Long overdue update

I decided to change the name of this blog because I feel since I have been in remission for 10 months I no longer have leukemia. I am now living my life after having leukemia and dealing with the changes in my body since the transplant. I still go to Dallas once a month for check-ups. I don't see that changing for a while since I am dealing with some issues in my mouth that make eating difficult. We are trying to figure out what is going on and what medications will help fix the problem. I can no longer eat spicy or salty foods because they tear up the insides of my mouth. I am sad that eating french fries is no longer a joy. I can deal with not having hot sauce because I usually over do it before my food comes anyways, but I miss my french fries. Other than my mouth issues I still have problems with chronic dry eye and my skin texture is just not the same. I also now have allergies that I can thank my donor for. Unfortunately those are common side effects that I'm not sure will ever go away. I am having to get use to a new "normal." I did finally write my donor a thank you letter and sent her a small gift to thank her for her selfless act of donating bone marrow to a complete stranger. Hopefully in January I can sign a release of information to hopefully get the chance to know her name and meet her in person. It is funny that I like things that I didn't necessarily like before. I now eat yogurt. That is something I wouldn't touch unless it was mixed with granola because I hated the texture. I also like to eat tomatoes. I eat more eggs and drink more milk that ever before. My hair has also grown in curly. I would just really love to meet her and thank her in person for what she did for me. I can't believe that this time last year I was bald and sitting at home waiting to hear if a donor had been found. I look back at pictures for then and I am amazed at how much has changed in less than a year. When I feel down all I have to do is look at where I was last year and realize how lucky I am to be where I am right now.

My mission moment

This morning I delivered the mission moment for the Leukemia and Lymphoma Society's Team in Training's (TNT) Saturday morning team run. My friend Carlo is a trainer and introduced me to the team last Saturday. I have wanted to get involved with TNT for a while, but I just never did. There are 25-30 people that get together to train for various races and raise money for the society. Each week they have an honored hero come and share their story with the team as inspiration. I was honored to be asked to do this. I am not much of a public speaker, but I felt it was important for me to share my story with people that are dedicated to raising money for the Leukemia Society since I have benefited so much from their financial assistance. I practiced what I wanted to say because I know when I get nervous I draw a blank and forget everything. As soon as I started talking I started to tear up. I get emotional when I talk about what I have been thru, but it is important for me to share my experience with others. I am very fortunate that I am doing as well as I am only 5 months after my transplant. Since I started working at the YMCA I have been working out and I feel that my strength and energy level is back to where it was before the transplant. Things are finally starting to look up for me.

I can't believe how bad I am at keeping this blog updated. I would be surprised if anyone still reads this. Well I am doing really good 4 months after the transplant. I still go to Dallas every other Monday for check-ups. About a week ago I started to get a GVHD rash and my doctor put me back on my steroids. I am not having the problems that I was having since I was taken off them. About a week after I stopped taking the steroids my joints started to feel stiff. I really thought I was starting to develop arthritis. As soon as I went back on the steroids I felt so much better. I guess I will have to be on a low dose for a while until my body can adjust itself.

About a month ago I started working part-time at the YMCA near my house. Since I am feeling so much better and have more energy, I decided it was time for me to get out of the house and get back to work. I plan on going back to teaching in August, so I thought this was a good way for me to ease back into working. So far I really like working at the Y (day camp hasn't started yet!). I have met lots of great people and I have been able to catch up with friends that I haven't seen in years. I have decided that this is the time that I need to make a change and start working out regularly. I have read a lot about how diet and exercise can help reduce your cancer risk. Since I am already at risk for developing other cancers I figured this is a good time for me to start an exercise routine. I feel so much better about myself after I work out. Since the transplant I have lost about 20 pounds. My appetite is back now that I am back on the steroids so I have to start working at keeping the weight off that I have already lost.

I am still amazed that I had a stem cell transplant 4 months ago. I never thought I would be feeling this well so soon after. Every time I go to Dallas and see people that have just had their transplant I realize how far I have come in such a short amount of time.

