TGIF

Well I wanted to update everyone on the donor search. I spoke with my donor coordinator yesterday and she said after they received all my blood typing they put all my information into the donor database and I have 315 potential matches! I can't believe the number. Granted not all are perfect matches, but the fact that I have so many is encouraging. I received funding from the National Marrow Donor Program to test 4 potential donors. They were starting to contact them yesterday. It should be a couple of weeks before we know if any of them are going to be my donor. I am happy that they have started the search. I have a feeling that it will take a month or more to find my donor and get started with the transplant.

Injections are going well. We started them last night at 10pm. I am very proud that my mom was able to give me a shot. It is really not that bad.

Exciting day

I had some excitement today. The nurse told me when I left the hospital that if I had pain or swelling in my right arm to go see the doctor. Well on Tuesday I started having some pain under my right arm. I called the nurse this morning and she said I should go for a Doppler study to check to see if I had a blood clot. Well they found that I had two clots in two different veins. So at my doctors office they did blood work to check to see if my platelets were high enough and they wanted to take out my picc line. The picc line is great for a short amount of time, but a side effect is blood clots. Taking it out was easy. Taking the bandage off was more painful than actually taking it out. So to get rid of the blood clot I have to be on blood thinners. I don't mind taking the medication, but it also involves giving myself injections. I am not a needle person and I really don't think I could give myself injections. I had my dad learn so he could be the one to give them to me. The needle is so small that it doesn't hurt, but I get so much anxiety that I work myself up about it. I am getting better around needles, but that fear is still there. Hopefully after getting injections every 12 hours for the next week will cure me of my fear.

Writing this from home!

I was finally able to leave the hospital today. My doctor wanted to do my last bone marrow biopsy this morning and then afterwards I was free to leave. Talk about happy. I was so ready to leave. As soon as I knew I was going home I was taking everything off the walls and packing my suitcase. I was out of the hospital by noon. It is so nice to be home. I laid in my bed and took a 2 hour nap uninterrupted. I go for lab work on Thursday and have a follow-up appointment with my doctor on Monday. Other than that I have nothing going on. Feel free to call me at home 817-249-1770.

How could I forget

I forgot what yesterday was until late in the afternoon. I had my sister look at the calendar to confirm what I thought. Yesterday was the 2 year anniversary of the first time I was diagnosed with Leukemia. It was the day my life changed. I believe for the better, even though at the time I was scared. At the time things happened so fast. I got the call at school from my doctor. He had tracked me down at school, never a good thing. I was not expecting what he told me over the phone. He said that there was something wrong with my blood and he thought I had Leukemia. Hearing those words made my knees weak. Then he said he had spoken with an oncologist in Temple and they are waiting for me. I was to leave right away and get myself to Temple. I had no time to process all that was going on until later. Everything after that was a blur. I was admitted to a room, bone marrow biopsied, port placed, heart scanned, and chemo started all within 24 hours.

Going thru all that then and now I know I am a stronger person. I don't take things for granted like I use to. I stand up for myself more and fight for what I need. Life has more meaning and I want to live to be a very old woman. God has a plan for me and I know he wants me to be around a very long time.

I am still fever free. I will be getting what I hope to be my last blood transfusion today. All my other counts are still on the rise. I am keeping my fingers crossed that I will be going home very soon.

I see the light

I was sure that the fever that I had yesterday was the result of my counts coming back and not the strep infection that I have. My prayers were answered. My nurses this morning told me my counts looked good today. I couldn't wait to hear them. Well they were good.

HGB (red blood cells) 8.1- down from yesterday. I may need a transfusion tomorrow
Platelets- 55,000!!- They were 25,000 yesterday
White Count-1.6- It was 0.7 yesterday. The highest it's ever been.
ANC (fighter cells)- 0.2- This is the first time I have produced these. This is the number that needs to go up so I can get out of here.

I finally see the light. Who knows how much longer I will be here, but I finally see the end of this hospital stay. As long as I am feeling good I don't mind being here until it is safe for me to go home. The last thing I want to do is go home and catch something and come right back. It has been a rough 3 days, but it is part of the healing process. I tried to be strong and I think I was. I made it thru the roughest part and now I am happy that I have made it thru this first round of chemo. Just one more to go. I know if I can do this, then I can go to Dallas and kick butt.

My dad wanted me to add a picture of my sister. So here is a picture of her and I.

I made platelets!!

