Feb 21

I'm home!!! As soon as I got my blood counts this morning and realized that they might be high enough for me to go home, I had my nurse leave a message for my doctor. She was nice enough to come up and discharge me at about 9:15am. She usually doesn't come until after noon, so she must have known how desperately I wanted to go home. As soon as I called Deb she came down and we left the hospital at about 10:30. Wow, it sure feels good to be home. This is the half-way point for my hospital stays anyway, I have two more to go and they will probably both be at City of Hope Hospital. I feel pretty tired today and I haven't done much, just a few things around the house tired me out. I have an appointment at Kaiser Sunset to meet with the bone marrow doctor on March 6th, so I won't have any details until then. I have an appointment with my doctor this Friday and they will make sure my counts are still going up. I am still on the low-bacteria diet until they are back to normal. Like the last time I was home, I probably won't write every day until I go back in the hospital again. God bless you all and please keep praying!
IN HIS HANDS,
Ernie

Feb 20

My counts weren't high enough to go home today. The blood test they did this morning didn't turn out right so they drew more blood later in the morning. When the doctor saw those results she didn't think they were valid either so she ordered more blood at 2:30pm. The results of that test were higher, just not high enough, but the doctor is pretty sure they'll be high enough tomorrow for me to go home. My regular doctor comes back from vacation tomorrow so who knows what will happen. It's frustrating to have to keep staying here when I could possibly have gone home, but I want them to be cautious and do the right thing, and the doctors do this every day. Maybe tomorrow. WAITING
IN HIS HANDS,
Ernie

Feb 19

Another doctor came by today (mine is on vacation) and said that I should be able to go home on Wednesday. This was disappointing because on Sunday the doctor told me I could go home on Tuesday. When today's doctor saw that I was disappointed, she said let's just see what happens tomorrow. I think this might be the hardest time in the hospital when it's a day to day decision for when I go home! I really want to go home too, but here I am WAITING again! LOL! I still feel very blessed. There is a man who keeps calling the nurses very loudly every few seconds for 5 minutes at a time and he sounds like he is hurting or needs something very badly. I don't know about this particular man but the nurses say that they get people in here with dementia who don't really know that they are yelling. I still feel sorry for them. Do you know who I really feel sorry for? I feel sorry for the children and their families who get cancer or some other debilitating disease. It must be very frightening for them to go thru all they must go thru. It just came to me that when we think of people like that who get cancer or whatever that because it doesn't affect us directly we just kind of blow it off and forget them after we walk away from them. We sometimes have the attitude that it will never happen to us, or we don't want to even think about it because we know that it can happen to us and we don't want to think about all the bad things that will occur if it does. I remember the first week when I was diagnosed, it was a tough week. It was really sobering when I was told that I had leukemia, I almost felt like it had to be a mistake, like they got names mixed up and I would get a call the next day to tell me that everything was OK. It makes me want to do something to try to make people feel better when they go thru this stuff, but I don't know what that would be. Maybe I'll think about that!
IN HIS HANDS,
Ernie

Feb 18

Late Saturday night I was all set to go home in the morning but I got fever, chills and nightsweats. My joints and my teeth and gums were hurting and I had a lot of trouble sleeping. I had to have blood cultures taken from my arm and my catheter, a urine sample, and a chest x-ray. The doctor that saw me this morning said that it would probably be Tuesday when I can go home now. He gave me antibiotics and will continue them every 8 hours until I go home. Today I haven't felt well, I've had headaches, my body hurts and my teeth and gums are hurting again. // I didn't have any recurrence of the chills, nightsweats or fever tonight so I hope it's over for this time. Maybe I can go home tomorrow.

