Sunday, January 29, 2012

Transplant and TNT

A few days before I was diagnosed Ross got a piece of mail from Team in Training to do a marathon. We talked about since we both had lost someone to leukemia and thought that it would be a great idea if he did it. I didn't think that I would be strong enough to do a marathon. Boy, was I wrong. I think I went through a couple of marathons. Within a couple of days of me diagnosed Ross decided that he would do the Portland Marathon because if I could fight the battle, he would run for it.
A few days before I was going to go in for transplant Team and Training was having the kickoff party for the marathon. I was there as Ross' honored teammate, not really knowing what that really meant. I was very bald at this point so it was pretty obvious that I was a cancer patient. This lady walked up to me asking who I was and if I would be interested in talking. I thought that if I could be strong enough to battle cancer that I would be able to talk in front of a large crowd not really knowing what the size of the group would be. I have always had a fear of talking in front of people, so this was a big step. My mentality had changed and I looked forward to conquering my fears. I got up to speak and it was a very slow moving in my mind. I spoke from the heart and broke down right in front of everyone. The not knowing what was going to happen to me with the transplant was freaking me out. I never had a standing ovation before. It was a great feeling but so hard to get through. Now onto the transplant. The first day was really hectic. I got admitted, when and got my port put in that hurt like no ones business. They screwed up when they were putting it in. I am not sure what they did wrong but even with the medicition that they gave me I could still feel the pain. Then I was off to the radition department and that's where it got intresting. I was there to get fitted for lung blocks that were going to protect me from the radition. I just thought about this, maybe that is why it is so hard for me to breathe when I am going up a flight of stairs. I will get back to that later. They put you on a bicycle seat with this plexy glass around you and tell you to hold onto the railing. It isn't comfortable and I don't know how I am going to stand like this for 45 minutes to an hour. So I standing there getting prepared to be fitted and all the sudden I feel my world closing in around me. I said out load "I think that I am going to faint." Sure enough I did. Apparently, I wouldn't let go of the railings. When I did wake up I found this man standing very close to my face and he had been pounding on my chest to wake me up. In a very short time my poor chest had been through a lot and I only had been a there a couple of hours. This process wasn't starting off very well. The next couple of days I would do radition that wasn't as bad as I thought. I was really scared to do it, because I never heard anything good about radition. There were so many side effects that I am still not looking forward to. I had four days, twice a day for radition and getting chemo as well. It took a few days for the side effects to set in. The radition and chemo took it all out of me. The two treatments had killed my immune system and stem cells. I was at that point, my insides were all gone. On May 31st, I received the stem cells transplant. It wasn't as exciting as I thought. It was a bag of her stem cells that would go into my port, but it was the most important day of my life. I was going to live! :-) I decided on June 4th that I was going to get out on the 14th. Since every case is different they tell you that you are going to be hospitalized from four to eight weeks. I thought that was way too long and I was going to get out of there way before that. If you know me, I love to set timelines and goals for things to happen. I never doubted for a second that the transplant wouldn't take. I didn't know what my chances were for the transplant not taking. In a few months I would learn a very hard way that the transplants don't always take. There isn't much that I remember about the transplant stay. I am sure that I was on good medications. I am sure that I had good days and bad days. I could have keep a long but if I know myself, it probably wouldn't have made much sense. I do remember one day I was walking around the ward and this woman was in room with a patient. I am assuming that it was a mother and daughter and the daughter was the patient. The mother asked me how many days it had been since my transplant. I think that it was a couple of days after my transplant. Anyways, I told her and she turned to her daughter and said see she is out walking around. I wasn't sure what the conversation between them was about. So I went walking around the ward and stopped at the board that listed all of our names and how far we were out of transplant. The girl that I had talked to was about a week more than I was. I later found out that she hadn't even gotten out of her bed to go walking. In order for you to go home you need to walk, eat, poop and not be hooked up to meds. She was one of those people that were going to be there four to eight weeks. It made me strong and push harder to get home. Everything was a success! The transplant was only half the battle. June, July and August were harder than the four months before. You know what to look forward to on the next blog.

