Tuesday, June 17, 2014

The Price of Living with Chronic Mylogenous Leukemia

This is a complicated subject to address because we all have struggles, we all have financial burdens and we all must do our best to survive. I hope that you do not misinterpret my observations as being ungrateful for the opportunity to live, but more as a window into the life of a person that lives with a chronic cancer, other chronic illness or condition; or into the life of a person that has undergone treatment, been cured, but now also lives with many of the same, recurring financial struggles.

Medical strides are a blessing, but they do come with a price.

When you hear the word “cancer”; what is your first thought? My first thought was “How long do I have to live?” My second thought was “OK, prepare me for the battle; I intend to fight.” What never entered my mind was the impact that living with a chronic cancer would have on our future, financial stability and lifestyle.

As we all know, medical care and expenses are often difficult to contend with. One serious medical event can have devastating, life altering and often permanent affects upon an individual, or family. I will not get into medical insurance and the likes of Obama Care here, but I will focus more on the reality of living with a chronic cancer; one that is never cured. This type of cancer, along with other chronic illnesses, is plagued with ongoing expenses that last an entire lifetime. Many others that have been “cured” of their disease will also live a lifetime full of complications, with continuing medical expenses and additional medical treatments’ that are a direct result of their “cure.”

This creates a long term financial burden.

When I was first diagnosed with leukemia, I did not realize how large the financial burden that living with a chronic cancer, really can be. The medication alone, if not covered by insurance or other financial assistance, runs more than $15,000 per month; fortunately there is help available, as no one could ever afford to stay alive at this price.

What this does mean however is that those of us living with CML, now have another permanent, non-negotiable, monthly expense added to our budget;  a necessity, just like our house payment, utilities and food. For many, this added monthly expense creates such a hardship that many lose their homes. For me, I am extremely lucky to have a low co-payment for my medication; of course, the payment for the insurance costs a fortune, but I am very grateful that for now, we are able to afford it. There are many others’ that struggle monthly, just to afford their co-pay for their medication and their premiums for their health insurance.

That being said, if living with a chronic cancer was simply managed with a large health insurance premium, and monthly prescription copay, life would be pretty darn good! The problem with that scenario however, is that that just is not the case; being given the gift of life is much more costly and complicated than that.

You see, in a perfect CML world, you would only have to see your oncologist once, every three or so months; you would receive a checkup, a pat on the back and a “Keep up the good work” speech and carry on with your life. But because of the uniqueness of this type of cancer, there are very few CML specialists out there and they are scattered from hither to yon; so for me, as well as many others, this means a long distant trip; for us, it is nine hundred miles, one way.  So add the cost of long distance travel, a minimum of four times a year, to the price we pay, to continue to live and receive appropriate medical treatment.

If you are lucky during these visits, your extremely expensive lab tests will come back with acceptable results; thus allowing the cost of your medical travel to be held to a minimum of four times a year. If not, you will have to undergo additional expensive testing, and see your oncologist more frequently, which adds additional expense to your already stretched “budget.”

Of course those quarterly doctor visits only deal with your CML. There is additional expense in dealing with additional physicians because your truly amazing, life saving medication causes many other complications, conditions and side effects, for which you require more medications, with more co-pays!

In addition to all of these doctor visits, it is not uncommon for CML patients to make many trips to the Emergency Room, throughout the year. This year alone I have had an MRI, a Nerve Conduction Study, and Electromyogram, a chest X-Ray, an echocardiogram, a CT Scan and more blood tests than I can count; even with health insurance, I am drowning in medical bills! The results of these additional tests often result in complications that lead to additional treatments, which may or may not lead to a hospital stay and always more medical expense.

So what is one to do?

A common answer to that question would probably be to “work.” This leads me to another aspect of “living” with cancer on a day to day, every day basis. The truth of the matter is that those of us living with CML, or other chronic illnesses,  often feel utterly and completely miserable, every day; making it extremely difficult to survive in a working environment on a consistent and regular basis. As a result, many have lost their jobs, or are unable to find one. Often, the energy required to just tend to our own basic daily needs, can be more than many of us have to expend.

Needless to say, this creates an additional financial burden. For those of us that are fortunate enough to have medical insurance and significant others to carry our burden, we must remember to count our blessings and show our gratitude. Living with cancer is extremely expensive and it takes a toll not only on your pocketbook, but on your heart and soul, too. And this does not even begin to discuss how it financially impacts all of those around us, too.

I do not know what the answer is, but sometimes I wonder whether or not those of us that are paving a path into the future treatment of cancer, could be cut some slack; somewhere. Those of us living with CML are the guinea pigs of future cancer treatment. We are a whole new breed, that a decade and a half ago, would not have had the opportunity to figure out “how” to survive the financial burden of living, long term, with a chronic cancer.

For this I am grateful, and I will continue to try and earn whatever I can by peddling my meager wares in my Etsy shop and by writing; my blog of free information currently earns approximately ten dollars per month!  It isn't much but it is something!

For those of you that would like to contribute a token of thanks for all of this free information, I have set up a Patreon page to see what happens!

I appreciate ALL of your support; monetary or otherwise and plan to continue to “give back” to our CML community.


Blessings to all and thanks for reading!

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Bricks for the Brave!!