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: 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.  

Life After Cancer: Difficult Disease With A Difficult Doctor

When you are diagnosed with a difficult disease the last thing you want to have to deal with is a difficult doctor.

I currently have a doctor who is a cardiologist and is the worse doctor I have ever had, and that is really saying something since I have had many doctors, some that I did not like but did their job well. However, this one I do not like and does not do her job well, at least in my case. Yet, she is still my doctor. Why?

Upon many requests for another doctor, she remains to be my cardiologist.

The last time I was there for my follow-up visit and requested another doctor I got the same story, she is the only one who is qualified. Except this time after asking about getting a different cardiologist the intern studying under her decided to voice that it made her uncomfortable and that it felt awkward being asked this. As if it was not uncomfortable for me and awkward asking for a new doctor because I could not stand going to my appointments with her. She also responded with the fact that I only have to see her twice a year. I do not think that should matter. If my doctor is not providing the best care, or what I feel is the best care, should I not express that concern?

Do I not deserve to have a doctor that cares about my case enough to remember my history rather than telling me each time how important it is that I not become pregnant because it would be too dangerous for me, thus having me explain for the umpteenth time that I have already been through menopause due to complications from chemotherapy? More than that, do I not deserve a doctor that respects my time as I do theirs so that I do not spend 4-8 hours just sitting in a clinic waiting room unable to go anywhere because no one knows when she might get to my appointment?

I understand that things happen that make doctors run behind on their appointments, but I do not think that it is alright to make your patients waste their time sitting in a waiting room waiting for you to get to their appointment if it is going to be multiple hours. Update them so that they can do something with that time, such as finding something to eat. The worst part about waiting all those hours is that I maybe spend 20 minutes with the doctor before leaving. Yikes, that is a terrible ratio!

Why has it been so difficult to find a new cardiologist?

Complications from my stem cell transplant left me with a very rare and progressive heart and lung disease. At the time of my diagnosis there were only 5 people in the world who shared the disease, Pulmonary Veno-Occlusive Disease. It is a form of hypertension and is the occlusion or narrowing of the pulmonary veins and venules, similar to Pulmonary Arterial Hypertension. Due to the narrow, oxygenated blood is unable to circulate at a regular pace and can leave a person short of breath with the simplest amount of physical activity. Because of the pathology and lack of response to PAH therapy it gets its own classification. The prognosis for PVOD is not something that people like to hear. For most, the disease progresses very fast and patients are reported dying within 2 years of diagnosis.

I have been living with it for more than 2 years now and for the time being, or at least the last time I was able to see my doctor, the disease has not progressed a great deal. This has not been reported in other patients with the same diagnosis. What can I say, I am truly one of a kind. :)

Since the disease has so many unknowns, I have been a human guinea pig since being diagnosed.

This makes finding a new doctor even more difficult. Because the disease is so rare there are not a lot of doctors who know anything about it or how to deal with everything involved. But this doctor is so arrogant that she does not believe there to be anyone else available that can follow my case in any sort of way.

However, she is not doing a very good job of following my case either. Along with the large amounts of wasted time, she is also incredibly difficult to get a hold of. I am still waiting to get an appointment with her for my 6 month follow up visit; it has been 5 month since that visit was suppose to happen.

Why not make more waves? Demand a new doctor? Complain about the lack of response to phone calls. Don’t I deserve more? I know I deserve quality care, and I do not believe that I am getting that care. 

I had a nurse during my transplant that was so rude that I refused to let her back into my room and talked to the nurse manager that night about it, and actions were taken right away to ensure that she not be my nurse in the future. It takes a lot for me to request for someone to not come into contact with me, if that gives you any idea of how rude she was. However, replacing a doctor is not so easy, at least not in this case.

So how do I go about finding a new doctor? Even more, how do I find one that I can afford to visit. The other hard part about my current cardiologist is that she is several hours away, and now after moving even further from Minneapolis it is a longer distance. The costs of driving there, paying for parking, and eating meals adds up, especially since she is not the only doctor I have to visit down there and they can never coordinate the schedule so that the appointments line up.

There has got to be a way for long distance care, right? All the tests can be done closer to home and results sent to “the expert”, especially since the time spent with the cardiologist, or any of the others in her group, is very short and not worth the cost. If I felt like I was actually receiving care, then I might be more inclined to feel better about the situation However, upon leaving I know nothing more than I did before the appointment.

Have I been too nice? Not demanding enough? I try to be polite and respectful when asking about a new doctor, maybe I should be more demanding and less polite. This nice girl attitude has not gotten me anywhere with this group of cardiologists. But how do I advocate for myself, for my health, when I do not feel like I am being heard in the first place? I should not have to be someone I am not in order to have my voice heard.

How do you deal with difficult doctors? How do you make them see you as more than just a patient, but as a person who deserves their full attention? How do you get them to realize that they are not providing their best care even after telling them and asking for a new doctor because they do not seem to have your best interests in mind?

I guess it is time to roar a little bit louder.

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.

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.  

Life After Cancer: Follow-up On Previous Post

One of my readers left a wonderful comment on my last post, which got me to think about things slightly differently.

Life is adventurous, and if I would not have had cancer I would not be where I am today and I wouldn't change that for the world. I have been blessed to be able to do some really awesome things, such as travel to Paris, London, see the beaches of Normandy, and I traveled all over Morocco. These were things I only dreamed of doing all those days I was stuck in a hospital room. Sure enough, after getting better I decided to make them a reality. I cannot honestly say that I would have ever gone overseas (except for Paris since I have wanted to go there since I was in high school) if it was not for cancer.

