Tuesday, July 29, 2014

Cancer Survivorship...My Anniversary or Cancerversary

My 13 year anniversary with cancer is next month....hard to believe....especially now with a little life threatening disease in very odd places.

Last weekend was amazing for me.   I spoke for a great group...made people smile and laugh.  Last weekend I was not a person with cancer.  Last weekend I was entertaining and helping fabulous people.

I have so many new clients that I do not know what to do....Every second I have will have to be planned.  I am loving my life....which makes cancer all the more threatening.  I hate you cancer.

I celebrate life everyday by just being here.   Everyday....every moment even when times were not so good....I wanted to be here.

So I would say to you on this anniversary....if there is something in your life that you need to change...do it...no fear...so what if you fail....it is just a lesson in success...keep going....keep going...until you can not.


This is what I do.   I love being here....why don't you???   xoxoxoxoxo


Thursday, July 24, 2014

This Weekend and next week.....I do not have Cancer :)

This weekend...Friday morning I am on Ron Siegel Radio from 8 to 9 am.  Saturday I am at the Naked Truth Workshop presenting with wonderful speakers in Santa Clarita.

Sunday I am seeing clients regarding patient advocacy.  I wish I could stop time.  And make believe that stage 4 cancer did not exist in my body....but it does.

So I will enjoy the next few days.  I will get ready for scans on August 4th ...and a second opinion at UCLA. 

Next post is Monday.   Let's have a great weekend!

Sunday, July 20, 2014

Cancer Survivorship...How to Learn a Coping Skill

As stated in a previous post...coping can be a learned skill if you are willing.  If you are mentally ill that is different and you should seek professional care however if you are just at a loss and need help here are some tips and they may seem simple and silly however they work....I have been using these techniques and teaching others for over 10 years.

You are angry, petrified, and have no idea what to do.  You are either just diagnosed for the first time or your disease has grown and you had no idea. 

1.   Get a paper ..pen...Ipad...etc..whatever and make a list of what you are feeling..please do it in list form.

2.  Your second list will be what you need to do for yourself now.  Also keep to list form. 

Examples are on the emotional list...

1.   I need to find a way to cope with my worrying and crying a good part of the day...how can I help myself?  What could I be doing differently?  Am I alone too much of the day?  How could I remedy that?   What group could I join or activity could I do? 

As I said earlier in my own care I began conga drumming at the local cancer support center in 2002.   It was amazing.  I also joined an in person support group and a couple of those people I still know today!

Examples on the to do list....

1.   I need to meet other folks with a similar situation to my own...how do I do that?   I need to research my illness.  I need to organize my paper work and finances.  Need to review my health insurance ...etc

Get an accountability partner that you talk to everyday...this is not someone that you complain too...this is someone that reviews your "to do" list with you and helps you to accomplish your goals.

My goal for you is that you the patient, do as much for yourself as possible and then be able to ask for help when you need it.  The sense of control and accomplishment will help you help yourself and others as well.

Happy Sunday!   Step up...step out and get out of your head!

Friday, July 18, 2014

Cancer Survivorship,,,The Best Advice that I Will Ever Give on Living Well

Next month is my 13 year anniversary of my very first diagnosis in August of 2001.  In August, I actually did not know that it was cancer yet.  I just knew that I had a large tumor in the back of my pelvic area...a retroperitoneal mass.  It was after the surgery and the pathology that I knew.  I cried for days.   I was 44 years young and had 2 daughters just 11 years young.  I had just gotten divorced and bought a house.  I cried for days.   Then I picked myself up and started looking for help.

I had no idea that cancer would be this huge in my life.  Here is my best advice.

1.  Upon diagnosis you have no idea if you will live or die from this.  I would assume living...even in the worst case scenario.  Thinking that you will live will really help you to LIVE.

2.  After the initial shock wears off begin making sure that you have the best care for your particular cancer.  Make sure that your oncologist has seen many, many, many, people like you.  And research that doctor.

