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.

Showing Emotion and Asking for Help: Why is it So Hard?

Why is it so hard for people to ask others for help when they need it? We try to tell ourselves that we are fine and that everything will be ok and things will pass even when we are not sure if that is true.

There were times during my cancer treatment when I knew that I needed someone to talk to and listen to what scared me. I needed someone who would not tell me that things would be fine and that I was strong and would push through everything. I needed someone who would allow me to be scared rather than tell me that I just needed to be strong and think positively. But I was unwilling to admit that I needed that help. It probably would have been beneficial for me to seek someone like a counselor to talk to, but for some reason I just could not accept that I needed that type of help.

Maybe it was because, as a cancer patient, I was already being looked at differently by all my friends and family members that I felt like I did not need one more person to give me that cancer patient look.

If we know we are in a state of depression, or just not feeling like ourselves, why are we afraid to acknowledge that feeling? Why are we more willing to let ourselves feel crummy instead of wanting to do something about our mood so that we feel more like ourselves than different and foreign?

Why is it so hard to ask for help when it is needed, especially when it revolves around mental health? What is wrong with showing fear? Uncertainty? Sadness? Anger? All those emotions that wash over people at any point in their life can intensify once they are exposed to the world revolved around treating cancer.

The person with cancer often gets overlooked and the main questions end up being asked about how the treatment and procedures are going rather than how you, as a person, are handling everything emotionally and mentally.

People tend to push for you to stay positive all the time, to keep your chin high, enforce the fact that you are strong and can get through this difficult time. As long as you stay positive you will make it through everything.

Why can I not scream out in anger when my body reacts to a drug and makes me itch like mad? Why is it wrong for me to be angry that my life has been interrupted by something that could kill me and prevent me from doing all the things that I grew up wanting to accomplish? Is it really normal for someone to be positive at every moment even after all the side effects from the chemotherapy and various drugs that accompanied the cocktail has made the body feel foreign to the owner?

Everything revolves around cancer, tests, treatments, procedures, etc. rather than the actual person.

It took me a long time to realize that it is OK to cry. That it does not make you less of a person for feeling some sort of emotion and allowing that to show on your face.

Life in general is not easy, it is not suppose to be, otherwise we would always get what we wanted and nothing would make us really work for those extra things we want and enjoy in life, right?  Also, it would probably be a little boring and I do not like boring. Instead I enjoy challenges and face them with as much strength and determination I posses. However, I never wanted something as challenging as cancer, nor would I have ever expected it to happen.

Maybe sometimes boring is good.

Growing up I was not one to cry in front of others. When I got upset and felt the urge of tears wanting to show my true feelings I would run away to be alone, secluding myself to deal with my feelings myself, rather than expressing them out loud. I thought that crying would make me look like a baby or a wimp and I was always trying to be a grown up and strong like my mom.

Since I only saw my mom cry on rare occasions, such as when we lost a beloved mare while she foaling, or when someone passed away, I assumed that was the only time worth crying. Of course there have been a few times in my 29 years on this planet where I have been super frustrated and stressed past my max where I broke down and did not care who was around me. But most of the time I would just try to take everything in with a positive attitude and let the world know that I was fine with whatever may come.

Yet, once I saw my mom enter my ER suite, and by suite I mean a curtained off area, crying I knew something more than just a pinched nerve was causing all the pain in my leg. But nothing prepared me for what I was to learn in the next 24 hours.

(For more information, please refer back to a previous post, Finding Out I had Cancer)

I knew that in order to live I would need to start chemotherapy right away, per doctor’s orders, so I obviously agreed, as did Mom, and we started right away. Also, I was so doped up that I could have agreed for them to harvest all my organs. Thus, it was a good thing my mom was there to make sure everything went the way it should.

Even after finding out that I had cancer I did not let myself cry. The only time I would cry was when I was in an extreme amount of pain. Maybe part of the reason was because I had no idea what was in store for me, because I also had no idea what leukemia was or how it was treated or anything about chemotherapy. But I did know that I needed to be strong and in various ways. I needed to have the strength of mind and my attitude to know that I could make it through the tough times ahead and not give up even in the rough periods. 

However, after several months in and out of the hospital, various complications from the drugs, zero energy and not being able to spend time with family and friends around the holidays made me so mad. During one of my short stays at home between consolidation treatments we had a family gathering with my grandma. This was just after being released from the hospital after a spinal tap, which did not heal right and I was left feeling absolutely miserable and unable to stand or sit up without being sick to my stomach with a pounding headache. I could not enjoy my time with my family at the dining table. Instead I had to remove myself and lay back down on the couch, which really bugged me.

