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 

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.

My Cancer Story: "It Is Just Hair, It Will Grow Back"

"It is just hair, it will grow back."

As much as you would like to think or hope, those are not the words a person wants to hear when their hair starts to fall out after chemo or when they find out that they are going to need chemo and that is one of the possible and likely side effects. It was a common sentence in the days before and when I started to loose my hair. I liked to manipulate my hair by braiding, curling, flipping, twisting, coloring and cutting it in various styles. Thus, hearing those words did not comfort me or make me suddenly realize that they were right, it was JUST hair.

Instead, having someone tell me that my hair would come back just made me feel silly for being upset that I would be bald. I don't know why people wouldn't just let me be upset about losing my hair. I like having hair, who doesn't? I was also well aware that my hair would return but knowing that did not change anything. It would take a while for the chemo to wear off enough to allow my hair to start growing back and even when it did start to grow it was a very slow process.

When I first started chemo I was too sick to really care about the side effects and losing my hair. I just knew that in order to get better I needed to go through the treatment recommended by my doctors. It wasn't until I started seeing my hair on my pillow in the mornings and then noticing large clumps coming out while taking showers when it really hit me that it was time to shave it off.

When I first started to notice my hair falling out I knew it was a matter of time before I would loose it all so this was the time to try something new, mohawk, spikes, edgy looks, etc. So, one of my friends brought a friend of hers that was in cosmetology school who gave me what I thought would be the first haircut and in a couple days I would get another one making it even shorter, probably mohawk style. However, my hair fell out too quickly for me to be able to mohawk it, which kind of made me sad. Instead of increasingly shortening each cut I shaved it a few days after the first cut.

It was but still was not an easy decision to make. Before being diagnosed with leukemia I finally got my hair cut and colored the way I really like it and was super excited about that achievement, what can I say, I was 19. Then just a few weeks later I was getting ready to shave it all off. The easy part about the decision was that all that hair on my pillow and my shirt was super annoying. The hard part was realizing that I finally reached the stage in my treatment where I would be bald for quite some time afterward. It made me think of what it would be like when I was able to go home and how I would respond to others looking at me, starring, and wondering why I was bald in the middle of winter.

I then had to decide if I would sport the new look, wear some fun funky hats, or try and find a wig that I liked. I went with the fun funky hats since I was not all that comfortable wearing a wig and they seemed to itch and were kind of hot. I also learned how to tie a scarf around my head, which was cool but did not seem to keep my head warm enough.

The first time I lost my hair I was really self conscious about it and would wear a hat at all times. For the most part it was because the air was cold and the hat kept me warm, but I also just did not feel comfortable without the hat. It became my security blanket. It helped hide the fact that I had cancer, especially when I was out and about. No one really thinks about someone wearing a hat in the middle of winter so it helped deter the stares that I experienced the second time around.

After I relapsed in 2005 I decided that I could care less what others thought. Of course there was a small part of me that was uncomfortable with people staring at my bald head, but I also knew that the human race was curious about every abnormal thing they saw in society and being a bald women was not normal.

I still wished that I did not lose my hair both times and it did not help that people once again said that it was just hair and it would grow back. I knew that from my previous experience with cancer and it does not make anything easier. Knowing how hard the first experience with cancer was did not make the second any easier just because I knew what could come as well as the fact that there was no way to tell what else could happen.

Sometimes when you try to say something to help make someone feel better it ends up making them feel like they are being silly for feeling the way they do. Understandably, some people do not know what to say so they say what they first think. Sometimes not saying anything, but instead listening to what another one is saying is the best. At times the comforting words helped but at other times I just wanted someone to listen to me rather than respond with words of encouragement. Sometimes that is all anyone needs.