Saturday, October 25, 2008

Light the Night

The UCSD team tent.

My Mom, Natalie and Brandon.

My BMT Coordinator Peggy.

My nurse practitioner Carrie and another
lady from the BMT team.


Yesterday was a full day for a lot of people in the UCSD BMT unit. I had a long day because I had an appointment at the infusion center for blood work, and needed 4 hours of magnesium replacements. Not so much fun! I also had an appointment with Dr. Curtin, my primary doctor. Things are still going really well. The only thing that has changed with me in the past couple days is that my small rash started to spread a little more on my arms and neck. He wasn't too concerned right now because it still isn't that bad. He said it probably is a little GVHD. I have some topical cream that I am putting on it and just have to report if it starts getting a lot worse. If it ends up getting a lot worse they will have to put me on some meds to control it. I am supposed to meet with dermatology sometime to get it checked out a little better. Until then I am just suffering from the itch that this wonderful rash is bringing, but the cream is helping a little. I did receive some really good news from my bone marrow biopsy. It came back looking really good and free of any residual leukemia. Hip Hip Hooray!!! The first hurdle is over. Lets just hope and pray that every one from here on after declares the same great news. They were not able to tell me if my donors have taken completely over yet. I should get that information sometime soon.

I say that it was a long day for everyone because last night was the Light the Night Walk for the Leukemia and Lymphoma Society. My mom, brother and even my little niece all did the walk in my name. It was at night and everyone walked around Qualcom Stadium with illuminated balloons. White balloons were for survivors, red were for supporters and gold were for in memory of those that have passed away due to blood cancers. Overall there were over 3,000 people that participated in the walk last night. A lot of my BMT team at UCSD participated in the walk with their families. My mom and brother joined the "UCSD team" that included doctors, nurses and patients. All together there were like 75 of them. It is so neat because this just shows how much we are all like a family in this BMT unit. It is definitely not like a "normal" doctor, patient relationship. It is so involved and it gets so personal that you really develop relationships with all of the nurses and doctors. I hear about their lives and families when I have appointments. It makes going to the doctor a lot more enjoyable, especially for as often as I go. So from everything I heard the walk was a success. They were able to raise a lot of money for the Leukemia and Lymphoma Society which will help in research and finding a cure someday. Carrie, my nurse practitioner told my mom that next year at the walk we are going to see Lyndsay carrying a white balloon. I can't wait!! If I am not out here I will definitely find the walk where I am, because they have them all over the country. Thanks to everyone who participated and donated toward the cause. You are really helping to make a difference in a lot of peoples lives.

Tuesday, October 21, 2008

Bone Marrow Number 6

Today was my first post transplant bone marrow biopsy. I will not get the results of it for a week or so. It is agony waiting for the results, knowing that it is going to tell so much. I cannot even believe how many things they can tell from those biopsies. So I wait with anticipation with hopefully good news. But the actual biopsy went fairly well. It wasn't the best one I have ever had because her first attempt she wasn't hitting the right spot. I could feel her hitting a nerve and a sensation going down my leg. Not the greatest feeling in the world. But after the second attempt of numbing with lidocaine she was able to get it. Once you get past the lidocaine the rest of it isn't too painful. So I have just been laying low the rest of the day as I usually do after one. You have to lay down and put pressure on it for a while and then it doesn't feel too good to walk a lot for about 24 hours.

But I also had some company today. My aunt and Laura a family friend came over to visit with me today. I always enjoy having visitors come because I am at the house so much I don't have contact with many people right now. It was a really good day to counteract my biopsy because Laura makes the most amazing Chili Rellanos. So when they said they were coming over I requested that she make them for me. So I had an amazing Mexican dinner of homemade chili rellanos, beans, rice, tortillas and salsa. The salsa was great because I had not had homemade salsa since April because it contains fresh ingredients. But she made the salsa and then cooked it for me so I could eat it. So I am overly stuffed and very satisfied! I had not had really good Mexican food in a while. I am just glad that my stomach can handle spicy food again because that is pretty much what I lived on before. I could eat Mexican food breakfast, lunch and dinner (Micah don't you agree). So all in all it was a pretty good day. Pain medication takes care of my pain from the biopsy and a good meal makes me feel happy and satisfied inside.

Saturday, October 18, 2008

One Month Ago (Day +30)

I can't believe it but it has now been one month since my transplant. I am one third of the way to Day 100 now. Exciting I know!!! I am still very happy with how well I am handling all of this. My blood counts are continuing to look good and steady. I saw my nurse practitioner yesterday and she said so far everything looks really good in my blood. All of my kidney and liver functions are looking great and I was even able to get off of one of my medications because of that. Yeah, two less pills to take a day. I am feeling pretty good, still far from my normal self but gaining day by day. Today my grandparents came by and they bought me an exercise bike. I am super excited because I think it is really going to help regain strength in my legs. So hopefully little by little my strength will come back and I will have muscle in my legs again. Now I can feel like I am being productive while watching my Netfilx movies rather than just sitting there. Not much else to report, life is pretty simple right now. Lot's of rest!!!!