3.  Gather proper support for yourself..... Family, friends, and possibly a cancer support community where services are free.  Anyone complaining and/or crying more than you, please tell them to go away and come back when you are better...or they are better.  Now is the time for wonderful people around you.

4.  Develop a very thick skin.  People will say and do stupid things around you now.  It is ok...they are freaking out as well.   Hug a lot when you can.  Hugs are amazing.  People you love may leave you at this time.  Let them go and find new people.  They will come. I promise.

5. Get your finances and your paperwork in order.  Make sure that you understand all of your insurances.

6.  Make sure that you have designated emergency people...people that you can call anytime day or night for help.

More in the next post....most important to not forget to laugh ....watch funny movies...pick up a new hobby....I started conga drumming.  Every time I banged that drum, I was killing a tumor. :)

Thursday, July 17, 2014

Cancer Survivorship..The Truth About Coping Skills

This post is all about the truth in learning coping skills. It is not what you think or how you perceive it. Over the years people have said things like this to me... I am not you...I am not strong like you...I do not think like you. I can not do what you do. I was not born that way.

 As a person that has facilitated support groups and just helped lots of people develop coping skills I say bullshit to that and here is why. 1. People that learn great coping skills still have bouts of sadness. They cry. They laugh. They grieve. They play....they have joy. They know that it is OK to show every emotion and still make life go on. Being strong does not mean that you do not show all of your emotions. I cry...I am scared... It is what I do while experiencing those emotions that count. 2. This whole happy thing all of the time is silly. Happy is not something that you will arrive at one day. Happy comes from deep within your soul and your mind and helps you learn how to cope. I am talking about the inside happy...not the outside :).. 3. All coping skills can be LEARNED. That is what we do in support group. We teach people coping skills. I have seen this time and time again. People from all walks of life newly diagnosed come in crazy ...and I mean crazy. Then the process begins of calming them down and teaching them very defined skills. And little by little I have had the extreme honor of watching this metamorphosis ....this once insane person becomes this amazing, strong patient advocate for themselves and others. It does not work for everyone.

Some people prefer to stay angry and sad rather than strong and capable. Which person will you be? I am strong because I choose to be. It does not mean that I am a rock. I still need help from time to time...I am just like you...I just learned skills to carry on in a great way. Step up...step out...get out of your head and take care of yourself :). I believe that I have other posts in here on coping...after 600 posts I do not know where it is! xoxo

Wednesday, July 16, 2014

Cancer Survivorship.... Making a Plan...Adapt, Change and Cope

I know many people that have cancer all over the place like me and we are concentrating on living and making a plan. Making a plan gives you a sense of control over the uncontrollable....and it makes me laugh as well. I have been in this position before and next month is my 13 year anniversary of doing this crap. I know I will die from this someday. Can I get another 13 years out of this? I do not know. I am trying. My thoughts are like a pendulum. They swing back and forth fighting the negatives and focusing on the positives. The battle rages in my heart, soul, and mind. The positive is winning today. It will win tomorrow as well. It is not medical that is the most difficult to plan. I know how to do that without thinking too much anymore. It is life in general that is difficult to plan when you want to do A and your body says ..."no...you are doing B!"...lol... and you do not like "B" at all. :) TO "B" or not to "B".... And then sometimes there is a compromise and "C" comes along and it is not as bad....so "C" it is. People have said...."At least you have a plan!" Silly...there never really is a real plan...there is only and the day ....waiting to see if A,B, or C is coming along and then you just do the best that you can...a plan....LOL...being able to adapt....change...and then cope...is the real plan!!!!! Speak up...speak out ...and get out of your head!

Tuesday, July 15, 2014

Cancer Survivorship...Your Medical Records

When was the last time that you looked at your own medical records???    You should always have a copy of your own records especially if you are healthy.  Here is why.