Tuesday, January 24, 2012

April and May

April really started for me on the 21st of March, when I got out of the hospital. While I was in the hospital my family had to move me out of my place because my best friend Jayme worked at a preschool and I couldn't risk getting sick. So instead of going back to the home I knew and my bed that I loved so much I was going to be living with my mom, stepdad and sister. I had never lived in Hillsboro before and didn't want to live all the way out there away from everyone but I didn't have any other choices. Don't get me wrong, it was a very nice set up. We each had our own room, I had all my tv shows and dvds, and Charlene and I shared a TV in the living room. At first I was really weak and could barely do anything on my own. You really have to swallow your pride when have to have a caregiver. There is nothing like giving up your independence. I couldn't bathe by myself and Charlene would have to cover up my PICC line everyday and help me get into the shower. I bet you didn't know that I had to change my sheets at least once a week and had to use a different towel everyday for the risk of catching something. I couldn't use a hand towel to dry off my hands, only paper towels, again risk of catching something. I wasn't allowed to make my own food. When I mean make my own food, I wasn't allowed to pour myself a bowl of cereal. I wasn't allowed to touch the boxes or cans that the food came in. Some many restrictions and yet I was happy to be alive and spending time with my family and Ross. The hardest part about being in Hillsboro was the lack of friends that came to see me. My closest friends would come and see me and I love them so much for all their support. It was lonely during the day when Charlene would go to the gym and run errands, but everyone lives their lives and I understand it was a long drive for most.
I went through another round of chemo in mid-April to make sure that the cancer was still in remission and to prepare the transplant. Then came all the tests. Who knew that there was so many tests that you have to do to make sure that your body is ready to go through a transplant. We even had to go to a class on how to live after the transplant, but again they still didn't teach me with the emotions that I was going to go through. It is all by the book and straight forward which I love, but it is such a small part of what you have to deal with. These were probably the two easiest months for me. There was a lot to do and keep me busy. I built my strength back up and felt like a normal person except without the hair. I had a great party 2 days before I went in for my transplant. I really love all my family and friends that have shown so much support throughout the last year. It is the small gatherings that I have that really make me smile. I have learned to not take for granted the small amount of time that I spend with anyone. I love to make people laugh and brighten their day. I try to write down 5 things each day that I am thankful for. It is amazing what small things that you really learn to appricate. Look at the small things and the big things because it the big things that can bring us the joy too. Next will be about the transplant and Team and Training.