After 3 weeks I finally made some platelets. They were 16,000 yesterday and today they were 25,000. I am so happy my body finally produced something. My doctor said that I am showing signs of count recovery. That is what I want to hear. I have been in the hospital for 3 weeks as of today. I am still running a fever. Not 102, but it is still 100-101. From my blood cultures it showed I have a bacteria infection that is a strain of strep. I have been watching the news and all that seems to be on is about the drug resistant staph infection. I was freaked out that was what I had, but thankfully I don't. And also it is not uncommon to run a fever when your counts start to recover. Maybe things are starting to look up. Now if I can only get over this fever then all will be well.


Christy- Thanks for the messages. Right now I just need prayers.
Alicia- Thanks for reading the blog. Tell Eddie hi. Still having fun packing?
Mama Bailes- Thanks for the message. I have been reading some. Big hugs to you!
Cynthia- Thanks for sending me a picture from the pumpkin patch. You have a cute class.

Feeling much better today

Yesterday was a rough day. I was running a 102 temp most of the day and Tylenol wasn't helping. All day I had the chills, aches and shakes. I felt terrible. This was the worst I have felt ever. All I wanted was for my fever to break. They eventually had to give me ice packs to try to cool me down. I don't think that helped much, but finally last night the Tylenol worked and my temp was down to 98.7. I was so happy to see that number. That was the lowest it had been all day. I had more energy last night and I got out of bed and mom and I walked around the floor for a few minutes. I actually slept thru the night! I am still running a low grade fever, but the Tylenol is working. I am about to get a blood transfusion and I always get Tylenol and benadryl with that. I think after the transfusion I should feel much better and have more energy.

It worked!!

Dr. Crim just came in and told me that the pathologist saw no evidence of leukemia cells in my bone marrow! What that means is the chemo did it's job in killing off the leukemia cells. We made it past the first big hurtle. Now we have to wait for my counts and my bone marrow to recover, then we will do one more bone marrow biopsy to check to see if the new cells are free of leukemia. All the prayers worked!!! I was so happy to hear this news I started crying. I was trying very hard not to think about it becuase I would end up worrying myself sick over it. Now I can breathe easy for the rest of the time here and continue to pray that my next bone marrow biopsy continues to show no evidence of leukemia cells. I still need the prayers so please continue to pray for my complete recovery.

Sick and tired of being sick and tired

Sorry there was no blog yesterday. I had nothing going on and I didn't know what to write about. Well today I am running another fever. I spiked a temp late last night and after Tylenol I spiked a higher fever this morning. They started to run all the normal tests to make sure I don't have a bug. It is not uncommon to run a fever when your counts are as low as mine. Sometimes they can't find the source of the fever, but they still take all the precautions to get my fever down. My doctor will start me on another IV antibiotic today. I hope I don't have a reaction to the new medication. My rash is slowly going away. It's not nearly as red as it was a few days ago, but it's still there. I know I have been lucky to be here as long as I have and not run a fever, but I hate being sick. I just want to feel better so I can go home before I have to go back to the hospital in Dallas for the transplant.

Nothing new today

I still have the rash. It has finally spread down my arms and legs. The doctor thinks it's a drug rash so they have taken me off all my medications. Since I am no longer taking any antibiotics I have become a bit of a germ freak. I went downstairs to get an ice cream cone and I wore gloves. If I didn't look weird enough with the mask on now I am wearing gloves. I want to make sure I don't get any little germ so I don't get sick. If I get sick then that will prolong my time in the hospital and I am ready to get out of here. I still want visitors and I'm not worried about anyone that comes to see me. I just don't know what's out there and how well they clean things outside of my room. I can't believe I have been her for over 2 weeks already. It really has gone by faster than I thought it would. Now if my white count would start coming up then I will know more when I will be able to go home.

Hair today, gone tomorrow

Having no hair has it's advantages.

1. I only have to use one towel.

2. I save on shampoo.

3. I don't have to use my hair dryer or straightener.

4. I save myself 20 minutes in the morning.

5. I look better wearing a baseball cap

I really don't miss my hair. Actually I'm glad that it's gone. I was still in that awkward phase of the growing out process. I was really looking forward to putting my hair in a ponytail one day. If I could have done that, then I would have been sad to see it go. It took what feels like forever to get it to the length that it was. Next time I know what to expect. I have to be patient and just let it grow without cutting it no matter how crazy it makes me. I might buy myself a good wig so I can cover it while it grows out.

I am allergic to something. We think it's the IV antibiotics that I have been on for almost a week. It started yesterday with a light red rash on my stomach and chest. By last night it was brighter red and all over my stomach. When I woke up this morning it was all over my my face and the rest of my body. I'm glad that it doesn't itch. Hopefully it is the antibiotics causing this rash and that it will clear up soon.

