What is Discovering Hope?

Discovering Hope is a journey of personal advocacy, a quest to reclaim our life by making the most of every moment.

What is Personal Advocacy?

Personal advocacy is hard, often it’s heart breaking, and it can feel like a nightmare. When outsiders look in all they see is the disease, they miss the horror on the peripheral. These visitors know we are in pain, but the totality of our circumstance is beyond them. They might not grasp the financial woes, the loss of identity, the struggle with fear and sadness. Maybe they don’t know what it’s like to fight for the right doctor, battle insurance companies or cope with the after effects of treatment. It doesn’t mean they can’t understand. If these visitors are your friends help them help you. Give them an idea what its like to live life for a day in your shoes. Share your feelings and thoughts, face those inner demons and reconnect with the people you love and love you.

Unfortunately, the troubles do not end where our friendships begin. The greatest adversaries I’ve faced in this journey has been close friends. Ino abused and took advantage of me during chemotherapy and Pea Weasel robbed my house, vandalized my home and threatened to kill me. Both were people who used my situation to their advantage for their personal gain. We must keep at least one tired, sleepy eye open. There are enemies everywhere, even within, but there are even more monsters outside.

If you are sick you will attract the desperate. You are a meal ticket just waiting to be cashed in. MLM, life coaches, gurus and alternative medicine advocates are naturally attracted to us. Some of them do believe their pre-scientific methods can help, while others see the venom in the snake oil they are selling. Ignorance is a disease and these people facilitate its spread. The best way to stop its infection is to vaccinate people with knowledge.

This website is geared toward personal advocacy, hope and critical thinking. I believe these tools help us live a higher quality of life whether we’re hurt, healthy or sick.

Fight Abuse – Boundaries – Personal Advocacy

Abusers are thieves plotting to steal what we need. They feed us spoonfuls of bullshit to veil their taking as giving. Their agenda is to weaken our walls with the goal to gain access to our soul.

Ordinarily life is pretty damn hard. When we get sick or injured it gets even more difficult. There are people in the world like Ernest the life coach who teaches people their pain is their fault. They instruct us that our anger is the reason we are ill and if we wanted to heal we would.

Anger and heart break are healthy feelings. They help us cope with change and trauma. Without exploring anger, we would never be able to grieve anyone or anything we’ve lost.

When I was going through chemotherapy I was told I shouldn’t be angry, sad or fearful. I needed to express my feelings but there was no where to vent it. Every time I tried someone would tell me I was wrong for feeling these negative emotions.

In my last month of treatment, I attended a group meeting at the Cancer Support Community. It was everything I needed. I was surrounded by so many insightful, loving and enduring souls. They were the first to give me permission to feel what I felt. As a result, the emotional acid of my heart stopped burning my insides, instead it started to pour out. Over time the hurt healed, and I relearned to live.

Its hard to give yourself permission to feel when we have people like Ernest in our life. Telling us we should never explore or express our anger or trying to convince us the only true emotions are love and fear. Having an Ernest in our life is like trying to light a fire with someone continually dowsing our flame with dirt.

If you’ve been hurt, feel what you feel. In this confusing world lets make it easier by accepting that our emotions are important and are a part of us. Treat them like little creatures who must be housed, fed and handled with care. As you experience each emotion, tend to it with love. Explore it with Hope, Wisdom and Forgiveness.

Our Boundaries are our Weapons

Abusers will insert subtle suggestions to slowly condition their mark to be more pliable. After the abuser has infected their mark the abuser can begin their assault. The manner of an abuser’s assault will vary widely. Some, like Pea Weasel and Ino might dismantle relationships and support systems until their mark no longer has control of their life. While an Ernest holds their cards tighter to their chest, playing a longer game.

Whatever their game might be, the best strategy to beat them is to not play at all. The most effective way to defeat an abuser is to make sure they never have the chance to hurt us. We achieve this by exploring our emotions and discovering what they need to feel safe. Then we look closely at our past to learn how to protect ourselves from the predators who hurt us before.

With this information we can begin setting our internal and external boundaries. We maintain these walls by keeping our vents open, loving our feelings and having the willpower to say no.

Fight Abuse

To fight abuse, we have to set effective personal boundaries.  We must draw a line in the sand and say “No, Stop, Do Not Cross!” We must have the force of will to stand up for ourselves without compromise.

An effective personal boundary is one that we will enforce at all costs.

Boundaries are proactive, not reactive.  A proactive boundary is one we’ve explored through introspection. We’ve poured concrete and stacked stone blocks to build fortified walls.

A boundary without introspection is unfair, offensive and dangerous.  If we are unaware of our boundaries we cannot protect ourselves from our enemies. We leave ourselves open to the assaults from abusers seeking to violate us and we also create circumstances where we might abuse others.