1.   Underwriting for any kind of insurance.  This is includes...medical....life...disability.  Why?  Your records and how they are worded determines the price that you will pay for the insurance...if you qualify.  And you may not think that certain issues will affect price however they do.  Here are a couple of examples...

a.   Do you smoke?   We all know how stupid it is to smoke at this point however if you smoke and have asthma it is an automatic decline for long term care insurance...disability...life.

b.  Are you grossly over weight by insurance standards?   If you are you will pay quite a bit more and be restricted in what you may purchase for all insurances even if that is your only issue.   I know you have a right to look exactly how you look however being grossly over weight is a true health hazard.

2.  Is there something in your records that should not be there or is written incorrectly?   This happens often as well and can influence everything.   An Example...Years ago I had a client applying for long term care insurance and his records stated that he had issues with his arteries and he was a smoker so this was crucial.

He swore that it was not true and he had no idea why the doctor wrote this.   I had him see the doctor and go a for test to prove that is was written incorrectly. We then were able to get him his coverage of which he is using today. In today's times you will see your doctor for approximately for 20 minutes at your appointment. She or he is not the navigator of every aspect of your care....you are. The doctor is in a rush to see as many patients as possible within a specified time. They would like to practice medicine differently however most will tell you that times have changed in that regard. Speak up and out of your comfot zone...this is your life!

Sunday, July 13, 2014

Cancer Survivorship....Medicare Info...Important!

Very important....Medicare only pays for in full 20 days of skilled care nursing unless you are doing rehab.  After that they pay a small percentage up to 100 days only in skilled care nursing.  They pay for no home health care having to do with the 6 activities of daily living.   Those are eating, bathing, mobility, dressing, toileting, and continence.   Medicare does not pay for any long term care services that you would need to live in the home.  This includes dementia as well.

Many people are taking care of themselves or others and think they are covered and then shocked to find out that they are not.....here is the other shocker that Medicare does not tell you....if you enter the hospital .....you must stay 3 whole days to get the skilled care nursing benefit of the 20!days in full!!!!

Stay there the three days!!!!!   Learn the rules of your healthcare policy and then prepare.....way before anything happens and you loose thousands of dollars...and more!

Thursday, July 10, 2014

Managing Your Care All By Yourself

I always say you are the President of your care.  Your doctors are the cabinet and thank God there is no Congress :)...or you might die due to lack of decision making and too much fighting!

Lately I feel like just the President of my care...My cabinet does not have much to say and a Congress would still be a waste of time.   I need some new players in my cabinet I believe...happens often in the land of sarcoma.   They want you to go one way and you want to go another. 

So here I go after 13 years off to a second  and third opinion regarding the path that I will choose to take.

Just once I wish that I had a Vice President!  :) My scar is not healing well and I miss swimming...The gym is not really for me.  

The days pass quickly and sometimes I get a lot done and others I find myself just wanting to do something mindless....and I do :).   I will be a guest on a radio show on the 25th.  I will post more on that in a separate post.  It will be fun and educational.

I wish that I could pack a little back pack and fly all over the US...one day :)

Monday, July 7, 2014

Cancer Survivorship...2009/2010/2011

Please go back to the beginning and read old posts.....there is a lot of info there as well.   Unfortunately in cancer... Not much has changed!!!!

Sunday, July 6, 2014

Cancer Survivorship...More On Time and How You Spend It

With every medical issue comes the evaluation of your time and how you spend it....and how not to waste it without making yourself a little crazy because as we all know every moment can not be precious or well spent.

If you are a regular reader you have seen the prior post on spending time with people that matter in your life and not those that suck the life out of you.  I have already got that handled.

How do you be normal in time spent knowing that it might be limited by more illness? How do spend your healthy time?   And how do you spend your not so healthy time?

I do realize that I have spent way too much time on social media. I do realize that I have spent too much time contemplating my fate...both good and bad.  I have also spent too much time just being frozen by my circumstances.  I have no time to be frozen.  I was not even worrying...I was just frozen.

