PWW Captains Blog 02.14.15

Update...

Had an ultrasound on 02.13.15 and the technician said "you are full of fluid!, you know, we can remove that for you?" 

My response was "Yeah, I knew I was not pregnant... "and "no, I did not know it could be removed".










After the ultrasound, I headed up to the oncologist's office and spoke to the nurse about having the procedure. She met with the doctor, who reviewed the ultra sound report and agreed, I was a good candidate for this procedure, called Paracentesis. The fluid is called ascites. Damn.. now I have to learn all these medical terms. There was a reason I did not go into medicine. My memory for terms, kind of sucks. 


This is from a page about paracentesis:

"There are two reasons to take fluid out of the abdomen. One is to analyze it for diagnostic purposes; the other is to relieve pressure. Liquid that accumulates in the abdomen is called ascites. Ascites seeps out of organs for several reasons related either to disease in the organ or fluid pressures that are changing. Read more: http://www.surgeryencyclopedia.com/La-Pa/Paracentesis.html#ixzz3Rm4aODDb  "

My procedure was scheduled for Friday the 13th at 10:15 a.m. I was a bit anxious, due to the idea of someone sticking a needle and tube into my gut and sucking out fluid. However, I was very excited about the idea of getting the pressure relieved.

The sonographer (ultrasound technician) was a very sweet young lady. We chatted and I asked her a lot of questions about the procedure and then tried to relax and talked about her family. She was from Vietnam and had the most beautiful captive eyes. When I told her that I they were beautiful, her whole face lit up and she was shocked.. she kept asking "me?? you think I have beautiful eyes??!!" It was rather charming. She was so humble and excited at the same time and said I made her day.

After she took some images, the doctor came in to perform the procedure. He did not wear scrubs, which I thought was odd, nor did he have on a lab coat. Oh well. Young doctors. He explained the procedure in more detail. They saw that most of the fluid was on my left (near the ovary and tumor). He poked me with lidocaine to numb the area.. but when he tried to put in the catheter yelled. So more lidocaine and then it all went smooth.

The technician had brought in a case of 3 liter glass jars to collect the fluid. The tube was connected to the fist jar and it soon filled with a nasty liquid. I will spare the details.  Within 30 minutes, they had drained out  3 and 1/2 bottles. That was 7 liters of liquid! 

Oh My God!.. I was carrying around SEVEN liters of liquid.. no wonder I could not stand, or bend or walk.. 

My belly has been sore, but I feel so much better. I finally got a great night of sleep. Sigh.. what a relief!


Update... 02.25.15

Went to another clinic and they found more fluid had built up ~ revoved an additional 3 liters.. yuck.. that was 10 liters of nasty cancer cell filled fluid called Ascites

PWW Captain's Blog. 02.10.15

Before going to the oncologist appointment I researched what to ask. I turned to my support groups for help. I am so glad I did. I took my trusted notebook and husband too, and we met with the medical oncologist for an hour. He gave us the big picture.. one of the things he said is that cancer CANNOT be diagnosed without tissue biopsy.. he said

"Tumor is rumor, tissue is issue!"

So, until more tests are done.. we do not know what we are fighting. For now.. I take one step at a time.

Yes. they did find a mass.


Yes. it is affecting other surrounding areas.


Next step:

Pick up film from urgent care (no, they did not send images)
Get blood draw for more tests, including the CA125 (may indicate o.c.)
Get vaginal ultrasound
Fly to Los Angeles to be with daughter (she is having surgery and needs to see her mommy)
Get unconventional ultrasound and biopsy of tissue.
See OHSU gynecological oncologist next week (19th)

to be continued....

PWW Captain's Blog, 02.06.2015

I had a lot of abdominal bloating and pain, I had seen several doctors and things were just not getting better. The pain was getting worse and I could barely stand up. I drove myself to the urgent care and they did some blood work and CT scan and told me that I had some issues with ketone and ketosis.. I shrugged my shoulders and thought it must have been the effects of a non carb liquid diet.

I was bloated. I was nauseated. I had pelvic pain. I had urinary urgency and bowel changes. I had back pain.

The doctor told me to make an appointment with a gastro specialist and said she would call with the results of the tests.

Little did I know...

A few hours late, my life turned upside down.

I got a call from the urgent care doctor telling me these words (I kid you not!)

"Valerie: I have some bad news for you, you have ovarian cancer and it has spread. You need to see an oncologist right away!"

I NEVER in a million years ever thought I would get cancer... it does not run in my family.. and then I found out that 15% of those that are diagnosed with O.C. do not have family history of cancer...

