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.  

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.

Books, How I Love Thee

I know I have not written lately.  I apologize.  It is not that I have not had anything to write about but more so that I have been so wrapped up in reading that when I have a free moment I have tended to pick up my book or Kindle rather than the computer and get lost in a whole different world.

Reading has always been one of my favorite past times.  One can never be bored while surrounded by books.  Also, I do not believe that you can ever spend too much time reading or have too many books, my husband may think otherwise after moving all my books into our new place.  I guess that is the unfortunate part of having a wife that can only lift up to 20 pounds; he has to do all the heavy lifting.

Reading was something that I used to escape from the world I lived in while stuck in a hospital room.  It allowed me to travel worlds previously unknown to me.

What better way to pass the time than to solve murder mysteries with Alex Cross (James Patterson) with each one of his page turning thrillers that grab you and keep you on your toes to the very last page while continuing to be completely wrong about who committed the crime.  Then learning about the life of young Fatima Mernissi (Dreams of Trespass: Tales of A Harem Girlhood) while growing up in a harem and dreaming of the world beyond the courtyard walls, which related to me wanting to know the world and the happenings outside my own walls.  Then adventuring On the Road with Jack Kerouac and Neal Cassady through North America in addition to feeling as if I were infinite with Charlie, Sam and Patrick while driving through the tunnel in Perks of Being A Wallflower.

I may not have always remembered what I read further down the road while going through treatments for my leukemia, but for those moments while I was reading I was able to explore different places and escape the confining walls of my hospital room and the hospital itself.  Not only that, but in those relaxing times and for brief moments here and there I was able to forget about everything else that was going on around me.

 Lately I have been spending extra time reading and rereading some of the books I read in the past and really enjoyed.  Something that I have noticed is that books are being turned into movies left and right.  While I truly enjoy the watching these movies (The Hunger Games and Catching Fire, all of the Harry Potter films, and now the Divergent series, and The Mortal Instruments, and one of my favorite authors from the past couple years, John Green with his beautifully written novel, The Fault in Our Stars soon coming to theaters).  I cannot help but wonder if this is promoting reading of the books in anticipation of the films or if it is stopping people from picking up the book and spending time to read.

I have heard it both ways with some saying that they do not need to spend hours and/or days reading a book when they can spend just a couple hours watching the movie.  Others want to read the book first before seeing the film.  Those who have read the book before any notion of a movie feel conflicted that the movie will ruin their love of the book. Others, like me, try to keep them separate while watching and rating the movies but still tend to rate them together when suggesting whether someone should watch the film and/or read the book.

An example is Jodi Picoult's novel "My Sister's Keeper".  As usual Ms. Piccoult's writing is wonderful.  It tugs at your heartstrings and deals with controversial issues.  The movie adaptation is wonderful as well, but is very different from the book.  Not only does it leave out very important parts of the book but it also has a very different ending.  Thus, in my opinion, if you are going to watch the movie then you should also read the book because it will be a different experience than the movie.  Another big example is the Game of Thrones series on HBO.  Many people who watch the show do not read the books, which is a shame since there is a lot of things that are left out of the books.  It would be really hard for all the extra information to be put into that short series for each season/book.  The show really is great, but in my opinion are even better after reading the books.  

How do you feel?  Would you rather watch the movie or television series than read a book? Or, are you one who likes to do both?

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.   

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.  

My Cancer Story: Chemotherapy

There was always a feeling of uncertainty.  Uncertainty of what was to come, the things that could happen along the way, the outcome of every new thing that was thrown my way. Nothing can really prepare you for all that can happen after learning that you have cancer. Not only did I never know what to expect but I also had no idea what chemotherapy was. All I knew was that it was used to treat cancer. Chemo and cancer, what a heavy alliteration. Hearing one usually means hearing the other and can change a person's life either temporarily or permanently.

Not knowing anything about chemo meant that I had a lot to learn in a short amount of time. I always thought that chemo was one specific drug, but it actually refers to a cocktail of drugs that doctors feel will be the best combination for killing the cancer cells. Two of the drugs that I was given were Cytarabine (ara-C) and Idarubicin (Idamycin), which are common for AML treatment, or at least at that time.