Wednesday, October 15, 2008

Day +27

I am sitting here in the infusion center watching the Price is Right. I think I have turned into one of those older people that sit home every morning and are addicted to the Price is Right. I know that because all of the commercials in between the show are for medicare, diabetes and motorized wheelchairs. Actually I have been watching the Price is Right since I was like 8 years old. I used to love when I would be home sick from school because that was the only time I would be able to watch it. I was going to go on the show on my 18th Birthday, but I ended up being in Montana on my 18th Birthday so was not able to. So maybe someday I will make my way to the show. As for now it is my entertainment from 10:00 to 11:00 every morning.
So hopefully today I will not be in here long. They actually got an order to start my Magnesium replacements right away, even before my labs actually get back. This is because for the past several times I have needed the replacements so most likely I am going to need them again. It is good because it is saving me a lot of time just sitting here waiting and doing nothing. But I have still been feeling pretty good. I think I am gaining my strength back little by little and am able to eat a lot more "normal" meals now. I am so pleased and happy with how I am doing, I honestly couldn't have asked to be better. I have seen so many people that are really struggling at this stage in the game, I feel extremely blessed to be doing as well as I am right now. Thanks be to God and everyone for their continued prayers. But as I am celebrating my success so far I am thinking of another girl who is really struggling right now. Her name is Erica Murray and she received a bone marrow transplant on April 29 of this year. I found her blog on the Internet when I first got diagnosed. She is a 29 year old girl who is living in San Francisco for her treatment but was living in Boston when she got diagnosed. She has been a huge encouragement to me during my time receiving treatment by reading experience. She is almost 6 months post transplant now and I just found out that she relapsed with Leukemia a few days ago. It just broke my heart, I could not even believe it when I read it. I know how much she has gone through only too well. I can not even imagine what she is feeling and the thoughts going through her head right now. I just ask that if you think of it pray for her. She seems like a very strong independent girl, but I know she must be hurting right now.

I know I have said this before but I have learned so much through this whole process that I am going through. Not only in life but a lot about cancer and the human body and how we function. Before I actually got diagnosed with Leukemia I am almost embarrassed to say that I didn't even know what it was. I had no idea it was a cancer and knew nothing about it. Now that it has affected me in such a personal way I feel it is my job to make others aware of it. I know there are a lot of people who are just like I was, and I guess if it has never effected you in some way there is no reason for you to know details about it. Now I am so happy to share my experience with anyone who wants to listen and offer all the knowledge I have about it. To make people aware of how greatly this cancer affects people and not just small children but people of all ages. This is why I feel so blessed to have Mike and Dawn running for the Leukemia and Lymphoma Society to raise money for research and to hopefully one day find a cure. But my mom has also taken on a little thing of her own. In a week and a half my mom and brother are going to walk for the Leukemia and Lymphoma society in my name. My mom is hoping to raise $500 and is a little over half way there. If you would like to donate towards her walk the website is www.lightthenight.org. Then in the participant's name type Lisa Nishioka. It excites me when people I know say they are going to do these walks or marathons for cancer. I am hoping that one day I am going to be able to join them in participating in a walk or even a marathon somewhere.

Saturday, October 11, 2008

Mail Time........ Bitter Sweet











Mail time.... it is one of those things that you love and hate at the same time. Since getting diagnosed with Leukemia I have received more mail than I probably ever have before. One of the reasons why is all the wonderful insurance and medical bills that I receive daily. I have to say it is a bit overwhelming if I actually sit down and think about it. I have not done that very much because I know that my number one priority is to worry about getting better right now, but I am still trying to remain responsible as well. I handle as much as I can and know that the rest will have to wait until I am more able to grasp a hold of it. I have to admit though it all confuses me greatly. But for now I just have my little file box that I am going to try to keep organized.

As for the brighter side of mail time I have received so much love and encouragement through that mailbox. Numerous cards, letters and packages from family, friends and people all over the World that I have never even met. It has brought so much joy and comfort to me as I am going through this time in my life. I have been so blessed by the generosity and kindness of everyone. Today when I got the mail I had two large envelopes which both blessed me greatly. One was from a lady named Jessica who is from the HGTV message board. Her and her family have sent me so many things over the course of my treatments. Her daughter has send me music Cd's and she has sent me numerous letters and sewn projects. In this package she sent me Fall leaves pressed and made into sun catchers. They are amazing!!!! She knew how much I love fall and sent me a piece of it to enjoy here in California. My other package was from a friend of mine. Her name is Steph and she was a cook up at MWSB when I was a student. She is now a 3rd grade teacher overseas. She had told her class that I was sick with Leukemia and they made a book for me. When I started reading it brought me to tears. It was one of the most special things I have ever received in my life. These kids writing to me and saying they hope I get well and want me to come visit them. A couple of them also wrote me a story which was so sweet. It touched my heart so much! I am going to treasure that book forever.


