Sorry I didn't update yesterday, but the internet was down in the hospital until this morning. I don't think I can get it all in chronological order, but here's the scoop:
We arrived at the hospital around 9:00 yesterday morning. About 10:30, we were taken down to the Radiology department to have them insert the PICC line. After being down there for about 10 minutes, they told us that they were not going to do it down there, and then took us up to my room. I have a nice suite. It is much larger than most hospital rooms. It has a fold-out couch (and according to Rob, it's VERY UNCOMFORTABLE), an arm chair, large bathroom, 2 TV's and a DVD player. We also have a great view of seeing the helicopters taking off and some restaurants and streets.
While waiting for them to come get me the lab tech came in. She had to take blood. I told her I thought that was the point of the PICC line so I wouldn't have to be stuck anymore. She said they had to take blood before they could do the PICC line. She filled up 4 tubes. Well, around 1:00 pm, they came and got me for my PICC line. I was waiting for my lunch to arrive so I wasn't real thrilled
that they came to get me before that, but you just kind of have to go with the flow. They took me down to the radiology department (different one) and got me ready to go. They did the ultrasound on my arm to locate a vein and she showed me how they open and close. It was really cool. After waiting around for awhile, the PA came in and said he was ready to go. The worst part of it was the shot they gave me to numb it. After it was numb, they took off and put it in. I could see my chest ultrasound on the TV monitor in front of me and saw them slide in the line to my heart. It was so neat to see. They stitched me up and I was sent back up to the room. My lunch still wasn't there. I asked my nurse and she said she would check on it. We waited and my stomach growled.
About 4:30 pm, the nurse came in and said they were going to start my medication. They started me out with Mesna which was a coating medication. It basically works to coat my organs to protect them from the chemo. At about 5:30, they came in and started the chemo. It is called Cytoxin. They run it with the Mesna and it runs about 3-4 hours. The Mesna runs 24 hours a day. They also put in some medication using a syringe, but I'm not sure what that was. They also brought me 19 pills to take. Again, this is funny because I can only swallow one pill at a time. I was one of those kids that couldn't swallow a pill until high school, and sometimes they still get stuck. One of the pills was about the size of my thumb too! Oh, and I was STILL STARVING!!
FINALLY, my nurse rescued a cheeseburger and fries from downstairs for me. I ate it and about 30 minutes later, dinner showed up. It was funny, but I was so hungry that I ate it too. It wasn't to shabby for hospital food.
The nurse came in and went over some guidelines for visitors and things. I am considered "Neutropathic". This means that I am very prone to infection because my white blood count is so low. So, anyone who comes to visit must wash their hands upon entering my room, if they have any type of illness (even allergies) they are asked to wear a mask or not come visit until they have been clear for 48 hours, no plants or flowers in my room because of the chemicals that are used on them, I have to wear a mask whenever I am out of my room, my door has to stay shut to keep germs out, and I can't eat any fresh fruits or vegetables.
About 8:00 pm my doctor came in to check on me. She said that the rest of my tests looked good. Not really sure what "good" means, but she wasn't concerned with anything on them, so that made us happy. She also said she was glad that my white blood count is not dropping the way that it normally would. It has slowed down which is already an answer to prayer. It was dropping about .5/week and this past week it only dropped .1. A normal WBC is 4.0-11.0 and mine yesterday was 1.9. She told me that we were going to do the lumbar puncture around 7:30 this morning. I told her I don't do mornings, and she said she usually does them around 5:30 am, so I told her 7:30 would be just fine!
I finally got my last pills around 10:30 last night and was able to go to bed. Of course, it couldn't go simply. About the time I finally fell asleep, my IV pump started beeping. My dosage was over so we had to call the nurse in to come fix it. She did and back to sleep we go. About the time I fell asleep again, the other IV pump started beeping (yes I have 2 pumps going at once- 3 bags going at once). Again, we had to call the nurse. Only this time it was me. I had fallen asleep on the IV tube and had folded it so the chemo couldn't get through...oops! Finally, I think we are going to get some sleep. Not quite...at 3:45 am, the nurse came in and said she needed to get some blood from me. This is where I LOVE my PICC line. She just hooked up to that and took it out. I couldn't even feel it. She took out about 4 syringes full. She left and I close my eyes. About 4:00 am, she came back and said she needed more. She had to fill up 26 of those tubes. I'm not sure what they needed 26 tubes for, but they got it. I thought surely that was it for the night, but I was wrong. About 10 minutes later, they came in and asked me the lovely question of about how many times I had gone to the bathroom...REALLY??? They couldn't wait until like 6:00??? We never went back to sleep.
