Good News.....Finally!!

So I haven't written in a while because stupid me dropped my laptop while in the hospital. I am hoping that it can just be fixed, but if not I guess I am getting a new one. The computer is like my lifeline in there, so I know that I need one.
So I guess your wondering is that the good news? Fortunately that isn't the good news. There are actually a few things to report. First, my bone marrow biopsy came back clean! Yeah!!! Finally after three rounds of intense chemotherapy I am finally in remission. The Leukemia is finally out of my bone marrow. Not for good, but this is where I need to be for the next step of the process.
Which is where the next piece of news comes in. They have found a bone marrow match for me. There are 10 markers that make up an HLA typing (a bone marrow typing). A 10 out of 10 would be a perfect match. They found a 9 out of 10 for me which is really good. Obviously a perfect would be the best but they were very happy with a 9 for me. I have an uncommon typing because of the Japanese in me, so they knew it would be hard to find me a match. My doctor even told me that he didn't think they would be able to find one and he thought that we would have to go to umbilical cord transplant. So he was very pleased. I am also very happy that they were able to find one so quickly. Now it is up to the donor to find out when they are available to do their part. They give them several dates and ask which will work for them. So they can set up a date for transplant for me. My doctor is hoping that we can do it within the next couple weeks so I will not have to go through another round of chemo to keep me in remission. But if not they are hoping to at least set up for transplant sometime in August. I am happy this is happening quickly, because the sooner I have it the sooner I can get on with my life. Recovery is a very long time after, most of the time it is a year before you can go back to "normal life". So I want to get on with this as soon as possible.
The last bit of news to report is that I am actually home right now. I was discharged yesterday, and will hopefully be able to be here for a couple weeks this time. It feels so good to be out of the hospital right now. Just to be able to move around without an IV pole and to get a good nights sleep without being woken up for vitals every few hours. It might also be a busy time though, because we are looking at moving right now. As of now we live an hour away from the hospital minus traffic (and when does So. Cal not have traffic). The doctors say it is too far away for me to be away from the hospital, especially during transplant. So it is pretty much a requirement for me to live within 15 minutes of the hospital in case of emergency. So we are looking for an apartment in San Diego. Of course the hospital is in the richest part of San Diego, so things aren't cheap. That is why we are searching for an apartment. The nice thing is it is only 5 minutes from the ocean. So beautiful weather!!! But of course the one time where I live right next to the ocean I won't even be able to go in it. But that is alright, my goal is to get back to my beautiful mountains in Montana anyway. I have always been much more of a mountain person than a ocean person anyway.
Well, sorry this is so long. But I am glad to actually report some good news for once. We have been waiting for some good news to happen and finally it did. So lets keep this good news rolling and I hope to report a lot more of it in the future.

The Creature is starting to wake.

So anyways since I have last posted I have continued to be sick. The fever went away a couple days ago which is great. The pain and nausesa have continued and I have been on constant meds for that. Then yesterday they put me on another IV bag of ani-nausesa medicine. Then I went into the "coma". Don't worry not a real coma but I didn't wake up besides to go to the bathroom all day. I was pretty much very out of it. I don't remember anything that people said yesterday. It was a very weird feeling. But when I woke up this morning I got good news that my white count of blood cells are way up. They are at 5.4 and normal is 6-10. So that is good news but I contiune to deal with the nausea and feeling sleepy. The pain is really starting to go away though. So that means no more pain meds for now which is great. But I am actually being able to stay awake and get some things done today. Tomorrow is my bone marrow biospy (the good ol' bone drilling procedure itself). So cross your fingers Lord willing it comes back showing zero leukemia in my bone marrow. That would be great because maybe I could go home soon then. I will give everyone an update when I get the results of that.

Cancer Sucks!!!!!!

Well, normally I would think saying something like that was very negative. Since I have been diagnosed with leukemia I have heard that statement from many leukemia patients and even people that work here in the hospital. I always thought; that is not a very good attitude to have. Well after the day I had yesterday and the day I am having today, I am going to join in saying that cancer really does suck. I mean literally it does. It literally does suck the life out of you. I feel that I am a pretty strong person and I am not going to go through this without a big fight, but there are those moments that you just have to say enough is enough for now.