One Word Answers (only)

I got this from my friend Camille. It's hard to think of only one word answers. Have fun and play along.

1. Where is your cell phone? purse
2. Your significant other? somewhere
3. Your hair? growing
4. Your mother? loving
5. Your father? handy
6. Your favorite thing? i-pod
7. Your dream last night? strange
8. Your favorite drink? tea
9. Your goal or dream? travel
10. The room you're in? bedroom
11. Your kids? none
12. Your fear? relapse
13. Where do you want to be in 6 years? settled
14. Where were you last night? Walmart
15. What you're not? competitive
16. Muffins? banana nut
17. One of your wish list items? furniture
18. Where you grew up? Benbrook
19. The last thing you did? drink (water)
20. What are you wearing? clothes
21. Your TV? on
22. Your pets? Marley
23. Your computer? HP
24. Your life? blessed
25. Your mood? happy
26. Missing someone? yes
27. Your car? Element
28. Something you're not wearing? shoes
29. Favorite Store? Target
30. Your summer? hot
31. Like someone? yes
32. Your favorite color? pink
33. When is the last time you laughed? today
34. Last time you cried? yesterday
35. The person who sent this to you? Camille
36. Who will/would resend this? unknown
37. A good book? Notebook
38. A good movie? Enchanted
39. A good song? Rockstar
40. One word to share? Love

Update

I have been really bad about letting everyone know what is going on with me. I don't know how many times I have sat at my computer and stared at the screen not knowing what to write. My head was in such a fog for a while, it was hard to put my thoughts together and then try to make them make sense.

Now I am feeling great. It has been 3 months since my transplant and I never expected that I would be doing as well as I am. After the GVHD rash I have not had any more serious problems. I am now seeing my doctor every other Monday and he has started to take me off some of my immunosuppressents. I am completely off steroids which has made a big difference. So far I have not had any complications from reducing my medications. If everything goes well I should be off them before I go back to school in August.

About school I found out that I still have my job for next year. My district has extended my disability leave until August 18th. That is the day the teachers go back to school. I have to be ready to go back and be released by my doctor by July 18th. I don't think there should be any reason that I can not go back to work. I have been in physical therapy for 2 months and I am feeling like I am getting stronger and able to do more things without getting tired. I know the kids will wear me out, but I am fortunate that I will have an assistant with me and that will be a tremendous help.

Last night in Benbrook was the American Cancer Society's Relay for Life. This relay celebrates cancer survivors and their families. I participated last year when I was living in Taylor. It is so nice to see everyone that comes out to support the Cancer Society. I decided to go without my hat since I wasn't worried about people staring at me because they have been thru it. Well I was the only one there that had no hair. I was proud to show my bald head and several people came up to me and told me about their experience when their hair grew back. Some had curly hair or it grew in a different color. I'm not sure what to expect. Since I have new DNA I'm not sure if my hair will grow in like my donor's. Right now I have some fuzz growing, but it's still to early to tell what color it will be. I am excited it's growing back, but I'm not looking forward to having to wash and dry my hair everyday.

Here are some pictures from the Relay

7 random things about me... tagged by Camille

1. I never spent a night in a hospital until October 19, 2005. That's the day my life changed.

2. I was born with a lazy ear. Kids use to tease me about it and one boy told me I should sleep with silly putty in my ear and that would fix it.

3. On the first day of kindergarten I walked into the room and said "What the hell are you doing in here." That was my first and last time in the principals office.

4. I still hate needles.

5. I love to hear the jets fly over my house.

6. I do the People crossword puzzles every week. It's the only crossword puzzle that make me feel smart.

7. I read the large print edition of Readers Digest. I hate looking at magazines that you have to use a magnifying glass just to read the words on the page.

