Saturday, December 27, 2008

Day 100

Today is day 100. I am excited to report that my bone marrow biopsy came back with zero percent blasts and no sign of cancerous or abnormal cells. This I think is cause to celebrate!! Thanks to everyone for their prayers yet again. I am so thankful for the wonderful support system that I have, I can't imagine going through this without it. Although I am at day 100 it isn't quite freedom time yet. I soon have learned that doctors don't tell you the entire truth about these "dates". Maybe for some day 100 is freedom if they didn't have ANY problems and just skated by with no GVHD or issues post transplant. Since I am still on prednisone (steroids) my immune system is still suppressed to where I should avoid crowds and still am under dietary restrictions. So not too much has changed in that department yet. But after everything I have gone through a little bit more time isn't a huge deal anymore. I know eventually I will be able to enjoy those things again. I am however getting off the prednisone fairly quickly. They were taking me down every week and now I am going down every 4 days in dosage. So as of Monday I will be down to 20 mg once a day. After that they will slow down the process a little bit, but hopefully the restrictions will lessen a little after that.

I did see my doctor yesterday and he thinks that my low platelet count is a delayed reaction to GVHD. My count is still low but has been holding for the past week. So at least it isn't dropping anymore. I have to be more careful because I am bruising easier and wounds don't heal as quickly right now. I also do have a small infection in my toe right now, so I am on antibiotics for 10 days to hopefully get rid of it. Just more little bumps to go over. (: But everything else is looking good and the rest of my numbers are holding tight, so I am happy about that.
I hope that everyone had a wonderful Christmas!

Wednesday, December 17, 2008

Just a quick note!

I had mentioned before that I was scheduled to have my Day 100 bone marrow biopsy on the 23rd. Well due to and unusual decrease in my platelet count my doctors have opted to do it as soon as possible. I will be having my biopsy tomorrow morning at 9:00 am. My platelet count has cu in half over this past week which means my body is not producing them like they should. They aren't quite sure why, it may be a virus or it could be nothing just a weird trend. Since results from biopsies take a while to get back they just want to get this done as soon as possible. I just ask for prayer that everything comes back looking good and that my biopsy reveals that there is no more cancer or blasting of cells. Thanks and I will write more later!!

Thursday, December 11, 2008

Where Does Time Go?

I can't even believe a week has passed since I last wrote on here. I don't know if it is just because of the Holidays, but the weeks just seem to be slipping by. Needless to say that my boredom is no more and I can't seem to find enough hours in the day, as I am sure a lot of you have this same problem. At least most of the things that I am doing are by choice. I don't really have a lot that I HAVE to do like most people AKA: job, kids, etc. But they are little goals I am setting for myself to accomplish, I wouldn't be me if I didn't have goals to strive for. I am sewing quite a bit and even designing my first quilt pattern. I am having a lot of fun being creative and trying to do some things I love but never had the time to do before. Yesterday I also went out shopping a little and even went out to eat. Now I hope that my medical team doesn't read this because I am not really supposed to be doing that stuff yet. So shhhh... I just needed to get out though and I was craving a hamburger so bad. I prayed over the food asking God to protect me and to protect me from people while I was in Target. It felt really good to get out and do some "normal" things again. I won't make it an everyday habit until they give me an ok, but it was a nice change of pace.

Things continue to look good and I was taken down another 10 mg on my steroids. I just have to remember to be putting my cream on my feet so the redness will go away. Even though my steroid dose is getting smaller I seem to be swelling more and more. My upper body and face are getting so big and I am hating it. My skin is so tight! Just when I think it can't swell anymore, I wake up the next morning and it is bigger. They say that unfortunately it is going to take a long time for the swelling to go down. Yeah for that. At least I am not trying to impress anyone right now. I don't see too many people so it isn't too bad. The only little setback that I have had lately is that I took a pretty big fall this past weekend. I was walking the dogs and our bigger dog bolted out and took my legs out from under me. I fell pretty hard to the ground twisting my ankle on my left leg and banging up my knee on the right leg. So that is both of my legs, leaving me unable to walk very well. I was layed up for a couple days before I was able to walk around again. My legs are really really weak anyway right now because of the steroids, so this was just a added bonus. They are a lot better now, still really sore but at least I am able to walk around and do stuff. Other than that everything else is going well. I am set to have my next bone marrow biopsy on the 23rd. This will be my last one until my one year mark, as long as everything in between now and then goes smoothly. Be praying now that good results will come from it! Thank you!!!

Thursday, December 4, 2008

Day +77


Yesterday I got a little surprise in the mail. I got a package and when I looked at the address I had no idea who it was from, only that it was from Montana. I opened it and it was a rag quilt. It was sent to me by an organization that was set up to make blankets for those that are dealing with chemo and radiation. It is in memory of a woman who passed away who received one and loved snuggling with it whenever she had to sit for treatments. Someone from the small country church in Augusta, Montana where I was living requested it for me. So that was a nice little surprise and blessing to brighten my day.