Bald is the new black

My hairdresser Elizabeth has the honor of shaving my head today. She has worked with me to grow my hair out, but all that work will be falling to the floor. My mom can't make herself do it. She wants to take pictures, but it is too traumatic for her to shave her daughters head. I have been playing with my hair a lot more these last few days. I will miss running my fingers thru it, drying and straightening it everyday. I know I can't keep it. I am ready to take control of my hair, before I have no other option and it falls out all around me. Before my hair was a sandy blond color and when it grew back it was a dark brown. I have always been told that you hair changes texture when it grows back. I am looking forward to seeing what grows back. I could have red curly hair or black straight hair. It will be a surprise. I am not crazy about wearing wigs. They are hot and itchy and really not my style. I thought since it's Halloween I would get a few funky wigs just for fun. When I go out I will probably be wearing a baseball cap or just rocking the bald head. My mom says I have a nice head so I am not afraid to let others see me bald. I am proud of what I have gone thru so I have no reason to hide my accomplishments.





My bone marrow biopsy went well this morning. My doctor gave my IV morphine and ativan and that really cut the edge off the pain. I was much more relaxed during the procedure. I have good hard bones, so getting in is the worst part, but he got everything he needed and by Tuesday we should know something. As long as there are less than 5% blasts in my bone marrow I will be considered in remission. Keep me in your prayers that all will go well and we will get the news we want on Tuesday.

Fun day decorating

The other day I got the idea that I wanted to decorate my room. I have been her for 2 weeks and I am starting to get tired of looking at white walls. There are several patients that have decorated their rooms to look like home. Some friends have given me Halloween stuff and then I sent mom to Walmart for some window clings. Since I already had some decorations I thought why not go all out. I called a few people and in less than 24 hours I have a Halloween decorated room. My room makes me happy now. I even have bats hanging from my ceiling. I am glad that I felt up to decorating today. I received platelets this morning and will probably need a blood transfusion tomorrow. Other than that I feel pretty good.

My transplant coordinator called me today and my sister is not a match. My next option is to search the National Bone Marrow Registry. There was only a 25% chance that she would have been a match and I was really hoping she would be. I will be curious to see how many matches they will come up with from the registry. There are over 6 million registered donors so I am hoping to have a few good choices.

Thank you Juanita, Chrisi, Cody and Mom for decorating my room.

Not much longer now

I wish I was talking about how much longer I was going to be in the hospital, but I am here for another 2 weeks. What I am talking about is my hair. Slowly it is letting go. It started with only being able to pull one strand out at a time to now I can pull a few more strands out with little effort. It has been 13 days since chemo started so I am on borrowed time. I am not afraid to lose my hair. I have done this once before. I was at one time very vain about my hair. I was always afraid to cut it because of the way it might look. I realize hair is just hair and it will always grow back. That is one of the many life lessons cancer has taught me. Stay posted for the before and after pictures.

Freedom from Oscar

Today was the first day that I have not had to be hooked to an IV pole (Oscar) for 24 hours a day. It is so great. I finally feel like I have some of my freedom back. I am able to walk wherever I want. I took a nice long walk outside today. The weather is beautiful. A nice breeze and not too warm. It was nice to hear the cars pass by and the birds chirping. There are lots of people walking around the hospital. I felt weird since I had to wear a mask the whole time. Lots of stares, but I really don't care. I look hot in a mask. They are just jealous they don't look as good as me. LOL! Just wait until I walk around bald and wearing a mask. Can't wait to see all the stares I will be getting from that. I should make up a t-shirt that says "I have cancer, what's you excuse?"

A few weeks ago my Memaw found out she has Lymphoma. She went thru all the testing, even having a bone marrow biopsy the same day as me. Well yesterday she got the results and she still has stage 1 Lymphoma, but they can't find it. I was so happy to hear that. She will be followed every 3 months with more testing. When I talked with her last night she said something that made me cry (not very hard to do these days). She was not happy that she was fine and I was the one that was sick. It broke my heart when she said she wanted to be the one in the hospital because she is old. I wouldn't wish this on anyone, not even my worst enemy. I believe God only gives you what you can handle and He chose me to have cancer because I can handle this. God have been very good to me and I continue to believe He will heal me for good this time so I will never have to deal with this again.

Thanks to everyone that is leaving me comments about my blog. Since I can't respond to your e-mail I will start trying to remember to respond in the blog.

