Monday, April 29, 2013

Navigating Long Term Care

I have posted about this in the past however since this last surgery I feel it necessary to discuss it again perhaps in different way, since once again being a patient myself.

I know all of you realize at this point that your health insurance covers nothing having to do with eating, bathing, continence, toileting, mobility, and dressing once you return home.  These are called your activities of daily living.  Then there are your incidentals of daily living...cooking, cleaning, paperwork, shopping, paying bills, making calls, etc.

Your choices for funding this are your own money or long term care insurance.  You can only get this insurance when you are fairly healthy...there is underwriting involved.  I have been marketing this type of insurance for over 10 years.

I am going to use myself as an example here.  I have no horrible nursing home story of me personally and there are millions of stories.  I have not yet used my insurance in all of these years because I have been fortunate enough to heal in less then 90 days.

With that being said healing from this surgery this time has been very difficult.  There have been a couple of moments when a dish was too difficult to pick up.  There have moments when I almost did not make it to the restroom.

I can also remember a time doing chemo when I was so out of it years ago that I just could not move  ...to do anything at all.  I am not telling you these things to feel badly for me.  I am telling you because at any time you could be me and how do you want to receive care?  I want it not from my friends and/or family.  You can shop for me, even cook for me...however changing my clothes, bathing me, helping me in the restroom...picking me up off the floor...I want no family member or friend to help me with those duties.  I want a stranger to help me that I can pay who is emotionally uninvolved and someone that I do not have to be embarrassed in front of for any reason.

Your family wants to watch a movie with you or play a board game...they do not want to wipe your ass...trust me on this one.

Your family also has to go to work and earn a living.  They may even live in a different state and can not come.  Your friends are busy as well.  Long term care planning with or without insurance will give you dignity and some control.  You can not control your illness maybe...you can control your care...if you plan!

Saturday, April 27, 2013

Treat Your Healthcare Like a Business

http://www.TreatYourHealthcareLikeaBusiness.com

Check this out!  Thanks!  One of my day jobs and more coming. 

Thursday, April 25, 2013

How to Help Someone that is Not Well

I have been very lucky in this department.  Other than a bit of food shopping I have been able to always care for myself.  Thank heaven.  However I am always somewhat amazed by the folks I hear from and do not hear from at all.  Thank you to all those folks that have reached out to me over these years.  I would have been lost without you.

So here is some advice on how to help someone that is ill.

1.  Do not ever say call me if you need me.  Do you think that ill person will ever call you, even if they need help?  They will not.  I have only called people over the years that really reached out to me first.  Call that person yourself.  And not just once.  Call the person a few times and see exactly what he/she needs.

2.  Often an ill person may not want company however he/she may really need something...like food..help with laundry, a phone call made on their behalf...ask say.."I have the next two hours free.  What can I do for you in those two hours".  Be specific in your offering of help.

3.  Let the person that you will be checking back in every so often and that if an emergency really pops up that you might be available to help.

4.  I have found over the years that certain fabulous friends are willing to do only certain things and I have been respectful of their wishes and grateful for whatever they have been willing to do.

I have had friends willing to accompany me to chemo or sleep over night with me at the hospital.  Others shopping and cooking for me.  And there are those that just want to have fun with me when I am better and I appreciate everyone telling me the truth which allows me to better support myself physically and mentally.

It is a very difficult thing for some patients to accept help.  We are stubborn and proud as well.  That is why it is important for those that want to volunteer to help to really make their offers known. 

Before You Enter the Hospital

1.  Obviously make sure your medical directive is done.

2.  If you know in advance that you will be having financial issues try and organize yourself at home etc way before you are home recuperating.  Organize bills and paperwork in case you will need someone to help you as well.

3. Who is spending that first night with you in the hospital?  The Nurses themselves will ask you who that person is.  This is not a time to be independent.  Please have someone with you in your room, for the night on the day of your surgery.  You will need that person. Do not be alone.

4.  Pre arrange your care for when you return home.  What will you be able to do and not do on your own when you get home and who is helping you?  When I got home last week picking up a dish was an issue...do not be alone everyday.  Surround yourself with helpers :).  You will recover better as well.  Do not forget to contact the Social Worker in the hospital and discuss with her how she can be of service to you in your care.

5.  See the dietician in the Hospital as well regarding any food issues that you might have in the hospital or coming home. 

6.  Pack your bag way in advance including things like PJ's..slippers that you can throw away when you leave the hospital.  (due to germs it is advised that you do not walk at home is any shoes that you wore in the hospital)  Bring a small robe as well.  Hospitals are freezing places due to germ control.  Be warm.

7.  Arrange for someone to bring stuff to you after surgery.  Do not bring valuables with you until you are ready to watch them yourself.  Many people have access to your room.  This is not a hotel.  Save your computer and cell phone for later.

