Sometimes You Just Need Someone to Listen

You are going to be fine.

You will make it through this tough time.

I know how you feel.

This will make you stronger.

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

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

Your words of encouragement and strength are needed,

But I also just need you to listen.

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

I just want you to listen.

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

But to listen to the words of fear and uncertainty.

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

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

I know you just want to help,

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

I appreciate that as well.

But sometimes just listening is all I need.

A listening ear is stronger than words.

Sometimes, I just want you to listen,

Even if I am silent.

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

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

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

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

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

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

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

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

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

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

Friendships Bud & Blossom Through Time

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

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

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

Cancer and Discrimination in a Small Town

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

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

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

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

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

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

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

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

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

As always,
Lotza love.

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

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

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

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

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

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

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

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

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

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

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

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

My Cancer Story: Support Groups and Technology

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

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

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

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

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

Crazy, huh? Hard to think about?

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

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

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

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

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

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

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

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

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

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

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

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

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

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!