I guess it is all about how one looks at something. It is better to be optimistic and think of all the different things still available rather than focusing on the few things that are no longer possible. This is something that I have been really trying to focus on whenever I start to get upset or sad about not being able to participate in soccer events or join my mom on a horse ride, or even when I think about my future and not being able to be a nurse. However, sometimes you just need to be able to say that life sucks, as long as you let it only be true for a few moments at a time rather than allowing it to consume you.

I may not be able to be a nurse for a career anymore, but I am able to do something else that involves doing something that I live for everyday, helping other people in need. This I am able to do in a variety of ways, I just have to discover all those different opportunities. This is the adventure I am on now and who knows what path it will bring me down.

Shout out to g Vijayank for the wonderful comment on the last post. I hope you and everyone else continues to read and enjoy my blog.

As always, questions and  comments are always welcome.

Lotza love!

Life After Cancer: Losing A Part of Yourself

I read a blog today that got me thinking even more about something. The blog was about losing a body part to cancer and accepting that fact. It was really interesting. But it got me thinking about a different loss.

What if you lose something that makes you feel like yourself?

What could that be? What would it be for you, the reader?

One of the hardest things I have had to deal with after having cancer was changing a lot of the things that I did before cancer. These are the things that I felt contributed to who I was/am. Now, how is this more important that a body part? For starters, losing a body part and losing a part of what makes you feel like yourself area two different things in my mind. Of course it is terrible losing a leg or a breast to cancer, I am not saying that this is easy and I really wish no one had to worry about losing something, but medicine has come a long way in being able to reconstruct some of the parts that can be lost. The only body part I lost from cancer was my ability to have children because of all the radiation and chemotherapy that I endured, as well as being put into early menopause at the age of 19. I am not exactly sure why this happened, but for some reason the doctors did not think about the consequences of a female not having any platelets in her body to help prevent her from bleeding to death when her monthly cycle comes around. Due to that oversight, and me not knowing that could have ever happened and thus never thought about it, the doctors did everything they could to stop the bleeding and as a preventative measure decided that menopause was a good alternative. I would have to agree, but with menopause comes a bunch of other things that a 19 year old gal should not have to worry about. Luckily for me I was able to do hormone replacement therapy for a while to help with some of the heat and cold flashes. At the time I was not really worried about my prospects of having kids because I never wanted any. However, your mind changes when you get older and then get married. Now I wish I could have children, but even if I was able to still conceive children my body would not be able to handle the stress that comes with being pregnant. So, I am rather glad that I can save that money that would have otherwise been spent buying tampons on something that is so much more fun to buy. However, for all my lady friends that come over I generally keep a box on hand just for you just in case.  ;)

So what was it that I lost that made me feel myself?

There are a few things that I have done since I was really young. Riding horses, hiking, playing soccer, and bike riding. You may think these are weird things to have lost due to cancer but for me these are the things that I love and still love today, I just cannot enjoy them like before.

For those who do not know me and have not read other parts of my blog, I had a stem cell transplant in 2005 for Acute Myelogenous Leukemia. The transplant was a success, but it came with many complications. One of which was an attack from my new immune system on my heart and lungs leaving me with a very rare heart and lung disease called Pulmonary Veno-Occlusive Disease. This means that it is harder for my lungs to fill with oxygen and my heart has to work harder to pump oxygenated blood throughout my body. This makes any physical activity hard because I get short of breath easily. Because of that it is almost impossible for me to play soccer, the only sport I enjoy playing, and it is really hard for me to enjoy biking and hiking. Luckily I can still bike a little bit and hike small, semi flat areas, but I really enjoy long non-flat areas, and the same is with biking. It may be silly to miss these things and you may be thinking, well at least you can bike and hike a little bit, and you are right. But, these are things we did every day and all summer long while I was growing up so it is hard to let go of that (and I am not saying that this is harder than losing a leg or a breast or any other body part, this is just another take on losing something to cancer).  You would think after six years I would be over this and just accept that it is something that I just will not be able to do, but I cannot. I am hoping that at some point in time there will be an advancement in medicine that will make these things possible for me again. Is that too much to ask?

The other thing that I have not been able to do for several years now is ride horse. Apparently, after going through menopause your bone density decreases and makes your bones more brittle so they break easier. However, the amount of time between starting menopause and getting to the point where one's bones are weak enough to break easily was unknown. Thus, no one thought to put me on bone strengtheners to help prevent easy breaks. So, after my childhood horse passed away and I got on a new one who, for some reason, spoked at something unknown, I found out just how strong my bones were not. When my horse spoked and jumped I went about an inch up out of the saddle and when I hit the saddle again I broke my pubic bone, which caused a great deal of pain and caused the horse to spoke some more and I hit the saddle horn and broke another part of my pubic bone and then slide off the back side of her and onto the ground. Once I hit the ground I broke my elbow and another area of my pubic bone. Thus, ever since then no one, meaning my mom, will let me ride horse until my bones are strong enough and even then she is not sure she really wants to chance it. Riding horse was a connection that Mom and I had that I loved. Almost every weekend we would pack up the trailer and go camping and trail riding.

Now every summer when Mom packs up for a weekend or longer of trail riding I get very jealous and sad that I cannot go with her. As if losing my horse was not hard enough, I also lost being able to do my favorite thing in the world.

How do you get over giving up things like these that you spent your life doing before you had cancer? Does that feeling of loss ever go away? Should these things be a part of who I am? Am I crazy for letting them be me?

How would you feel if you were no longer able to do just one of your favorite things?

I may have the rest of my life to find something to fill the voids of these things I can no longer do and I am grateful for that, but I have yet to find anything to fill in the holes, yet. But, I am open to any new adventure that comes my way and thanks to the advancements done by research to treat cancer, I have that luxury at least.

Lotza Love!