For my type of cancer, Acute Myelogenous (Myeloid) Leukemia, there were different stages of chemotherapy. The first stage was the Induction Phase. The goal of this stage was to kill all of the leukemia cells from the blood and reduce the number of blast cells, which are immature cells, to a normal range and put the cancer into remission. This was a very intense stage because of the large doses of drugs that were administered. The weeks that followed were equally intense. Since chemo does not just target the bad cells, but instead kills all the cells in your body, including the ones that support your immune system, it is very important to protect yourself against germs. A simple infection, like a virus from someone visiting who may not even know they are sick, can lead to many complications and possible death since the immune system cannot fight off the infections. When people find this part out they tend not to visit to reduce the risk of unknowingly passing on a virus, which tends to lead to a lot of isolation and alone time. Understandable.

Fortunately for me the induction chemo put my cancer into remission. If remission does not occur with the induction phase, more chemo is given until remission is achieved.

So, I got to relax in a hospital room for the month while my blood counts regained strength in numbers with nurses coming in every 4 hours, day and night, to get my vital signs, a lab person coming in every morning around 4am and sometimes during the day to poke me for blood, a flock of doctors, interns, med students, etc. cramming into my room every morning around 7am to see how I was doing and to let me know about all the exciting things the day would contain. It was all very exciting. Plus there was that delightful and delicious hospital food. Just in case you could not make up your mind between the two decisions you had to choose from for each meal, it did not really matter because you had the next week to try the other option. Yup, every week had the same option for each day in that week.

Unfortunately the hospital food was not good, AT ALL. Breakfast was alright, you cannot really screw up cereal, right? I learned early on never to order anything that needed to be cooked if you actually wanted to eat that morning. Eggs always tasted like silly putty/rubber, toast was soggy by the time it made it to my room and pancakes were similar to eating cardboard. The oatmeal was alright once you added a few packets of sugar and luckily there was a kitchenette on the unit floor so that I could get toast, along with several other goodies whenever I wanted. Good thing there were several other restaurants around the area so that I could ask my mom to run down and get me something that was edible, at least when I was feeling up to eating.

Chemotherapy kind of ruins a person's appetite. Even if something actually tasted good, which was rare since chemo also wipes out your taste buds, it is never good coming back up. Medicine has come a long way in helping with the side effects of chemo, especially when it comes to treating the nausea. However, all the Zofran in the world can not keep some people from giving up their lunch. It was the best med that I received for helping reduce the nausea, but it did not always help. Sometimes it just gets bad enough where nothing can help settle the stomach, even if it doesn't have anything in it.

It definitely was not the best of times, but it also would not be the last time of feeling like I was hit by a mac truck. I still had 4 rounds of consolidation therapy ahead of me after I made it through the induction phase.

Consolidation phase is needed to kill the remaining cancer cells. Without this phase the leukemia is likely to return. I will give a brief description of this since there will be even more in the future about everything. This is the follow-up stage. After my counts rose and were back in the normal range I started my first out of four rounds. For a week I would be admitted to the hospital to receive a week of consolidation chemo. Once that week was up I was released and sent home to wait for my counts to drop. If at anytime during this point I developed a fever of 100.5 or above I had to get to the emergency room and back to the cities because the fever meant infection, which was life threatening. I usually wound up back in the hospital after a week of being home. With each round, it took even longer for my counts to rise back up to a range where it was safe enough to start the next round of consolidation chemo and each round was harder and harder to get through. Each round has a story of its' own, a story to be told in future posts. They are not light stories, but then again this is a rather heavy topic.

Lotza love!

My Cancer Story: Bone Marrow Biopsies and Lumbar Punctures

I know I said on my earlier post that the next one would be about chemotherapy, but that is going to be my next one. This one I am going to discuss a bone marrow biopsy and a spinal tap so that when those stories come up in the future you will know more about the process.

Neither one of these procedures are fun and even thinking about them makes me cringe a little bit, but they are important to know about since it is all part of my story.