Getting better everyday

Everything is looking good according to my doctor. My GVHD rash is almost completely gone so that means we can start lowering my steroid dose. Once I am off the steroids I will be able to get back to my "normal" self. I never realized how much steroids affects your mental state. That has been the hardest adjustment. Once I am off the steroids things will get a lot better. I am still weak, but I am getting out of the house and walking more. I am going to start physical therapy so that should help me a lot to regain my strength. I have been keeping myself busy by knitting hats. I am getting pretty good at it. Now I need to learn how to make scarfs. I am 40 days post transplant and I can't believe it's been over a month since I got my new stem cells. I will say it has been a hard 40 days, but I think things are finally settling down and I am starting to recover from the transplant. Thanks for checking in on me and keeping me in your prayers. I know that is what is helping me get thru this.

Love,
Sam

Doing much better now

Sorry it's been so long since I have updated. For a few days last week things were a little difficult. Last Monday my doctor started to decrease my steroid and I think that really affected me. At night after I took my meds I started to get really confused. This went on for another day and finally by Wednesday night I told mom we needed to go to the hospital. They ran a bunch of tests and keep me overnight for observation and I got to come home on Friday. While in the hospital they adjusted my medication and that seems to be helping. My GVHD is so much better. I think we are finally over that hurdle. Other than that I am doing more. I am getting out of the house and going out to eat with my family. It feels great to get out of the house. I feel like I am getting better everyday.

Day +25

Today has been the first time that my mind hasn't been in a fog. I am still fighting the GVHD on my body. My rash is still on my stomach and chest. After going to the clinic everyday for treatment, my doctor decided to try a new drug and give it a few days to work. I am lucky to have today off and I will see my regular doctor on Thursday to re-evaluate my treatment. My doctor is not overly concerned about my GVHD. He says some is good because it shows that my body is engrafting the new stem cells. I have never done anything slow and my body is trying to take over too quickly. With all this medication they are trying to slow down my body to give me some extra time to engraft. All my blood counts are coming back like they should and I haven't needed a blood or platlet transfusion for quite a while. As soon as we get this GVHD under control life will start to get a little easier. I apologise if I don't call or respond to e-mails as quickly as I should. I still have my good and bad days. I do read them all and appreciate every one I get. Thanks for continuing to keep me in your prayers. I can honestly say that this is the hardest part of the entire process and I can't wait to get to the other side.

Home Sweet Home

I can't believe I'm at home! It was 2 weeks ago today that I was recieving my donors cells and look at me now. I am sleeping in my own bed, able to make my own food and sit comfortably in my recliner. By looking at me a week ago you wouldn't think this was possible. I was at my lowest and not sure when I would get to feeling better, but Neupogen is a miracle drug. Since I have been home I feel so much better. I get to see the sun shining in the windows and I know I am more active because I have to move around to get what I need. Being home is the best thing for me. I go back tomorrow for a clinic visit to check my blood counts and make sure everything looks fine. Then I will probably be back in Dallas at least 3 times a week for check-ups. They want to keep a close eye on me so if I develop more GVHD they can treat it quickly. Just wanted to let everyone know that I'm doing great!

This bird is leaving the nest

I have been holding on to this information for a few days, because I wasn't even sure if it was true. Looks like today is the day I get to come home. Yesterday they switched my to all oral pills and I have not run a fever for the past 24 hours. My counts have skyrocked since the Neuopegen. Everyone feels confident and comfortable that I can do this at home. I have been wanting to get out of here, but this is my safety bubble that nothing can go worng. If I need something I have someone willing to give it to be quickly so I can feel better. I know eventually I will have to leave the bubble, but I am leaving 6 days earlier than I thought I would be. So if you want to get a hold of me or come and see me here is my information. I continue to need your prayers because recovering at home is going to be just as hard as being in the hospital.

512-748-5729 cell
817-249-1770 home
1009 Mistletoe Road, Benbrook 76126

I felt your prayers

Thank you for all your e-mails and blog posts. I read every single one of them, but I didn't have the strength to respond. For about 3 days I was feeling at my lowest. The only thing I could do was to get up and go to the bathroom and sit up to take a sip of water. My body was exhausted. I try to keep a positive attitude, but I was fighting to see the light at the end of the tunel. I officially have GVHD (Graft vs Host Disease). It happens when my body sees the donors cells as foreign and attacks them. I started getting a rash and it spread over my face, chest, stomach and back. On top of all this I have not bee able to eat for the past 2 days. All I am able to keep down is water. For the first time today I was able to eat some peanut butter crackers. You would think with as little as I am eating I would be losing weight, but they are pushing so many fluids thru me that it is having the opposite effect. I started Neupogen (white cell booster) 3 days ago and it is working miracles. My white count is 0.6 and I have 174 ANC (fighter cells). I believe because my counts are coming back that is related to me feeling better. I feel like I have taken a turn for the better finally. Thank you for continuing to support me and lift me up with your prayers. I truly do appreciate all that you do.

