Experience of Treatment – Personal Advocacy

experience

What are you willing to Experience?

When I started my journey no one told me what I should expect.  Sure the nurse practitioner sat me down and told me a bunch of symptoms, but no one actually shared with me what chemotherapy is actually like to experience.

Detached and not involved would be how I would describe my oncology team’s role in my treatment.  I do not feel like I was treated like a person while in treatment.  Cancer was bad, surgery was horrible, but the chemotherapy and my oncology team made the experience unimaginable.

No one ever asked me what I was willing to experience or lose.  No one suggested a care plan that would prepare me for what I was about to live through.  I had no advocate, no mentor, no guide.

What do I want to do?

I want to change that experience for others.  No one should have to go through what I experienced.  If you are about to start chemotherapy you should have all the tools you need to make an informed decision.  Right now as it stands I don’t believe that patients are receiving the knowledge they need to make the life changing decisions they are being asked to make.

I want to use my communication skills to help others understand their choices. There are more options to you that what you think.  You don’t have to do what the doctor tells you to.  The environment of a doctor’s office and their power differential interferes with your ability to critically think.  You have the choice to say no and research all of your options.  You need to speak to people who have been in the shoes you are wearing right now.  These doctors and nurses have no idea how horrible treatment can be.  You need to make a decision based on all the information, not a small slice of it.

I want people to realize that they are their doctor’s boss.  We need to overcome the power differential between doctor and patient.  They are working for us, not the other way around.  A doctor is not a deity, they do not know everything and they do make mistakes.  They are human.  The sooner you realize this the sooner you will realize that they are not the end all be all option for your cancer.  You must feel comfortable with your doctor, you have to feel like you can ask them questions, and you need to feel like they are listening to you.

Treatment

I have said this in another post and I will continue to say it.  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.

What can I expect to feel?

Nausea

When someone tells you that you’re going to experience nausea, they are going to fail to adequately describe what it might be like.

Imagine you need to throw up every moment of every day while going through treatment. If your cycles cover five months, your going to be sick for six.  The nausea is all encompassing, permeating every facet of your existence.  I had moments where I was taking a shower and I would suddenly throw up, while I was eating I would throw up, while I was driving down the road, while I was being intimate with my woman, while I was sleeping, I would throw up.  Imagine having the flu every day, every single day.  Once you have done that you will have just a fraction of an understanding what it means to have nausea while going through chemo.

Neuropathy

When someone tells you that you’re going to experience neuropathy, they are going to fail to adequately describe what it might be like.

Have you ever had the sensation of your hand or foot falling asleep?  Perhaps you’ve had some numbness in your extremities?  Maybe you’ve had moments where it felt like someone was stabbing you with a knife?  Maybe you’ve even been touched with something super hot?  Imagine all of these sensations, imagine them alternating from one to next in a friendly game of musical chairs. This is neuropathy, it starts off light but it is noticeable.  I told my nurses and doctor about it, but they didn’t care. To them the side effect wasn’t that big of deal.

Would these sensations be that big of a deal to you?  Maybe not, but let me translate them to real life situations.  Do you enjoy kissing?  Being intimate with the people that you love, say your significant other?  Do you enjoy the sensation of being touched?  Maybe you like how warm water feels against your skin?  Would you say that you like to feel textures, say of food or clothing or… well anything at all.  If you like any of these experiences you need to be willing to let them go.  Sure the doctor may say that these are temporary, but sometimes they are permanent.  Are you alright with losing the ability to feel the world for the rest of your life?

Infertility

Well for some this might not seem like that big of deal, but for most it is.  There is no experience like this one.  I don’t have any kids and maybe I would have never had any anyways, but it should have been my choice.  It should be your choice.  Are you willing to never be able to have kids?  It is important that you take some time to think about this before you are pushed into treatment.

Hair Loss

When someone tells you that you’re going to experience hair loss, they are going to fail to adequately describe what it might be like.

My father once said to me that my hair was a small price to pay for my life.  That is coming from a man who has never gone through chemotherapy.  Sure he may have lost his hair to male pattern baldness, but that is nothing compared to the experience of watching your hair fall out before your very eyes.

To wake up in the morning and see that your pillow is covered with so much of your hair it looks like a cat has just shed on it.  To run your hands through it and watch clumps of it come loose between your finger tips.

