insurance company?  Your doctors?  The place you would go for a scan or test?  The anethesiologist?  Believe it or not once when I went for a scan and I received a bill for thousands of dollars not realizing the place my hospital sent me for a scan was not covered under my insurance.  The bill was overwhelming.  These days you must check everything and everyone.

I am cutting this short today.  More on this topic tomorrow.

Monday, January 4, 2010

Your health Insurance Part One

We get our health insurance from a few places.  Some of you may get your insurance from an agent privately.  They earn a commission based on the cost of your plan.  The more expensive the plan, the more they are paid by the insurance company.  If you get your insurance this way,  make sure you are sitting with an experienced agent with many years in the business.  These plans are very complicated and there are many companies out there.  Make sure you compare your apples and oranges properly. 

This is just an aside if you have daughters.  Most plans these days do not automatically include maternity. It is extra.  If you have teenage daughters..this is where the chuckle always comes in from the parents with these daughters.  If you have a daughter in the teenage years or older...include the maternity for them.  I have seen it too many times where the parents refuse to buy it for their daughters and then the unthinkable happens.  Enough said about that.  I have two daughters.  :)

Some of you will get your insurance from your employers.  It usually costs much less money to get your insurance this way.  It is group insurance and you get it at a certain cost no matter what your health issues are and you get to keep it as long as you work there.  If you are fired you will have the option to either go on cobra for a specified period of time, maybe qualify for insurance at a new job, get private insurance ...or have nothing if you do not find work, or have a pre existing condition where you are not eligible for private insurance.  You could have nothing.

Research this carefully...if you are healthy at the moment you may want to go private even if your employer offers insurance.  Once you sign up, you can not be dropped however if you sign up at work and think at some point you may be leaving ...at some point you will loose that insurance and if a health issue comes along you may not be eligible for any private insurance at that point.  Weigh these options carefully.  Talk to someone who knows this business. Going with your option at work could also be your best bet.

There are also many different kinds of plans.  There are HMO's.   With an HMO you need permission to do anything and everything outside of your primary care physician.  If you have a cold or need a colonoscopy or even have a very common cancer, like breast cancer...this might be just fine.  If you have a rare illness this could be the kiss of death.  In certain areas HMO's do not have specialists...for example in Sarcomas.  You need very special permission to travel outside of their ranks and this is very difficult to accomplish for many reasons that will be talked about in another blog.  It also takes a long time to get appointments and results from tests.  Time is precious in the world of rare illnesses.  HMO plans are the least costly and if that is all you can do, there are still ways to make it work if you have no choice.

There are PPO or POS plans.  This is where you need no special permission to go anywhere, anytime as long as you stay in the network of doctors on their list.  Stay on the list.  It will cost a fortune if you do not.  You also have to do extra homework and make sure the doctors you need are on this list. 

There are also Health Saving accounts and Health retirement accounts which I will discuss in later blogs.
The next blog wiill general ideas on how to pick the right plan for yourself and your family.

What does your health insurance actually cover?

Your health insurance no matter where it comes from covers you for the following.....within the limits of your specific policy.

1.  Acute Care
     This means you go into the hospital for whatever reason and exit the hospital on your way to a full recovery.

2.  Sub Acute Care
     You go into the hospital for an extended stay and will eventually come out still being able to care for yourself.  You may need care for a time in a rehab facility however at some point you will recover and be able to care for yourself.

3. Rehabilitation
    Your health plan covers your rehabilitation as long as you are actually improving.

This is all within the limits of whatever policy you have.

However let's say for example you have had a stroke.  You are going to be on a walker for the rest of your life and  you need care bathing and dressing.  You need help making meals for yourself and getting around town because your mobility is affected.  Maybe because of extended surgeries and chemo you just can not get out of the chair by yourself.  Your medical insurance pays for none of this kind of care.  This is called long term care, where you need help with possibly bathing, dressing, continence, mobility,eating, and toileting.
The above mentioned are called activities of daily living.  There are also the incidentals of daily living such as someone helping you with paperwork, driving you places, and generally organizing your life so that you can manage.  Your health insurance covers you for none of this.  This is how many people loose their savings because they have not planned for a long term care event in their lives.

Medicare pays very little for LTC services.  They only pay for 20 days in full for skilled care nursing and only if it preceeded by a three day hospital stay.  So if you are on medicare you must see to it that you stay in the hospital for at least 3 days to get this coverage.  It is only for skilled care nursing.  There is no home health care and no care for assisted care living.  After 20 days in full they will pay a small percentage up to 100 days for skilled care nursing only.  Bascially if you need lot of care you better have a lot of money saved otherwise you are up the creek without a paddle.