Thursday, January 19, 2012

Reflection on Febuary and March

I go through the paperwork that once was my life in a day by day breakdown of the medications, the food I ate, and keeping track on my in-take and out-take. I was diagnosed and had my first bone marrow biopsy the following day. I remember how much it hurt to have the biopsy. It was some of the worst pain that I had ever gone through. Little did I know that I would have some many done that I can get up and walk around normal after I have one now. It is amazing how the body handles pain once you know what you are getting yourself into. When you do something for the first time you have conquered your fear. You will never have that unknown again but then you know that you are stronger than you were before. So many people say that I am their inspiration. My thoughts now are to better this world and have people understand that life is so short and we take some many things for granted. There is so much else that I want to teach but it is if people are welling to listen and want to learn from my experience. I hope this blog will help others and myself. At the beginning of treatment I was placed onto 11 new medications, most of which were chemotherapy drugs to put me into remission. I had to make the choice on weather or not this was what I wanted to do. I could have gotten up and left the hospital and given myself a month or two to live. If there is one word that I have learned is determination. It is all a mind game, setting goals and believing in yourself. I want to live and have a life for the 50 years. People say that I am a survior but really I feel like I am warrior and I have to go to war with myself. I don't feel like a survior because I have so much more to go through. Survior feels like it is an end result to something. The insides of me are fighting each other making me weak even to this day. On 2.19.11 I had a PICC line places in my arm to recieve the medications in a strong vein. 2.20.11 the doctors had a CAT scan performed and everything came back normal. I don't remember this happening but it is documented that I had one. Almost every day that I was in the hospital, I had to recieve medication for a migraine. I was taking Imatrex and Oxycodone and it was barely working. I still don't know why I was getting the migraines but it was like clock work on when they would set in. I hated to have to ask for mediciation. I didn't realize at the time that I really needed to be in the best comfort as possible. They were always looking at the liver and kidneys making a little more fear in my life, but luckily nothing ever came of it. Only one week into it I was started on Flexerall for pain. The amount of pain that my whole body was going through doesn't compare to the side effects of the medications. Besides the chemo meds the pain meds have really blocked my memory of things that I have happened. Reading over the notes, there seem to be a lot of set backs that I don't remember. I had to get a lot of transfusions and my counts wouldn't go up and then they weren't able to preform the lumbar punctures and biopsy. On March 2nd it was documented that I weighed 116 pounds. That was down from the 127 that I started with. I was watching my life in front of me disappear. This cancer was trying to take me. I was fighting with all my heart and soul. It hurts my heart now to think about all the pain I went through. On March 4th around 1:20pm I was told that the chemo didn't work. Thank you Charlene for documenting it. I remember sitting on the bed and just losing it. I knew at that point it wasn't going to be a easy road. Good news is on March 7th we found out that Charlene was my match. Oh that felt good to have some good news. It is really hard to read over the notes from what my family took. It is pretty straight forward, no fluff which is how I like it. At this point I haven't even been the hospital for a month. But because I know how it turns out, I know that I get sent home on the 21st. Those next 10 days were about getting better, being in remission, and fighting for my life. Not eating because of the mouth sores were probably one of the worst experiences. They are like shutting down your mouth and vocal cords. Needless to say I lost more weight. By the end of the month I was down to 104 pounds. It was the most fragile state my body had ever been in. The next couple of weeks I spent in bed or in a chair watching tv. Next will come April and May. I hope that you will learn something from this journey from me. Please feel free to share your thoughts.

Tuesday, January 17, 2012

My sister