Doug and Dara- Come visit me anytime. I would love to see you.
Tia- Thanks for the e-mail. I'm glad David is doing so well.
Robbie- I am still here. Will be here for another 3 weeks.
Kara and Jeffers- Thanks for coming to see me. Kinley is so cute!

Day 10

Well day 10 was full of excitement. 10 days after chemo your counts are at their lowest, so risk of infection is at it's highest. I received a blood transfusion on Saturday and Sunday. It's not uncommon to have a reaction to blood like chills and fever. Well I ran a fever on Saturday and when I started running a fever on Sunday they wanted to run more tests to make sure I didn't have an infection. The gammet of test were run and I guess everything is ok, because I haven't heard anything but I will be on IV antibiotics for the next few days. Also when I woke up yesterday morning my mouth was hurting and slowly thru the day I realized that I am getting the mouth sores that commonly come along after chemo. Day 10 is usually the worst day, so hopefully from here things will start to get better.

On my daily walks around the 7th floor I get to see who is here and I realize that I am the youngest person on the floor. There are days when every bed is full. It's sad how busy the oncology unit is. Cancer is a terrible disease and I pray that in my lifetime we will see some advances in preventing cancer so people, especially children do not have to deal with this monster.

Last night I watched Extreme Home Makeover and of course I bawled my eyes out. The team was helping a family that had a child with cancer. She was only 8 years old. She beat cancer once, and after being in remission for a while she found out her cancer was back. I relate to this little girl, even though her treatment is way more aggressive and painful than what I am going thru. She is one tough little girl. While she is going thru her treatment she finds the strength to help others with cancer by using her own money to give teddy bears to other children that are fighting the same disease. I feel pretty selfish that I don't do the same to help others. I am pretty crafty, but I have a hard time coming up with the ideas. So if anyone can help me come up with an idea I would love to start making little things that I can sell to raise money for different cancer organizations. One thing it will make me feel like I am doing something to help and also it will keep me busy.

Thanks for your help!

I made it!

As of 11:22 last night I was finished with chemo. I was emotional as she took the bag off and threw it in the trash knowing that the bag was not going to be replaced by yet another one. Chemo is such an emotional roller coaster. You are on so many different drugs to combat nausea and all the other effects chemo causes that it starts to affect your mental state. Now that I am off, I feel much better mentally. It might be because the steroids have finally left my body! Today they started me on a white cell booster to get those to start producing again. So is it too early to be planning my escape? I was thinking since I am no longer on chemo and hopefully they will stop my fluids soon, maybe I can recover at home as long as I promise to be a good cancer patient and stay in the house and away from germs. I know I have to be here until Friday since that is the date for my next bone marrow biopsy. As long as there are less that 5% blasts in my marrow, the chemo did it's job. I'm glad that I will be in the hospital for the next biopsy so I can get all the good IV drugs that makes the procedure at least tolerable, since they won't put me to sleep.


Today I am getting my first of many blood transfusions. I can tell I need one because when I get up and walk around I get light headed. My heart rate has been high over the past few days. This morning my resting heart rate is 122. I guess we know that my heart is working just fine! Thanks to everyone who has gone to Carter to donate blood for me. I didn't realize that you had to give so much information just to donate. If they give you any trouble, just call me and I will give you all the information you need. Getting blood is an all day process. They have to drip it in slowly so 1 bag can take from 2-4 hours. I will be getting 2 bags today. Thank goodness for TV and Internet.

Chemo is finished (In a few hours)

The only exciting thing going on today is chemo is finished tonight!! YEAH. It has been a long week hooked up to continuous chemo, but I see the light. My counts are very low today. I had to get platelets this morning and I will need a blood transfusion tomorrow. Other than that noting exciting going on here. I am just hanging out watching TV and updating my I-pod. I love my new I-pod. Debbie surprised me with it the other day. It helps me go to sleep since I can listen to my relaxing music and ignore all the other hospital noise. Some of the guys that my dad works with gave me $125 worth of I-tunes gift cards so I have been buying lots of new music. I appreciate everyone wanting to help take care of me and give me something to look forward to. It is getting harder to keep myself occupied during the day. I love everyone and thanks for keeping me in your prayers.