Feb 17

The doctor that came to see me today said that he wanted to keep me one more day to check on my eye and my counts. He said that I'll be able to go home early tomorrow. Hopefully! Waiting again!
IN HIS HANDS,
Ernie

Feb 16

They had to stick me again this morning because my Hickman catheter still isn't working and I'm starting to bruise. It really doesn't hurt much so it's not that big of a deal and there are many places they can draw from. The doctor that saw me today said that maybe I can go home tomorrow so that is good news. I'm pretty sure I'll be going home sooner this time than last time, which was 4 weeks. Sunday will be my 21st day this time. They had to give me some more hydrocortizone today because my eye was still swollen, hopefully it will be completely down by tomorrow. Deb has been spending a lot of time with me, in fact most of the time and what a great help it is to have her here. Deb and I are not only married but we're best friends as well and as her sister Sue pointed out a few days ago, this illness has allowed us to be together much, much more, and we're still getting along great! LOL! The thought of dying still comes up in my mind, but I try to push it out and think thoughts of living for a lot more years, and Deb helps me with that. She's always been an optimist and I've been more of a pessimist.
IN HIS HANDS,
Ernie

Feb 15

I should have put this on yesterday's journal but I was pretty tired and didn't want to go back and put it in. Late last night they gave me a blood transfusion and the blood didn't get here til about 11pm, so I didn't sleep well cause they have to monitor my vitals much more often while they transfuse. This morning my platelettes were low so they are giving me a platelette transfusion today sometime. The platelette transfusion is easier because it only takes about 30 minutes. The red blood transfusion takes about 5 to 6 hours. My doctor said today that she thinks I'll be able to go home over the weekend so I hope she's right. // I got my platelette transfusion at about 5pm and soon afterward got an allergic reaction. My left eye got so swollen I couldn't open it, so they gave me steroids and now (10pm) it's just about normal. God bless.
IN HIS HANDS,
Ernie

Feb 14

My counts went down again today but not enough for a transfusion. They drew more blood at 3:30pm but the nurse came in at about 5pm and drew it again because the lab said the first one she did wasn't good. My doctor said she thinks I should be able to go home by Monday and possibly sooner, but not today. Debby and I are celebrating Valentine's day by having Deb go and get Tommy's for dinner, pretty romantic, huh? I'm still on the low bacteria diet so I can't have fresh fruit or vegetables but I still get the chili!

Feb 13

Nothing much to say today, my counts dropped a little more but not enough for a transfusion.

Feb 12

This morning they had trouble getting blood from my Hickman catheter and the nurse said that sometimes happens when my counts get low. My doctor came in and said that I couldn't go home until my counts went back up so I'll probably be in here another week at least, maybe two. The last session it took 4 weeks to come back up so it's probably going to be about the same amount of time. Oh well, things could be worse. It might get to the point where they have to stick me to draw my blood, but they're only doing it once a day this time.
IN HIS HANDS,
Ernie

Feb 11

My counts were down today, my white counts so low they put me on the low-microbial diet, and my platelettes were so low they gave me a transfusion. I still haven't had fevers though which is what my doctor seems to be the most worried about. I had a restful day (I have them every day! LOL), and watched some sports on TV.

Feb 10

Here is my tentative schedule. When I get out of the hospital this time I will meet with the bone marrow transplant doctor to see when they want me to go thru the rest of my procedures. Whenever they want me back in the hospital (it will probably be 2 to 3 weeks after I get out this time) I will go thru a session of chemo exactly like I went thru this time. One day on, one day off, on, off, and one final day on so I would have 3 days of chemo consisting of two bags per day twelve hours apart and one day in between each day. Hope that makes sense. That session will probably be at City Of Hope unless they don't have any beds available when I need to go in. If not I'll go to Kaiser Panorama again. When my white counts begin to come up on that session they will harvest my stem cells to insert back in at the time of my bone marrow transplant. The way they harvest and then put them back in is they put a needle in my arm that's hooked up to a machine that actually takes out the stem cells and then lets the flow of blood go back into my body thru my Hickman catheter. My doctor wasn't sure what size Hickman they put in so if I don't have the large one in me now, they'll have to take mine out and put the large one in. This would mean another surgery so let's pray that they put the large one in initially. I'll ask my doctor to check on what size they put in already. My next hospital stay for a chemo session (the one to harvest the stem cells) will last 3 to 4 weeks and the bone marrow transplant session (definitely done at City of Hope) will be one month. That's what I know of my upcoming schedule. Deb and I are talking about taking a short vacation when I get out this time. It will probably be just a few days but we both need to get away and we're probably going to go somewhere by the beach (we both love the ocean) just to relax and try to forget life for a while. So that's the definite plan, unless things change, of course! LOL! IN HIS HANDS,
Ernie

