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!!!

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

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.

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.

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!

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!

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.