The day after I was diagnosed my sister was by my side. She left her life in Las Vegas to be with me. I am sure that she felt the same as me and had no choice in being there. From the moment that my mom called her to let her know, poor thing was driving when she found out till she left me in June. Those months were the best we have ever spent together. I couldn't have asked for a better sister and companion. I needed someone to be strong and be there for me. She met that and so much more. Spent several nights with me in the hospital. She had to see me at my worst. She had to change me out of my clothes several times because of the accidents that I would have while I was sleeping. She would help me take showers when I wasn't even strong enough to stand on my own. There is something to be said about unconditional love. It means that you will do ANYTHING for another person and put that person first in time of need. It was easy for me to have her help me. For all of our lives I was the big sister and had taken care of her and now she had to help me in so many ways. When the doctors decided that the best thing for my chances of living was a stem cell transplant we knew that she would be a match. I never doubted that she wasn't going to be a match. We thought it would be a simple test and she would just do it. Oh the things that the doctors don't tell you. It took a couple of weeks to find out that she was going to be a match and that was the best day of our lives. Then came all the testing for both of us. Luckily, we pretty much had the same diseases as kids so she wasn't putting me at risk for catching something else. Both of us showed that we had heart attacks, no really. They had to do several tests on our hearts to make sure that they were going to be strong enough for the transplant. They still can't explain why our hearts show that we have had heart attacks. One day, I can't remember what hospital stay it was the doctor told my sister in front of me that it wasn't going to be her fault if I died. I couldn't believe that the doctor would say something like that. It really hit me hard and I still think about that. Of course, it is true that if I were to die it wouldn't be her fault. While I was at home we would spend most of our time watching the Today show, soaps, and Ellen. I pretty much had something to watch every hour of every day. She would make me breakfast, lunch, and dinner. She would have to do all the cleaning because I wasn't allowed to. I am still not allowed to do very much cleaning. She would drive me to all my appointments and never complain about anything. We were living at my moms for a few months and it was a hard adjustment to make. Most of my friends didn't come and visit like they did in the hospital. It made me sad to be all alone. She kept my spirits high and dealt with my mood swings. When it finally came time to donation the stem cells, she was a trooper. She had it alot harder than I did. She had reactions to the medications. She had to have it taken out of her neck because her veins weren't going to be able to handle it. She was saving my life and I am forever greatful for it. I am so blessed to have a sister that has taken such good care of me and put me first for so many months. I hope that one day I can repay her. She also cut her hair short to make me feel better about me losing my hair. It was all these little things that made me feel better. Taking me to the store was huge. It was hard to be "locked up" for so long and not be able to go anywhere. I would reach for something on the shelves and she would slap my hands because I wasn't even supposed to touch the boxes. It was nice to be able to just get out of the hospital and house. Then I was hospitalized again in July and there she was back by my side. Ready to take care of me and help me though things again. Her attitude always was positive, but I guess that is how we were taught to deal with things. In order for things to go well you have to thing positive and believe that they will. Then I was hospitalized again in August, the worst stay of them all. I woke up and was confused at were I was and who was in the room. I remember looking over and see my sister but I didn't know who she was. I couldn't figure out who this woman was looking at me. Finally things started to make sense, kinda. I couldn't believe that I didn't know who my own sister was. In my mind still I remember waking up and still not knowing who she was. I will go into that hospital experience another time. I only wish that she had been there the whole time when I was going through cabin fever. She was the only one that I wanted around to take care of me. But I understood that she had a life and needed to get back to her husband and dogs. I couldn't believe how long she did it for. I have a hard time being away from Ross for a day. She is truely one of the strongest women I know. Then it came to celebrating my 100 days after transplant and we had a trip to the beach planned. I was so excited to get out of town and spend sometime with my family. It was so much fun! Having my sister there to experience everything is so important to me. In less than a month it will be a year since I was diagnosed and I am headed to Vegas to see her and her husband. She is truely the one that I want to spend my time with because without her I might not be alive. Then in May will be my one year since my transplant and we will all be headed to Sasquatch. Again she must be there for all my celebrations! I am so happy to wake up each day and be greatful for the life that I have. It is all the small things that happen to make me who I am. I am so thankful for my sister! I love you Charlene!