But things are continuing to go well and I am gaining energy daily. I saw my doctor on Tuesday and they are pleased with how I am doing. He bumped my steroids down another 10 mg. So the goal is to do that every week and pray that my body handles it well and doesn't react to where I have to be put on more again. The sooner I am off the steroids the sooner I can do things again. I was told that as long as I am on them I will be restricted. This even means after day 100. I am still on the steroids after day 100 I will continue to be restricted till I can get off of them because they act as a mask, blocking any issues that may be going on. So be praying that they can just continue to decrease every week with no problems. I can't wait because then maybe my face can stop swelling like a balloon and my muscles can become normal again. I was told that the reason my upper leg muscles are so weak and I can't even get up by myself from a sitting position is because the steroids cause muscle atrophy. I am supposed to do exercises to strengthen them daily, but until I get off them I don't think it will get back to normal again. Another great piece of news that happened on Tuesday was that I didn't need any magnesium replacements. That is the first time since transplant. My doctor asked me how much mag. I was taking at home, and I told him none. He was a little bit shocked. For some reason I guess my body is producing it on its own. That is pretty much unheard of in transplant patients. Usually all the immuno suppressents we are on depletes your bodies magnesium. So that is nice because for a while I was taking like 18 mag pills a day. So hopefully that wasn't a fluke and I continue to not need the replacements.


No replacements means less time at the infusion center which is good. Normally I wouldn't care too much because all I do is either go there or be at home. But since I have been feeling better I have adopted a lot of little projects to keep me busy for December. I am working on a couple quilts for some friends, filling out Christmas cards, shopping online for my gifts, I bought a new book that I can hopefully get to soon and I started feeling like cooking and baking again. So I have my little list that is keeping me quite busy these days. I have to say it feels really good to do things like these and not have to just lay down and watch movies all the time. That was starting to drive me a little crazy!!! It is good to do every now and then, but I am enjoying being able to do other things as well now.

Saturday, November 29, 2008

Thanksgiving

Me, Lonny, Mom and Dad

Aunt Stacy, Ryan, Nicole and Uncle Pat

Me and Nicole

Me, Nicole, Ryan and Lonny



This was the first time I have been home for Thanksgiving in 5 years now. I always choose to spend Thanksgiving in Montana with my friends and to come home and spend Christmas with the family. It was nice to be home for a change on Thanksgiving this year and to be able to spend it with family. It was a little different than the norm this year. We usually all get together at my Grandma's house with my dad's side of the family. But things got all confused this year and everyone kind of ended up doing their own thing. We wouldn't have been able to go anyways because my doctors told me that it still wouldn't be a good idea to be around a large group of people right now because of the steroids that I am on. So in the end we actually ended up spending it with my aunt, uncle and two cousins. My mom, dad, brother and I went out to their house for a really nice Thanksgiving. Lots of amazing food as I am sure most of you enjoyed this holiday.

As for a little update on my current condition: things are starting to get a lot better. I have had a really good week. I am starting to gain more energy and able to do some more things. My stomach has been doing great and I have been able to eat normal again. Hopefully day by day things will continue to look up and I will gain more and more energy. They have reduced my steroid dose down 10 mg, so I am taking 70 mg now. I am fortunate not to have a lot of the side affects that wonderful steroids bring. About the only side affects I have are a "chipmunk" face and joint pain. My face is all swollen, which I am not a huge fan of but that is not as big of a deal as it could be. More vanity than anything I guess. Another good bit of news we received at my last doctors visit was that my donors bone marrow has officially taken over 100 percent. Great News!!! I am going to have my next bone marrow biopsy on day 100. So as for now I am still Leukemia free and hopefully will stay that way forever. So as different as this holiday season has been and will continue to be for me, I have so much to be thankful for. This has definitely been a time when I have realized what is really important in life. Hope that everyone had a wonderful Thanksgiving and continues to enjoy this holiday season.

Friday, November 21, 2008

Yes, I am alive!

Sorry for the LONG delay in updating everyone. Things have been a little bit crazy with ups and downs and for some reason I have just not been able to concentrate on things very well. They have put me on high dose steroids now so that might have some contribution to my mental state. Since I last posted I have been in and out of the hospital. I had a 10 day stay there and don't remember a whole lot of it. I was pretty much sleeping 20 hours a day thanks to the nausea and pain medications. I ended up getting put in the hospital because I was dehydrated and could not keep anything down. I wasn't even able to keep water down. It wasn't the greatest time, but I survived it. Since I have been home I have had my good days and my bad days. My stomach still seems to pose an issue a lot of the time. I have had my days of vomiting and not being able to keep food or meds down. But the past 3 days have been better and I have been able to keep everything down with minimal nausea. My rash is also under control now, which is a very good thing. I saw my doctor today and everything else is looking good. They are just trying to get a handle on this stomach issue so they can take me off the steroids. I can't wait until I can get off of them because being on them restricts me even more because they suppress my immune system. I am getting a little bored being home all the time, there is only so much you can do. I have been getting addicted to watching House MD now. I am renting all the seasons on Netflix, and it just keeps drawing me in. I find it interesting because half of the things they talk about I have either had done to me or have heard about. I guess I have been through a lot of things medically speaking.

Yesterday was a good day though. I had some visitors come and see me. Laura and Dolores came and brought stuff for lunch. We enjoyed just sitting around and chatting while catching some of the CSI:NY marathon. Then my brother called and came with my niece and nephew to have dinner and visit. I really am not supposed to be around the little ones but we had not seen them in so long, so we decided a couple hours wouldn't hurt. Purell and Lysol anyone? It was a good time and I was glad that I was feeling better to have some friends and family by. I was beginning to wonder if I knew anyone anymore because I have been under quarantine for so long. I keep telling myself someday it will all be back to semi "normal" life someday. I know it will never be like it was, but I can't wait until I can eat normal and live normal again.

