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: 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.