Feb 9

I did it. I asked/begged my doctor to go home today...... and she just laughed and said not yet. She still thinks my counts might drop and I'll get fevers, but she did say that on Monday if nothing happens til then I might be able to go home. She said, "We'll see". I guess that's that. Oh well, a few more days won't hurt too bad, I've had it pretty good because I haven't had any symptons. Thank you all for your prayers and keep them coming, I still need them.
IN HIS HANDS,
Ernie

Feb 8

My doctor said I couldn't go home today because she thinks I will still be getting fevers. This is day 10, day 1 was the first day of chemo, and from day 10 to day 14 is supposedly when the symptoms normally show up. I think I'm going to try to talk her into letting me go home tomorrow, and if not then on Monday. She only works certain weekends and I'm not sure if she's working this coming one, and if she's not she won't be here to sign me out until Monday. I have been doing pushups and situps in my bed (a little sloppy but possible) so I can keep some strength. I was surprised last time I went home to find that I was weaker than I thought I would be. Even just going upstairs was tiring. It didn't take long for me to get back to feeling better when I exerted myself but I want to be more ready this time. It doesn't take much time for muscles to go away when you don't use them at all, and when you're in bed most of the time you don't use them much. God bless,
Ernie

Feb 7

Waiting. This word has come to mean much more to me lately than it has ever meant in my whole life. Just about everything I am involved in in the last month and a half has involved waiting. I wait for results, I wait for meals, I wait for my doctor to come, I wait for the nurse to come, I just plain wait. I wait in my room all day long for the next day to come, I wait for the next hour to come, I sometimes wait for the next minute to come. I wait for Deb to come back, I wait for the dietician to call, I wait for the sun to go down. I wait. Waiting has in some ways been a curse to me, nothing seems to happen quickly, and I dearly want it too. I want to be done with this disease, and I want to move on and live my life now! Sometimes in life, however, we don't get what we want and we just have to make the best of what comes along. That's what I'm dealing with right now, making the best of my current situation, and waiting. I am learning to be patient in all this, more patient than I have ever been. It's much different than anything else I've done in my life. Usually when problems come along we can actively do things to take care of them. I like to be proactive when I am faced with problems, I want to take action. In this case, however, there is not much I can do except follow the doctor's instructions. I not only cannot be proactive or take action, for the most part I must be inactive and stay in my hospital room and I am very limited to what I can actually do. Even when I was allowed to go home, I was very limited in the things I could actually do, as my blood counts weren't all the way back to normal for a lot of that time. And so I wait, and realize that I am not the only person in the world who has had to go thru this or any situation like it. I think of all the people who have had leukemia, gone thru all the waiting, and have survived. I think of people who have been prisoners of war for years, and have survived. I know for a fact (and many of you may know of some) that there are many, many instances of things that people have gone thru that are much worse than mine, and have survived. And so I wait, knowing that I can do what I must do, but also knowing that I have help. I know that because I have given my life to God, that although I may have to go thru something unpleasant, God will be there for me. God, the One Who created this world, Who keeps it going, is there to help me, Ernie Brady and I feel like I'm the luckiest guy in the whole world.
IN HIS HANDS,
Ernie

Feb 6

Not much happened today, my doctor didn't come by but my counts were still ok. I was applying eye drops every 6 hours to prevent pink eye until last night and that's done.

Feb 5

Boy did I eat too much yesterday, I guess that's what Super Bowl parties are all about! My counts are still good and I had my Hickman catheter dressing changed today. It has to be changed every 7 days at the longest. Deb had two doctor appts today, she was released from her podiatrist and got 30 more days off from the Kaiser doctor to cope with my illness. My doctor told me that I would possibly be able to go home in one week, but she's not sure yet, she has to keep an eye on me for a while.

Feb 4

I finished my last chemo bag last night and don't feel too bad. My teeth and gums are a little sore, which happened last time and my chest seems a little sore but other than that I feel good. The room they put me in last night has a decent view. They have metal plates that deflect the sun in the morning so the room doesn't get hot, but they are like slats and I can see thru the 5 inch gaps between them. It looks like a beautiful Super Bowl Sunday out there and I wish I were at home, but the sooner I get thru all this the sooner I'll be done with it all. //Deb came down with Chinese food for lunch and for the game she brought candy, cookies, celery & peanut butter, and the onion rolls. The onion rolls are made by taking green onions and ham slices. You spread Philadelphia cream cheese on the ham and roll it around the onion and eat it, mmm good! Needless to say we didn't go hungry! Talk to you tomorrow!