Love,
Samantha

Finally starting to feel better

Sorry it has taken me so long to update the blog. I was doing well up until Day +4 and then I went downhill fast. The doctors told me that days 3-10 would be the worse and I was hoping that I would feel better for a few more days, but I was wrong. On Day +4 I woke up feeling ok, but as the day progressed I started feeling terrible. By that evening I was runing a fever and they were starting me on heavy antibiotics. I was tired, running a fever that would not go away and my heart was racing everytime time I got up to move. Day +5 wasn't any better. I have to make myself get up and walk so I can be active and hopefully heal faster. It wasn't until today (Day +6) that I needed a blood and platelet transfusion. Since I got that I feel much better. I have more energy and am not dizzy when I take a walk. In 2 more days I will be getting a white cell booster so my white cells can start producing faster. The less days my white count is at zero the less chance I have of getting another infection. By Day 10-14 my white count will start to reproduce and we will be able to see how my donors cells are working in my body. So far I have tolerated this regimine very well. If I can get away with feeling bad for only a few days then I am very lucky. I hope to only have to be here for another 2 weeks. If I do get out of here then I will be going home on Valentine's Day. After I leave the hospital I will be coming back and forth to Dallas at least twice a week to monitor my labs and all my my medications. I will have to be very careful being around people for a while because it is going to take my immune sysyem a while to rebuild.

Amazing

On January 26th, 2008 I received my new cells from my donor. She was very generous and gave me 4.9 million of her stem cells. The nurse came in with the bag and I got to hold it. We took lots of pictures before it was time to hang it. When the Chaplin blessed the cells that's when it hit me. I was getting this transplant and it is going to cure me. So far this transplant has been nothing like I expected. I thought I would be weak and sick from the chemotherapy. Other than a few days of nausea I feel great. This is the best I have felt in a long time. I pray that I will tolerate this well and be able to recover quickly. Now I have to wait to see if my donor cells engraft. That should take 10-14 days. Right now the cells are making their way thru my body to my marrow and getting ready to get to work. Once my white count starts to recover I will be able to go home. I will be followed closely for a few weeks to make sure I don't get graft vs. host disease. If I do then I will be on medication to control it. The doctors say that a little graft vs. host is good because it means the cells are doing their job, but it can get out of control if you don't watch it. It will take a year for my immune system to be back to normal. So for the next year I will have to be careful that I don't catch anything. I hope to be back working with my kids in August. I really need to get back to my normal life.

Thanks so much

I wanted to thank everyone who has called to wish me luck today. My stem cells are on their way to Dallas as I type this and I will for sure get the transplant sometime tomorrow. It means so much to me that everyone is thinking and praying for me. I will update tomorrow and let everyone know how it goes.

Day-1

Today is the day that my donor will donate her cells. From what I was told they were able to get all the stem cells I need at one time. I am so thankful that there are people willing to sacrifice so much for someone they have never met. I am suppose to get the transplant tomorrow, but it is now looking like Saturday morning. I guess the stem cells are coming from far away because they are flying into DFW and are not suppose to be here until late tomorrow night. Once they get here there is another process they have to go thru before they are given to me. My white cells are not at zero, but that won't stop anything. It is a blessing that it is taking longer because that means the shorter time that my white cells are at zero the better chance I have of not getting an infection. I guess all that chemo I have had has made my white cells very hard to kill.