Those who have been abused have a hole in their defenses and the Inos, Ernests and Pea Weasels will always try to exploit it. Abusers are predators, once they find the weakest in a crowd, they start their hunt. Since we are their prey, we must develop a way to defend ourselves. The best way is to investigate ourselves and see where the hole is and how it got there. Knowledge is power, with this power we’ll plug this hole and prevent them from hurting us. This is achieved with effective personal boundaries.

Personal boundaries are the only way to end abuse.  If we don’t stand up for ourselves no one else will. Abusers will find us whether we are healthy, sick, young, old, hurt or healed. However, if we build sturdy walls, learn to say no and have effective boundaries we will free ourselves from the bondage of abuse.

Links

If you would like to continue the road of personal advocacy consider clicking on one of these friendly links.

Introduction to Boundaries

Help for the Abused

Caretakers – Personal Advocacy

Abuse – Personal Advocacy

Second Opinion – Personal Advocacy

second opinion

Second Opinion

You should always get a second opinion.  They say that opinions are like wiggly toes, some people seem to wiggle their toes more often than others.  Doctors just have really big wiggly toes, so when they move them about, we seem to notice and remember them more.  They also went to school to learn how to wiggle their toes, they are experts in the act of toe wiggling, some even see them as toe wiggling gods.

Toe wiggling and opinions are similar in that most everyone has the ability to wiggle their toes, if not toes then perhaps their nose.  What I know is that they call it a second opinion because everything your doctor just told you was his or her opinion.  Doctors are people, they’re human and during the course of their practice they make mistakes.  It’s important when we make mistakes that we learn from them, since doctors are still practicing they are constantly making mistakes, learning and becoming better healers.  By getting a second opinion you can reduce the chance that you become one of your doctor’s mistakes.  His mistakes may make him a better healer, but surely it will impair your quality of life.

Your Opinion

More than a second opinion, what is your opinion?  You have one, just like all the wiggly toes.  Sure your opinion might not be rooted in your doctor’s reality, but that’s fine, the only reality you can know is your own.  After all is said and done it is you and not the doctor who has to deal with the effects of his treatment plan.

In the quest for personal advocacy your opinion is the most important.  It is more valuable than a first or second opinion, it is more important than your spouse’s, your children’s or anyone else’s thoughts about what you should do.  You and you alone must make all of the sacrifices, everyone else can bow out at anytime.

The importance of acknowledging your opinion is that it does two things.  One, it reminds you that your opinion, thoughts and feelings matter.  Two, it ensures that you have made your decision with informed consent.  The last thing you want in this process is buyer’s remorse, especially when it comes to your life.

Links

If you would like to continue the journey of discovering personal advocacy feel free to click on any of these links.

Fight Abuse

Introduction to Boundaries

Cancer

Power Advocacy 3

 

Abuse – Personal Advocacy

abuse

Abuse manifests in many forms.  This was an actual statement made by my caretaker Ino while I was enduring chemotherapy. 

Abuse

It manifests in many ways.  The abuse of my caretaker began as manipulation, then became abuse, followed by exploitation and finally neglect. It was Ino who told me I couldn’t take care of myself during chemotherapy.  He was the one who put the fear in me to find someone to be my caretaker.  It was he who created the the problem and it was he who swept in as the hero to fix it.

A Story of Horror

I stood before the sink staring into the mirror.  My hair was in the steady process of falling out.  I was filled with so much sadness, so much terror, it was this moment I realized how much it was wrapped into my identity.

Running my hands through my hair I watched clumps of my head fur stick to my fingers.  I noticed Ino at the door peering in at me.”Whats the matter?”  he asked.

I turned and showed him my hands.  He paused for a moment, perhaps spending a second to the think before speaking.  “Man, You’re going to look stupid once all your hair falls out.”  Then he stepped from the door and headed into his bedroom.

Later than evening after finishing a bout of nausea and vomiting he and I were standing outside.  It was a cool slightly breezy night.  He pulled out a cigarette and slid it between his lips.  Nonchalantly he lit it and took a puff.  As he released the cloud of smoke he said.  “You know man, you don’t really have it that bad.”

I looked at him and watched him take another drag and exhale.  “If you really look at it, my life is much worse than yours…”

How did Ino become my caretaker?

Before I started chemotherapy “my friend” Ino told me that I wouldn’t be able to take care of myself during treatment.  He said I would be a danger to myself and if I wanted to survive I needed someone to live with me.

This terrified me, I had just survived the removal of my lung and I panicked.  I wasn’t about to endure that hell just to die because I didn’t have someone living with me.  Frantically I tried to find someone to be my caretaker on short notice. I found no one, and no one suggested I seek a professional caregiver for support. It was then that Ino flew into save the day.  He said he would be my caretaker if he could live and eat at my house for free.  I agreed and he moved in.

What was it like living with Ino?