Well, around 7:30, Dr. Lee came in and sent Rob away. He wasn't allowed to stay during the lumbar puncture, so he decided to go do a local job in town. She got me all set up and started the procedure. It wasn't as bad as I thought it was going to be, but I still think it was worse than the bone marrow procedure. She got the needle in but no fluid would come out, so they had to do it again between two other disks. She evidently hit a nerve in there because my left leg spasmed. She drew out the fluid and said it was clear so that is good. She then changed out the syringe (using the same needle) and inserted chemo directly into my spine. I asked her if this was just a one time chemo, and she said no that I would have to get it every time I was in the hospital, so I will have to have lumbar punctures every 3 weeks...ugh!! I had to lay flat on my back for 4 hours after the procedure. I fell asleep for awhile, but then the nurse came in and had me take 19 pills again. I had to sit up to take these and that made me get a headache. I also couldn't get out of the bed, and after drinking the 2 glasses of water to get all the pills down, it wasn't exactly a fun couple of hours to wait. I couldn't go back to sleep after she woke me up. They came in and gave me a shot of Demerol for my headache and that helped a little bit. I had to have another one later and I still have a small headache.
Just a quick side note. I just want everyone to know how great of a husband I have. He has stood by me through all of this and has been there for every ache and pain I have had. He rubbed my head today to help get rid of my headache even though he was exhausted himself. He has fetched me water and helped me hike my IV pole to the bathroom about 1,000 times- even in the middle of the night. He is the spiritual leader in our home and someone I am so thankful to have in my life.
That's pretty much the scoop for the past two days. Thank you again for all of your prayers and support. In this process, we have come across some other people who are also in need of prayer, so if you don't mind, when you pray for me, can you also mention these people:
James (knot in neck, needle biopsy did not reveal anything so they will have to surgically remove it)
Marty (the Chaplin at the hospital's sister diagnosed last week with breast cancer)
Sullivan Farrar (leukemia)
http://www.sullivanfarrar.com/With God, WE WILL BEAT THIS!!
I spoke to my sister-in-law sometime Wednesday afternoon. She was calling to check on me and then she told me she wanted to tell me something. (just a little background- when she first starting dating my brother, she was in a bad car accident and hurt her back. She had to have back surgery and wear a brace). Well, she told me that while she was in the hospital, her dad said a very specific prayer for her. He prayed that God would take away her back pain and give it to him. From that day on, her back didn't hurt, but her dad's did. She told me she knew it would work, but she was scared to pray it for me, but on Tuesday night, she prayed that God would give her my nausea and upset stomach so that I could have a good day. On Wednesday, I was fine. I kept all my food down. When talking to her, I found out that she was sick all night Tuesday and Wednesday. What a sacrifice!!
morning to have her lumbar puncture done. While she was there, she was admitted into the hospital. She was admitted for dehydration, her red blood count was .8, but the platelets were good enough to perform the spinal tap. She got checked into her room and was given her spinal puncture. Around 3pm she was given her first pint of blood. The blood that was given to her had to be treated with radiation prior to her receiving it. She is currently taking her 2nd bag. Let's hope that is all she needs. We do not know when she will be going home, but we are anticipating tomorrow sometime.
that they came to get me before that, but you just kind of have to go with the flow. They took me down to the radiology department (different one) and got me ready to go. They did the ultrasound on my arm to locate a vein and she showed me how they open and close. It was really cool. After waiting around for awhile, the PA came in and said he was ready to go. The worst part of it was the shot they gave me to numb it. After it was numb, they took off and put it in. I could see my chest ultrasound on the TV monitor in front of me and saw them slide in the line to my heart. It was so neat to see. They stitched me up and I was sent back up to the room. My lunch still wasn't there. I asked my nurse and she said she would check on it. We waited and my stomach growled.
The nurse came in and went over some guidelines for visitors and things. I am considered "Neutropathic". This means that I am very prone to infection because my white blood count is so low. So, anyone who comes to visit must wash their hands upon entering my room, if they have any type of illness (even allergies) they are asked to wear a mask or not come visit until they have been clear for 48 hours, no plants or flowers in my room because of the chemicals that are used on them, I have to wear a mask whenever I am out of my room, my door has to stay shut to keep germs out, and I can't eat any fresh fruits or vegetables.
I finally got my last pills around 10:30 last night and was able to go to bed. Of course, it couldn't go simply. About the time I finally fell asleep, my IV pump started beeping. My dosage was over so we had to call the nurse in to come fix it. She did and back to sleep we go. About the time I fell asleep again, the other IV pump started beeping (yes I have 2 pumps going at once- 3 bags going at once). Again, we had to call the nurse. Only this time it was me. I had fallen asleep on the IV tube and had folded it so the chemo couldn't get through...oops! Finally, I think we are going to get some sleep. Not quite...at 3:45 am, the nurse came in and said she needed to get some blood from me. This is where I LOVE my PICC line. She just hooked up to that and took it out. I couldn't even feel it. She took out about 4 syringes full. She left and I close my eyes. About 4:00 am, she came back and said she needed more. She had to fill up 26 of those tubes. I'm not sure what they needed 26 tubes for, but they got it. I thought surely that was it for the night, but I was wrong. About 10 minutes later, they came in and asked me the lovely question of about how many times I had gone to the bathroom...REALLY??? They couldn't wait until like 6:00??? We never went back to sleep.
