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?

Defining Leukemia

When I was diagnosed with Acute Myelogenous Leukemia it was hard to find helpful information about what it was exactly and why it occurs as well as how it was treated.  Mainly I wanted to know what I was up against and what was to be expected.  The first time I was diagnosed I was too sick to care what was going on just that the steps needed to be taken right away and my mom made all the decisions on my behalf.  Of course doctors try to tell you what is going on and what is happening and some things to expect but when everything happened as quickly as they did for me there was no time to think about anything let alone fully comprehend what anyone was telling me.  Plus, I was miserable.  I don't remember too much about the first few days, or maybe it was more, because I was so out of it, so of course I was not going to remember anything but the fact that pain meds were my best friends at that time.

It was not until after I was feeling better and had gotten through the initial stage of treatment where I was able to start searching for information and try to find some answers that were more insightful than medical talk from doctors.  I think some doctors forget that their patients are not medical professionals and they really need to dumb down their vocabulary.  Sometimes they just need you to tell them and ask them questions about what you are not understanding, which takes energy that you do not always have.

Dr. Daniel A. Pollyea, an Assistant Professor of Medicine in the Division of Hematology, Hematological Malignancies and Bone Marrow Transplantation at the University of Colorado is working on making more information available to families and those diagnosed with leukemia. His blog is titled Leukemology and he discusses the different types of leukemias, looks at why it happens, the prognosis, the different ways it is treated and talks about research and clinical trials. I found this helpful, and since my explanation of AML is in my terms and may not be entirely what you are looking for, I suggest taking a look at his blog. He also talks about why it is important to participate in clinical trial studies and stem cells, something that I believe to be important as well.

Here is the link to the website, I hope you find it as helpful as I did:

http://www.leukemology.com 

Life After Cancer: Research Studies And The Debate To Take Part Or Not

I realize the importance of research studies in the medical field and I am a big supporter of them.  During my treatment for leukemia I participated in a lot of them.  However, I have recently received a letter asking for my participation in another one and I keep going back and forth on what to do.

What is the study about?

The University of Minnesota in the Twin Cities, in cooperation with City of Hope in California, is conducting a two-year study for cancer survivors who received radiation therapy to the chest to study if the low dose of the study drug reduces the risk for Breast Cancer in those at risk due to radiation therapy.  Studies have found that "young women received radiation that included the chest area have anywhere from 2 times up to 20 to 55-times higher risk of developing breast cancer than the average women"(this information was taken from the packet that was sent to me in the mail).

As a young adult that received total body radiation therapy in preparation for a stem cell transplant after my leukemia relapsed, I am a candidate for this study.  Since I am mainly alive because other people took part in studies such as this, maybe even riskier, I have a hard time not participating since it can benefit many people in the future.

So why am I debating whether to take part or not?  The study is taking place at the University of Minnesota in Minneapolis.  As a current resident of Fargo, ND, that is quite the drive to make, which would need to be done several times throughout a 2 year basis.  The Twin Cities is no stranger to me. For over a 5 year time span I, along with my mom for the most part and on occasion my step-father or aunt, made hundreds of trips into the big city.  When I was first diagnosed with cancer I lived in a small town, Glenwood, MN, that most people only knew because of the huge beautiful Lake Minnewaska that spanned between two towns, Glenwood and Starbuck and the big summer event Wateramma.  This is about 2 hours away from Minneapolis (on a good day's drive).  For treatments and whenever there were complications while I was home, which seemed to happen frequently, Mom and I had to make this trip together, sometimes in separate vehicles with me in an ambulance and her trailing behind.  So we both grew well aware of the cost of having to go down and back, which was usually around $100 - $150, give or take some, because of the cots of gas, parking, and food.

Now I live even further away and even though my husband and I have pretty good jobs, we still have a lot of debt, especially student loans that eat up much of our income.  Also, due to current unforeseen circumstances arising, which is a whole new story and ridiculousness on its own, we have been trying to really reign back extra spending, especially since we are both getting really sick of apartment living and are more than ready to find a house to purchase so we can have our own space to do what we want.

However, even after all the mumbo jumbo above, I also had to think about other parts of the study and not just the money side of it.  Ever since my stem cell transplant nine years ago my body has decided that it hates everything.  I wish that was a dramatization but it really is not.  I seem to develop an allergic reaction of various sorts to every drug that I take.  We discovered this not long after the transplant when my body started rejecting one of the big anti-rejection drugs they like to give on top of every antibiotic.  Usually when there was a possible side effect from the drug that should only affect a small number of people, it would happen to me.  I was just that lucky, still am I guess.  I even developed side effects that they were unaware of for some of the medications I received.  The doctors and some nurses often said that I was really good at keeping everyone on their toes.