Living with him was one of the most emotionally traumatizing experiences of my life.  He took a time of my life that was already unbelievably horrific and made it nearly impossible.

In the two months he lived in my house he loaded the dishwasher twice and changed the cat litter box five times.  He never prepared any of my meals, do my laundry or clean my house.  He charged me to transport me to the grocery store, doctor’s office and hangout spots.  The arrangement was that he would clean the cat litter boxes every two to three days, do my laundry, keep the house clean, prepare my meals and provide me transportation.   In exchange he could eat my food and live in my house for free.

What did Ino do while living with me?

  • Told me that I was weak and frail.  When I would attempt to go for walks he would tell me that if I went for a walk I would hurt myself – when  I asked him to walk with me he refused, saying he was too overweight to exercise.
  • He would insult and berate my friend Tony and his girlfriend behind their back.  Telling me that they were worthless and that I shouldn’t hang out with them.
  • Many evenings he would speak poorly of of my significant other and tell me that I should break up with her.
  • He would yell and scream at the animals.
  • On many occasions he said that I should give him power of attorney over me.
  • That I should write him into my will, giving him all of my assets.
  • When I was put on disability he made it clear that my disability money was ‘our’ disability money.  Often times he would attempt to persuade me to pay his car or insurance payment.

What made me realize Ino was abusing me?

Chemo brain is a very real thing.  It makes you forget things, you can’t think right and it puts you in a child like state.  This is what clouded my ability to see what he was doing to me.

This all changed one day when I asked him to drive me to the store.  He asked me for gas money and when I gave him $10 he got angry and demanded more.  Ino was furious, telling me it was insulting that I only gave him $10.  Stating that 90% of his driving was carting me around.

Instead of reacting at that moment I waited till I got home.  I started figuring out exactly how much money I was spending on him.  I discovered it was cheaper to buy a new car, pay its taxes and have full coverage insurance than it was to pay him for transportation.

Confronting Ino

After realizing his abuse I confronted him.  I told him that if he wanted to continue living in my home he would have to pay rent.  He responded by threatening to kill himself.  Then told me that because he was suicidal he could not pay rent.

I told him that he couldn’t live in my house if he was suicidal and said that if wanted to stay he would have to seek professional help.  I paid for him to see a mental health professional and after his first visit with them I told him that the rent was still due.

How Did it End?

I had not see him for several days and I was concerned.  There were many methods I used to contact him, but it wasn’t till this text message that I got a reply.

This is the text that I sent him:

“I haven’t heard from you in awhile, I am concerned for you and hope you are feeling alright.

Times are very hard for both of us right now.  I love you and I want you to be healthy,  I don’t want our situation to get in the way of our friendship.

I hope you are alright and are having a good day.”

October 29, 2016

He replied two minutes later in a text:

Please delete my number and do not contact me again.  Thank you.

October 29, 2016

Conclusion

Later that day I would find out that he had moved out of my house in the middle of the night.  I wasn’t there when he left, which I believe was a good thing. Nothing good would’ve come from that confrontation.

In the end I earned a lot from this experience.  Through him I discovered how to set and maintain personal boundaries.  It showed me how to recognize abuse and stand up for myself.  This was truly the very first step in my journey for personal advocacy.

Links

If you would like to continue the journey of reading the tale of personal advocacy take a look at these links.

Caretakers – Personal Advocacy

Help for the Abused

CSO – Personal Advocacy

 

Help for the Abused

abused

Help for the Abused

Those who have been abused need a safe place to turn to for help.  Anyone can be abused, it doesn’t matter what sex you are, what gender you identify as, who you are or where you come from.  We’re all human and when we hurt we need to be treated like a person, we need a loving, welcoming environment to nurse us back to health.

Many abuse resources on the internet will not provide this kind of sanctuary. They may paint themselves as a safe place, but they are wrapped in a blanket of bias.

Abuse is Gender Neutral

Abuse is gender neutral, consider avoiding any organization that uses gender specific pronouns or discriminatory language in their literature.  The people you turn to for support should be welcoming, free of bias and supportive.

If an organization uses the Duluth Power and Control wheel they cannot claim to provide gender neutral support.  This abuse model is designed specifically for women who have been abused by men.  It is a model that belittles the abuse of men by claiming they are minimally affected by the abuse of women.    This philosophy is sexist, a determent to equality and encourages the myth that men do not feel.

On the societal level, women’s violence against men has a trivial effect on men compared to the devastating effect of men’s violence against women.” http://theduluthmodel.org/training/wheels.html

I’ve been abused by several women in my life and it has caused irrevocable emotional damage to me.  I have been abused by men and it has caused an equal amount of damage.  Abuse is abuse, whether by a man or a woman.  It is abuse whether to a man or a woman.  We all feel, we all have emotions, we all cry and we all are haunted by the terrible things that have been done to us.