At that point I just let it go and broke down. I was so sick of everything. Never feeling well, never having any energy to do anything, always feeling like I needed someone around me rather than being my independent self and just not knowing what to do with myself physically, emotionally, and mentally.

I felt better after releasing this emotion that I tried so hard to keep inside and away from others. All this energy that I spent to try to keep my emotions in tact just made everything more difficult. It was hard to try to stay positive about the whole situation when I was bottling up so much of everything.

Why did I feel the need to keep everything bottled up? Why could there not have been someone who would come in and visit with me while staying in the hospital to talk or listen to my concerns and feelings? Isn't mental health just as important in the battle as the drugs being given? 

I feel that with every diagnosis and every treatment protocol another step should be added to the process. Finding a professional who can speak with individuals dealing with various situations so that they do not feel so alone, so they can work through their thoughts and emotions and try to get a feeling of control back in their life. Just because someone says that they are dealing with everything fine and seem to be handling things with ease does not mean that they are not falling apart inside. 

Here is a thought for parting. One of the things I noticed when being admitted to the hospital was that they always asked me what religion I was and if I would like a chaplain to visit. Even upon saying no the question would come up again later or a chaplain would eventually stop by my room. Why is a chaplain easy to provide, even when unwanted, but a counselor, therapist, psychologist, etc., is not? 

Big Changes Occuring

I feel the need to apologize to anyone who reads my blog and is anticipating the next post. Things have been absolutely crazy and insanely busy on my end.

I recently just accepted a new job in a new city and have been working on finding a place to live, packing, and working every single day this month, seriously, every day basically. Since I enjoy my current jobs, especially the manager at my main one, and the fact that the work schedule for the whole month of November was already out when I accepted my new job, I made the decision to have my start date at my new position start the beginning of December so that I could complete the current schedule. 

To start, I had many days already scheduled at my current position, which I thought was good because it would help with the extra expenses of moving and finding and paying for another apartment rent while currently still in a lease agreement, thus being responsible for 2 rents instead of just one. However, the number of days has increased even more because people have been getting sick and calling in and unable to find others to cover their shifts. Apparently I am too nice of a person because I will work for others in need, yet many people are unwilling to help me out when I am in need without me having to pick up even more hours of work. 

All in all, I have been working morning to late night and have not had an opportunity to finish some of the posts that I have been working on. next month I will only have one job instead of three and will finally have some time to sit down and write and I really look forward to that time. I wonder what else I will do with all that time on my hands. Yet, I really look forward to only having that one job and I really look forward to this huge learning experience I am about to embark on. 

In addition to this wonderful opportunity and great learning experience, I will be finally living in the same town as my best friend. Not only that, but I will be working at the same company as her, and even better than that is that we will also be living in the same apartment building! It is going to be like the television show Friends, and I am super excited to be around my best friend again. We will never get anything done once again, lol. 

So, I apologize for the lack of blog posts the past couple months, but soon that shall be fixed and I look forward to being able to share my writing and story with everyone again really soon. 

Lotza love! 

Sometimes You Just Need Someone to Listen

You are going to be fine.

You will make it through this tough time.

I know how you feel.

This will make you stronger.

It is different when you send a message, but when I come to you to talk I just want you to listen.

Let me just tell you how I feel, what I am scared of.

Your words of encouragement and strength are needed,

But I also just need you to listen.

Just let me feel sorry for myself for a short time.

I just want you to listen.

I do not want you to make me feel better through words,

But to listen to the words of fear and uncertainty.

Please do not tell me that this, too, shall pass.

It could be worse, or that everything will be OK.

I know you just want to help,

To make me feel better, and encourage or send strength.

I appreciate that as well.

But sometimes just listening is all I need.

A listening ear is stronger than words.

Sometimes, I just want you to listen,

Even if I am silent.

Just a touch of the hand,
Will let me know you understand.     

A Simple Touch. My hands have come a long way since I first started drawing. Some work out better than others.

I thought it was great when people sent words of encouragement and strength and it was really needed. Yet, there were those days when I started talking about what scared me and how I felt about the situation and I just wanted someone to listen to me and not tell me something positive to help me feel better. I just needed to hate the world or feel sorry for myself for those moments and have someone just listen. An ear to just listen was the one thing that was the hardest to find when it was needed.

I know that many people say things in response to what they are hearing to help make the other feel better about what they are going through, and a majority of people say something positive because they are unsure of what else to say.

There is nothing wrong with that. Even I admit to responding in a cliché way when I am faced with shocking and/or sad news. It is never easy responding to things that are uncomfortable.

