I had a doctors check up on Monday. Aside from my fungal pheumonia, optical annurisn, and UTI, everything looks pretty good! My new bone marrow is making awesome white blood cells, and slowely my platelts are coming up. The only thing it's not making is red blood cells and hemeglobin. They said it could take months before it really kicks into gear. So the plan is that next week they will do a chimarism test that will show if I'm 100% donor or if some of me is still there, because if some of me is still there, the leukimia is still there. If it's not 100% then they will quickly take me off my immune suppression drugs in hopes that if turned loose my new white cells will go and kill everything! We should know the results in about 2 weeks. Sure, I have nothing to do but worry for 2 weeks. No problem!
The doctor also told me to go home and try to start getting back into normal life, so long as I'm careful to sanitize everything I touch and I get my butt back to Hunstman at the first signs of an infection. So terrified, I left my safety bubble. Since the first of May I have been banished to one room where nurses and doctors come in and out all day long to alter medications, or give me something good if I needed to calm down :) And now, that's been replaced with dirty loveable little boys, going to the store, the park, everywhere normal people go, right? What I don't think the doctor understands is that it will never be normal again. My family will never have that peace of mind that tomorrow we will all still be here. Mom can't do much more than lay on the couch and snuggle (which is wonderful) We don't have a house of our own, or any income to speak of. Everywhere I go I am the bald girl with the mask on....totally normal, right? This bomb shell of Leukemia hit right when we were planning the best time of our lives. We had been poor students for 9 years and finally my husband graduated with his Pharm D. We were supposed to buy a house in a good neigborhood with good schools. We were supposed to have another baby. We were supposed to be a happy normal family. Not one bit of our current life reflects that plan. Marc promises me that someday we will get it. Someday. Until then I am just happy to be able to lie on my couch with my family around me and try not to think of tomorrow.
Tuesday, August 28, 2012
Wednesday, August 22, 2012
Decision
well, I've got a difficult decision to make. My doctor told me that I could go home back to Brigham as long as I promise that if there's anything weird or different I have to be willing to drive to SLC. Driving to SLC everyday would still be cheaper than the hotel here. so we said no problem there! So now I have to make a decision. It would be very helpful if I went home because my mom goes back to work next week and my kids start school. We are having a hard time finding someone that can watch the boys in the morning and take them to school. If Marc and I can home, we could do it! The problem is I would be exposed to children coming home from a grade school. Plus all the people that come to my parents house. Of course we are good at washing hands and me wearing a mask, but It's still risky. Here at the hotel I'm miserable and lonely, but I feel safer. I can control this envirnment. We are going to wait until after my next check up on Monday before making a decision. They will be doing a cat scan to see if my fungal pneumonia is getting better. Because getting another infection on top of that would not be good! It would also be nice to see if my numbers are holding steady or even improving. I already saw the eye doctor and he said the hemmorage in my right eye is healing well, even though I still can't see out of it!
I just realized that I never told you about my horrendous nose bleed! They did a biopsy of my nasal canal. They had to put me out for it because I have a deviated septum and It would be too painful to be awake,. They were just making sure the fungus hadn't moved to my head, everything came out good there! Well, they got me back to my room as I was waking up and my nose started to bleed, like a faucet was turned on. Marc my nurse and I spent 12 hours shoving gaus up my nose, and changing it when it was drenched. After a few hours I had lost so much blood that they gave me a blood transfusion!! I was so glad when that thing finally stopped!
As for how Im doing, I'm getting stronger every day! I can walk from the car all the way up to my doctors clinic without running out of breath! I still have to ride in a wheel chair if theres alot of walking. Tonight Marc took me to the new mall down town. I felt pretty awesome in my wheel chair with my big blue mask on! Oh well, I'll never see then again anyway....hopefully!
Please pardon any misspelled words or mistakes, I am typing this with 1 good eye!
I just realized that I never told you about my horrendous nose bleed! They did a biopsy of my nasal canal. They had to put me out for it because I have a deviated septum and It would be too painful to be awake,. They were just making sure the fungus hadn't moved to my head, everything came out good there! Well, they got me back to my room as I was waking up and my nose started to bleed, like a faucet was turned on. Marc my nurse and I spent 12 hours shoving gaus up my nose, and changing it when it was drenched. After a few hours I had lost so much blood that they gave me a blood transfusion!! I was so glad when that thing finally stopped!
As for how Im doing, I'm getting stronger every day! I can walk from the car all the way up to my doctors clinic without running out of breath! I still have to ride in a wheel chair if theres alot of walking. Tonight Marc took me to the new mall down town. I felt pretty awesome in my wheel chair with my big blue mask on! Oh well, I'll never see then again anyway....hopefully!
Please pardon any misspelled words or mistakes, I am typing this with 1 good eye!
Sunday, August 19, 2012
Out of the hospital!