8.  Maybe let people know that you would like or not like some company.  I do not like company too much when I am in the hospital because I am focused on one thing...getting out.  I am busy walking ...trying to eat, etc.  A lot of visitors zap my energy and I can to do what I need to do.  In addition quite frankly I do not like a lot of people to see me in that kind of shape.  This is important time for you.  Be selfish.  Get healthy.

9.  Before you go into the hospital do something wonderful for yourself.  I usually go get a massage.  With your body being invaded in such a dramatic way you need something relaxing and soothing first.

10.  Lastly who is your person that will help you in any emergency no matter what it is.  Make sure your person is ready :)




Tuesday, April 23, 2013

Many Abdominal Surgeries and Eating

I am sorry folks for not typing more.  I have been a bit overwhelmed at the length of this recovery.  This has been my biggest surgery yet.  I am also older and this is about the 11ht surgery...I just think that I should be better tomorrow...and I will...just not yet.

I really miss eating.  Digestive surgery is a bit different than other types of surgery because you must eat....or you are dead.  You can live without an arm...and yes even a breast or two however you can not live without your liver, pancreas, bowel, etc.  These are very much key parts of your body.  Mine are a mess at the moment.

Every body function right now is a chore....including eating....anything ...everything....and not knowing the ramifications of what you just ate in the way which it will exit your body.  There is no pleasure in this at the moment.  I miss the pleasure of eating.

So I have turned to music and reading...and getting ready to start working shortly.  I would pay big bucks for the ability to inhale a milkshake with lots of whip cream at the moment!




Sunday, April 21, 2013

Hospital Follies

Humor is necessary...everywhere....a few medical funnies in the hospital. 

This time around my room was near the nurses station.  I like this.  it makes me feel a little more secure just in case I need to scream! :)  And I like listening to hospital gossip.  Why not?  I have nothing else to do while I am there not able to move or eat :).  And I love medical people as I now spend a good portion of my life with them.  I wish when I was younger that I either became a singer or worked in the medical field...I actually feel like a professional medical person now...I am just not sure what to call myself..huge advocate for others does apply.

So I am laying in bed minding my own business when I hear a nurse screaming from the station, "Where are all the nurses? (in a panic).  The phones are ringing, lights from rooms are flashing and there is no one around. Where is everyone??????

I am a very calm person.  I was not worried as my hospital is world class all the way around...however I thought to myself...if I was a new patient and heard this that I might have some cause for concern?  All the nurses of course were there.  They were just doing what they were supposed to do.  They were in their patients rooms. I wonder if they ever look for doctors so frantically :).

A different evening the gal next door was walking her imaginary dog at 3 in the morning.  There I was laying in bed trying to sleep....

"Sit Honey.  Do not go to the bathroom on the neighbors lawn.  You are so cute in your new coat."  Was that her dog or her husband? "

They give some great drugs in the hospital. :)

Recovery

I have a lot to say about this particular surgery, the hospital stay, doctors etc however just in this post I am going to to talk about some mental issues in recovery.   There are many of them and I believe that they are exaggerated in long term cancer as they keep reoccurring over and over again.

The first one right out of surgery is my concentration level.  I am having major issues with focus and just being able to finish a task.  I know many of you have this in your regular lives however this is driving me nuts.  I am going to drink coffee to see if this helps for now.

Another issue is just a bit of post traumatic stress.  My body just had a major assault physically and mentally.  I am trying to work through it all and each time the interruption is bigger in my life.  As I sit down today to make a plan for the next couple of months, my mind wanders to what has actually just happened....that I had my 12th abdominal surgery...that my rectum was re built....that my surgeon who is a genius could actually do that...and that I actually had that done to my body.   And that I may never be done with cancer until I die, even though I fight and fight and fight everyday while trying to live a life of quality and enjoyment....and it has been 12 years of this much of the time.

I feel for loving family and friends around me.   A couple have run away again and that is expected.  I am never surprised anymore by the behavior of some people.  I feel mostly for my daughters who are petrified and worried sick about my future.  I tell them not to worry....we keep living our lives no matter what and I will.....I am so not done here :)

I want to run from cancer however I can not, so in order to fight properly I must accept it and vow to help others live like this....so that I can help myself and me.  Next post....Hospital Follies

Thursday, April 18, 2013

I Made It

Well I am home :).  I made it through well and my surgeon is a genius.  He has saved my life for the 10th time.  I will start posting on a regular basis tomorrow.  Thanks for all of the well wishes! 

Sunday, April 7, 2013

Thoughts Before Surgery/Last Post for Awhile

Please check back in about 2 weeks for more info :). 

I think in these 4 years and about 400 posts I have discussed just about everything about fighting illness.   I could keep going forever as our health insurance system continues to unravel and costs sky rocket.  And I will discuss this more in detail in the future.