Saturday, November 1, 2008

Through the Valley I Go

Things have been a little rough over this past week. My small rash that started just on my arm and neck spread pretty much over my entire body besides my face. It was really bad on my feet, where it was burning and itching constantly. The rest of my body itched as well but not as bad as my feet. I saw my nurse practitioner on Thursday and she said "well hello donor". It is most likely the GVHD (graft verses host disease) getting worse. See, most likely my donors cells are moving around inside of me and my body is like hold on I don't recognize these as my own and are fighting them, hence the rash. A reaction of the unknown. They did a skin biopsy on my arm just to confirm that it is the GVHD. We wont get the results of that until Monday or so. She gave me a higher dose steroid cream to lather myself with to help the rash. If it doesn't get better just using that they are going to have to put me on oral steroids. They put you on steroids because they are what cures GVHD believe it or not. I am hoping that it doesn't come to that because along with it helping the problem it does cause a lot of side affects especially in mood swings and things such as that. Fortunately the cream is starting to work even after just a few days. My rash is starting to get a lot lighter and reducing in size.

Unfortunately the rash has not been the only thing going on right now. I have been extremely nauseous over this past week. For even a couple days, I have not even been able to keep any of my food down without vommiting. Along with that I have been having constant chills and a low grade fever. My NP was a little more concerned about all of these symptoms than even the rash. She has me on a constant schedule of nausea meds, but they only help for a short time. Yesterday I had blood cultures drawn to check if there is any bacteria that grows back confirming an infection. The on call BMT doctor is supposed to call me this weekend if they find anything. If it comes back positive I will be headed back in the hospital to probably receive antibiotics to get the infection under control. I am also supposed to be watching my temperature at home VERY closely to make sure it doesn't get any higher. The magic number is 100.5. If it reaches that high, back to the hospital I go. Lately it has been riding that fine line. It has been consistently at 99.5, but reached 100 last night. All of the other symptoms I have been having indicate something is going on inside of me. I guess this is my valley. I was really lucky in the beginning to not have any real issues or problems. I skated right through the first part of it. My NP says there are always going to be those peaks and valleys through this healing process. I am just going through a valley right now. So I am resting a lot and watching a lot of movies because I can't do much more than that. I get too nauseous doing anything else. I will try to keep everyone updated on what happens.

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!!!

Tuesday, September 30, 2008

The Quilt of Love (Day +12)

Opening the package.

Just another pic after opening it.

Here is the Quilt!!!!
On my hospital bed.

My Mom and her Quilt.

The pictures above are of the quilt that was made for me by members of the HGTV message board. A group of people I mind you who I have never met. They heard of my situation because my mom is a member that posts on the message board. They have been wanting to make me this quilt since they heard about this whole thing. People from around this entire nation have made me a block and then the actual quilt was organized and put together by a couple more people. I have to say since I have heard of this I have been really excited and blown away by this act of kindness. These people have also been so faithful at sending me packages and cards daily while I have been at the hospital and at home. They send me e-mails and posts on my message boards continually. I can never FULLY express my gratitude to this group of people. I have felt truly blessed by God for all they have done for me. THANK YOU SO MUCH!!!!!! I also wanted to mention that we had another little surprise when we opened the package. There was also a quilt made for my mom! That was a surprise because I knew they were making mine, but we didn't know they were making my mom one as well. She felt so blessed and I am thankful to them for doing that. My mom has done so much for me during this time, I am just glad that she received something that just makes her know how much she is appreciated. Thanks HGTV people for that. So I am now using it on my hospital bed and snuggling up with it. I love it so much and am going to treasure it for the rest of my life. It will forever remind me of all the wonderful people who prayed for and cared for me during this hard time in my life. Even those I had never met!

I will also throw in a little update on how my day was today. Like I said in my last post I have my good days and my bad days. You never know which one it is going to be. So what was my day today? I am pleased to report it was a good day. The biggest reason it was a good day was that I got white blood cells today!!! HIP HIP HOORAY!!!!!!! My white blood cell count was 2.4 today, which for those that don't understand it 2,400. In other words, that is great. I am on my way to recovery and on the road towards home. I have also been feeling rather well today. My throat soreness is gone and I have been able to eat without vomiting today. Food doesn't really taste right, but that is probably just because of all the stuff that has been done to me. It takes a toll on all aspects of your body. They said things would start looking better once my white cells came and they were right, again. Now we are just looking for signs of GVHD and watching my body for that. Other good news is that because of me feeling better they are switching my meds back to oral and reducing my pain control device everyday. Soon once they see I am eating enough my nutrition bag will leave as well. Meaning the sooner I can do these things on my own the sooner I can go home. Hopefully soon, I am not sure what they are thinking yet but I am hoping that in a week or so I will be on my way home. Maybe even earlier. I guess one can only pray!

Monday, September 29, 2008

Day +11

It seems like my tree just keeps
getting bigger, and bigger, and bigger.
I stare at this sign everyday from across my
bed. Things may not be easy but my faith will
make it possible.

Sorry for not updating in a while here. Things have been happening and I have been having my good days and my bad days. More bad days than good days lately. As you know from my previous post things started to happen the day after transplant and I had all these stomach issues and what not. That persisted for 2-3 days and then things started to look up a bit and I started to feel a lot better for like 2 days. Then things started to hit me even harder like a ton of bricks. I developed those sores down in my throat where I could no longer eat or drink. I have continued to be on IV nutrition and fluids to keep my body healthy. Most of my meds are continuing to be given to me in IV because of my inability to swallow. Another thing that has been hard is to keep my nausea under control. I am on every nausea med imaginable, I think right now. Also to help control the pain in my mouth and throat they have put me on a PCA (Patient controlled analgesic). It is on a constant drip of Dilaudid, which is one of the strongest pain meds you could receive and a med even WAY stronger than Morphine is. I also have a little button I can push whenever I feel that I am in need of more. The first couple days where pretty rough everyone trying to figure out the best "plan" regimen to put me on for it. But today I think it was finally figured out and the pain is being controlled quite nicely. The only affects that I get are really itchy skin and feeling really tired. But it seems when one thing gets under control another opens and shows it's ugly face. Though my pain is getting under control and I feel like I can swallow, my stomach is still saying no, no, no!!! I have tried to eat a few things today and every time they have come right back up. So I am finding it just easier to live the day with no food. Thank goodness I get enough nutrition from my trustee IV pole. I have been sleeping most of the day and when I am not sleeping I am just lying there because motion induces my nausea.