It all started because on Tuesday I developed a fever. Now when you are a leukemia patient a fever is a HUGE deal! Especially when you have no white blood cells, which is my case right now. A fever means your body has an infection and it has nothing to fight it off. So they try to find the source of the infection so they can treat it accordingly. Meaning lots of blood samples and tests. I have only spiked a fever for a three day period after my first round of chemo, but it went away when treated with all the antibiotics. I lucked out because after my second round I was able to dodge the fever. I thought I could dodge it again after this third round but it has hit me pretty hard. I also developed this major bruise on my left arm, which we thought was just from these neopogen shots they are giving me in my arm daily to stimulate my white cells. But then it started growing larger and the pain is now shooting down my entire arm. It is very painful. So as that was going on they were taking "blood cultures" from the central IV line in my chest to see if it came back with bacteria. Well all three of my lines came back positive for bacteria, so only thing to do is remove it. So here we go with the tests and procedures. I started these at 2pm and didn't return to my room until almost 8pm.



List of doctors orders for me yesterday



1. Receive one unit of platelets.

2. Get an echo cardiogram.

3. Visit with a infectious disease specialist.

4. Visit with a dermatologist.

5. Have a skin biopsy done.

6. Receive a second unit of platelets.

7. Get a Picc line in my arm.

8. Have my Hickman triple lumen removed.

9. Have an MRI done on my arm.

10. Have a CT scan on my chest.

11. Blood Culture



WOW, I don't know about you but to me that was WAY TOO much to do in one day!! Also considering the fact that my white count in zero, so my energy level is also really low. Normal people have 6,000- 10,000 white blood cells to function on and I don't have any. So needless to say I wasn't too excited with the doctors for making me go through all of that at once. By the time I returned to my room I was EXHAUSTED and in a lot of pain. Probably the most pain I have had since I have been here, but it was probably amplified by being upset. So I called for some pain medication. It took them forever and when the nurse came in I was crying my eyes out. They knew I must be in pain because they have never seen me cry before. And to be honest I have never cried like that since I have been in the hospital. I was done!!! My body had had it.



So today has been pretty rough too. Nothing compared to yesterday but my body is just in pain (mostly my left arm). That is why it is taking forever to write this blog because I am using one hand most of the time. I have been needing constant pain medication and have been confined to the bed all day. But here are some pictures of some of the things I got done yesterday. I have to confess they are shot I got off the Internet because I didn't have my camera. But they might just give you a visual if you don't know what some of these things are.

These are blood culture bottles. It is filled a 1/4

of the way with "sugar water" then the rest of

it they fill with my blood. They do these every

24 hours as long as fevers persist.

This is a CT scan machine. I had a chest exam

in this. It only lasted 3 minutes. Not too bad.

This is an echo cardiogram machine.

This is an MRI machine. I had a study done of

my arm. It lasted a little over an hour.

This is a picture of a skin biopsy. They stick a

small needle in your skin to numb the infected

area. Then they cut a core piece of skin out. Then

stitch you back up.

So here is a picture of a Picc line. Like the one they put in my arm yesterday. (I know it is a plastic arm). But that was the best pic of it I could find. So just imagine it in my arm.

But I am really hoping that in the near future I can kick this fever and start feeling good again. But I guess for now pain meds will have to do (says the person who HATES taking medicine). Boy am I having to get over that real quick.

Moving Time.......Again!!!

When I first was admitted back in the hospital July 1st they put me in a double room. They said that there were no private rooms available at the moment so I would probably just be there for a few days until one became available. So knowing that I was going to be moving, my mom and I decided that we shouldn’t hang up any of my things since we would just have to take them down again. Well time went on and almost two weeks later there I was still in room 362. So we just decided to put my stuff up. Well wouldn’t you know it, the day after I put my things up they said I was moving. Isn’t that the way it works.

But now I am moved just across the hall in room 363. So this will be my home hopefully until I leave. It is fun to decorate it and make it like home. I figure if I am going to be here for so long, might as well make it homey. Anyone that knows me knows that it doesn’t take being somewhere very long for me to want to decorate it and make it seem inviting. All the staff on the floor love coming into my room. They say they just want to hang out all day in my room. Party in Room 363!!