Right now I am wondering how I might wake up from this next surgery.  I know I will wake up....I am just not sure in what shape.  I am praying to all Gods :)....meditating...doing Tai Chi...and imagining myself dancing the days away in Hawaii.  I am also watching funny movies all day in between abdominal surgery prep...sometimes the fun just never ends :)

You must believe in yourself.  You must believe in your life as it might be...everyday...

With love, Peace, and Fun!  I will be back soon with oodles of new information and stories.

Thursday, April 4, 2013

The Only Good things About This Surgery (humor)

1.  I get grow hair in places that normally , I would not allow it.

2.  I get to have gray hair on my head :)

3.  I do not have to put make up on for quite some time.

4. People will cook and clean for me.

5.  I will get great foot massages by the nurses assistants.

6.  Everyday many people will ask me how I feel and really mean it (lol)

7.  No one will run away from me because I have cancer.

8.  I get to see old friends that I have known for 11 years at the hotel :)...same floor ...they too wonder how I keep coming back....Me too ..

9.  When I am feeling better I can sneak to the lovely lobby and listen to the volunteers playing the piano and visit the Chapel to pray.  I will visit the Chapel a lot.

10.  I get to watch General Hospital everyday and wonder if my nurses and doctors are having sex all over the hospital...is McDreamy walking in? :) hmmm...

The best thing is that I will get better...and better....and better


Anatomy of a Surgery /Part 1

I am heading in to my 12th abdominal surgery.  I started this at 44 years old.  I am now almost 56...yay and yikes!  For those of you that feel that the new 60 is 40 etc. I hope to God that is true :).  I am making believe that I feel that way.

Tomorrow is the last day for a few weeks where I will be able to eat regular food.  Saturday I begin a liquid diet to clean out my system so that the surgeon can operate properly.  I will be doing other things as well to clean out my system. Sometimes I believe the days of prep are worse than the actual surgery.  I love food :) and having fun trying to actually gain weight before all of this happens. I do not want to be too thin..ever.

Part of me is like a robot.  I know the drill well.  And the other part of me is petrified not knowing what parts will be there or not, when I wake up.  Waking up from surgery is always my biggest nightmare...there was one time when all was ok and another time when the epidural was not working and I really wished I could have left the earth.  Even child birth could not have prepared me for that kind of pain.  I could not speak for awhile and I just lay there.  Finally the nurse saw tears and increased the medication drastically.  She was a great nurse.  I always pray for great nurses. They are priceless.

And then there was the time that I woke up and started feeling around my entire body.  My surgeon had prepared me for the possible loss of a kidney...I was looking for it...I found it and the epidural was working so well I just wanted to get up and dance. :)

I also picture all of the tubes that I will wake up with and know that they are there to help me...not hurt me.  The nose tube I imagine would be a great punk rock accessory :)...the huge one in my neck...great for Halloween...and the catheter...not sure what to say about that one :).

Lots of love and more later.


Wednesday, April 3, 2013

Sarcoma Alliance Fundraiser

http://www.active.com/donate/outriggero2h2013/aimeepaddles13        (hope I got this right :)   Maybe one d in the paddle.....

Donate 5 dollars or more today...... help a very ill person get to a sarcoma specialist and save a life!

Share and spread the word.  Aimee only needs another $175 to reach her goal of $1000

More than that is fine as well :).  Thanks!

This public service announcement was brought to you by all those folks that would like to see cancer wiped off the face of the earth :)

Love
Amy

Tuesday, April 2, 2013

Food Frenzie

Back to a little fun...I am not sure why women are so weight obsessed.  Older women really need 5 to 10 extra pounds to look healthy in older age.  There is nothing worse than a painfully thin older woman trying to look good.  You don't if you are doing it on purpose....just sayin...in old age thin is not in...I am 55...not old..however still a time when some age shows...especially if you are too thin.

And heaven forbid you get sick and loose more weight...can't talk about it.  So this week I am trying to eat everything everywhere, all the time.  I do not want to be that painfully thin woman after surgery!

I am eating Haggen Daas Ice Cream...and anything else in my path.  A size 2 is something that I do not want in my future....6 is ok :)...please pray for my 5 to 10 extra pounds! I need it!!

There is much jello and Ensure in my future in surgery prep...along with the other stuff that I can not discuss here...well maybe later...:)

Remember...sense of humor is everything..it has to be for now :)

Your Family, Friends, and Long Term Cancer

Whether you are new to this blog or have been reading for years you know that having so many surgeries, etc is quite taxing on you and all of your loved ones. 

I have had so many people over the years run to me ...run away from me...run back...and run away again.  I have had strangers help me...people I have known for years do nothing.  Family members never contacting me once during all of these years except on holidays with a card.  I have had people tell me to call them if I need them...that is always the funniest to me.  That is not how it works really ...you need to call that person that needs help...that not sincere call me routine is so obvious :).  Trust me...I know.  They will wonder why you never called them for a second and then move on. 