My doctors came in and said none of this is to be alarmed about. It just simply happens and we have to go through it. It is phase 1 of the post transplant recovering. This is mostly recovering from the after effects of the chemo and radiation. I am hopefully going to start engrafting this next week and producing some white blood cells (hopefully my donors). Then we go on to phase 2 where we wait and look for signs of GVHD (Graft Verses Host Disease) and deal with the affects of that. They can be anywhere from mild to severe. So I am hoping for the mild side, but I know everyone does. I guess I am going to have to be strong and deal with it either way. So just wanted to update as I have this short time when I am feeling good enough to do this. Thanks for checking the updates. And thanks again for your thoughts and prayers. I love you all!!!

P.S. I am excited for my next entry. When I am feeling up to it I have a wonderful thing to write about a package I received a couple days ago. I am excited! When I am feeling up to writing, that post is going to be next.

Monday, September 22, 2008

Happy First Day of Fall

Today is the first day of Fall! Anyone that knows me well, knows that this is my favorite day of the year. It is the start of the most wonderful season of the year. Some may say that I am a little over obsessive about this time of year, but I just can't help it. Everything about this season just makes me smile and feel all warm inside. I think that if there were a place where it stayed Autumn all year around, I would move there in a heartbeat. Anyone know of such a place? In the meantime I am just hoping to fulfill my dream of going to Vermont for the Fall some year. Actually since my birthday is the first week of October, I always thought that it could be a good birthday present someday since foliage is at it's peak then. I just

know that if I go though I may never want to leave. Who knows maybe life's adventures may take me there someday to live for a while. Now wouldn't my parents love that, even further away than Montana is. (:
I am a little bit sad knowing that my Fall 2008 season is going to be spent indoors avoiding all the little nasties out there in the world. Even so Southern California isn't known best for it's Fall foliage. Palm trees don't change colors I guess. I will just have to purchase many many happy smelling candles to fill my room while I am recovering I guess. Maybe make an apple pie or two, so the house could be filled with a wonderful aroma. Yeah, I think my Dad would appreciate the latter.


As I have been thinking of this time of year and what I would normally be doing I can't help but think of MWSB and the memories that I have there. Being a cook there I would always express my love for this day through my food. My favorite thing to do was to make fall pancakes for breakfast. They would be normal round pancakes but I would dye them with all the fall colors. So it looked like a wonderful array of leaves. I would then either make fall sugar cookie cutouts or fall cupcakes with leaf sprinkles. Believe it or not I
own more fall cookie cutters than Christmas cookie cutters. Last year at the school this day landed on a Sunday. We have this thing where we have our "big meal" for Sunday lunch after church. I remember I made a turkey dinner and apple pies with little fall cutouts in them, just thinking about it makes me happy. Now I am just going to tell of one more of my fond memories that just goes to show how much of a wierdo I am about all of this. At MWSB we have staff meetings every Wednesday afternoon before lunch. They are held at John and Terry's (the director and his wife) home. They had this pumpkin spice candle that I would always want to smell and lite during our staff meetings. The only thing is that it made me laugh and giggle uncontrollably at times because the smell made me so happy. I know what you are thinking, "are you sure there is nothing else in that candle?" I will assure you it was a normal candle, it is just now referred to by many as Lyndsay's "happy candle".
So thanks for bearing with my little blog here about the Fall Season that I love and hold dear to. I know many are probably wondering how I am doing since my last post wasn't such a pleasant one. I am pleased to report that I am feeling better than I was feeling a few days ago. My counts are now down to zero and everything else in my chemistry's looks good. My stomach issue is still there but a lot more bearable. The nausea meds they have me on have been working for the past 2 days and I have been able to get some food down with no vomiting. I still feel far from "normal" but I know that I wont for a while. In the meantime I am watching those plus days go by slowly but surely; today is +4. Now we just have to wait for my white count to start going up, meaning my new cells are engrafting. They say we should expect that sometime between day +14 and day+21.
So Happy First Day of Fall Everyone! Go enjoy it and buy some yummy smelling candles or bake a heavenly apple pie. I will sit here and partake in spirit in my hospital room.

Sunday, September 21, 2008

The long hard road begins.... (Day +3)

Things have not been too easy since the transplant. I knew that things would not be easy and I have been going through some tough days since Thursday. All my doctors say that it is to be expected and that you just have to keep looking forward and know that there is going to be a light at the end of the tunnel. That you have to go through bad to get to the good. So I am trying to keep that in mind as I am struggling through these hard days. They think that I have mucacitous in my stomach because I have been unable to keep any food or liquid down. I have had really bad nausea and vomiting along with constant stomach pain. I have now been put on IV nutrition and fluids and most of my meds have now been switched to my IV as well. Needless to say I have quite the IV tree now, with more cords than a tree at Christmas. (:
I have been sleeping a lot of the day, some due to my meds and some just because it is easier to go about the day. They say that these things are happening probably because of the high dose chemotherapy and TBI that I received. The effects of them are just now starting to set in. I have to say that TBI better have done it's job because it sure did do a number on me. So there is some of what has been going on. I am going to try to update as much as I can. Hopefully things will start to look up sooner than later. In the meantime I am trying to keep strong and picture myself feeling a lot better in the coming weeks.

