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.  

Cancer and Discrimination in a Small Town

I may be cancer free, but it will always be attached to me, especially while living in a small town where everyone knows my name and my story.

Yes, I have permanent side effects from all the chemo, radiation, medications, and stem cell transplant. I have a rare and progressive disease that affects my heart and my lungs. But I am still alive and able to work. Sure, I may get sick from time to time, but doesn't everyone?

I love living in a small town, until it comes to finding employment and people knowing way too much about my previous health issues, and some current ones, and worrying about what I cannot do instead of giving me a chance to show them what I CAN do. I kicked cancers ass twice while maintaining a part-time student status. Stop discriminating and start believing!

How do you prove yourself if no one is willing to give you a chance?

I love to work and have really enjoyed the jobs that have given me a chance. Working at the greenhouses right outside of town has allowed me to work outdoors, which is great since I love being outside and I get to work with native plants and I share my love of the outdoors and plants with my mom. In the past I absolutely loved working as a certified nursing assistant in a hospital setting as well as a nursing home but I had to resign from that position since I had to lower my lifting limit to 20 pounds due to my cardiologist's demand in effort to keep my heart and lungs in a more stable condition. The director of nursing at the nursing home was really sad that I had to resign because she knew that I was a hard worker and enjoyed myself as well.

That is who I am. I love to work and enjoy everything I am given the opportunity to have. But I cannot enjoy that if no one allows me to show them how much I love to do a good job, and my best, at what ever I do, and have a good time even while performing even the most daunting of tasks. Enjoying your job makes those you work with enjoy theirs, as well as anyone around you.

I love my town, but I may be forced to move just so I can find a job where I can use my degree in human services and psychology, because working makes me happy, and all I want is to be happy and enjoy this life I fought so hard to keep living.

Maybe one day I can survive off of selling my art pieces, which has always been a dream of mine. Until that day I will continue to search for employment while working on art pieces in my spare time.

Just in case you are wondering I am working on getting something set up so people can order prints of paintings, drawing, photographs, etc. that I have completed.

As always,
Lotza love.

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.