Thus, I looked through the possible side effects and thought about how they would affect me and make me feel.  Would the side effects cause issues with my work schedule?  Would it take away the days when I actually feel well?  Even though my stem cell transplant was nine years ago I still have lingering side effects from all of the treatment and complications that occurred during this time.  A story for another time.

Any who, after reading the papers a hundred times and thinking through expenses and everything and discussing it with the important people in my life, I decided against taking part in the study.  Was this ultimately the right thing to do?  Who could ever really know that?  However, receiving that study made me more aware that I need to be proactive about my health and make sure I am going to check ups and really watching for those risk factors that chemotherapy and full body radiation bring to the table.  I will have to start overcoming my discomfort of going to the doctor.  I guess I worry every time something seems wrong, other than when I feel like I have a cold or bronchitis, which is common for me, that it will be more than just an infection somewhere making me feel crummy, which is what I thought was going on when I relapsed, or when I feel an ache somewhere, which is like the first time when my hip hurt.  Both of those things started out as small issues that led to such a huge life changing diagnosis.  I know I am not the only cancer survivor  that worries every time something does not seem right and fear that they may hear those dreadful, life altering words again.  It is unfortunate that cancer treatments have such a high likelihood of causing other types of cancers to develop.

However, life continues on and you cannot waste time worrying what might come but instead enjoy the present and take things as they come.  There is no preparing yourself with potentially hearing those words again.  Even if you do they will catch you off guard as if you had never been familiar with those words before.  Of course, that is all easier said than done and sometimes a little bit of worry is important since it will push for you to find out what is really going on.  Not letting that worry take ahold of your life is the important part to remember and a part that I am always working on.

Lotza love!

Life After Cancer: Sick Days

After spending over 800 days in a hospital over a 5 year time period I will do anything in my power to avoid going to the ER or to see a doctor unless I feel that it is absolutely necessary, otherwise I like to stay away from them.  However, this past week I found myself spending way too much time in an ER room. 

One Saturday morning I woke up with a dull yet painful feeling in my chest when I breathed.  Not thinking too much about it I decided to carry on my day as usual even though I would have loved to crawl back under my nice warm covers and return to my peaceful slumber.  But, I made plans to head to the public library with my friend, Sable, which I was really looking forward to exploring some new adventures.  Yet as the day progressed, that dull pain I felt upon each breath increasingly grew.  By the time Sable and I decided that we needed to leave the library before bringing half of its contents home with us that pain was almost impossible to put out of my head.  After discussing the concern with her and my husband I decided that I would head to the walk-in clinic that was just across the street from our apartment.  From there the doctor decided that I should go to the ER since they were not sure what was going on but my blood pressure was sky high and my pulse was rapid.

After taking a few minutes to talk them down from calling an ambulance to take me to the ER and instead allow me to call my husband and have him drive me, I arrived at the ER where they hooked me up to an EKG and heart monitor and started running tests.  One of their main concerns given my medical history was a Pulmonary Embolism (PE), a blood clot that developed and traveled to my lungs.  In order to rule that out they drew blood and ran a d-dimer level, which shows clotting levels and can tell if the blood is clotting appropriately, and sent me for a CT scan with contrast, which they shot through my IV.  Seemed simple enough until the CT contrast blew out my vein with my IV and a majority of the contrast and saline gathered in a very small area on my arm and caused a large amount of pain and swelling.  Then they had to inject an antidote to help break down the contrast since it is usually excreted through the kidneys and the body does not know how to break down the contrast if it is not in the blood system.

After all of that, the only thing they could tell me was that I may be at the very beginning of a virus and if this was the case I just needed to take it easy, rest, and drink plenty of liquids and to come back if I developed a fever, the pain increased, or I was feeling short of breath.  After 4 hours in the ER I was finally released, not really knowing anything more than what I did when the day began, but in a bit more pain because of the CT contrast fiasco.  Little did I know that the fun part had yet commenced.

In addition to having an arm that was twice it’s normal size due to the IV CT contrast, I also broke out in a full body rash.  It seems that the more I am exposed to something, such as CT contrast or antibiotics, my body decides that it no longer wants to be a fan of that particular substance and rejects it by developing an allergy.  Apparently even my immune system is tired of being sick.  Every time I get sick I end up breaking out in a full body rash because of whatever medication they need to give me.  So far I have developed an allergy to every antibiotic that I have had to take more than once.  What is not to love about that?  Each day I felt a little more miserable until Tuesday night when the pain got so bad that I was unable to breath and my fever was not lowering after Tylenol.