Thursday, September 18, 2008

Transplant Day!! (Day 0)

Happy 2nd Birthday to me.
The cooler my cells came in.

The nurse checking off the bag before it gets
hung.


My new cells.

It is almost reaching me!

Those pre meds really did make me tierd.

Well today was the day. The day that I received my bone marrow transplant from a man all the way across the world that I have never even met. I was told he is probably from Germany, which is kind of cool to think of the actual country that this man is from. I have been told though that because it is an international donor, I probably will not be able to contact this person for 2 years post transplant instead of a year for those that are domestic. In the meantime I am able to write him letters and thank you cards just as long as I do not mention any specifics and they have to be screened by a board before they are sent. So I am going to be eternally grateful to this person for giving me a second chance at life. I just hope someday I will actually be able to thank this man in person or through a phone conversation.

As for the transplant things went well. I received the infusion of cells at 3:30 pm today. It was very anti-climatic as I was told that it would be. You would think that such a huge thing and something that can change your life would involve more than just a bag of what looks like blood getting infused into you. But that was exactly what it was, a bag of cells that was infused for 1 1/2 hours. I had no reactions to it and slept through a lot of the transfusion due to the pre meds that I received. Now it is just the waiting game. Waiting to see how my body is going to respond to these new cells that they do not recognize as their own. Hopefully I will handle the whole thing well and be in the hospital for as little time as possible. I guess only the days will tell.

Thank you to everyone for their love and prayers that have been sent my way. I have defiantly felt blessed by all the support of everyone all over this world. It has been amazing to me! The cards and notes have been very encouraging and the prayers mean more than you could ever know. I know I am going to get through this and just know that every person who I know and those that I have never even met have played a huge role in my recovery and the support that I am needing to get through this. God is going to remain faithful, this I know!

Wednesday, September 17, 2008

Day -1

The past couple days have continued to be a little rough. I am assuming that the radiation is the culprit of the days being somewhat rough. Along with not getting very much sleep throughout the night I have had to continue to get up at 4:30 am to get ready for my radiation appointments in the morning. I am very happy though because I just have one more session this afternoon at 4:30 pm. I can't wait until it is all over! I think the radiation has been a little harder on me than the chemo has been. I have just been so tired and just feel like sleeping all the time. So I usually have been just getting back from my appointments in the morning and sleeping throughout most of the afternoon.

Along with the tiredness I have continued to have some nausea. I have been fortunate enough to not be actually vomiting though. Usually when I feel real nauseated I just try to go to sleep or ask for some meds before it gets too bad. So far so good and I haven't experienced the joy the actual vomiting yet. I have not been able to eat for the past few days though. My doctor says that I really need to try to get something in my stomach, even if it is a carnation instant breakfast or something like that. He wants me to have some good nutrition in me, but I am having a hard time stomaching the thought of eating anything right now. My appetite has simply left me. So I am hoping that with radiation done today and hopefully be getting better nights sleep the days to follow will be better. Tomorrow is the day and I can't believe it is actually here. I know that the road ahead is not going to be easy but I am hoping for the best and the level of GVHD that I get is mild and not severe from the transplant. I guess we will just have to wait and see. In the meantime I am overjoyed because tomorrow could be the start of a new life!

Monday, September 15, 2008

Radiation is kicking my butt a little (Day -3)

Last night they weighed me because who doesn't like getting weighed every eight hours. They have to make sure that I am not retaining all the fluids they are giving me and the chemo is flushing out of me properly. Well I was over my base weight so they had to put me on lasiks. Something they inject in my IV to make me go to the bathroom a lot more to get all the fluid out. So about every 5 minutes for several hours I was in that bathroom. Needless to say I didn't get a super great nights sleep. But that wasn't the end of it, they also woke me up at like 4:30 am to pre-medicate me and get me ready to go to my radiation appointment. Since it was my first appointment they had to do a bit more to get things ready and in the meantime I had to lie still with my arms locked together above my head for about an hour and a half. I was on the verge of tears towards the end just wanting to let my arms down. They say it gets easier each time, so I am headed for my next appointment any time now, so hopefully that is true.

When I returned from my appointment this morning I was really tired and felt a bit nauseated. They nurse came in and gave me some Ativan to help with my nausea and that medication also puts you to sleep. So I pretty much have been sleeping the entire day. I feel like maybe the combination of the chemo and radiation is starting to wipe me out. Hopefully things will get a little better in the next couple days of radiation. In the meantime I guess I have plenty of time to rest, so I am defiantly taking advantage of that right now.

Sunday, September 14, 2008

Day -4

You will notice that in the heading I titled it Day -4. All of your days leading up to your transplant are all negative days. Then the day of your transplant is Day 0 (aka: your 2nd Birthday). Then all the days that follow your transplant are all positive days. I just thought that I would explain it a little for those that didn't know. So here I am at day -4:
This morning I have just finished my last dose of Cytoxin (my chemo). Overall I have been responding to it fairly well. I felt great yesterday with no side affects whatsoever. Both of my brothers, my sister-in-law and my niece and nephew came to see me in the hospital yesterday too. It was great to spend some more time with them and see the kids for the last time, for quite a while. It is going to be hard, but from now on no more little germs at least for the next 100 days post transplant. I just keep thinking to my self though, what is 3 months to have all these restrictions when you know you will have your whole life ahead of you. It may seem hard for now because I am not used to having such strong restrictions on me, but I will bear with it knowing that the decisions I make now are going to affect my life later. To me that is a sacrifice that I am willing to take for the time being.