Any group that trivializes the abuse of anyone is deplorable.

Abuse Strategies

It can be advantageous to create strategies that target specific kinds of abuse. However, those advantages end when these strategies alienate an entire population.

To end abuse, we need to use critical awareness, overcome bias and realize that everyone can abuse and be abused.

If we made the Duluth Power and Control wheel gender neutral it would become a resource that anyone could benefit from.  It would be even more valuable if it spoke directly to the reader.

Example

Using Emotional Abuse

  • putting her down” would become “putting you down
  • Making her feel bad about herself” becomes “Making you feel bad about yourself

Resources to end Abuse, Neglect and Exploitation

State Links

 These links mainly focus on the disabled or elderly.  They might not match everyone’s situation, but perhaps it will help someone get the help they need.

Additional Links

I hope that if you are facing abuse you’re able to find a safe haven for your heart. A place saturated with love, life and harmony.  

If you would like to continue the through through self advocacy, feel free to click on one of these links.

Cancer – Personal Advocacy

Power Advocacy Podcast 1

Caretakers

Experience of Treatment

Caretakers – Personal Advocacy

Caretakers

Your Caretakers should be taking care of you, you shouldn’t be taking care of them.  

caretakers

The cartoon above was an actual conversation between he and I.

I would like to introduce you to Ino, he was my caretaker.   Chemotherapy was terrible, but he made the experience nearly unbearable.  He was supposed to keep the house clean, prepare my meals, keep the cat litter box clean and provide me with transportation.  In exchange for this, his rent was free.

Introduction

I used to have a problem setting and enforcing boundaries.  For most of my life others have stomped and walked all over me.  Lovers, friends, caretakers and especially family members have violated my boundaries.

Its taken some time but I have learned how to establish effective boundaries. They are set when our pain surpasses our tolerance.  It is the moment when we are overwhelmed and we decide to take a stand.

This is the story of Ino, and this is how he motivated me to set and enforce my boundaries.  I am embarrassed to write this, but it is such a great example of how people can take advantage of you while you are going through chemo.

The Comfort of My Bed

As I laid in bed I could hear my cat meow incessantly through the door.  His soft white paws tapped in a maddening pattern.  In the living room I heard the scratching click of Ino’s cell phone as he texted.  Every minute a terrible ring blasted from his phone throughout the house.

Beside me was a partially filled bucket of vomit.  My head ached and my stomach spun, I felt the food in my belly slowly sneak its way up my throat. I was so tired, the chemo was sucking all the life from me.  Ropes of exhaustion tightly twisted around my bones, tearing at my muscles.

On my side I felt a stab, the sensation of a searing hot knife slicing through my flesh.  Around that pain was nothing, an absence of feeling, like pins and needles. It felt like my back was wrapped in a blanket of numbness, a void, a nothingness except for the pressure of a rock.  The rock was the hardness of a bone, a thing that was my scapula.

My chest felt like my hair was being pulled from the inside out.  My skin stung and my hair ached.  There was a roving pain in my flesh, it hurt and throbbed like a chemical fire.

It was hard to breath, even more than normal.  My coughing made my chest muscles scream.  I had a weight on my sternum and liquid under it.  My lung felt swollen and engorged, fat and bloated.  I would cough then retch.

Strolling Into My Living Room

I rolled out from the covers and placed my feet to floor.  My toes were numb like rubber and my joints hurt as I stood.  The muscles of my legs felt like they were filled with glue as they moved.  Slowly I ambled into the living room.

Though the air purifiers roared they were overcome by the stench that permeated the house.  It was rotten and fetid, soaking everything with the smell of death.  The garbage can was filled to the floor with waste and the kitchen sink was a mountain of dishes.

A cloud of flies hovered and flew and the sour smell of cat feces was thick.  It had been weeks since I was able to get my caretaker Ino to clean the cat litter box, to do the dishes, to clean the house.  I looked over at him as I passed to enter the kitchen.  He sat, staring down, clicking his fingers against the shiny screen of his phone.

I stood within the center of the kitchen and looked around at the insanity. Turning toward him I asked if he would help me do the dishes.  His reply was unbelievable, he said he couldn’t help me because doing the dishes gave him flashbacks.  Then he went back to texting on his phone.

I had enough, I couldn’t live in this hell.  This was the moment my barrel had been filled, pouring over the brim.  It was the moment my pain crossed the threshold of my tolerance. With my body in agony I did the dishes, I cleaned the house and he sat and watched as I did his job around him.  I had to call my friend Tony to ask him to come and clean out the cat litter box, because Ino refused to.

Links

If you would like to read or listen to a poem related to INO go ahead and click this link.

For more about personal advocacy click on these links

Power Advocacy Podcast

Experience of Treatment – Personal Advocacy

Your Caretakers should be taking care of you, you shouldn’t be taking care of them.