Another trip to the ER!  Their concern was the same as Saturday, they were worried about blood clots so they wanted to run the same tests but did not want to do a CT since I had just had a CT recently and reacted badly to the contrast.  Thus, they decided to draw blood and get an X-Ray to see if there was any indication to send me for a CT.  After receiving the results form my blood tests they were more inclined to send me to CT because my clotting levels were elevated, indicating there could be a chance of a PE.  However, my blood tests also showed an increased creatine levels/kidneys functions, which signals impaired kidney functions and the contrast for the CT could cause further issues in addition to adding to my allergic reaction from the last time.  They decided that it would be better to perform the CT but would give me steroids and Benadryl to help fend off the reaction to the contrast.  In addition to loading me full of Benadryl, steroids, and fluids, they had to do something to help with the unbearable pain that had elevated my blood pressure and pulse once again, and relieved the pain by giving me an anti-inflammatory pain reliever called Toradol, which allowed me to finally breathe without wanting to cry.  This was a major improvement since Saturday.

The ending result was that they believed the membrane around my lungs was infected causing the pain when I inhaled.  This time they sent me home with a prescription for antibiotics and steroids that I was able to have filled at a machine in the ER lobby!  How cool is that!  My least favorite things is having to go to a pharmacy while feeling like a bag of crap.  This neat machine dispenses the prescriptions right there in the ER, eliminating the need to wake up the next day and drive to the pharmacy so I can be on my merry way of feeling like myself again.  Instead I could start on my path to wellness right then and there

Are these neat machines common?  This was my first experience with one and I must say that I am a HUGE fan!

All of this fun stuff started my path to finding a new doctor in my area.  The adventure of establishing a new primary physician and finding a new cardiologist who actually shows that he/she gives a damn about my health has begun. 

Life After Cancer: When Lungs Suck At Being Lungs

You know that feeling that occurs when you just sprinted for 200 yards?  Imagine feeling like that after going up a flight of stairs, or doing simple everyday chores such as laundry or dusting.  That is my world.  Some days are better than others and I am able to easily bound up the stairs to my apartment with ease.  However, most days I feel like I have fifty-pound weights on my ankles and a book bag on my back filled with bricks that leaves me winded before evening reaching the top of the stairs. 

Now imagine trying to actually work out when just the simplest daily activities feel like a workout all on their own. 

I feel my persistence in exercising in some form has allowed me to be where I am today.  Living with a progressive disease involving my heart and lungs that has not progressed much more than when I was initially diagnosed is amazing and rather confounding.  As to why my disease has not progressed a great deal is unknown.  The doctors like to believe it is because of the medication.  I like to believe it is because I actually like working out and try not to let the difficulty in breathing stop me from being active.  I enjoy going on walks, even though my stride may be shorter than typical, and I prefer to use the stairs when possible instead of the elevator, mostly because elevators freak me out but it is also great exercise.  Another contributing factor is that I really love Zumba, although I have a really hard time doing all the moves and mostly make up my own and making it through an entire workout without having to stop and catch my breath is tricky.  Yet, none of that stops me from making a fool out of myself every now and then.  That type of activity just has to be saved for those “good days”.

Another favorite activity for me is Yoga.  The nice thing about Yoga is that you get a work out in while learning and working on controlling your breathing.  This is one of the main reasons why Yoga has become my favorite activity.  It is generally something that I can do each day.  Lately though I have been rather lax about my routine.  Mostly because I am just getting over an infection regarding my lungs, which has just made everything seem even more difficult than previously.  After every illness it always takes several weeks to get back to feeling anywhere close to how I was before and each time I get frustrated from starting over and strengthening my lung capacity once again.  I tend to find myself working out less and being unmotivated to change the time spent moving around because after a certain point it is just tiring to even breathe and always feeling like you are out of breath really is not fun.  Now I am currently trying to get back in the habit of exercising each night as I did in the past but I am not finding that motivation needed to start up just yet.