I then looked up the symptoms... and guess what? Yup.. I had the symptoms.

Next steps

1. make appointment with oncologist
2. stay calm
3. tell family
4. research
5. find support
6. breathe

I got on the phone and made an appointment for the 20th.. SEEMS LIKE FOREVER! 

I called a friend and work and asked.. "How do I tell my family"

I called/texted each of my family members.

I went online and found an ovarian cancer support group (was a great move)

I took time and laid down and did some meditation... 

I resolved to fight this.. whatever it was. 

Oh, yeah. I cried too. 

PWW Captain's Blog. 02.06.15

My newest passion... fighting against a tumor .. one suspected of being cancerous. Yes.. the BIG "C"

Not only Cancer, but most likely Ovarian Cancer... I got this! I am a Pirate Warrior Wench!

I have been fighting all my life, fought to leave the streets, fought against abuse, fought against muscular dystrophy.. and now, for the most likely biggest battle, I will fight this cancer.

Mote it be!
PWW
(Pirate Warrior Wench)

My life in music continued.

The year, 1955. I was one year old and my mom was most likely still recovering from the new surprise in her life. It was not the norm for a 35 year old woman to give birth. Usually they were done before they hit 30. My dad was winding down his career at the New York City fire department, he would have been there 23 years at that point.

My mom did give me the gift of music. She loved to play the old record player and would sing along to many a song. I wonder if she liked this song. Unchained Melody. I never knew that it was a big hit in 1955, my introduction to that song was much later, when it was the theme song for Ghost.

Unchained Melody by Les Baxter Orchestra

In 1955 I had a few older siblings, my sister Dale would have been 5, Ron would have been 13 and Cindy would have been in her mid teens. I am sure that Cindy was listening to rock and roll. She was such a rebel. One of Billboard's biggest hits that year was Rock around the Clock with Bill Haley and the Comets. I could just picture Cindy dancing around the house... and wonder what my mom and dad thought.

Rock around the Clock Bill Haley and the Comets

The year was 1954 and this was a big hit.. Mr. Sandman by the Chordettes. This was the year I was born. I wonder if my mom sang that song while she was pregnant, or if she sang it to me to try and soothe me if I was upset. I know I have always loved this song.. maybe it is buried in my memories of a time long ago.,..

Mr. Sandman by the Chordettes

In search of the perfect match... a professional one.

Building a website.. oh my!

I have a much greater respect for those that spend their lives building websites. I have been working on creating a professional site that resonates with me. Not an easy task. I am finding it difficult to give up perfectionism. Maybe that is why people hire others to do this?

For today I have a start. I have a new domain name.. in fact I think I have a half dozen. I could not settle on just one!

ValerieFriesWade.com

Has a ring to it.

Here is the rough draft:

Visit my new website

I am hoping I can migrate or feed or somehow connect everything in one place. Is that too much to ask?

Here are some images that did NOT make the cut for the sake of loading time

More to come!

World Homeless Action Day.... get involved.

Here are links to articles I have written while at IRWA:

How to manage across generations

Six ways to advance your career

Change your job or change your attitude?

The tie that binds or why you need to belong to an association.

My path of professional development.

Work life balance.

A life worth living...

I mentioned that I was able to transition to a life worth living.. when I left the streets so many years ago. Yet there are so many people that go through the motions of life and never really live. I came across this post today on another blog and really liked the simple message:

YouTube video of my presentation in St. Louis at ASAE's annual meeting:

Are you writing the story of your life, or are you letting other people and circumstances write it for you? You might not consider yourself a follower, but here are a few signs you aren't in control:

You don’t like your job – Maybe you picked something because it was easier or safer than your ideal career. Worse, maybe you’re just doing what your family pressured you to do.

You’re living paycheck to paycheck – The problem usually isn’t money, but your priorities. It isn’t hard for the stuff you own to turn around and own you.

You feel obligated to do things you don’t want to do. Your first duty is to yourself. You can’t save the world while you’re miserable.

Leading your life isn’t easy. It means freeing yourself from many different assumptions. That freedom can be initially terrifying and painful, which is why so few people do it. It is far easier to just follow the assumptions of society, even if it leaves you unfulfilled.

Here are 7 rules that can help you start building a life worth living:

Rule One: Never let another person dictate the terms for living your life.

Not your parents. Not your spouse. Not your kids. Leading your life means you can accept the input of other people, but the final decision is yours. This means that career choice, relationships, beliefs and way of life are to be judged by you, not anyone else.

