Life After Cancer: The Expensiveness of Life

I think I pay a pretty decent amount of money for health insurance and since it is required by law you would think that having insurance would be helpful to receive the care you need to live a healthy long life.  But that doesn't seem to be the case.  My medical bills are going to put me in the poor house.  I wish I was joking or being overly dramatic, but I am not.

For those who suffer from long term medical issues, health insurance and medical bills consume your life.  If you are not on the phone arguing with the insurance companies to pay for things they should then you are on the phone with the billing department of hospitals/clinics trying to organize a payment schedule and plan for the massive amounts of medical expenses that you have accrued throughout the year.

For me personally, I have a $750 deductible and a $3,500 out of pocket expense to reach before my insurance is really any help.  Who has that kind of money just laying around these days?!  I know I do not, not with student loans and life expenses.

It has been a rough year, financially.  But then again, every year has been this past decade.  Every year I keep thinking that this year will be different; I won't accrue anymore medical bills or spend my savings on an Emergency Room visit.  Yet, each year something happens and I watch as all that hard earned money that I had been trying to save up vanishes in a blink of an eye.

To make matters worse, when I looked into getting financial assistance with medical expenses I found out that on salary alone my husband and I made too much money, just barely over the maximum amount of income that qualifies for assistance.  This is heartbreaking news when you think that every year is going to be like this.  Every year I will be shoveling out over $4000 in medical bills.  That scares me, and that is just for in network expenses.

How is this affordable health care?  I should not be this terrified and stressed about medical expenses day in and day out.  I do not even want to open my mail anymore because I know that I will just stress over how to pay the new bill.   But I know that because of my health, and the permanent effects cancer and the treatment for cancer had on my body, that this is my life.  My life is unaffordable.  No one should ever have to feel this way.

I fought like hell to keep my life because I wanted to experience all it had to offer and I have truly enjoyed every day that I have had so far, in one way or another, and I look forward to the many more days to come, but to know that each year is going to possess a financial burden that will always be hard to overcome is honestly disheartening.

As some fellow people in my world have already pointed out, it could be worse.  Yes, I am well aware that the expenses could be worse if my insurance was different or I had no insurance at all, but if you factor in the rest of life expenses, $4,250 is still a lot of money to spend on an annual basis in addition to the amount that is already paid toward having insurance.  I know that it is a lot better than $20,000 or $100,000.  I really do not need to be reminded of this.  But not only is this an issue for me, but for many more all over.  If I could get by without having to go to the doctor, as most of my fiends and family know, I will do whatever I can to avoid going in, but there are many appointments that I cannot avoid.  Each one comes with a rather lengthly list of expensive tests.  If I knew this would not be an annual thing then I probably would not worry as much or mind, but it is not something that I cannot think about.

Being a very money conscious person the way it is I tend to not do a lot of extra things that cost money and out of respect some of my friends have excluded me from their activities because they do not want me to feel obligated to spend money.  That just makes me feel left out and lonely, two things that I have already spent too many years feeling while going through cancer treatment.  If you cannot afford to do anything and your life basically consists of going to work and coming home, is that really a life?  Are you really experiencing what life has to offer or are you just existing, barely?

Books, How I Love Thee

I know I have not written lately.  I apologize.  It is not that I have not had anything to write about but more so that I have been so wrapped up in reading that when I have a free moment I have tended to pick up my book or Kindle rather than the computer and get lost in a whole different world.

Reading has always been one of my favorite past times.  One can never be bored while surrounded by books.  Also, I do not believe that you can ever spend too much time reading or have too many books, my husband may think otherwise after moving all my books into our new place.  I guess that is the unfortunate part of having a wife that can only lift up to 20 pounds; he has to do all the heavy lifting.

Reading was something that I used to escape from the world I lived in while stuck in a hospital room.  It allowed me to travel worlds previously unknown to me.