Feb 3

It's Sat and the last day of my chemo. I have one bag dripping now and will get another one at 10pm tonight and then we just watch my counts go down and back up again. Tomorrow is the Super Bowl and Deb and I are going to watch it together. She is going to fix some snacks but we don't know what I can have yet, we have to wait for tomorrow's blood counts to see if I can have certain foods. I did fine with the bag of chemo this morning and feel good. It sounded like my doctor thought that I might get out a little sooner this time than last time (4 weeks). I sure hope so, "Ernies Angels" are planning on being part of the school chapel on Mar 2nd, so I'd really like to go see it and meet the kids. This whole experience has made me think about life, and the way I would have like to live it. I wish now that I would have made certain decisions much differently, but I guess that's just a part of who I am. Knowing that God has forgiven me for the things I've done wrong is so comforting I can't begin to describe it, it has brought a great peace to my life because God doesn't go back on His promises. If any of you out there would like to be forgiven, please go back to my journal on Jan 5th and read thru Jan 10th. No matter what you've done in your life, God will forgive you, and if you're one of those people who think they don't sin as much as most people so they think they'll get to heaven because of it because they're not that bad and have done good things in their life, it's even more important that you read Jan 5th thru Jan 10th!!! At about 8:30pm they came and said we are moving rooms to a private room in a few minutes. This is good for them because I have been in a room with two beds and now they can put two people in it. With my certain chemo I have had to be in reverse isolation so I couldn't be roomed with anyone else. It's not so good for us because Deb now has to sleep in the chair/bed again and not in a regular bed. Oh well, God is still taking good care of us! God bless you all!
IN HIS HANDS,
Ernie

Feb 2

I had another good night's sleep aside from the necessary visits from the nurses. I finished yesterday's second dose of chemo at about 12:30 this morning and I feel good except for some constipation and they said they would take care of that. Deb is having breakfast with friends and family so she'll be down a little later in the day. My counts are all still normal but they aren't expected to drop drastically for a while. My Hickman catheter is still working well, they have been able to draw blood from it so I don't have to get stuck every time they need blood. The last two weeks of my last stay they weren't able to draw blood from it, but this last Mon when I came back they put something in it to disolve the clotting and it's been working well every since. Another small victory!!! LOL!!! I wanted to thank you all out there again who have been praying for me, especially "ERNIE'S ANGELS" at Desert Christian School. Having a 5th grade class take me on as a mission project is totally awesome and I am really honored that they would do that for me!!! Those of you who pray I know it's not easy sometimes, life happens and we don't find the time to pray, I do it myself. It makes you feel different about it when you're on the receiving end so thank you, thank you, thank you!!! My constipation is gone now!!! I have an appointment with the bone marrow transplant doctor on March 6th to find out what we have to do and what is involved. My transplant will be done at City of Hope Hospital and possibly my next round of chemo too. My brother and sisters will be tested as possible donors but they will try to use my own marrow first. The best chance for a match is with your siblings, even better than with your own kids. There is a period of about 3 or 4 months after the transplant when I will be susceptable to infection and will have to be watched very carefully, so I will be confined to the house for a while.

Feb 1

I asked for something to help me sleep last night and I got a great night's sleep. I have to qualify that by saying that the nurses were in doing something or other every two hours or so, but otherwise I slept great, until almost 8am! After breakfast, which is usually at 8:30am they began getting my pre-meds ready for the two chemo bags today. They only give pre-meds once a day so at night they just give the chemo. The morning bag didn't affect me but I still have one more bag to go today. I know a lot of prayers are being answered for me because my symptoms have been very minimal! Deb left about 4pm so I think I'll watch a movie on the laptop. The movies seem to pass the time really well, like mindless entertainment. GOD IS GOOD, ALL THE TIME, ALL THE TIME, GOD IS GOOD!!!
IN HIS HANDS,
Ernie