 

 

CSO – Personal Advocacy

CSO

CSO

Today was filled with discovery! I learned that the person I saw needed CSO next to their name to be of any value to me.  The acronym stands for Certified Specialist in Oncology Nutrition.  The person had RD, LD, CDE and MS, but no CSO.  I am so frustrated I want to cry.

How was I supposed to know this?  Why was I sent to someone who wasn’t trained to treat patients with cancer?  None of this makes any sense.

What was the value of seeing this registered dietitian?  When I asked her questions she became visibly irritated.  She would turn away to enter something into her computer, a moment later she would leave the room and return with some paper.  Then she would read to me verbatim from the print off.  If I asked her another question she would get irritated, turn around and repeat the process.

After leaving her office I researched her credentials to see if she was the right person for the job.  The answer was quickly answered with a no.  If she were she would have been certified through the Commission on Dietetic Registration.  A certification that requires an RD to be registered with them for 2 years and have 2,000 oncology specialty hours.

After a bit more research I found a website that steered me in the right direction. I was only able to find one Registered Dietitian with CSO.  If you would like to use the site that I used, feel to follow this link to the NPIdb website.  I left a message with the RD and will look forward to possibly seeing someone who is skilled at working with patients with cancer.

If you would like to read more on personal advocacy feel free to click on this super fancy link.

 

 

Power Advocacy Podcast

Power

Power Advocacy

This marks the first episode of my Power Advocacy podcast.  My goal is to illuminate the path for those who seek to navigate the treacherous road of cancer.  I want to help you find the way, to guide you through turbulent waters into the soft, soothing sea.  I hope that these words will give you the power to reach for self advocacy, to taste independence and to become the master of your fate.

Dreams and Passions

It is important to have dreams and passions. They are the fuel your heart uses to empower your mind to achieve great things.  The misery of my cancer journey has made me a powerful man.  I want to teach you how to become a powerful person.  Come join me on this journey, lets make the cancer road a less horrific path.

 Goals

I am…

  • …in the process of developing a self advocacy booklet.  This illustrated source book will provide the tools you need to become your own advocate.
  • …looking for cancer organizations who would be interested in spreading cancer awareness and patient advocacy.
  • …working on finding resources that will make research easier on current and future cancer patients.  The internet provides a wealth of information, but not all of us are rich enough to know where we can find it.
  • …writing an autobiography that focuses on my journey through cancer and the tools I used to navigate its treacherous waters.
  • …searching for ways to bring greater awareness to my own cancer (NET/Carcinoid), so others my reclaim their lives and live life to its fullest.

If you would like to read more about my journey into self advocacy feel free to click on this loving link.

 

Deity of Cancer – Personal Advocacy

DeityDeity of Cancer

Your doctor is not a god, they are not a deity of cancer.  You are entitled to proper care, you deserve to be treated like a human and your doctor is working for you, you are their boss.

I will say this again, YOU ARE THEIR BOSS.  YOU ARE PAYING THEM.  If you are not satisfied with their performance make it known. You must say something, if you feel like you can’t do it over the phone or in person, then do it through electronic communication.  If your doctor refuses to give you the treatment you deserve, find someone who will.  FIRE THEM! Your doctor is not the only one who can treat you.  Most likely they aren’t even the best person for the job.

Treatment

Chemotherapy can cure your cancer, but it might not.  Radiation can treat your cancer, but it might not.  Surgery can remove your cancer, but it might not. These treatments are incredible tools in the crusade against cancer, but they are not the only ones.

Talking to Your Doctor

When talking to your doctor it is up to you to take charge and become your own health advocate.  You do this by asking questions.  Once again your doctor is not a deity.  They need to sell you on the treatment they want to do.  You need to be willing to pay the price in PAIN that you WILL experience for buying into their plan of care.

Ask your doctor if you can record the conversation.

Why would I want to ask my doctor if I could record him?  First, its the ethical thing to do if you want to record them.  Secondly it increases your retention, understanding and helps you fact check their evidence based approach to treatment.  Why wouldn’t my doctor want me to record them? The following article provides some insight.  

Recording what the doctor says allows me to:

  • have a better ability to remember what they said.
  • fact check the information they give me.
  • effectively research the treatment options they suggest.

I believe that most people are afraid of the power differential between them and their doctor.   This is something that has caused me great duress throughout my interactions with my oncologist.  Any tool we use to reduce this power differential increases our comfort, confidence and improves our treatment are valuable assets.

As patients the last thing we need to be concerned with is the ego of our doctor. Their fear of being scrutinized for malpractice is not our concern.  The only concerns we need to be having is: are we receiving the best, most appropriate care available?

Ask why the treatment options are the best for you.