What better way to pass the time than to solve murder mysteries with Alex Cross (James Patterson) with each one of his page turning thrillers that grab you and keep you on your toes to the very last page while continuing to be completely wrong about who committed the crime.  Then learning about the life of young Fatima Mernissi (Dreams of Trespass: Tales of A Harem Girlhood) while growing up in a harem and dreaming of the world beyond the courtyard walls, which related to me wanting to know the world and the happenings outside my own walls.  Then adventuring On the Road with Jack Kerouac and Neal Cassady through North America in addition to feeling as if I were infinite with Charlie, Sam and Patrick while driving through the tunnel in Perks of Being A Wallflower.

I may not have always remembered what I read further down the road while going through treatments for my leukemia, but for those moments while I was reading I was able to explore different places and escape the confining walls of my hospital room and the hospital itself.  Not only that, but in those relaxing times and for brief moments here and there I was able to forget about everything else that was going on around me.

 Lately I have been spending extra time reading and rereading some of the books I read in the past and really enjoyed.  Something that I have noticed is that books are being turned into movies left and right.  While I truly enjoy the watching these movies (The Hunger Games and Catching Fire, all of the Harry Potter films, and now the Divergent series, and The Mortal Instruments, and one of my favorite authors from the past couple years, John Green with his beautifully written novel, The Fault in Our Stars soon coming to theaters).  I cannot help but wonder if this is promoting reading of the books in anticipation of the films or if it is stopping people from picking up the book and spending time to read.

I have heard it both ways with some saying that they do not need to spend hours and/or days reading a book when they can spend just a couple hours watching the movie.  Others want to read the book first before seeing the film.  Those who have read the book before any notion of a movie feel conflicted that the movie will ruin their love of the book. Others, like me, try to keep them separate while watching and rating the movies but still tend to rate them together when suggesting whether someone should watch the film and/or read the book.

An example is Jodi Picoult's novel "My Sister's Keeper".  As usual Ms. Piccoult's writing is wonderful.  It tugs at your heartstrings and deals with controversial issues.  The movie adaptation is wonderful as well, but is very different from the book.  Not only does it leave out very important parts of the book but it also has a very different ending.  Thus, in my opinion, if you are going to watch the movie then you should also read the book because it will be a different experience than the movie.  Another big example is the Game of Thrones series on HBO.  Many people who watch the show do not read the books, which is a shame since there is a lot of things that are left out of the books.  It would be really hard for all the extra information to be put into that short series for each season/book.  The show really is great, but in my opinion are even better after reading the books.  

How do you feel?  Would you rather watch the movie or television series than read a book? Or, are you one who likes to do both?

Showing Emotion and Asking for Help: Why is it So Hard?

Why is it so hard for people to ask others for help when they need it? We try to tell ourselves that we are fine and that everything will be ok and things will pass even when we are not sure if that is true.

There were times during my cancer treatment when I knew that I needed someone to talk to and listen to what scared me. I needed someone who would not tell me that things would be fine and that I was strong and would push through everything. I needed someone who would allow me to be scared rather than tell me that I just needed to be strong and think positively. But I was unwilling to admit that I needed that help. It probably would have been beneficial for me to seek someone like a counselor to talk to, but for some reason I just could not accept that I needed that type of help.

Maybe it was because, as a cancer patient, I was already being looked at differently by all my friends and family members that I felt like I did not need one more person to give me that cancer patient look.

If we know we are in a state of depression, or just not feeling like ourselves, why are we afraid to acknowledge that feeling? Why are we more willing to let ourselves feel crummy instead of wanting to do something about our mood so that we feel more like ourselves than different and foreign?

Why is it so hard to ask for help when it is needed, especially when it revolves around mental health? What is wrong with showing fear? Uncertainty? Sadness? Anger? All those emotions that wash over people at any point in their life can intensify once they are exposed to the world revolved around treating cancer.

The person with cancer often gets overlooked and the main questions end up being asked about how the treatment and procedures are going rather than how you, as a person, are handling everything emotionally and mentally.

People tend to push for you to stay positive all the time, to keep your chin high, enforce the fact that you are strong and can get through this difficult time. As long as you stay positive you will make it through everything.

Why can I not scream out in anger when my body reacts to a drug and makes me itch like mad? Why is it wrong for me to be angry that my life has been interrupted by something that could kill me and prevent me from doing all the things that I grew up wanting to accomplish? Is it really normal for someone to be positive at every moment even after all the side effects from the chemotherapy and various drugs that accompanied the cocktail has made the body feel foreign to the owner?