Sunday, January 15, 2012

The next step

When the doctor told me that I had leukemia all I could think is that I have the same thing that Colin had? I didn't know that much about leukemia except for that it had taken a life that was so dear to me. From that moment I thought that I am going to fight this and not have the same outcome as Colin. I thought that I am not going to cause that kind of pain of loss to my family, boyfriend and friends. That was me, always worring about how others were going to be effected. The only thing that I could do is think about beating this very scary cancer. I didn't think or care about what the consequences were going to be by making my choices so quickly. I don't regret the choices that I made. I wanted the most direct plan to get me to remission. I immediately wanted to start treatment because I wanted to live my life as a normal woman again. I had no idea that I would still dealing with it a year later. Now I realize that I will never have a "normal life" I will always have to worry about getting GVHD. That there are life long effects from the medications and treatments. My body will never be "normal". I will go through things that most will never understand. I might have just turned 30 but have the body of an 80 year old. Tht getting a standard cold could hospitalize me. My liver, kidneys and lungs have to be monitored closely for the rest of my life. I will have special doctors and will always need insurance. One of the first things that they tell you is that you aren't going to be able to have kids, it was the furthest thing from my mind. I couldn't think about bringing a kid into the world when I don't know how my life is going to be. I can't even count how many times I was told that I won't be able to have kids. There was finally a point where I couldn't hear it anymore and just lost it. Losing the choice of being able to have kids was taken from me. When you lose the choice of being able to do something, it doesn't feel fair. I started the chemo right away and it seemed so easy and I thought this is nothing. Well, if the chemo doesn't work then why would there be side effects? When the doctor told me that the first round of chemo didn't work I was devestated. It is so hard to comprehend what they were telling me. Why wasn't the chemo working? I will never know. I had to wait a few days before they started another round of chemo and luckly that took. The side of effects were so bad. The mouth sores caused me not to eat. I remember asking the nurse if I was going to lose my hair and he said yes. Even though you hear what they are saying you don't want to believe what is going to happen. I was in the shower, just pulling out my hair and crying. You don't know something feels until it is happening to you. Your hair defines the way you look. I never had dealt with anyone losing their hair from chemo. I didn't want to look like a cancer patient. I wanted my life back, but I knew that I had a long road head of me. So I accepted what was happening. This was the truth and my life was no in my control. It was in the hands of the doctors and nurses and I had to trust them like I never trusted before. Ross said lets shave it and I was okay with that. I didn't like to lose my hair so getting rid of it all at once was going to be the easiest. Jake was kind enough then to bic my hair and you know what? my attitude changed. I looked good as a bald woman. I was a warrior! That's what the nurses called me, The Pink Warrior! To have my room all done in pink added character to the dull room. I thought every day that I needed to stay strong and let the medication do what it needs to do and I will beat this. I have thought many times of Benjamin Franklin whom I have looked up to for many years. The quote that I have made my motto is "Energy and Persistance conquer all things". It was me to the fullest. I have always put my 100% into everything that I do. The other man that helped me and felt like was always there was my Grandpa Hester. I want to the strong woman that my grandpa would be proud of. I want him to be able to look down and think that I am doing right by him. Several times I was "lucky" that I was at the right place at the right time. I am always listening to my inner self. I felt his presence the whole time that I was in the hospital. Even though I was in the hospital fighting for my life I was still dealing with life. Your bills don't get to be placed on hold while you are in the hospital. I had an amazing support team. My mom and stepdad really steppped up to the plate and helped me keep my credit good. I had been working so hard to get it to be good. I thought that I was going to lose everything. I thought that I was going to have to file bankrupt. All these added stresses are what you want to deal with but it is apart of life. I learned very quickly to take notes because life was going by too fast. Also learning about the cancer that I had and my odds. I remember that the doctor told me what they were but told me that I needed to think that it was 100% chance of living. One thing that I learned very quickly was to think positive. I couldn't think about why this awful cancer had chosen me. That came later when I was stuck at home with too much free time on my hands. I don't really remember that much from the 32 days that I was there. Oh them chemo brain that I am forever going to have. I do remember all the friends that came to see me. I never went a day without seeing someone. Ross was there everyday except one. He is my rock! He really stepped up to the plate and I will always be thankful. My family, mom, dad, sister and step dad were amazing too. I will get to them another day. Like I said before Feb. 18th my life and relationships changed forever. When I went into the hospital I weighed 127 pounds when I left I was 104. I was a cancer patient. Next blog will be about my sister and her role.

Tuesday, January 10, 2012

Almost 30

I have decided that I am going to start blogging on a regular basis. I want to share my first year in my 30th with everyone. But first I must go back and share the past year. This time last year wasn't all that great for me. It all started with the Ducks losing, then the Saints and the Patriots. I know that it seems small but I was feeling like my luck had run out. I was the person that you went shopping with so that we could have a close parking spot. But for some reason I felt like my life wasn't going that well. My relationship was on the rocks and headed for failure. I was getting these bruises on my legs and arms. I wasn't too concerned because I have always bruised easily. Finally, my co-workers told me to call my doctor and then doctor told me that I needed to go to ER. At this point in my life I was just recently diagnosed with anxiety and hoping that the pain in my neck and back would go away soon. Little did I know what was going to happen to me. For my 29th birthday I wanted to do two things, get a tattoo and get my ears pierced. The tattoo went fine but when I got my ear pierced they wouldn't stop bleeding. At the time I wasn't sure why, but what was happening was my blood wasn't clotting. There were all these signs that you don't realize until way after something has happened. So back to where I was. I was at Good Sam in the ER but it wasn't the regular ER it was like a doctors office. I don't think that they realized what was going to take place for the 4 hours. I thought it was going to be nothing. Then all the doctors kept coming in. There was my mom, Ross, Jayme, nurses and doctors all in one room. They said that they are going to admit me. I didn't think anything of it until they took me up to the cancer floor. Like really? Are you serious, you aren't going to tell me anything but you are going to put me on the cancer floor. They had a specialist come in to tell me that I have acute lymphocytic leukemia and that I need to go to OHSU. Just like that my life changed forever. Most of the story you already know but from Ross' perspective. So I will start my journey by blogging. All my feelings for everyone to see.