If you are about to make permanent changes to your life, you need to know why. Why does the doctor believe these are the best treatment options?  How did they come to this conclusion?  We are talking about your life here, you need the facts and you need to make sure that your doctor is using evidence based information to determine your best possible care.

Ask them about your options.

Ask them if there are any specialists more qualified to treat you. Is there is any research on your cancer?  What are some other options available to you outside of the treatment options they suggested?

So many will say that this approach creates friction between them and their doctor.  That they’re afraid of angering their doctor, because it will impact their treatment.  If that is the case why would want that kind of person to treat you?

Once again this is about you, not them.  Friction gives you footing, if you want to stand you need some kind of traction.  You are the only one who is going to stand up for you.  Use all of the tools you have to get the treatment you deserve.

Continue the Learning Journey

If you would like to learn more about options available to you, feel free to follow this link and read about Palliative treatment.

Empathy – Critical Awareness

Empathy

When empathy becomes reality, your empathy has failed you.  Watching someone experience something is not the same as experiencing it.  This goes both ways.  It is not fair to claim you know something, when you don’t.  This post is about exploring the reality of cancer, our perception, empathy and our roles.

Empathy

Perception

Recently I was having a conversation with a friend.  She said that I wasn’t appreciating her and that I haven’t given her that appreciation for six months.  I told her that the reason was because I was going through chemotherapy.  She said that chemo was no excuse, then continued to say that she knows what chemo was like because her father went through it.  Her father was able to make her feel appreciated while he was going through treatment, so I should have too.

I told her that chemo was not an excuse, that it was a reality.  That for the last six months I’ve faced the most terrifying and painful experience of my life.  Things that she has never experienced and has no true understanding of.  That she would never understand what it feels like until she’s gone through chemotherapy (something I hope she never does).  I told her that I’m not her father, boyfriend and she is not my daughter and my role in her life is not as a significant other or parent.  That it sucks to feel unappreciated and as her friend I wished her feelings were not hurt.

Empathy

Friends do things that we may sometimes consider deplorable.  Her comment could easily be considered as such.  In the moment I was calm and didn’t allow it to hurt my feelings.  Later my feelings were hurt by it a little bit, but I vented to my significant other.  Then those bad feelings dissolved.

Friendship is about more than just the good times.  Sometimes we say things when we are really stressed that hurts those close to us.  I believe the fair thing to do here is to accept what they say as stress and move on.

Roles

If you have a loved one with cancer, it doesn’t mean you know what the experience of cancer is like.

Just because you…

  • have walked with someone in their cancer journey doesn’t mean that you know what its like to have cancer.
  • watched someone go through chemotherapy doesn’t mean you know what its like to go through chemotherapy.
  • know someone who went had surgery, doesn’t mean you know what its like to go through surgery.
  • know someone who had radiation treatment, doesn’t mean you know what its like to experience radiation treatment.

If you have cancer, it doesn’t mean you know what its like to watch someone you love suffer through cancer.

Just because you…

  • have cancer doesn’t mean that you know what its like to watch someone go through cancer.
  • went through chemotherapy doesn’t mean you know what its like to watch a loved one go through chemotherapy.
  • had surgery, doesn’t mean you know what its like to be there for someone going through surgery.
  • went through radiation treatment, doesn’t mean you know what its like to watch someone go through radiation treatment.

If you would like to read about the journey of cancer feel free to continue your exploration by clicking on this link.

Stress – We must become advocates

 stressStress is a Catalyst for Change

Storm clouds will brew and roar, but eventually they begin to pour.  When the sky opens up and gives us rain, it can fall in a variety of ways – from thick to thin, small to tall and soft to sideways.  My storm cloud of cancer has been hard and steady, thick and slick.  My stress collecting gutters have been deep and cavernous, storing more rain than I ever could’ve imagined.

The gutters of stress, like our homes serve to save our roof, serve to save our soul. They fill with an ever flowing destructive force.  A force that will find its way, that will always has its say.  Our gutters can only be filled so much, they become over loaded and begin to spill over.   At these moments, when our pain crosses the threshold of our tolerance that we decide to make a change.  It is the catalyst that transforms our existence.

It is from this moment we begin to invest in ourselves.  We gain a strength to do what needs to be done.  We become dedicated to a cause, our cause.

Stress: a tool for advocacy

This week I reached a pivotal moment in my cancer journey.  I discovered how to transform stress into momentum and to become my own health advocate.  In A New Universe of Cancer: Part 5 I begin to explore this advocacy.

Recently I started expressing my thoughts and feelings.  This exploration has made me stronger, more aware and more powerful.  Last week I could no longer tolerate how my treatment was progressing.  The scans and tests that were suggested by the sites and experts I researched did not resemble the scans and tests of my oncology team.  After considerable introspection I decided to stand up for myself.  I sent this email to my oncologist:

Email

I am not satisfied with your explanation as to why the Netspot kit (aka Gallium 68) was not used. Simply stating that Netspot is not meant for my NETs is not enough to convince me that I would not benefit from it. If the reason is because it is rare for lung carcinoids to cause carcinoid syndrome I would agree, yes, it is rare, but it is not impossible.