The statistics for this kind of care are misleading because you only see stats for skilled care nursing.  There are no stats for home health care because there is really no way to count this as of yet.  With the baby boomers about to hit old age and the advances in medical science there will be many people needing some type of care possibly past 5-10 years or more.  We see these stats already with stroke, dementia, cancer, and other long term diseases.

More on long term care later.  The next blog is about picking the right medical insurance.

Sunday, January 3, 2010

Info on Past and Future Blogs

During the holidays I have focused on emotional issues concerning cancer and long term illness.  The next few blogs will be about your medical insurance and specifically what it does and does not cover. 

Since I am back at work, I am also going to talk about long term care and your choices for care during a long term illness.  I am going to discuss many issues concerning the chronically ill. 

I will talk about patients, caregivers, and places you may be able to get help if you do not have long term care insurance.  If you do have this type of insurance I will talk about how to get the most out of your care. 

As many of you know I do have an insurance business.  I am specifically a Long Term Care professional.  I had a very successful business until my own illness prevented me from working for almost three years.  I am now back up and running with partners and it feels great. 

My perspective on care may be a bit different than the average person because I live with cancer everyday.   I see things that others might not.  So in the next several blogs coming up, I hope you enjoy my writings and please comment if you have anything on your mind.  It may help someone or me!

Being a Mentor and gaining Courage

I saw the movie "Blindside" today.  It was inspiring.  I am a pretty cynical person from time to time however I love true stories of people overcoming the odds.  This gentleman that plays pro football now, he did do just that.

He found a few people along the way who really believed in him.  He had mentors.  People that become mentors are very important people.  They show us how to survive in all kinds of situations.  It could be escaping the projects and the gangs as in this movie.  It could be soldiers in battle teaching others as they come along.  It could be someone newly diagnosed with cancer and has no clue how to navigate their illness, the insurance company or the medical community.

A long time ago we did not have the medical advances that we have today.  People just did not live as long as they do now.  We did not do as many surgeries on the same people because we just could not.  People died earlier because there was no choice.

In many cases today is different.  We have so many advances that folks can have multiple surgeries and lead a fairly normal life or very normal life.  You can receive chemo therapy for years..I had one friend that did chemo for 11 years until she passed away.  She was very ill the last couple years and needed help at home.  We now have "choices" in chemos and surgeries...

The chemo or surgery first?  Which chemical do I choose first?  What about new anti-angiogenesis meds?  How many body organs can I live without until the surgeries must stop?  How many times can I use this chemical.  What are all the SIDE EFFECTS of everything I am doing to myself?  At what point is enough is enough?  Who can help me with all of these decisions?

In todays times not only do YOU have to research your illness and where to go for help...you must battle the mounds of paperwork from hospitals, doctors, and insurance companies.  This becomes almost if not a full time job.  Long term illness is a full time job.

In the midst,  is the emotional output of just having to deal with Everything at once.  I had a lot of help with all of this over the years.  I had mentors.  A few of them are long gone.  These are people who took the time to help me navigate these muddy waters that occassionally felt like quick sand.  I mentor others now when I can. 

I can see the look of pain and dispare in their eyes when I first meet them.  It's amazing what sometimes happen weeks or months later.  Some of the pain is always there however some of the sadness is replaced by hope ...by seeing others live and fight. 

So if you are lost in illness make a new years resolution to find a mentor or at least someone to help you.  If you are sort of in that place of peace and resolve to fight ...find someone to help.  They need it.

My New Years resolution is to be more organized myself....the next blog is very technical...all about your medical insurance,

Friday, January 1, 2010

The Escape

I am so very happy 2009 is over.  I think this has been one of my longest years ever.  I had chemo, 3 surgeries, and my Mom passed away.  I did go back to work and I am hopeful about the new year.  I always am.

What I am really hoping for is a real future.  I want that next chapter.  The chapter where I and others like me get that fresh start with disease gone or at least under control. I would like to travel and look around the United States and see where I would like to live next. I do not think I will ever get to truly retire however the thought of starting some where brand new is quite exciting.  I am ready for brand new.  I love California however my kids are all grown up and both my parents are now gone ....so maybe it's time.

I often take the train to visit one of my daughters.  I love the train...a good book and a clean window to stare out of is all I need and I can go for hours.  When I was in my 20's I backpacked all over Europe with a couple of friends.  I could easily do that again for months here in the States...you never know.  Whatever your escape is, I hope you get to have it.