Today has gone pretty good too. I have been feeling a little bit more tiered and I can feel my appetite starting to slip a little, but I guess that is to be expected. I have been resting a lot of the day and keeping it pretty low key. I haven't had any visitors so I have been able to have some good alone time and down time. As much as I love people coming and visiting, every once in a while it is nice to just have some peace and be alone too. The doctors seem to think that everything is going well though. Everything looks good on their end and everything on my end, so all in all we are lining up quite nicely. Tomorrow I am going to start my TBI (total body irradiation). So I get to get up bright and early because my first appointment for that is at 6:00 am. It is also in the next building over at the Moore's Cancer Center so they are going to have to actually take me over there by ambulance. Crazy I know, considering you could walk there in 2 minutes. But I guess it is hospital procedure, so of course I go along with it. Other than that I am just trying to find things to keep myself busy and trying to walk in the halls as much as I can. Because come Thursday I am going to be locked up in my room until I get discharged. That will be a big change because usually I love leaving my room as much as possible to get a change of scenery. But yet again I am going to do what I am told and try to follow their orders as best as I can. Hopefully the time will just fly by and the next thing I know I will be headed home. That will be a great day!! But thanks again to everyone for the prayers and support. It is going to help me get through this, that is for sure. Just know that they are greatly appreciated!!!

Friday, September 12, 2008

Back to the resort I go!!!

Here I am in front of my room 364

At least I have a nice view from my window

Today was the day I returned the the good ol' resort in La Jolla (aka: the hospital). I received a call at 7:30 am saying that they did not have a bed available yet so they would call me when one was available. That was alright with me because it allowed me to get a few more things done that I wanted to do. That included having one last good meal before my life becomes VERY restricted for the next 100 days. My mom and I went to Islands restaurant and I had an amazing burger and fries, and to top it all off had a huge brownie ice cream sundae. I was very full and very satisfied after leaving the restaurant. I think I probably gained 5 pound just eating that, but I know that my appetite is not going to be very good come a week from now, so it all balances out in the end.
After eating we went home and I did some packing and took a shower so I was ready to go. Well 2:30 pm rolls around and still no call from the hospital. I decided to call for myself and see what was going on. They told me that I could be admitted at 4:30 pm. So I rested and did a few more things at home and then we took off. Driving on the way to the hospital I was thinking how surreal this moment is. I mean this admittance is unlike any other before. This is it, the home stretch!! Even though the transplant isn't going to actually be for a few days I have such a peace and I feel like I can actually breathe now. I was telling my mom as I was sitting in the room it just seems more calming this time. I feel like there aren't so many things to think about this time and wondering what is going to happen next. I know what the next step is and of course it is not going to be easy but at least I know somewhat what's coming. I just really know God is granting me the peace and strength that I need to go through this.
I was very welcomed when I walked in those doors to 3 West today. All the nurses were so happy to see me again and especially this time knowing that it is transplant time. They have been through this whole thing with me and are so happy to share this special time with me. I love that I have been able to develop relationships with all the nurses and doctors here, it makes being here so much more enjoyable. When they actually care and you are not just another patient walking through the door. I have been blessed by the staff here at UCSD. But tonight isn't too eventful I am just going to be receiving my IV hydration before I start my chemo tomorrow. I guess I will be getting a lot of it because I have been told that the bathroom is going to be my best friend tonight. I guess that rules out getting a good nights rest, oh well I have plenty of time for that later.

For those that were wanting to know my address to send things here at the hospital it is:

Lyndsay Nishioka
UCSD Thornton Cancer Hospital
Mail Code 7608 Room:364
9300 Campus Point Drive
La Jolla, CA 92037-1300

Tuesday, September 9, 2008

Triple Lumen Hickman #2

Waiting to go in the operating room



Here is my new triple lumen hickman


Yesterday I went to the hospital to have the surgery to put another central catheter in my chest. I have already had one but a month and a half ago it got infected, so they had to remove it. I have had the picc line in my arm, but to get a transplant you need the one in your chest. So the picc line in my arm got removed yesterday as well. The procedure went well, I was under conscious sedation so didn't really feel pain just some tugging and pulling at times. I was really sore, tiered and hungry when I got home. My procedure wasn't until 3 pm and I couldn't eat or drink anything all day because of the contrast they give you. By the time I got out of the operating room it was 5 pm and I was really hungry and thirsty. So we drove home and I ate something and went to bed not too long after that. I didn't really sleep that well though. My neck and chest were really hurting so I was taking constant pain medication, but it still didn't help too much.

This morning I had to go to the infusion center for labs and a dressing change on my central line. I am going to have to go for 3 days in a row to get it cleaned and the dressing changed on it because it is new. But today while my nurse was trying to flush my lines and draw blood, it wasn't doing anything. He was able to get one of the three to give him enough blood to send to the labs. He said that it shouldn't be doing that especially since it is brand new. My bone marrow coordinator came to see me and said for me to go back to the hospital and they are going to take a look at it. Worst comes to worst they are going to have to take it out and put another in. I was thinking to myself "oh great"! So I went back in the operating room and they did an x-ray/ ultrasound and found that it was the best case scenario. They had just tightened the stitching too tight and it had closed off the lines. So the doctor just cut my stitching and stitched me back up, a little looser this time. It wasn't too painful even though I didn't have any numbing medicine. I guess I am used to needles going through me by now (: ! So now I am back home and quite exhausted. I think I am going to take a nap and hopefully get some much needed rest.