I am always in awe and grateful to the folks that just call me and ask me what they can do.  I have had over these years an amazing support network of kind and loving people... Whether you come and go or stay for awhile ...Thank You. I have been very fortunate for the kind and loving people in my life.

In the beginning of an illness the support network is usually large.  People are in shock and want to help.  After awhile it lessens...I will not go into the whole psychology of this however take my word for it.  A lot of the support in the long run has to be created by you the patient, as people just do not know what to do.  So you have to let them know how they can help you.  Please tell them.

In creating your long term support, do not be shy.  If you need a ride to the doctor...tell someone. If you need help with anything...tell someone!  People like to help ...sometimes you just have to help them, help you. 

If you are a very solitary  person and do not have a lot of people seek out the social worker at the Hospital for info on free services like the "Wellness Community" or the "Survivorship" program at the cancer center. Do not be alone when you do not have to be.






How to Prepare for a Hospital Visit.....

Back to business for now folks.  What do you need to do at home before you check in to your hotel room.

1.  Pay your bills ....a months worth ...if you can not,  call who ever it is and make an arrangement until you get out of the hospital and can tend to these issues or have a friend make these calls for you.  Do not let them sit.

2.  Make sure your medical directive is in order and your will/trust.  You may not be dying however should something terrible happen you really want your affairs in order for your family for so many reasons.

3.  Who is sleeping over night with you the day of surgery?  Make sure you have someone stay the first night.  I am in a world class hospital however do not be alone when you have no clue what is going on around you. ..if you are in ICU they do not allow that however in a room they sure do.  And the nurses like it when someone is there ...it helps them with their job knowing that you are always being watched by a loved one right out of surgery.  Be nice to nurses.  They are over worked and under paid.

4.  Ask a lot of questions .make a list...for admissions...for the nurse...for the doctor...for anesthesiologist?

5. Know what your insurance covers and what it does not.  Make sure everyone takes your insurance so that you are not surprised with a huge bill later.  That includes the anesthesiologist who you never see until you arrive at the operating room.

6.  Prepack some warm clothes for when you are feeling better.  If your stay is long like mine is...a week or more eventually you need regular PJ's...slippers that you can throw away after because hospital floors are filled with germs that you do not want to bring home....and really warm socks.....and an easy robe to slip on and off.

7.  Get ready to walk...the faster you are up and about walking...the faster you will get the hell out of there.

More later about Money......and the hospital

Monday, April 1, 2013

More About Hair

In about 4 months I will have no hair for the 3rd time.  A little bit about bald women.  I could have cancer, or any illness or nothing and just choosing to be bald.  I am not going to wear a wig.  I feel no need to hide.  I am still me whether I have hair or not.  Get over it people. I will be ok.  I am gorgeous.

What is wrong with you that you feel the need to stare.  I am no different than you with your hair.  Men are so lucky sometimes.  They can be bald without people thinking that there is anything wrong.  They can pee almost anywhere and be shirtless many places. At least we all need to wear shoes.

Men can grow hair on their faces and that is ok too :) ...lol...however they are looked at when wearing wigs and make up!   Get over it people!

A little sense of humor goes a long way...there is another post in here somewhere about hair called , "When I Had No Hair"

The serious side.  Remember, "Your Eyes Are The Windows to Your Soul"...not your hair.  Hair grows back and if you let it go, you will know that your life grows back as well right along with your hair :).  xoxo

If you have a question or comment please e mail me at amyreg@aol.com.  I am avoiding a lot of spam here.  Thanks!




The Power of Words

The words you use to describe events in your life in illness..they mean everything in a positive or negative way...This is how I choose to heal.

I will only use positive words and phrases...

1.  The pain I will feel when I wake up is pain that will decrease in measure everyday.  It tells me that I am healing.

2.  I am walking the day after surgery.  Every step I take is one more foot out the door of that hospital.  They are the steps of a continued life of well being.

3. I will cry tears of joy and not tears of sadness because I am still here and I will function...my body is going to work.

4.  I must do this.  I must do this for Me, my kids, and every other person that wants me to stay here.  I am staying here awhile longer...a lot longer.

5.  The day of surgery and there after I am going to dream.  I am going to dream of me helping others heal like me, traveling the world, and dancing everywhere I go.  I will dream of love, hugs, and peace.

6.  When I wake from this surgery I will remember to dream that I am floating in the sea...in the sun...in a beautiful light and I will heal...and that epidural is working!!!!!   Seriously working!   LOL...

The hospital I am in ...the room...the people..the energy is all there to help me heal and leave ..that is what I am going to do.  Heal well and leave.  I know it.