So enough of all of that.  Whatever my norm is for this go round ....it is time for me to find it....however long it will last.

It is easy to find meaningful reason in life when you are healthy.  It is not so easy when the enemy called cancer is stalking you....one body part at a time. 

I will open a you tube show next week on patient advocacy.  I will let you know when it is up.  I am not going anywhere for a long time.  And I am not going quietly...at all. :)


Cancer Survivorship...Cancer and Social Media

Social media is not the same as seeing someone in person or even talking to them on the phone.   It definitely has its wonderful place in communicating with others however it is not personal and does not replace real human contact.  Here are some tips for both the ill person and those wanting to check in with that person .

For the person that is not feeling well...

1.   You know I am blunt and it has helped me over these 13 years.  I feel better about myself when I am not well if I speak up...I have said to people... Call me...come see me...if I don't call you back right away please call me again...I am not 100 per  cent and I may have forgotten. Do not give up on me so fast.  

2. Give your friends and family a break...they may not know what to do.  Give them something to do...Can you bring me some chicken soup when you come visit on Friday?  Can you help me do my laundry...ask and then just say thanks !

3.  The people in your life that do not want to see you or just like your photos on Facebook...you have to let them go...I am not talking about just Facebook friends...I am talking about people that have been in your life that you know personally...possibly your entire life... Let them go if they think that social media is a personal form of communication.  It is not.

4. Lastly...give yourself a break.  If you can seek out people in person...there is no substitute for a hug and laugh with lovely people around you.

Checking In With a Person that Is Not Well

1.  Pick up the phone and Call....if they do not respond try again another time or call someone that knows what is going on.  It is not the same as an email or like on Facebook.  There really is no excuse  .....the only excuse is that you have chosen to not be in that person's life and that is OK as well.

2.  You can say call me if you need me and that is fine...just keep checking in.  I love friends and family that are honest with me...once a friend of mine let me know what she would do (errands etc) and also let me know that she would never come to the hospital..ever...it gave her nightmares and I appreciated her honesty.

Spontaneity is wonderful .....I just happen to be in the neighborhood ....can I come see you or do you need anything from the store?

3.  Social Media is great for business, researching, asking questions, gathering information, making new acquaintances ...understand at the end of the day...you have not shaken a hand...hugged anyone  or laughed with anyone except yourself!  If you can get out if the house.

If you can not go alone...can someone pick you up?   If you have no place to go ...perhaps a cancer support center where they have free classes and support groups.  I used to go and now I teach there.

Cancer is not about retreat....it is about moving forward in,life despite terrible circumstances...speak up...speak out... Get out of your head and your house.

Thursday, July 3, 2014

Cancer Survivorship...The Art of Procrastination..and Treatment Plans

I have been stuck...I admit it and oh so rare for me.  I did just have another major surgery 3 weeks ago however time melts away quickly and mine for sure is quite limited. Maybe that is why I wasted some of it.  I had to know that I could :).   No more.  I really can't.

Maybe I did not really waste it.  I have been doing much thinking about so many critical plans and trying to make the right choices.  There are many choices and no guarantee on any of them working.

I am not cancer free at the moment and the likelihood of that happening again is slim.  I know not how to keep this stuff from growing anymore.   Is it time to go crazy alternative, meditate, and pray...or is it time to declare war on my body with a liver ablation, radiation, chemo, or surgery.   I see the doc next week to discuss.

I am having trouble finding me.....not in the way that you think...I am quite confident in who I am...I just can not figure out how to fit in my own life anymore...maybe because I do not like my life at the moment.  After 13 years this whole cancer thing is getting old.   I want to do something else!

I believe doing something crazy fun is in order.  Before the next medical adventure!  I have been receiving requests for a lot of info on advocacy.   I will get back to it!   Happy 4th.