Chemo is done forever!! Day -2

Today was the last chemo treatment that I will ever have to have. I am so happy that once my hair grows back chemo will not be able to take it away from me again. I tolerated the pre-transplant regimen better than I expected to. When you hear you are getting high dose chemotherapy you get the idea that you will be in lots of discomfort. I only had a few days of nausea and my appetite is not what it once was, but that's the worse of it. Tomorrow will be easy day since all I get is fluids.

My white cells are on their way to zero. This chemo regimen will destroy my white cells and they will never recover without the transplant. My donor should be ready for her part tomorrow. She has received 5 days of a white cell booster so her body can overproduce stem cells so there are enough to collect. She will be hooked up to a machine that will take her blood and put it thru a machine that will separate the blood into layers. They will collect the stem cells in a bag and give the rest of her blood back. Once they collect enough stem cells a courier will bring them to Dallas to be given to me. We hope that there will be enough cells on the first day so that she will not have to donate twice. I will for sure get my transplant on Friday because once I start my chemo we are on a schedule that can't be changed.

My part of the transplant is painless. When you hear the word transplant you think they are going to have to cut me open. Stem cells are smart and they know where to go in the body. They are dripped thru my I.V. like a blood transfusion. Once in my body they will make red blood, white blood cells and platelets. In 10-14 days my donors cells will engraft and start to produce white cells. It will be a year or more before I have a normal immune system again. A year after the transplant I have to get all my immunizations again. This process is like being reborn. On Friday I will have a new birthday. My life will be forever changed because of the stem cells of a complete stranger. I am truly blessed.

Day -5

Another uneventful day. I spent most of the day finishing my book that I started yesterday and walking around the halls to pass the time. My counts have spiked like the doctor said they would and they should start coming down very soon. I am surprised that I have felt this good after 3 rounds of chemo. I know there are going to be some bad days, but so far this has been a positive experience.

Day -6

I am surprised that I still feel as good as I do after 2 treatments of chemo. I have 2 more days of this drug and then I get another new chemo called Cytoxin for 2 days. The Cytoxin is suppose to be a harder drug and might cause some nausea. Luckily I only get that for 2 days. I will have a day off before I have my transplant. There are several volunteers that I have met that have had transplants of this floor. Most are 3-5 years post transplant. It is nice to speak to others that have been thru what I am going thru and they all look so good. That has definitely make me feel better about the transplant and that I can go back to my normal life one day and no one would be able to tell that I was ever sick with leukemia.

Day -7 It all begins today

Well I am all checked in to my room in Dallas. It's no 5 star hotel, but the room is larger than the room I had at Harris. Last night they placed the central line so they have access to a vein to give me all my medications. As you can see it's in my neck. That has taken me some time to get use to. Chemo started this morning at 9am. Today is day -7. I am receiving 7 days of high dose chemotherapy and then on day zero after the chemo is finished I will receive my donors cells. The days after the transplant are positive days (+1, +2). So far I have felt great and I do not have the anxiety that I thought I would. It will take about a week for my counts to go to zero and that's when I will be feeling at my worst. I would love visitors, but just make sure you are not sick. If you have a cough, runny nose or allergies it is best to stay away. I will have no immune system and nothing to fight off an infection if I catch one. My cell phone works in my room if you want to call and chat.

My Address:

Samantha Galpin

Baylor University Medical Center

4 Collins, Room 435

3500 Gaston Avenue

Dallas, TX 75247

The end is near

I wanted to let everyone know that my transplant will be happening very soon. I received the phone call yesterday that my donor is available to donate on the 25th of January. That means I have to be in the hospital a week before so I can be ready to receive my donors stem cells. I will be admitted to the hospital on Thursday. Starting on Friday I will receive 7 days of high dose chemotherapy that will kill off all my healthy cells and leukemia cells. Once all my cells are gone then I will receive my donors stem cells thru a blood transfusion. It's a painless process for me. After I receive my donors stem cells I will be monitored to make sure my body does not try to fight the foreign cells. I hope to only have to be in the hospital for a month. Once I am in the hospital I will be updating the blog more often since I will have a lot more going on to talk about. Thanks for continuing to keep me in your prayers.