This rule holds especially when you have doubts. Don’t let your moment of doubt become a weakness to be exploited by others. Not sure what you want to do with your life? Don’t sit passively and let other people decide for you.

Rule Two: Don’t allow yourself to be chained by consumerism.

The world is filled with stuff. Don’t let stuff get in the way of what is important. When you become chained to your stuff, you are no longer leading your life. Ask yourself: if you had to give up 90% of your net worth tomorrow to pursue your dream, could you do it effortlessly? If you hesitated, perhaps your ability to lead your own life has been weakened by your attachment to stuff.

Rule Three: Rule money. Don’t let money rule you.

Money is a resource that can be applied when leading your life. You can use it to reduce discomforts, focus on meaningful work and apply it to help you learn and improve. But if you’re living paycheck to paycheck, the money is in control.

Here are some goals to put yourself in a position to rule the money in your life:

• Maintain one year of emergency funds in the bank.
• Your lifestyle should expand at a slower rate than your income grows.
• Be able to drastically reduce your expenditures if needed.

Financial freedom doesn’t mean the ability to buy everything you could desire or live in luxury. It means that money becomes a tool and not a distraction in leading your life.

Rule Four: You come first in relationships.

Do you know people that can’t stand being single? They get out of one bad relationship only to jump into the next.

Why? Because they put too much of their needs dependent on that other person. Without emotional and possibly financial support, they can’t survive.

In any relationship you need to be the person that comes first. That means that while you might enjoy the relationship, it doesn’t become the major purpose in your life.

Your purpose and leading your life must come before any relationship you enter. The surprising fact is that when you do this, you are able to have healthier personal and intimate relationships because there is no need for jealousy or possession.

Rule Five: Never outsource your thinking.

“You can split up food between men, but each man must digest it individually.” – Howard Roark in The Fountainhead.

Leading your own life means leading your own beliefs. It means never accepting anything unless you can filter it through your reasoning and find it to be true. Think critically about everything in life. Chances are there are a lot of indigested thoughts floating around trying to bypass your mind and go straight to your gut.

Rule Six: Anything you lack can be trained.

Never accept a fatalistic view of life. So you’ve been told you lack the intelligence, willpower, strength or charisma to do something? Ignore them. So you’ve told yourself that you lack the talent? Ignore yourself.

Begin with the assumption that anything can be trained and you’ll find few exceptions. I used to be a shy, introverted kid. Recently some friends described me as an extreme extrovert, being unafraid to meet new people and having honed my abilities to speak in front of crowds. Begin with the belief that you have no idea where your talents are until you train them.

Rule Seven: Purpose comes from your creative faculties.

Want to know what your purpose in life is? Simple. Hold your hands in front of you. Now look at them. There is your purpose and means to do it.

Purpose is your ability to take the creative energies you have and communicating them with the world. You and I might pick different mediums, but the act of purpose is exactly the same. You could be a manager crafting the art of dealing with people, a programmer crafting the knowledge of algorithms or an entrepreneur crafting the art of a business.

Don’t worry if you haven’t found the right medium. Once you feel that great purpose for your life and it comes from within, that is your greatest asset. With that belief you are the leader of your own life.

Website Source: A life worth living....

Changing the perspective of homelessness.

I attended ASAE's Annual Meeting in St. Louis earlier this month. It was a huge milestone for me. Not only did I get to walk on stage to be recognized as a new Certified Association Executive (CAE), but I got "naked" in front of 250+ people. Not really naked, but I sure felt naked. I revealed my dark past and let it be known that I was homeless. I had the stage for five minutes and when I was done I felt overwhelmed by the standing ovation and tear streaked faces that filled the room.

I broke down.  

My former supervisor came up to me, eyes red from crying and he reached out his arms and pulled me tight.. telling me how proud he was that I was able to talk about this. He has always told us that he did not want to be a father figure, but in my mind.. he was at that moment, my dad. Giving me the support and understanding that I never received during his life.

My own eyes filled with tears.. tears for the innocence lost, tears for the pain that remained buried for so many years, tears for all the lost souls still in the streets.

I made a vow to myself that day: I will repeat my story as many times as it takes and I hope to change the perspective - not only of those that look out at the homeless, but of those that look in the mirror and see the face of the homeless.

We need to give a hand up - not hand outs.

I am coming out of the closet at ASAE's Annual Meeting!