Sunday, September 7, 2008

Time with family and friends

Here I am enjoying some fresh air
My beautiful niece Natalie

Michael, Emily and Kaytee

Auntie Lyndsay with her favorite niece and
nephew outside Macaroni Grill

Mom, Me, Dad, Natalie and Michael
This was a good weekend filled with friends, family, fresh air and good food. This was also the last weekend before I get admitted in the hospital for my transplant. Friday one of my aunts and some friends came by to visit. I had an appointment at the infusion center but luckily I did not need any replacements. I also got the great news that my bone marrow biopsy that I had a week ago came back clean again. I was very happy about that, it just seems that everything is lining up nicely now. After my appointment was over we went and had a good lunch together and then did some shopping. We later came back to the apartment and had some good catching up time and watched What Not to Wear. For some reason I have really come to love that show, I defiantly have been learning a lot about fashion that I didn't know before. It's entertaining if not anything else.
Saturday was a kind of lazy day around the house. I did some things that I needed to get done and talked on the phone quite a bit. I was a able to talk with several of the staff up at MWSB in Montana. They all decided to call me on the same day and didn't know the others had called me already. By the fourth phone call I was thinking, "wow did they plan this or something"? Honestly I just think it is because they were all taking off for the week long backpacking trip this weekend. Yeah, I am pretty sure that was the reason. Nonetheless I thoroughly enjoyed my conversations with everyone. I miss them all so much, it is good when I can hear their voices every once in a while.
Then today my Mom, Dad and I drove out to my brother and sister-in-law's house to visit with them and the kids. We hadn't seen them in a while so decided it was way past time to make a trip out there. So we spent the afternoon there playing with the kids and then went out to Macaroni Grill for dinner. A lot of Jaimie's family came along, so all in all there were 14 of us at dinner. It was a party! We all enjoyed some good food and some good time together. It was nice to be able to see everyone again.
So I think that I really did enjoy my last weekend of freedom for a while. It is strange for me to think of how restricted I am going to have to be come a week from now. My life is going to change even more drastically than it already has. Tomorrow I head to the hospital to have another central line put back in my chest for transplant and to get the picc line in my arm removed. So it starts the week of craziness! Lots of appointments and lots to do at home before I go to the hospital for transplant. I just hope I can get it all done.

Thursday, September 4, 2008

I got two tattoo's today

Alright so I didn't get the kind of tattoo's you would think of. The kind where you go to a tattoo place and choose your design. I didn't get to choose a fun design or anything, it was chosen for me. I had my meeting in the radiology department today. I am going to be getting TBI (total body irradiation) as part of my pre-transplant regimen. I will first have 2 days of a high dose chemotherapy and then 3 days of radiation twice a day. So today I met with my radiation doctor and he told me how the process goes and the risks and benefits of it. Then I went in for a simulation. I had to lay out like I am going to for the actual treatments and they mapped out and took pictures of my body so they know where to do things. As for where the tattoo's come in, they had to make two dots on each of my sides and they are now going to be a permanent tattoo on my body. They really are not that noticeable they kind of just look like little freckles. This was to help them know where to center the lasers during radiation. First step radiation tattoo's, next step a full blown tattoo on my back (: Just kidding!!!

So things are continuing to line up nicely and staying on schedule. Another great thing is that I have finally finished my IV antibiotic at home. Yeah!!! After 7 weeks of being on it I am finally finished. It is really nice to not have to worry about being home every 6-8 hours because I have to be on the IV. It feels like freedom!

Tuesday, September 2, 2008

Lots to do!

Today was a busy day at the clinic and hospital. I first visited the infusion center at 9:30 am for lab draws and waited till my results came back. When I received my results the nurse said that I had a very low potassium level and a low magnesium level so I would need replacements. I wasn't too shocked about the potassium because I often need it, but this was the first time I ever needed magnesium. They said that it would take 4 hours for all the infusions. Well I had two other appointments so I would have to get unhooked to go to the appointments and then get hooked back up to finish my infusions. I was thinking "great, I am going to be here till they close". They then talked with my doctor for him to OK the potassium order and he thought that something didn't look right in my chemistry levels. He wanted the nurse to draw my labs again. After getting the second results it revealed that I was fine and didn't need any replacements. Yeah for a doctor who pays attention to those things. So I was able to go home for an hour in between appointments.

My next appointment was at 1:00 pm with my bone marrow coordinator and my doctor. This was the "fun" appointment. The time when they told me of all the possible things that could go wrong with the transplant and what to expect and when to expect it. I had to sign several consent forms and go through all of the paperwork that is involved with a bone marrow transplant. Earlier in the day we were talking with a wife of a patient who just had a bone marrow transplant. She was saying be prepared not to get a good nights sleep after going through that session. Well honestly most of the things he told me I had already heard before. I have read a lot about this already so I feel that I have been preparing myself for it. Also I just seem to have a peace about the whole thing. I am more excited than scared about this. I mean I don't have any other option and this could get me my life back again, so lets do it!!!! I love my doctor though, he is one of the most optimistic doctors I have ever met. Some might not like that but I really appreciate the fact that he wants to give you some hope. He is always joking around in our appointments and talking about his family. He is a very personable guy and I feel so blessed to have him as my doctor. So things are signed and ready for transplant!!