According to my medical records I have not taken a 5-HIAA test to check for serotonin levels. Nor have I received an octreotide scan. When it comes to my health I am not prepared to run on assumption. If this test has occurred or there has been some other test performed on me that I am not aware of I would greatly appreciate having that information.

With that said I would like to have a more in depth explanation as to why you ordered a PET scan you knew would reveal nothing. Why exactly would I not benefit from the Netspot kit? Why have I not been given an octreotide scan?

Searching for a new oncologist

After sending this email I began searching for a new oncologist, specifically one that specialized in NETs.  Following a suggestion I contacted Siteman here in Saint Louis.

I spoke with a receptionist who explained Siteman’s insurance policies.  She explained that because their organization did not have a contract with my insurance their doctors would only see me once, they would not offer treatment options, order labs or scans and would offer no additional opinions on my cancer.

I am more than willing to accept the policies of an organization and move on, but this receptionist was insensitive, condescending and rude.  It felt as though she was taking pleasure from the horror of my situation.

I asked her if she would send a note to the doctor (she claimed was a NET specialist) asking if he would provide names of other NET specialists within Missouri. She told me that she would not do it.  I asked her again, telling her that I couldn’t find any names from my insurance website or online.  She said that her office would not refer me to see anyone.

I told her that I didn’t want a referral, I just wanted some names so I could find someone to help me.  She said the only way I could get those names was if I came into see the doctor.  I asked her how much it would cost, she said because the hospital wouldn’t accept my insurance it would cost me $360.  After telling her I couldn’t afford to pay $360 to maybe get some names, I asked her to ask her doctor if they would tell me about some NET specialists. I asked her again, to just ask the doctor, that I was desperate, that I was afraid and that I needed help, I begged her to send the doctor the note.  She said no.

So I asked to speak to her supervisor, she put me on hold for about ten minutes then transferred me.  After speaking to her supervisor I was told that I would get the information.  It took some time and eventually I got the names and contact information for some NET specialists.

A Conversation with my Doctor

Throughout the day my doctor called me, but I did not feel like speaking to him.  I was out of energy and I wanted to make sure I was in the right head space when I spoke to him.

The next day my doctor contacted me and we spoke on the phone. He apologized, told me that I was right, and truly humbled himself, an act I have never seen a doctor do. Immediately he started the process of making sure the scans mentioned were ordered.  Already I have completed the 5-HIAA test and some blood work.  Next week I will be receiving the Gallium 68 scan.

I have learned from this experience.  It has taught me that if you want to receive treatment you have to demand it.  If you want to be treated like a human you have to be strong and powerful.  Unfortunately at many moments we are weak during our cancer journey, it is unfortunate that we have to not only to survive but to also receive the treatment we deserve.


If you are interested in reading more about my journey down the road of advocacy take a step back in time and check out: We all must be advocates, all of us; Part 3

 

 

The flavor of food

There are numerous moments when we take our sensations for granted. Though the flavor of food has returned to me, my tongue is numb in certain spots. I can enjoy taste, but the texture just isn’t right.

Flavor

Recently a friend of mine told me about a woman she ran across while at work. She saw the lady staring at some lettuce, so she asked her if she needed any help. The woman said she really didn’t know what she wanted because she had no appetite, confessed that Doritos tasted like paper to her.

While going through chemo I experienced a range of flavor transformations. There were times when things tasted like ash and other times the flavors were extreme or exaggerated versions.  The best advice I have for anyone who is having a hard time eating is to eat even when you aren’t hungry, or believe you can’t eat.

Its important to have something in your belly, its the only way you’re going to have the energy to fight. At times my nausea was so extreme that I would immediately throw up after eating something. To combat this I would immediately make something else, no matter how many times I threw up, I would force myself to eat.

We must become advocates, all of us: 3

Asking Questions

Today I started being my own advocate, by asking questions.  I told my oncologist I wasn’t satisfied with the explanation he provided for why he didn’t order the Gallium 68 scan.  I asked that he refer me to a nutritionist.  Finally, why was an octreotide scan and 5-HIAA test never ordered.

Why order a PET scan to search for other tumors when he said the scan wouldn’t reveal anything.  Why waste resources when you know the results will be inconclusive?

Its unfortunate when it feels like your oncologist ignores your requests and questions. Its not very pleasant when you find holes in the data given to your by your health care provider and its scary when you are losing faith in the treatment you have received.