Love,
Sam

1 week in, 3 more to go

Well I have been here for a week now. I can't believe it's been 7 days. I can't even remember what life was like on the outside. To go outside would be fantastic. When I leave my little room I have to put my mask on and put my IV pole. I take my walk down the hall, sit by the window to watch the cars drive into the parking garage and then walk back to my room. One my way back to my room I peek in the other rooms. I am by far the youngest in here and by the looks of it doing the best. I can't help but not feel for these other people that are here in worse shape than I am. It makes me feel so lucky and helps my spirits to know that I am going to be fine. Once the chemo is over, I fell that things will start looking up for me. I will be off a lot of the medicines and they will just be checking me to make sure I am not running a fever. So far I have been able to hold on to my white cells and platelets. Dr. Crim says on day 10 (Sunday) should be where I am at my lowest count wise.

Lindsay went to Dallas today to get her blood tested. I think she is worried because they took 5 vials from me. She doesn't want to be drained like I was. I am very proud of her to be doing this for me. I know she is my sister and I would do the same for her, but I appreciate her going along with this. I will owe her my like if she is able to give me this gift. Just pray that her time in the Peace Corp does nothing to harm her bone marrow in any way. I need it to be healthy. Love you sis! I hope you will be my life saver.

Day 6

So today is day 6 in the hospital. Tomorrow it will be a week. I am surprised it has been that long, but the days sure are going by slowly. My last chemo is hung Thursday night and then I can finally get off these damn steroids. This is my first experience with them and I really don't like what they do to me. I heard they can cause worse things like depression, and mood swings. I sure don't need to be depressed! I have the body movements. I can't sit still. I am constantly moving side to side when I am sitting in bed. If you get motion sick then don't look at me. One nurse told me that there was a preacher in here and while he was on the steroids he was cussing and mean. His wife was beside herself because that was not the man he was. Steroids can mess you up. I am just lucky it hasn't done that with me.

Today was the first day I actually got to take a nap. I feel so much better. I have to take Ativan to counteract the effects of the steroid. I guess I asked for it early enough that it finally kicked and I laid down. In between the tech coming to take my vitals and by IV pole beeping I got a 2 hour nap. Praise Jesus! I am so happy. Anything to make the day go by faster.

I am so glad to see Charles and his mama today at lunch time. It is hard when everyone else is working and I am here. I gets lonely! Juanita brought me some pound cake and some other dessert that is divine. I was so glad to see Charles before he takes his trip to Vegas for his birthday. He spent the last few free minutes with me before he had to go home and pack and leave for the airport. Have a great time honey and win lots of money for me! This hospital stay is going to be expensive. LOL!

Blood

Well my fedex package arrived today and my nurse drew 5 vials of blood for my HLA typing. I was a little light headed after filling so many vials. Dad is fedexing the package back to Dallas. I hope it arrives in time, because I don't want to do that again. So far my counts are still good. White cells are the same as yesterday (.6) and my platelets and hemoglobin are on their way down, but not low enough for a transfusion.

As far as blood donations. If you are in Ft. Worth you can donate at any Carter Blood Center. When you make an appointment you need to fill out a planned designation form so I can recieve the blood credit. All you should have to give them is my name (Samantha Galpin) and what hospital I am at (Harris Methodist Hospital, Ft. Worth). If they need any more information tell them that Beverly Johnson had all my information or you can call me and I can give it to you. My room number is 817-250-2738.

What I know so far about transplant

So on Friday I got 3 phone calls from the transplant team in Dallas. First they wanted to check my insurance to see what they will cover. Lucky for me I am covered, but I found out that the search for a donor and cost of having my sister typed is not. Because my sister is my best chance for a match and the fact that it cost $360 to have anyone typed for a match, I do not want to ask anyone to go thru that if the odds are not that great. So if my sister does not match, then off to the National Registry. I appreciate everyone wanting to be a possible donor. I just thought insurance would cover that expense, but I should know better. Health insurance pays the bare minimum they have to.

If you can't help me and you want to know what else you can do, think about being tested for the National Bone Marrow Registry. There are thousands of people waiting for a donor. You can call Cliff Ackerman at 214-820-1589 to get more information.

I finished my last round of Idarubicin (the orange stuff) last night. I only got that for 3 nights. I will finish my last round of Cytarabine (24 hour infusion) on Friday night. I thought this would be easier since I know what to expect, but it has been different. I have had more nausea this time. I have not had blood or platelet transfusions yet (but they are coming soon). Hair is still going to fall out. Doctor says that will happen between 10-14 days. I'm not worried about losing my hair, but once my hair falls out then I look the part of the cancer patient. You can no longer look at me and not know why I am here. I found a website that sells t-shirts that say Bald is the new black. I think I will buy one and wear it proudly.


For those who want to know more about my diagnosis go to the Leukemia and Lymphoma website http://www.lls.org/ and look up Acute Myelogenous Leukemia.