Everything revolves around cancer, tests, treatments, procedures, etc. rather than the actual person.

It took me a long time to realize that it is OK to cry. That it does not make you less of a person for feeling some sort of emotion and allowing that to show on your face.

Life in general is not easy, it is not suppose to be, otherwise we would always get what we wanted and nothing would make us really work for those extra things we want and enjoy in life, right?  Also, it would probably be a little boring and I do not like boring. Instead I enjoy challenges and face them with as much strength and determination I posses. However, I never wanted something as challenging as cancer, nor would I have ever expected it to happen.

Maybe sometimes boring is good.

Growing up I was not one to cry in front of others. When I got upset and felt the urge of tears wanting to show my true feelings I would run away to be alone, secluding myself to deal with my feelings myself, rather than expressing them out loud. I thought that crying would make me look like a baby or a wimp and I was always trying to be a grown up and strong like my mom.

Since I only saw my mom cry on rare occasions, such as when we lost a beloved mare while she foaling, or when someone passed away, I assumed that was the only time worth crying. Of course there have been a few times in my 29 years on this planet where I have been super frustrated and stressed past my max where I broke down and did not care who was around me. But most of the time I would just try to take everything in with a positive attitude and let the world know that I was fine with whatever may come.

Yet, once I saw my mom enter my ER suite, and by suite I mean a curtained off area, crying I knew something more than just a pinched nerve was causing all the pain in my leg. But nothing prepared me for what I was to learn in the next 24 hours.

(For more information, please refer back to a previous post, Finding Out I had Cancer)

I knew that in order to live I would need to start chemotherapy right away, per doctor’s orders, so I obviously agreed, as did Mom, and we started right away. Also, I was so doped up that I could have agreed for them to harvest all my organs. Thus, it was a good thing my mom was there to make sure everything went the way it should.

Even after finding out that I had cancer I did not let myself cry. The only time I would cry was when I was in an extreme amount of pain. Maybe part of the reason was because I had no idea what was in store for me, because I also had no idea what leukemia was or how it was treated or anything about chemotherapy. But I did know that I needed to be strong and in various ways. I needed to have the strength of mind and my attitude to know that I could make it through the tough times ahead and not give up even in the rough periods. 

However, after several months in and out of the hospital, various complications from the drugs, zero energy and not being able to spend time with family and friends around the holidays made me so mad. During one of my short stays at home between consolidation treatments we had a family gathering with my grandma. This was just after being released from the hospital after a spinal tap, which did not heal right and I was left feeling absolutely miserable and unable to stand or sit up without being sick to my stomach with a pounding headache. I could not enjoy my time with my family at the dining table. Instead I had to remove myself and lay back down on the couch, which really bugged me.

At that point I just let it go and broke down. I was so sick of everything. Never feeling well, never having any energy to do anything, always feeling like I needed someone around me rather than being my independent self and just not knowing what to do with myself physically, emotionally, and mentally.

I felt better after releasing this emotion that I tried so hard to keep inside and away from others. All this energy that I spent to try to keep my emotions in tact just made everything more difficult. It was hard to try to stay positive about the whole situation when I was bottling up so much of everything.

Why did I feel the need to keep everything bottled up? Why could there not have been someone who would come in and visit with me while staying in the hospital to talk or listen to my concerns and feelings? Isn't mental health just as important in the battle as the drugs being given? 

I feel that with every diagnosis and every treatment protocol another step should be added to the process. Finding a professional who can speak with individuals dealing with various situations so that they do not feel so alone, so they can work through their thoughts and emotions and try to get a feeling of control back in their life. Just because someone says that they are dealing with everything fine and seem to be handling things with ease does not mean that they are not falling apart inside. 

Here is a thought for parting. One of the things I noticed when being admitted to the hospital was that they always asked me what religion I was and if I would like a chaplain to visit. Even upon saying no the question would come up again later or a chaplain would eventually stop by my room. Why is a chaplain easy to provide, even when unwanted, but a counselor, therapist, psychologist, etc., is not?