To be fair we’re all human, we can only know what we know. People can only do what they can do.  I could sit here all day wondering if things would’ve been different if someone suggested to do this or that, but if things were different, things would be different.  There are moments when I get angry, but unrefined anger doesn’t do anyone any good.  Anger filtered through a lens of critical analysis can give us the outrage we need to change something.

I have initiated change, I asked the right questions but now I feel depleted.   It took so much to stand up and ask my questions that I don’t have the energy to hear the answers.

I’m not happy with my doctor, that doesn’t mean he’s a bad doctor or person. Simply put we just aren’t a good fit right now. I assume that he is a competent, friendly and a passionate person, but I need more.  I need a second opinion from someone who specializes in NETs.

asking questions

If you would like to read other posts like this one.  Feel free to direct your friendly finger this way and click this.

 

We must become advocates, all of us: 2

One Cancer

 

“Big pharma doesn’t cure people, they want to keep people sick and manage the pain.  They don’t want to cure people because there isn’t any money in it.”

“You shouldn’t do chemo because it is a poison and it is only going to make you more sick.”

“Chemotherapy causes cancer, that’s where cancer comes from.  There wouldn’t be any cancer if Big pharma hadn’t invented it.”

“You should stop taking your chemo because it is killing you.”

“You should stop taking your chemotherapy and see this shaman I know.  He’s amazing! I bet he could cure your cancer.”

“You shouldn’t do chemotherapy, I know this really good herbal tea supplement that has been proven to cure cancer.”

I have heard all of these and many others.  They are all bold and dangerous claims. Most people are so far removed from the world of cancer and chemotherapy that they make uninformed, knee jerk statements about cancer treatments.  They make claims that hurt innocent people facing life threatening situations.

These statement are dangerous because they broadcast their opinion as fact.  An opinion that may sway a person with cancer to refuse chemotherapy, because they trusted an unreliable, inaccurate and emotionally motivated source.

There is an ideology that is prevalent within society, one that serves as an advocacy for ignorance.  This ideology is a large brush stroke that uses many colors to paint their vision.  I would like to address the one that directly affects people with cancer, a group I call One Cancer, these people believe that there is only one cancer, that all cancers are the same and that they can be cured with the same treatment.

They believe that the pharmaceutical companies are evil and they either already have the cure, or they are creating the disease.  That their interest within the medical community is to juice out every last penny from people suffering with cancer.  They do not believe that someone would dedicate their lives to the betterment of others.  They believe that these organizations are made up of evil, greedy and selfish people.

It is through their bias and hatred that they form the opinion that chemotherapy offers no benefit.  Then do their best to spread that misinformation as far as they can.

It’s easy to vilify others; bias is so prevalent because it is easier to live with ignorance than to be informed.  Ignorance is bliss. Unfortunately, it is from this bliss that hatred is born.

Through this hatred misinformation is spread.  To be an advocate for your health you must have the awareness and ability to see and ignore the information that will hurt you.  It is important to be able to separate the information of credible sources from those that will not be to your benefit.  Ultimately it will be up to you to make that distinction.

Research is your greatest ally, you must research everything.  Take no one’s word as gospel.  If a source claims that a particular treatment plan is the best approach for your particular kind of cancer, see if they are a credible source.  It doesn’t matter who or what they are, fact check the facts they are giving you.  If the source is your doctor, get a second opinion, or third.  Use whatever resources you have at your disposal to see if the information being given to you is your best choice.  Making the best choice requires adequate information, critical thought and knowing how much you are willing to sacrifice and at what cost.

There are no small sacrifices when it comes to cancer.

 

If you would like to read We must become advocates: 3 consider clicking the link right here.

We must become advocates, all of us

Becoming your own advocate means you must learn how to critically research and develop critical thinking skills.  I consider personal advocacy to be an inner boundary (something I will discuss later).

Being your own Advocate means you must be a leader.  You have the break the mold of putting your life into the hands of strangers you know nothing about. These people should be working for you and not the other way around.

We should be interviewing these people, they should be earning our trust, we are their boss, there should be no point in our treatment plan that they are our boss. They are the people we are using to get a service done, if their ego or inability gets in the way of achieving your goals then they are failing in the duties they were hired for.  When this happens it is time for you to fire them.

If you hired someone to fix your motor vehicle would you hire them again if they failed to fix the part you paid them to repair?  Would you hire them again if they refused to follow your instructions?  No, of course you wouldn’t, so why are we shelling out thousands and thousands of dollars to health care professionals who are not meeting or exceeding our expectations.

Something has got to change and the only way I can see that change happening is if we have a greater understanding of our care.  If we take charge of our treatment plan and learn how to say NO, we can become a true advocate for our own health.  We have to be our own advocate.  This WE is more than just cancer patients, this is everyone.  Everyone has to be made aware of how to demand the service they deserve because they are paying for it, the service they deserve because they are a human being.