Maybe asking the other person what they are looking for when they need to talk can help. Would they like advice? Words of encouragement? Do they just want to talk to express their emotions without needing anything in return except for your focus on what they are saying?

People say a lot without actually speaking. Their body positions, movements, and gestures, as well as facial reactions often say more than words do and it is important to pay attention to those things in addition to their words. All of these go into the action of listening.

Is it inappropriate to ask the other what type of listening they would like from you?

Some people are just really good at reading the situation and judging from the way the conversation starts and continues. The reactions from one another can help guide the other's responses if they know what to look for. A friend of mine is really good at listening and just letting you get everything off your chest before saying anything. Those were some of the best conversations I had and still have today because she does not try to make me understand that things will get better in time or that whatever is bugging me is just  another bump in the road. 

Some of the best days I had while going through treatment was when a good friend of mine came and sat in my room with me watching the television and just hanging out with me. For the most part I ended up sleeping and insisted in watching the same episode of ER over and over again. My friend did not care, especially since she would switch the episode once I fell asleep again, and did not feel the need to keep me company by talking but just provide support for being there with me for hours on end. She did not expect me to keep her entertained or hold up a conversation. Her comforting and listening to me was simple, she was just there. it was perfect and just what I needed.  Not only was she willing to listen to what I had to say, but she listened to what I needed and knew that the one thing I needed was to not feel so alone and isolated from everything and everyone. Even though I would sleep most of the time she was there visiting, she would stay rather than leave and let me rest. Just knowing that there was someone by me to keep me company helped my spirits and mood so much and made the healing and recovering process a little easier. 

Friendships Bud & Blossom Through Time

Thus, not only is it important to listen to what someone is saying, but by listening to what they are not saying through their actions and what one knows about the other can have more impact. By knowing that I loved spending time with people rather than being alone all of the time, which is what happens a lot when one goes through treatments for cancer, she listened to how I was feeling and knew that I just needed that comfort of knowing that I was not alone.

To wrap this all up, messages of encouragement and strength, along with anything else one might say to provide support are important and very much needed to help get through tough situations. However, sometimes a person just needs another person to listen to them without getting a response in return for all of their thoughts and frustrations.  

For those of you who like to watch movies and are interested in watching a film with cancer as the subject and how it affects the person's life, I suggest checking out the movie 50/50 ( http://www.imdb.com/title/tt1306980/). The film is inspired by a true story about a young adult who is diagnosed with back cancer and how he deals with the diagnosis and his fight against cancer. Of course the way he manages the disease and the side effects that occur are different than what could be for others with cancer, the film does a good job portraying some of the situations individuals come across during their treatment and diagnosis stage, as well as what it is like having everyone know you have cancer and the responses that people say when they find out. It may not be completely relatable, but there are several scenes that were really familiar. My favorite is the car freak out/yelling session, because I can definitely relate to his emotions and situation at that time and have done that more than a couple times.   

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.

My Cancer Story: Support Groups and Technology

While I have been writing this blog I have come across some really awesome cancer support groups on the internet, which is wonderful for those who are currently going through cancer treatments as well as those who, like myself, have kicked that bad boy's ass. I cannot help but look back to 2003 and wish that there had been easy ways to find support groups like the ones available today.

The first time I was diagnosed with leukemia I always felt so isolated because not only was it hard to have visitors to make sure that they would not accidentally get me sick but also because I was a couple hours away from my family and friends. Since my friends and I were in our first year of college there was always something going on and life was busy. Thus there was not a whole lot of time to drive down to visit me for a few short minutes, although when my friends and family did visit it always made the day and the next few days easier.

It was not as easy to stay in touch with friends and family like today. Facebook had not been created yet. That one easy spot to go to and talk to all of your friends and family in one easy place did not exist in that time. For those of you who rely on facebook to keep in contact with everyone today or even just to waste some down time when you are bored, think about what it would be like to be stuck in a hospital for weeks at a time without that one simple website... Fortunately facebook came along in 2004 so that by the time I relapsed and was about to spend a longer stent of time in and out of a hospital I had that resource to help keep in touch with others in addition to a Caring Bridge website blog.

The easiest and almost only way to talk to someone who was not able to visit or not around at the time was via the phone in my room. Skype had not been created yet either and you all know that since Google Hangouts is fairly new that it was not an option either.

What about a cell phone? I had one of those monsters back then. However, they were not allowed to be on in the unit and since I was always in the unit I could never have it on. What would you do today if you were not able to have that cell phone by you? You wouldn't be able to play Candy Crush!!!!! What if someone texted you?!?! The horror!

Crazy, huh? Hard to think about?