Stuffed Red and White Blood Cells (:

UPDATE: Yesterday was another long day at the infusion center. I only needed half the magnesium I needed last time, so it was only a two hour infusion. But I also met with my Doctor and Bone Marrow coordinator for the first time since my discharge. They said that I am doing really well and things are looking good so far. Since my Magnesium has been so low lately they are going to up my mag. pills at home to 9 a day. That sounds like a lot but I guess compared to a lot of other people post transplant that is nothing. The reason post transplant patients have such low magnesium is due to the imunosuppresents that we take. The more imunosuppresents you are on the lower your mag. is. I am not on a huge dose right now so that is why I don't have to take as many mag. pills as others. Hopefully I can keep it that way because I take enough medications as it is. But my CBC is continuing to look good. My white count is up to 4.3 and my red blood cells are staying at a good level. I am scheduled for my first bone marrow biopsy a week from Monday, so that should tell a lot more of what is going on inside my body. As for at home things are getting better and I am having to learn my body all over again. I am learning how to strengthen my muscles again and how my stomach can handle food. It is a process and I am taking it day by day.

Wednesday, October 8, 2008

Back Home (Day +20)

I am pleased to report that I am back at home and not at the "resort" anymore. I got discharged on Monday due to me convincing the doctors that I was well enough to go home. They agreed and here I am back in the real world again. It was so nice to get out of bed and walk again. I have to say the first time I stepped out of my room to walk to the nursing station I thought my legs were going to collapse. I can best describe them as wet noodles. I guess you lose muscle pretty quick when you are unable to leave your room for 3 weeks straight. I know that day by day my muscles will get stronger, but it is definitely weird for me to have a hard time just walking around or going up stairs. The simple things that came so effortlesly before. But so far things at home have been pretty good. I am eating better than I was in the hospital with some nausea. I just think that my love for spicy food might have take a backseat for a little while. I need to realize that my stomach can't handle everything it used to right now. The only thing that I have really been struggling with since I have been home is sleeping. In the past 2 nights I think I have gotten a total of 5 hours sleep combined. I have just been laying there so restless with my mind going a million miles an hour. I have no idea why this is happening, I have never been one that has struggled with sleep. I am just hoping that it resolves it self fast because frankly I am exhausted.

As for today, it was my first appointment at the infusion center since my discharge. I arrived there at 11:30 am and didn't leave until about 5:30 pm. So needless to say it was quite the long day. All of my blood counts looked good but I had low potassium and magnesium. So that meant a 4 hour infusion. This was my first real experience of having to spend an entire day there. I now know I am going to try to bring more things to entertain myself, because that was the longest 4 hours ever. If you are looking at my times thinking 11:30 to 5:30 is 6 hours and not 4 you are correct. Not only do you have to stay to get replacements, but when you go in it takes usually 1-2 hours for your lab results to come back after they draw your blood. So hopefully this will not be an occurrence every time I go to get labs drawn since I go three times a week. But I am starting to take magnesium supplements at home now so hopefully that will help out a little. Tomorrow I have nothing to do so hopefully I can get some good rest at home because Friday I have three appointments to go to. Busy times!!! I have a feeling my Day 100 is going to be here before I know it!

Sunday, October 5, 2008

Day +17

Sorry for the lack in writing lately, but for some reason I have just not been in the writing mood. I still am not feeling like writing too much so this might not be too long. I am still in the hospital and doing pretty well. There has been no more real big problems or complications, which is really good. My doctors are saying that I am doing very well and almost as well as I can be doing for having the kind of transplant I have had. So that is always good to hear. The days are going by slowly but surely and I am trying to find ways to entertain myself. There is talk of me going home in the next couple days, which I am sooooo excited about. They said probably either tomorrow, Tuesday, or Wednesday. This is because I have developed a small rash which is a sign of the GVHD. It isn't that bad so they are trying to figure out what medications to put me on before they let me go. They want to catch it before it gets bad and uncontrollable, which I totally understand. But I am still really hoping that I can go home tomorrow. I am ready for my bed and some good food!! So that is just a small update on what is going on right now. I am going to go back to watching the Angels/Boston game and hope the Angels can win this game to stay in the series. Go Angels!!!