Friday, August 29, 2008

Cells, cells and some more cells. Oh, and some blood.

Today I had another visit to the infusion center. It was just for a blood draw and I also had to get the dressing on my Picc line changed. I left right after they drew my blood because I also had a appointment to get a bone marrow biopsy today. They called me this morning and said that I was going to have it done my the BMT nurse practitioner because my doctor was unable to do it today. So I went to the clinic and waited like an hour till the procedure because as always times got mixed up. So bring on bone marrow biopsy number 5. I am now pretty used to these biopsy's so I wasn't too anxious about this one, but most of mine have been in the hospital and when you are there they give you lots of drugs before so you don't feel a thing. When you do one outpatient they don't give you anything besides lido cane to numb the area. I am pleased to report though that it wasn't bad at all, actually I didn't feel too much of it. Just pressure on the site. The only thing was that I did bleed out more than normal because my platelet count was a little low.

So even though my platelet count was a little low it still was high enough to not have to get a transfusion. That was good news because that meant I didn't have to stay in the infusion center longer. But get this, my white blood cell count came back 21.9. Wow what a jump! Last weekend my count was at zero. It was a little alarming to me because that is double of what the "normal person's" white count is. My doctor assured me though that it was fine, the high counts are due to the nulastin shot that they gave me the other week. I am just hoping that they are all good cells and are not blasting again.

The past couple nights I haven't gotten to bed until 2 Am. That is partly due to my antibiotic IV not getting done until 11:30 or 12:00. But at night while lying in bed I have been thinking a lot. With such a huge procedure being done in a few weeks and knowing that this is what can save my life, I have just been thinking about all that has happened over these past several months. All that I have gone through to get to this point. It is a lot to mull over, from the week I was sick at my home in Montana while the rest of the school was in Moab to where I am right now. Thinking of the miracles that God has performed during this process. Also thinking about the hard times when my faith was tested and I feel like I failed. There is one thing that I can't deny though, that God is a truly amazing Creator. That really became real to me as I was getting my blood drawn today. I mean how often do we really think how complicated blood is? I know that I never really put too much thought into it before. I knew that we needed it to live and to function, but do we really realize how intricate it is. You can find out so much just from a blood sample. It has so many components to it. After they process my blood they give me 2 pages of chemistry results. Some I understand and some I don't. They are able to tell me my potassium level, magnesium, white count, red count, platelets, hemoglobin, glucose and the list goes on and on and on. I mean how can anyone not think that there is a creator behind this. All of my time spent in hospital I have learned so much about the human body and how we function. It is truly amazing how everything works perfectly together and how we can still function when we have a zero white count and a very low count on many other levels. Wow what a amazing God we have!

Well we are approaching Labor Day weekend. Can anyone believe that we are now heading into September already? Christmas will be here before we know it. Actually my mom and I were in a store the other day and they already had out some Christmas decorations. I was shocked, that is a little too soon I think. But I am really going to try to enjoy this weekend at home, because come Tuesday I have to be either at the Hospital, Clinic, or Infusion Center EVERY day until transplant. Some visits will be shorter than others, but it still cuts into your day when you have appointments to go to. So I hope that everyone enjoys their Labor Day weekend, as I am going to!!

Monday, August 25, 2008

The Calender is in

Things have been busy and don't look like they are going to slow down any time soon. My visit to the infusion center on Friday revealed that I needed 2 blood transfusions and platelets. Since my appointment wasn't until 3:30 it was too late to put the order in to get it that day. So they said I had to come back Saturday to get those things. Now from experience I know that 1 bag of blood takes at least 2 hrs and platelets take about 45 minutes to infuse. So that means an entire day spent in the infusion center. Usually they just have recliner chairs that you sit in but they gave me a bed this time. I guess they knew that I would be there for a while. So all in all it ended up being 6 hours spent there. I spent most of my time watching movies on my laptop, which made the time go by pretty quick.

Now in an earlier post I revealed that I made a really dumb move while in the hospital and dropped my laptop on the floor. I was hoping that it could be an easy fix. I just haven't had the time to go and see if it is fixable. Then I received a call from a friend of my mom's saying that her husband fixes computers, and they would like to look at mine for me. They even gave me a laptop to use, saying that I could keep it as long as I need one. Well I got the bad news that my computer it toast! So that is a little disappointing but God has provided another one for me to use in the meantime, so that is a blessing.

As for how I have been feeling, things overall have been pretty good. I have had energy and no nausea or vomiting. The only thing I have been experiencing is Saturday night I got this really intense pain in my back and hips. So intense that it was really hard for me even to walk, so sleeping was out of the question. I finally broke down and toke some of my pain medication, which I have been trying to avoid because it makes me nauseated. But I just couldn't handle the pain any longer. The pain is still continuing but is lessening. I now have it all over my body though. After thinking about what the cause would be, the only conclusion I came to was that it is bone pain from the extended neupogen type shot I received on Tuesday. Those kind of shots give you pain in your bones, kind of like growing pains from when you were a kid. I have just gotten a severe reaction to it (more pain than the norm.).