Before they start the chemo the doctors not only had to do a bone marrow biopsy, which they needed for finding out more information on the type of cancer and how many blast cells were in my system, but they also had to do a spinal tap to make sure that the leukemia was not in my spinal fluid.

What are blast cells? Blasts are the cancer cells and they do not carry any oxygen, which is why I had that severe pain in my leg, because blast cells were gathering in that area making it difficult for the good blood cells to get by and provide oxygen to the area.

One of the worst procedures I had to endure several times throughout the years was a bone marrow biopsy. Imagine a corkscrew being twisted into your hip bone. Did you just wince a little bit at the thought? It is OK, I did too. However, that is basically what a bone marrow biopsy is

A bone marrow biopsy (BMB) is exactly what it sounds like. Usually the bone marrow is collected in the hip bone, but can also be taken from other areas as well. This is not a pleasant procdure, and neither is the spinal tap for that matter. However, if I had to choose one over the other I would totally go for the spinal tap. Soon you will understand a little bit more about why. In order for the doctors to get a biopsy of the bone marrow I had to lay flat on my stomach (because they obtained my biopsy through my hip bone) and the doctor would numb my skin first, as well as the path the needle would pass through. After numbing that area they would tap the hip bone with the same needle to numb it as much as possible in an effort to reduce the pain. When the skin was numb they took another needle that was hallow, which I referred to as the "corkscrew"because this would take a sample of the bone marrow by the doctor putting a lot of pressure down on my hip bone and twisting the needle into the bone in a similar fashion as twisting a corkscrew into the cork of a wine bottle. The doctors are then able to use the sample of the bone within the hallow needle and allows for the next step. Now the hallow needle allows for the doctors to aspirate some of the bone marrow, which is really really painful since there is no way to numb that process. The sharp pain would shoot straight through my body, but fortunately the pain generally subsided after they were finished sucking out some of the liquid. Thank goodness the doctors administered a small dose of medication that helped relax me before beginning this lovely process.

Now onto another delightful procedure, a lumbar puncture, otherwise known as a spinal tap. A spinal tap, in my opinion, is not as painful as a bone marrow biopsy. There are a couple different ways of positioning oneself for this procedure and it usually depends on which position the doctor is more comfortable performing the tap. I tried all of them and there really is not a difference for the patient. For all of them you are basically positioning yourself in the fetus position. Then the skin is numbed and the path that the needle will travel, and the spinal needle (a very long ass needle) is inserted between the lumbar vertebrae and is pushed in until the doctor feels two pops. After the second pop the stylet from the needle is removed, which allows spinal fluid (cerebrospinal fluid - CPS) to drop and be collected into a vial. After this procedure is finished I had to lay on my back for a minimum of 30 minutes so the fluid could build back up and reduce the chance of a spinal headache or migraine occurring, which is one of the side effects. The spinal fluid is checked for leukemia cells, which would require chemo to be administered directly into the spin. Fortunately for me there were no signs of leukemia cells in my spinal fluid.

I also consider myself really lucky that I was out of it for these two procedures the first time. However, I did not know at that time just how many of each I would still have to do in the future. I had a total of 8 bone marrow biopsies and 6 spinal taps done throughout the years. Some of them were better than others, but I had a really really bad experience with both the spinal tap and bone marrow biopsy, which you will of course learn more about in future posts.

Both of these procedures contribute to the next phase. They help the doctors determine what types of drugs they should use for the chemotherapy cocktail and they help stage the cancer and the specific type. All very exciting stuff. :)

Lotza love!

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!


  

My Cancer Story: Waking Up to A Surprise

I am not exactly sure on the time frame from when I was listening to that amazing Irish accent to the next thing I remember. I am pretty sure that my pain was being well treated because when I woke up and was clear minded enough to know I was awake and could thus remember a little bit about what was going on. I was slightly confused. Alright, so I was really confused. Upon waking up I noticed some discomfort in my chest on the right side of my body so of course I had to know what that feeling was. Since I would need something that could be accessed regularly for chemotherapy and frequent blood draws, which I was really excited about because I hate needles and having to get poked everyday would really suck!), I had a Hickman catheter inserted into my chest.