It's official. I am going to be leading a presentation at ASAE's Annual Meeting this August. It is in  will be leading an Ignite Session on the topic of homelessness. Specifically: Homelessness does not have to be a life sentence: One Success Story.

You might wonder why I have a passion for helping homeless. Well, you see - I was once homeless. So, the basis of the story is that it is MY STORY!

Check out ASAE's Ignite!  sessions.

Some inspiration from a man that discovered passion after personal crisis

Subject: Some inspiration from a man that discovered his passion after experiencing personal crisis

I wanted to share my new goal with you - I have decided to help a young man I met in Colorado last month. Alexey Talai is a dynamic and driven young man who is on a quest to bring wheelchairs and services to the disabled children and orphans of his small Eastern European country: Belarus. Alexey also happens to be a quadriplegic amputee himself.

When Alexey and I sat down and talked last month, he told me how when he was brought back from the hospital he was "planted" on a couch, just like a "flower". His family watered and fed him, just like they would to care for their other plants and flowers. He sees the disabled children in his country facing that same stigma. No way to gain independence. There are no chairs for disabled in Belarus. There are not even accessible buildings. Belarus is only 100km outside of Chernobyl. There have been many birth defects, as you can imagine, as well as injuries caused from left over land mines.

I honestly feel compelled to assist Alexey in reaching his goal to get chairs for the children of Belarus. I have made this my personal goal for this year. I have been reaching out to local connections to try and find one which Alexey can partner with. I contacted the Executive Director of Wheels for Humanity and have begun the process of bringing Alexey to Los Angeles to solidify a partnership agreement. If that agreement is executed, we will only need to raise $50,000 to bring 200 custom fitted chairs and other durable medical equipment to Belarus.

Right now Alexey is touring the East Coast speaking to various groups to raise awareness and to gather assistance for his quest. He has a phenomenal spirit and one of the most inspirational people I have met.

One of the local papers in Texas featured Alexey in a recent issue 

(http://www.yourhoustonnews.com/cleveland/news/article_79d3616c-dfc8-53fc-b4c5-442b9b3e4604.html)

 and I wanted to pass this on to you. If you know of any audiences that would benefit from his speaking, let me know. His goal is to raise awareness of the plight of the disabled children and orphans in Belarus. You can read more about Alexey's dream on his website: http://cafeindependence.webs.com/

I attended an abilities exposition and conference this past weekend and was able to meet with a business owner from Northern California who has a warehouse to store chairs until we can get them deployed. This business owner has been actively helping the disabled left in the aftermath of a war-torn Afghanistan. He owns a few dealerships and has promised me a loan of an accessible van so I can transport Alexey when he is here.

I met with the publisher of a magazine which focuses on active disabled, and he would like to run a feature story on Alexey.

I have also called my alma mater - California State University in Long Beach and spoke to the director of their disabled services program to try and schedule Alexey to come and speak to the students. CSULB has a student body of over 35,000 students.

I am very optimistic that we will be able to do this over the next year.  It is funny how before I came out of the closet about my own disability I tried to not even think about my disability or about others with disabilities. I viewed my disease as a condition. Now I see it as an opportunity.

If you know if any speaking opportunities for Alexey, please let me know.

  Best regards,

  Valerie

         

-- 

Are you going to renaissance faire

Without laughter, life can be so boring. I participate in Renaissance Faire as a re-en-actor. To say I love faire does not fully express my feeling - I would have to say it is one of my primary passions.

This ode was created for me by a woman I met on FaceBook. We share a common bond. We both have  FacioScapuloHumeral Dystrophy (FSHD). This happens to be the most common form of muscular dystrophy, but lucky for us, is a very slowly progressing disease. My friend created this montage from photos that I have on my FaceBook account, and wrote very creative lyrics to describe who I am.

I am in awe of her talent and wanted to share this here.

Enjoy! 

Fighting the darkness of indifference

Without passion life becomes indifferent. Sometimes we have to fight off the darkness to maintain our hold on light. Today was one of those days. Today I had to reach inside and find a glimmer of hope to hold onto.

The song that comes to mind when I think of indifference is Eleanor Rigby, by the Beatles. Eleanor clearly is missing passion in her life, which I believe is the norm for our society. We give in to the darkness instead of allowing the light to take over.

I must experience passion in some form at least once a day. Today's passion was fleeting, but at least it was there. I realized that I have been less than my normal optimistic self these past few days. I found myself barking for no apparent reason. Today I stopped and took a look at what I was doing. I saw who I was affecting and realized I needed to rekindle the flame. 