I wish I could say that I just brush off the feelings of frustration for having to start from square one again and face the troubles head on, but admittedly I cannot.  However, it is something that I am learning to live with such faults both physically and mentally.  After all, there really is no other way of dealing with these issues since they are a part of my life and I can either let it bring me down or try to work around and deal with each instance as it comes.  I had a professor in undergraduate school that always told me to look at how far I had came from where I was several years earlier after relapsing.  I try to think of that when I am frustrated by all the set back and sometimes it help while other times it does not.  Sometimes you just have to let that frustration work its way out of your system anyways instead of trying to suppress those feelings.  It is healthier too, right?

What do you do when your lungs suck at being lungs and allow you to breath as needed and supply oxygen to your vital organs?  What ever you can to keep them and yourself going.  

Birthdays Are A Blessing

Some people freak out when they reach a certain age, more specifically for this post I am talking about turning 30.  I always wondered why.  Maybe they break down because they are not at the point in their life or they do not see themselves where they wanted to be when they turn a certain age.  I can not help but be reminded of the Friends episode when Rachael turns 30 and freaks out about it and starts thinking about where she wanted to be by the time she turned 30 and realizes that everything was going by quickly, or when Phoebe realized that she lost a whole year of her life because she thought her birth date was different than what she knew and she had not completed her list of things to do before turning 30.

As I am quickly approaching this age mark, August 29th (today, eek), I am not worried at all, nor do I worry that I am not at the point in my life in which I wanted to be by the time I turned 30.  

I have done a lot with my life before now and I have had a lot happen as well.  The one thing I think of right now is that reaching 30 is a blessing.

At the age of 19 I was diagnosed with Acute Myeloid Leukemia (AML) and during treatment I almost died multiple times.  It was scary and all I could think was that I was too young for this and there is so much more I want and need to do in and with my life.  My other thought was that I could not leave my family like this.  So, I fought hard every day and night.  I made it through several more difficult times and was in remission.

Slowly, I started getting my life together and was enjoying it once more and appreciating all of those small things that mostly go unnoticed.  I decided to travel abroad and as much as I could, carpe diem, so to speak.

However, after signing up and making my deposit to travel to Morocco to ride camels in the Sahara Dessert and explore the world, I found out that my leukemia relapsed.

I was angry.  Mostly because I knew that the relapse meant more intense chemo and a bone marrow transplant, which were still rather new at that time.  Also, I knew that finding a marrow match was extremely difficult because of all the markers they had to match for it to be successful.  At this point I was unaware of stem cell transplants and how they worked, etc.  What I knew was that the fight was going to be longer and more difficult than the previous.

This round of treatment was even more dangerous because every cell has to be killed, all the good and the bad, more so than with my first instance.  I needed full body radiation to help kill all the marrow in my bones so that the new marrow, or in my case stem cells, could be injected to create a whole new marrow production, so new that it can and will change your blood type to which ever donor’s cell blood type happened to be.

This was dangerous and scary because without platelets there is no way to stop the bleeding if it were to happen, which did happen the first time going through treatment and was one reason I almost died that first time.  Also, without and immune system there is no way to fight off an infection, which also almost killed me the first time around as well.  But this time was even more intense and dangerous since I would have even less of an immune system, even less platelets, less blood cells.

I made it through the second time after fighting death several more times and being diagnosed with severe osteoporosis and a very rare, and when I say rare I mean rare, as in at that time only 5 people in the world having the same diagnosis/disease.  Pulmonary Veno-Occlusive Disease (PVOD), which does not have a very cheery prognosis.  Most of the people diagnosed with PVOD, or rather all since it was such a small number, only lived up to 5 years after diagnosis.  This disease, if you could not tell by the name, affects the heart and lungs and makes the heart work harder to pump blood through a person’s body and reduce the amount of oxygen received in lunges and other organs.  It is progressive disease causing harm to organs over the years, which is why survival rate is low.

Considering all I have been through medically, and everything I have done since, graduating with an undergraduate degree in Psychology and Human Services and receiving a minor in French, as well as studying abroad in both France and Morocco, also visiting Canada a few times and London, and traveling within the U.S. to Seattle, Florida, New York, Illinois, Nebraska, and all the states between Minnesota and Florida on an awesome road trip with 2 amazing friends to vacation on the ocean for 2 weeks; I really cannot complain about where I am in my life.

Thus, I feel achieved and hope that on my 30^th birthday in a few days I will not freak out about my age.  I am sure that it will be like any other day and I will mostly be happy for just being alive 8 years after being diagnosed with a progressive disease that has only a 5-year life expectancy after diagnosis.

All this feels like reason enough to not be worried about turning 30, but I guess I will not know until the day comes.  I guess no one does, which is why they tend to freak on their day of birth.

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?