My final appointment of the day was at the hospital to get a CT scan of my chest. This is due to the time when I got really sick in the hospital and I got that really bad infection. They have been keeping me on antibiotics to fight it off. I have been doing this IV antibiotic at home as well. So the CT was just to check that all of the infection is now gone and they could get me off this antibiotic. I am going to be so happy to not have to wake up early and stay up late to do that wonderful IV.

So after a long day of appointments my mom and I enjoyed a wonderful meal at PF Chang's. Such good Chinese food. I would recommend getting the Chang's Spicy Chicken if you ever go there. It is pretty much amazing! I am enjoying some good food before I get this transplant since I know I am going to be pretty restricted for several months. Then we went to Target because I thought it would be a good time right before everyone gets off work. Well everyone and their kid decided it would be a good time as well. Back to School time, oh I guess I forgot. So it was pretty crowded and probably not the best place for me to be. I just had to get a file box to organize all my medical stuff. Boy do I have a whole lot of that, and it is all over my room right now. So hopefully I can get things in order before transplant. At least that's my goal. Oh, and I got The Office Season 4 on DVD. My entertainment while in the hospital. So I think it was a day well spent!

Monday, September 1, 2008

The amazing acts of kindness of others

Since my diagnosis with Leukemia I have been so blessed by the love, prayers and gifts of so many people. I have reconnected with many people I have not talked to in ages and have become so much closer with those that are in my family. I have been overwhelmed by the love that everyone has sent my way. I just wanted to write about five people or groups that are truly a blessing to me. I am amazed at the kindness that they have given to me.

1. Jerry, Loren, Jane and Mike: After talking with my Doctor in Montana when he gave me my diagnosis he suggested that I receive my treatment out in California. This was because of my family being out here and the fact that there are "better" treatment centers that specialize in Leukemia and Bone Marrow Transplants. He suggested UCSD because he trained out here when he was going through medical school. We knew that I needed to get treatment soon since my diagnosis was Acute meaning I needed treatment NOW! It was a Monday afternoon and I got a call in my room from my Doctor saying he pulled some strings and got me an appointment in San Diego at 4:00 pm on Wednesday. He said that I needed to find someway to get there. Well, considering it was late in the day on Monday and it takes 24 hours to drive to California and we probably couldn't drive straight through because of my condition, that seemed like an unlikely option. Then you have all the germs on commercial flights, so that wasn't a good option either. Then we got a truly amazing miracle from God. It was a friend of a friend of a friend type situation. Where someone back in California had relatives in Great Falls who knew someone who had a private plane who often did "angel flights". So in a matter of a day we got in contact with and met these people. The pilot Loren flew my mom and I out on Wednesday morning and we got in San Diego at 2:30 pm. Truly an amazing story!!! I will be forever grateful for their giving and selfless act of kindness.

2. MWSB Staff: MWSB is the Bible college that I was working at when all of this happened. It was at probably the worst time that it could happen; graduation week. I was in charge of all the food and had all the planning to do. Even though it was a crazy week for everyone, still the staff made the 1 1/2 hour drive everyday to come and see me. Someone would always be there to spend the night with me. They truly helped me to feel that I wasn't alone in this. Even after leaving Montana to come to California for treatment they have continued to show me endless support. I know that they are one of my biggest prayer warriors and they offer me encouragement through letters and phone calls every week. Micah has helped me with all of the health insurance stuff and they are continuing to help me out with paying bills and insurance premiums. Honestly my biggest goal for getting better and through this is so I could go back to work there. Everyone has become like my second family and I can't wait to join them in ministry again, Lord willing. My thanks to them for offering me spiritual encouragement during this time.

3. HGTV Message Board: My mom is on the HGTV message boards. A message board where those that quilt, sew and do craft like things post and talk with one another. One of the ladies Lindsay that my mom has gotten to know has organized to make me a quilt. So everyone on this board knows of my story and many have volunteered to make a block for this quilt. So here there are people from all over this country that I have never met making me a quilt. How crazy is that! I am still amazed at how many people know of my situation and are offering their love even though they have never met me personally. Thanks to all those who toke the time to make a block for this quilt.

4. Mike and Dawn Johnson: Dawn is a member of my mom's little quilting group that she has out here. It is just made up of a lot of friends and family. Her and her husband are Christians and have been praying since they heard of my diagnosis of something they could do for me. After a while they just felt that they should run a marathon for the Leukemia and Lymphoma Society in my name. So right now they are both training to run this marathon on January 11th 2009 at Walt Disney World in Florida. They are now training with a team here in San Diego and I am their honorary team member. They are hoping to raise $8,000 dollars between the the two of them for the charity. If you want to know more about their progress or to donate, check out their blog page: http://www.ourbigrun.blogspot.com/. When I heard of what they were doing I was so blown away. It is one of the greatest gifts knowing that this is going to help in research to find a cure and better treatments for Leukemia. Thanks Mike and Dawn, and good luck training!

5. My Bone Marrow Donor: How can I even begin to thank someone for potentially saving my life? With having a uncommon HLA typing we all knew that it was going to be hard to find me a donor. I know that a large percentage of people who need a transplant are unable to find a match, so I am extremely grateful that they were able to find me one. Not only that but the fact that the whole process is happening rather quickly compared to a lot of other patients. I am unable to actually contact my donor until a year post transplant due to privacy agreements. Then after a year if both parties agree we could exchange information or even meet. The only things I have been told about my donor is that it is a male, he is 50 years old, in very good health and lives somewhere in Europe. So my donor is international and not here in the states. How selfless can one be to take time some time out of their life to donate bone marrow to someone they have never met. I am extremely grateful to this person, whoever it is.