So much of your identity is wrapped up in your hair.  Its not just the hair on your head though.  Everything goes.  When my hair started falling out of my head it was traumatic, but when my body hair, eye brows and eye lashes started falling out it was horrific.

Of course this is just a temporary side effect, but I have read about some chemo drugs where it wasn’t.  Before you decide to start treatment, ask yourself if the loss of your hair is worth it.

Fatigue

When someone tells you that you’re going to experience fatigue, they are going to fail to adequately describe what it might be like.

I think the way it was described to me was that I was going to be really tired. Tired… well that doesn’t do chemo fatigue justice.  If I were to describe it I would say imagine pouring glue into your muscles while wrapping ropes of exhaustion around your bones.  Take those ropes and pull them taught, then tug on them back and forth so they would grind against your bones and tear against your muscles.  Imagine a sensation akin to your flesh ripping as you stand or walk. An exhaustion that keeps you out of breath,  causes incredible pain when you try to move and makes every activity unbearable.

I’d say it is similar to the body sensations of being up for days and days.  Its the sick lethargy you get when you have the flu or are incredibly depressed.  Its an inescapable, never ending horror.

Conclusion

These are just a few of the experiences you may encounter while going through treatment. You need to know if you are willing to endure them.  More importantly you need to know why you are enduring them.  What benefits does your doctor say you will gain from the treatment they are suggesting?  Are there any tests can be used to quantify these results? Is the time you could gain from these treatments worth the sacrifice in quality of life?

You are the only one who can answer these questions.   The choice you make needs to be yours and yours alone.  You are the only one who has to live with the side effects of the treatment, no one else can take that horror from you.  Live for you, live for your reasons.  If you don’t want to do chemo, don’t do chemo.  If you want to do chemo, do it for you.

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neuropathy February 13, 2017 Vlog

Neuropathy

Late at night I seem to experience the neuropathy the most.  Its also the time when I am alone the most.  The two are a terrible cocktail.  Last night I had some troubling thoughts as I pondered how much I could tolerate.  Pain and agony is one thing, but when your body loses its ability to feel is another.  There is so much pleasure in the world, so many wonderful experiences derived from the sensation of touch.

These late nights are times for me.  When the sun goes down and my insomnia kicks in my mind begins to focus.  Sometimes my mind focuses too much.  I have a feeling that my thoughts are magnifying my stress, and that my stress is intensifying my neuropathy.

The idea of time traveling through cancer might seem silly, but its the best way to create change.  I would like to see this change end with the outcome of personal advocacy.

I wish I had someone in my life who was a true motivation. Someone who could have been my health advocate, someone who could have helped me avoid all of the pitfalls I faced.  I could wish I was the only one who would ever face these pitfalls.

Those wishes ultimately amount to nothing.  They lead to regret, a feeling that celebrates inaction, leading us to say “I wish this and I wish that.”

Truly at the end of the day I should have been my own motivation, my own advocate.

Throughout my life I’ve been able to avoid buyers remorse through my proactive prevention of regret.  My cancer journey has been more powerful than most of my philosophies, I hope that I can hold onto my drive and purpose, and retain the significance I see within my gift of cancer.

Poison

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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.

Neuropathy Sensations?

The enchanting music of Enya played from the bedroom nearby.  The beautiful sound of water dripping into the soothing, hot bath was intoxicating.  It was my first bath since I had my lung removed, the sensation was a heavenly experience. The water was a cocktail of skin nourishing concoctions and detoxing medicine. The dim light of the room was romancing my soul, I could feel my spirit begin to rejuvenate.  I ran my finger tip along the surface of my palm, the texture was exquisite.  These are the moments I take myself back to as I sit here thinking about the past.

These sensations are a distant memory, now my finger tips are numb, they tingle with the sharpness of needles.  When I slide my finger across the surface of my palm the sensations are delayed, lacking the sweetness of touch.  My feet are like rubber shoes and burn like they are being licked with fire.

These are the haunting reminders of the lingering ghosts of chemo.  There are no small prices to pay when it comes to cancer.  Everything you do, every choice you make comes at a cost.  Though I sit here experiencing these less than pleasant sensations I do not regret the choices I have made.

These sensations are gifts, they are tools, they are a reminder of the places I have been, the worlds I have discovered.