Sorry I haven't updated in a while, the internet at my hotel is terrible! I got out of the hospital last Tuesday, just in time for Conners Birthday! I'm so glad I got to be there! Staying in the Hotel is ok, but I wish I could go home. The boys have spent the last 2 days with us, but they are going home tomorrow for back to school night and the rodeo! Once school starts it will be even harder because they will only be able to stay with me on the weekends. The Doctor said that after 30 here if I'm
doing really well they might let me go home, since Brigham City is just 20 miles outside there zone. I had my first checkup on Friday and while I was waiting for my labs I was in tears because I was so scarred I had lost my graft! When the results came in my ANC was 3500, which is much higher than they expecded. I was so releaved! I have another appointment on Monday, they are really watching me closely right now. I have to take my temp every 4 hours and if it gets above 100.4 they will admit me. Everytime I take it and it's a good temp I feel like I got a "pass jail card"! As for how I'm feeling i am so tired!!I can barely walk from my bedroom to the kitchen. The doctor said that will slowly improve, but it usually takes a year before you feel really good. I really hope I can avoid infectioins and stay out of the hospital! Life on the outside is much better :)
doing really well they might let me go home, since Brigham City is just 20 miles outside there zone. I had my first checkup on Friday and while I was waiting for my labs I was in tears because I was so scarred I had lost my graft! When the results came in my ANC was 3500, which is much higher than they expecded. I was so releaved! I have another appointment on Monday, they are really watching me closely right now. I have to take my temp every 4 hours and if it gets above 100.4 they will admit me. Everytime I take it and it's a good temp I feel like I got a "pass jail card"! As for how I'm feeling i am so tired!!I can barely walk from my bedroom to the kitchen. The doctor said that will slowly improve, but it usually takes a year before you feel really good. I really hope I can avoid infectioins and stay out of the hospital! Life on the outside is much better :)
Sunday, August 12, 2012
Today is day 16 and I am showing signs of grafting!! My ANC (absolute neutraphil count) came back at 832. The doctor said that if my numbers remain high over the weekend, I could be released from the hospital on Tuesday!! The only other thing that could prevent this from happening is if I got an infection before then. I'm very excited about the idea of having my freedom back. Once I am out, I will still have to be very careful about germs because I will be on strong immunosuppressents (this means my immune system will be somewhat neutralized in order to stop the new bone marrow from being rejected). I will be gradually weaned off of the immunosuppressents over the next two months or so and while that is happening, I will need to live close to the hospital. If something happens and I can get to the hospital within 1/2 hour to 45 minutes, there is a good chance they will be able to deal with it. If it is longer than that, the chances of survival drop dramatically. Because my boys will be going to school in Brigham City and I will be in SLC for a while, I will probably only be able to see them on weekends. It will be hard not to see them every day, but it will be much better than now. At least we'll be able to have sleepovers, go to the park, etc. whereas, right now, all I can do is visit with them for a few minutes in the lobby once a week.
Thursday, August 9, 2012
Day 14
Today is day 14.
I was awakened by my nurse excitedly exclaiming that she had my labs. She handed them to me and there was a big circle drawn on the paper where it showed that my Neutrophils are at 221! I jumped out of bed and we hugged and danced. The Doctors dont consider it a full graft until your ANC is at 500 and holds steady there for three days. I am so excited to have a second chance at life. I know I am nowhere near the end, I still have to worry about infection and graft verses host disease. But hopefully things can start to get a litle more normal in our lives. Speaking of normal, the doctors found some mold spores on my lungs. The medicine they use to treat them causes hallunications. I'm just glade the Doctors warned me before hand. I might have freeked out when I saw thirty frogs jumping across the bathroom floor, or ivy growing on the side of my nurses face. Last night there was a Yetti peeking through the window over Marcs shoulder ready to kill. At first I screamed then my Mom screamed, Marc jumped up and it ws gone. The hallucinations arent really scarey they actually make life more interesting. Who knows maybe tomorrow Matthew Maconaughey will stop by. I sure hope I packed my wig. Some of the other things I have been experiencing this week are blindness in my right eye due to a blood clot. A gusher nose bleed that lasted for nearly 12 hours all due to a nasal cavity biopsy. Water retention that has made me look like a puff ball. And hair loss for the third time. I'm SMOKIN HOT.
I was awakened by my nurse excitedly exclaiming that she had my labs. She handed them to me and there was a big circle drawn on the paper where it showed that my Neutrophils are at 221! I jumped out of bed and we hugged and danced. The Doctors dont consider it a full graft until your ANC is at 500 and holds steady there for three days. I am so excited to have a second chance at life. I know I am nowhere near the end, I still have to worry about infection and graft verses host disease. But hopefully things can start to get a litle more normal in our lives. Speaking of normal, the doctors found some mold spores on my lungs. The medicine they use to treat them causes hallunications. I'm just glade the Doctors warned me before hand. I might have freeked out when I saw thirty frogs jumping across the bathroom floor, or ivy growing on the side of my nurses face. Last night there was a Yetti peeking through the window over Marcs shoulder ready to kill. At first I screamed then my Mom screamed, Marc jumped up and it ws gone. The hallucinations arent really scarey they actually make life more interesting. Who knows maybe tomorrow Matthew Maconaughey will stop by. I sure hope I packed my wig. Some of the other things I have been experiencing this week are blindness in my right eye due to a blood clot. A gusher nose bleed that lasted for nearly 12 hours all due to a nasal cavity biopsy. Water retention that has made me look like a puff ball. And hair loss for the third time. I'm SMOKIN HOT.
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