I have been so blessed by the amount of love and support that everyone is giving me. Complete strangers who I have never met are sending me cards, gifts and homemade items of love. It is overwhelming the things I have gotten. The nurses joke because almost everyday I get at least one card or package, they say that I must be one loved person. I fell very privileged knowing that a lot of people here don’t get anything.

So here is a huge thanks again for the wonderful acts of kindness of all those people who care enough to think of me. I feel very undeserving, but am grateful for it. My room is much brighter and happier with the help of all the cards and gifts.

Thank

You!!!

This is me in my nice and colorful bed.

I sure do love my IV pole! (:

Here is me being super happy that I am having

a good day in the hospital.

Here is a group of some ladies that are family

friends that came and visited me today (Oh

wait it is now tomorrow. Wow I really should

go to bed).

Goodnight Everyone!!!!

Movies, Junk Food and Platelets

Being in the hospital for so long you have to find ways to entertain yourself. What better way to spend the day then watching movies and stuffing your face with junk food? Well that is what my day has consisted of. Having the great mom that I have, she went to the store and came back with bags full of candy, chips and lots of other unhealthy things to stuff my face. I have to say though, it is killing me being in California for the summer and not being able to eat any fresh fruit or vegetables. But it has been fun to indulge in some good ol' junk food every now and then. So I got to sit and watch some good and some not so good movies today.
Then about half way through the day after checking my blood again they said that my platelets were low and that I needed a transfusion. So I got the "applesauce" pumped into me today (if you don't know what platelets are they are the part of the blood that looks exactly like applesauce). In which has given me a little boost of energy after the drowsiness of the pre-medication wore off. So all in all I guess I can chalk it up to a pretty OK day.

Here we go!!!

So here is my attempt at starting a blog. I have to say I am having a little bit of a hard time figuring this all out. I guess I am not as computer savy as I thought I was. But what I do have is time, so I thought that this might be a good idea to keep myself busy and everyone updated about what is going on with my treatment and journey to recovery.
Just to get everyone up to speed from my last update on Facebook. I am back in the Hospital. I was readmitted on July 1st. I was only able to go home for 3 days instead of a week like I was first told. They were hoping that I would be in remission and that there would be no more Leukemia in my bone marrow, but just as I was packing up to leave the hospital the doctor came in with not such great news. She told me that my bone marrow biopsy came back and that there was 7 percent Leukemia still in my bone marrow. So due to that they have to do more induction Chemotheopy and I would have to come back earlier. So here I am back in the wonderful resort. How long do you have to be in one place before you can say that you have lived there? Well I think that whatever it is I am getting darn close to being able to call this home. Pretty much every doctor and nurse knows me by name and always says "Hi Lyndsay" when I pass them while walking the floor.
As for now I have finished my chemo treatment last Sunday and am now, yet again waiting for my white blood cell count to recover. I will probably be here for another 2-3 weeks before my counts are where I can leave and go home again. They have also told me that I am going to need a bone marrow transplant. So a team is in the process of trying to find me a donor. So please be praying that they are able to find a match for me. Ultimatley that is what is going to save my life. It is crazy out of the 12 million people registered, I only have 8 "potential" donors. I am thankful for that because some don't have any. But it is also possible that after further testing none of those 8 can be a full match for me. It is one of the most complicated processes I have ever read in my life for matching people. I have given up trying to understand it all, but as my bone marrow cordinator has told me, that isn't my job. She says I don't need to worry about understanding everything, that is what their job is for. I guess that is what they went to school for.
So that is the long and short of what has been going on. As for now I am handling this session of chemo a lot better than the other two. I have only had nausea for 2 days which is a lot better than before. I am also able to eat and have an appetite this time, which is great. I am done with any hospital food, just the smell of it makes me want to gag. But thanks to my Grandma making me meals and frozen and packaged foods, I am eating things that actually have taste. You see with my diet I cannot eat any fresh fruits or vegetables and everything I eat from a store had to be packaged with preservatives or processed. That goes against everything I was ever told was healthy before. But there is too much risk in eating anything that might have bacteria because my body no longer has an immune system to fight anything off. So here I am in room 362 waiting for my body to do its thing and recover. Hopefully the next biopsy will give us better news.