I set out on a quest to find something to get lost in. A worthwhile project, or even one that would just devour my time. Of all places, I found it at work. Earlier this week I decided to develop a training program for my staff. My goal is to engage, empower and develop a culture of innovation.

I am basing the training on self assessment using the Myers Briggs Type Indicator in conjunction with using the theories and practices developed by Stephen Covey in his book: 7 Habits of Highly Effective People. 

It was quite exciting to see the energy created the team as I led them through a series of self assessments as well as a group exercise. The synergy released in the group was exactly what I hoped for. 

This was my first attempt to develop this type of training and I must confess that I was exhilarated after the session. 

I even decided to be brave and sent out a satisfaction survey to my staff to determine effectiveness of the training. I love using Survey Monkey. I had the results within a few hours of sending the link and was able to adjust my next training segments in response to feedback received. I have committed to developing and conducting a 10 week series of 1 hour training sessions. I think I may have found another outlet for passion: teaching.

Next week we embark upon the first habit: being proactive. 

Stay tuned!

Off to the Windy City

I spent most of the night packing for a business trip... I leave for Chicago at the crack of dawn tomorrow morning. I am one of those "anxious travelers". No, I am not afraid of flying, I just want to make sure that I have everything I need.

I will be trying out my new laptop carrying case for the first time. I am going to test the theory of using a sleeve instead of a backpack. At least this is only a 3 day trip. Hopefully it will not be an epic fail.

It is hard to think creatively when I am struggling with the left side of my brain to recall all that needs to be done.

Maybe after a Guinness and a cigar I will feel more relaxed...

Comfortably Numb

I have not found a better antonym for passion. I have spent many days, if not years, living in a state of "comfortable numbness".



Living a life lacking in passion. There had been a time in my life that I did not listen to music. I had no radio. I had no stereo. This was all by choice. I had made an unconscious decision to withdraw from life. I was trapped in a world of darkness and despair. Such is the life of someone living in depression. A life devoid of passion.

How ironic.

That was another lifetime ago. Gratefully, I cannot fully remember those days. Maybe I just blocked them out. Regardless, I choose not to dwell in the past, but to live life to the fullest. Today I choose passion.

Today's passion reminder was music. I am one of the older generation who happens to still listen to regular FM radio (at least in my car). I know, the sound is not great and I have no control over the playlist, but still.. there is something about radio broadcasting that is very special.

Maybe it is because I hear the passion of the DJ's? We do know that passion is contagious.

Maybe it is the anticipation of what song will play next? We all like surprises, right?

Maybe it is just a reminder of days gone by... the way things used to be.

I had my music. I had my passion fix for the day.

Happy Birthday to Me

Today is my birthday, and as a dear friend of mine once stated, she and I are "Plenty-Nine" and holding.

I love the concept of agelessness. However, I have a great appreciation for the knowledge and wisdom that can only come with living each day of our lives to the fullest.

I have met some 15 year olds that have more wisdom than others that are 30. Just because you pass time on this planet does not mean that you are learning anything.


Today is my birthday and I will stay on the soapbox as long as I can.


Just kidding.


Actually, what I wanted to talk about today is birthday traditions. I used to get so excited about the family serenading me around a colorful birthday cake set all aglow with a plethora of candles, and of course, the presents.

What child did not love to admire the stack of presents brought over by friend and relatives. I remember thinking that the more you were liked (or loved) the more presents you received.

As a child, those were some of my best memories. No, not the presents.  The events.

Actually, when I think back, I cannot remember even one of the presents I received on any birthday.

But those memories!

Decorated back yard. Funny hats. Cardboard horns. Pin the tail on the donkey. Brightly colored plates and matching napkins. Homemade cake. Giant tubs of ice cream. Pancake breakfasts the morning after a sleep over.

I can even recall a particularly happy celebration. I was wearing white peddle pushers topped with a block printed triangle blouse and of course - the colorful foil and fringe hat. My mom had made the perfect banana cream cake. Back then, we never had store bought cakes and I am so glad of that fact. No one made a cake like my mom.

I still have a photo of that moment. The one just after blowing out the candles. I was so proud. My dimples emphasized my sheer joy. Again.. I don't remember the gifts, but I do remember the experiences and am very grateful for those cherished memories.

So, this year, when my family asked me what I wanted for my birthday I had one simple answer:

I want a memory.

I chocolate cake would not be a bad thing either!

My husband's passion (other than the passion for me) is writing. He has written and published two fantasy adventures (suitable for young adults too!). You can check it out on Amazon.