What is a Hickman catheter? Well I shall tell you and if you find it hard to understand just google it for a visual image :) A Hickman is a catheter that is inserted into the jugular vein in the neck and goes toward the heart, and then the other end is threaded over the clavicle bone, then exists in the right upper chest area. Mine had two tubes that split from that one catheter but there can also be three tubes. Well, why don't I just see if I can post a picture for you so that you get a better idea of what it is. 

http://s9.beta.photobucket.com/user/taser1984/media/nosmoking/Hickman_catheterMedium.jpg.html

Voila!!

This catheter makes it a little safer to administer the large doses of chemotherapy because chemo is deadly if it leaves your bloodstream. It is a poison after all. 

So that was a pleasant surprise to wake up to, except that someone neglected to tell me that when those lab people come into your room at the wee early hours of the morning, usually when you have finally fallen asleep, they cannot actually use that port to draw blood. Only nurses can do that. So every morning I ended up getting stuck with a needle to get my blood drawn. My excitement for having that nifty little catheter dissipated after learning that harsh reality. I may have been a little bitter because of those needle sticks but in all honesty I usually ended up with a phlebotomist who could never just stick me once. So, I believe I had that right. 

The next thing I knew, this hoard of people in white coats came galavanting into my room. It is my team of doctors, for this rotation anyways. So, I got to be introduced to a whole bunch of medical students and other types and what nots, only so that I could be introduced to a whole new group in a couple of days since I arrived close to the end of the rotation period. There was a new rotation every month, but after so many rotations it would start all over so those from the first cycle came back around.  These people had the nerve to always come into my roam like a herd of elephants just as I was falling back into a wonderful sleep after being stabbed by the phlebotomist, seriously that is what some of them did, they took that needle and stabbed it into my arm, and if they didn't hit a vein they pulled the needle just far enough out so that it did not leave the skin so they could angle that little sucker in another directs to stab it again until they found what they were fishing for. 

Through time these doctors and med students grew on me. Some of them I came to like, some not so much, and others I just could not understand what they were saying.

The downside to being in a place where the doctors constantly change is that I did not feel like I had a doctor that was fully invested even though I was assured that I did. I just felt like I barely ever saw him. But for someone who takes a while to warm up to others it was hard not having the same doctor to discuss stuff with day after day. The upside to the rotation was that if there was a doctor that was not my favorite I knew he or she would be gone within a month anyways :)

My oncologist was quite the character. He kind of reminded me of a cross between Santa and Professor Dumbledore (the original Dumbledore) from the Harry Potter series. He had this really long grey silvery beard that matched the color of his hair, which was always pulled back into a ponytail that reached down to his lower back. Just upon looking at him that first night I was at Fairview I knew this man would be a very interesting and probably a fun doctor to have.

https://www.aamc.org/newsroom/reporter/dec09/87466/a_velomobile_for_two.html

Throughout the years Mom and I got to know this Dr. Hammerschimdt (a.k.a. The Hammer) better. And boy was he interesting, my favorite type of person.

This picture is Dr. Hammerschidt in his velomobile, which he took everywhere. You can see how my vision of him as Santa really was not far off. :) This was one of the first things he tried explaining to me about his life outside of work. It was hard to picture until one day when Mom and I were walking about and saw it parked by the bicycles next to the building. But it is not a bike and if you refer to it as one The Hammer will correct your rather quickly.
What is that weird contraption he is driving? That is a velomobile. It is kind of like an enclosed tricycle but in reverse?. It has 3 wheels, 2 in the front and one in the back, where as a trike as 1 wheel in the front and two in the back. It is all powered by one's own legs.  This was the second thing that led me to believe that this guy was going to be a fun doctor to have.

Because there are many things that I do not remember during some of these posts, such as the last one, my mom has expressed that she would like to corroborate with me in filling in some blank areas so that sometimes I can have a post that fills in some of those unknown areas and clear up some things that I am a little fuzzy on.

Topic for the next post: Chemotherapy. Oh the joy.