It was hard to find people that could understand what you were really going through, especially since in 2003 people did not seem to want to talk about their cancer very openly, which made it difficult to know who you could talk to who could really understand. Even for myself, it took me a couple years to be able to feel even slightly comfortable talking about my experience, mostly because a lot of the things that happened were still a little foggy and it took time for all those memories to come back, and still today some of them are still lost, which in the long run may be for the best. That is at least what my mom continues to tell me. I cannot imagine being her and seeing someone go through half the things that occurred over the years after finding out that the sudden and sever hip pain was leukemia. Then to watch as I almost died due to complications many times. In one of the other posts that I am currently working on I talk about how important my mom was and still is throughout everything and how she was the rock and strength through all the difficult times and my main pillar of support.

My doctors and other health care providers recommended that I talk to a therapist about everything but I did not know how that could help. How are they suppose to know how I feel if they have not experienced life with cancer before? Even fellow cancer patients might not understand everything that someone else is going through since even the same cancer and treatment can vary depending on the individual. Also, each person has a different outlook on the events in their life.

The first year after finishing chemo I did not think that I should be able to complain about how hard everything was and still seemed to be because I didn't lose any part of my body or any motor functions like others that have had cancer. Thus, when the time came for me to ask for a wish through an organization for young adults that is similar to the Make a Wish foundation I wasn't sure I deserved it and had a hard time asking my doctors to sign a form stating that I did indeed deserve a wish of my choosing (within reason and within the continental US). However, now I realize that anyone that has to work that hard to survive and deal with all the things that cancer brings to the table, they do indeed deserve to celebrate somehow.

Technology has come a long way over the years since my first diagnosis and those battling this disease now know that it is still no picnic, but maybe it is just a little easier knowing that finding support groups that you can meet fellow cancer survivors and those going through treatments and chat with them through google hangouts or skype and build up an internet support system is available compared to 2003 when those thing did not exist.

Even today I still wonder how people find some of the groups that they talk about. I must not be looking in the right places or using the right keywords.

Life After Cancer: The Impossibility and Yet Possibility of Having Children

Some people grow up knowing that they want to have kids when they get older and others don't think about it, or at the time believe that they do not want kids later in life. I grew up believing that I never wanted kids. I just never really saw myself as a mother. Later on I thought that if I did have kids I would like to adopt at least one of them because there are so many children looking for good homes. But lets face it, I was young and had so many things that I wanted to do before I would even consider having little ones running around. 

You never know how your mind will change throughout your life, so learning that I would never be able to have kids of my own physically at the age of 19 did not cause a great deal of turmoil at that time. In the moment I was more concerned with trying to stay alive than anything else. One of my next posts will talk more about why I can no longer have children but I need to at least briefly explain parts of the reasons with more details later. One of the reasons was during my consolidation therapy I had a major complication and had to be put into early menopause to prevent similar future complications. The second reason was due to total body radiation that I had to go through before I had my stem cell transplant, and the third reason has to do with a rare disease involving my heart and lungs, which I developed from a complication from graph vs. host disease after my stem cell transplant. All of these contribute to me not being able to have children of my own. 

Even though I did not think that I wanted children at that time in my life there was no way to know that at some point I would meet someone with whom I would want to have a family. Knowing that it was already impossible to bear children and constantly having a doctor, one with whom I have to see every six months repeat to me that it would be dangerous for me to get pregnant, makes it even harder now that I would like to have kids. It is frustrating to repeatedly have to tell a doctor that you see regularly that there is no biological way to become pregnant and having to explain why when they should already be aware of that makes the situation more difficult. 

Another tough part is that recently (September) I got married and everyone wants to know when we think we will start having children. I can't blame them, people are curious and a lot of them do not know my history and those that know do not know everything. But it is still hard to repeatedly respond to that question.

Just because it is impossible for me to have children physically it is still possible to have children through adoption. Recently my husband has been talking about wanting a baby and the topic comes up even more when we are with family and their kids or friends who have children as well. 

But it is still hard because there are so many things that you have to consider before starting the process and even more things that are taken into consideration before you can even begin the process of adoption. Instead of just deciding that you are ready to start trying for a baby you have to wait for someone that you do not know to decide that you are ready and financially stable to support a child. That is definitely a job that I would not want to have. To tell someone hey, I know you really want to start a family but not right now, of course in a more professional manner. Oh, that would be hard. 

So, this is what has been on my mind lately and I am sorry that it took such a long time to get this post up but having three jobs all start up at the same time made life super chaotic until I could get use to finally having to wake up at a specific time every morning. :) Oh adulthood, you are not as fun as I thought you were going to be when I was a child. :)  Hopefully I have finally gotten things on track so that posts will be more regular.