So today I saw my primary doctor at clinic. I asked him to prescribe a different pain med. So he gave me a really strong one. I have taken it in the hospital before and boy does it knock you out. So if I can help it I am only going to take it if I can sleep right after. Other than that we just talked about my upcoming bone marrow transplant. They gave me my calender and to say it lightly I am going to be very busy in these next few weeks. Almost every day is filled with something to do either at clinic or the hospital. Also after my appointment my mom and I attended a Bone Marrow Transplant caregiver class. It was more for my mom, who is going to be my caregiver but it benefited me too. I actually have been doing a lot of reading about this and am getting books about it. I really like to know as much as I can about what this is all about. I mean it is my body, I want to know what to expect. But I continue to avoid fevers at home which is great and am moving forward toward the goal!

Tuesday, August 19, 2008

Infusion Center Fun

I have just returned from the Moore's cancer center. This is where my doctor's are and the infusion center, where I get labs drawn several times a week. I haven't spent much time there because most of my time has been in the actual hospital. But if all goes well I will be visiting there more in these next few weeks before transplant because I will be at home. The center can be an all day event though. If I need blood, plateletes, potassium, or magnesium I need to stay to get a transfusion of those. That means several hours there, even after the hour and a half you have to wait to get your blood test results. So it can end up being a very long afternoon. Fortunately for me, today I didn't need anything. I got my blood drawn and then my mom and I went to the little cafe in the center and got lunch there, while we waited for my results. I was pleased, to say the least when the nurse said I was good to go. I know eventually I am going to spend my fair share of time there. I am just glad I got away with it today. The only thing I had to get was a shot. It is kind of like the neupogen shots I was receiving before, but this one is more of a one time thing than an everyday shot. That works for me! It will help my white blood cells to reproduce quicker than my body can produce them on their own.

Since I ended chemo on Saturday I knew that my whites were going to be dropping, and dropping is what they did. My white count was at 8.5 when I left the hospital on Saturday and today it was down to 1.5. So that means I need to start being a lot more careful now. No more eating at restaurants and no more being around crowds of people, till they start coming up again. I definitely don't want an infection, so I am going to be a good girl and try to be super careful. I am excited though because both of my brothers are coming out to visit today. Brandon is also bringing my niece and nephew. I haven't seen them in a few weeks, so it will be so good to see them. It also may be the last time I see them for a while because once I have the transplant I can't be around small children for a long while. When I found out that I was so sad. But it will be good to be able to spend some time with them today.

Saturday, August 16, 2008

Just an Update!

What a time it has been over these past couple weeks. Sorry for the delay in updating the blog but life has sure been busy. Not to mention that my computer is still trying to be fixed. Well last time I updated I had a lot of good news to report and I said that I was going to be able to be home for a while. Well that was the case and I was able to be home for 2 whole weeks!!! We did end up finding an apartment out in San Diego very quickly and "moved in" almost 2 weeks ago. Moving from a house to a small apartment had some adjustments but we are still sorting through things and trying to fit what we can in our new home for the next year. So having to deal with moving as busy as that is, but also throw in all of my doctors appointments and nurses visits, etc. and the days seem to fill up fast.

Also last Wednesday Rob, one of my friends from Montana came out to visit me for a few days. That was so great and so refreshing having a familiar face around and someone that I can talk to from Montana. It was the next best thing to being able to go out there myself. We stayed busy while he was here unpacking, going to Sea World and just hanging out catching up on things. We also had a little bit of a hard time as one of our friends passed away in a car accident on his way out here with Rob. They were driving separate but were caravaning down here to So. Cal together. So we were able to spend some time with Jesse's family and friends and try to offer as much encouragement as we could. So although we were faced with some hard things to deal with we were still able to enjoy time together while I had some freedom from the hospital. Which was what I really needed at this time!!! It was good to have a friend around.

So on Monday I was admitted back in the Hospital for some more Chemotherapy. My donor was unable to move up the date so they had to give me another round to keep me in remission. The good news is that because we live close to the hospital now I am able to come home to recover. So I just arrived home today. I am feeling pretty good, but know that usually it hits me a week or so after chemo. So please be praying that I do well at home and don't have to go back to the hospital.

So the plan now is that my transplant date is set for September 18th. Which is my Dad's birthday and my mom and dad's anniversary. So now we have something else to celebrate on that day. My "new birthday" which they call your transplant day. So I will be admitted back in on Sept. 12th for pre transplant things. I will have to undergo more chemo and total body radiation before I can have my transplant. So needless to say it is going to be a long tough road ahead, but I am glad it is happening as quick as it is. The sooner it can be done the sooner I can be on my way to recovery. So I would appreciate prayers as all of these things are approaching quickly and Lord willing this will end my battle. Recovery is a long haul but just thinking that this could end my leukemia is so exciting to me. Scary knowing the long road ahead but exciting knowing what it could be.