Its me, Andrya, this time. Today was a pretty bad day emotionally. All I want is to get out of this hopsital. My docotors and nurses keep telling me to get up and walk and do the breathing machine and eat. This pisses me off more than anything, because I'm not retarded. I already know this stuff and want to do it, but I just don't have the energy. So then I get chasternized by my husband with the same stuff. I've told them that if they want me doing these things, then they need to stop putting all this junk in my body so I can feel well enough to do.
Dr. McGuirk was extremely annoying about this today. I guess he doesn't like be questioned about his practices. Well too bad, that is my job as a patient to advocate for myself. I don't understand why they have to keep putting chemo into me when all my cells have been delpleted. His response to that is that its only going to get worse before it gets better and I have to have a better attitude. I told him that he was being condescending to me and treating me like a child. He didn't like that. Pretty much the only thing we could see eye to eye on was if I don't get out of bed, I'm going to die of a piss poor attitude while in the bed.
I have asked the last 2 doctors to tell me what it means that it is going to get worse before it gets better. I already felt like crap and am strarting to feel better. If I have to go through that pain and suffereing again, I don't know if I want to do it. I want the doctors to explain the purpose of methotrexate after the bone marrow transplant. Methotrexate is another chemo drug that I have to get every other day. My counts are at 0 where they want them, so I don't see the point of continueing to destroy my body from the inside out.
So Dr. McGuirk set up a consult with the physch department. It was a resident the reviewed what was going on and then his attending came in. Their solution is to put me on Seroquel. Well I for sure am not having that because 1. it is an antiphychotic, which I am not. 2. it is a mood stabilizer. Yes, I am in a bad mood, but I'm dealling with BONE MARROW FAILURE, so it is ok to be in a bad mood! 3. it make you into a zombie - meaning if they thought that I wasn't getting out of bed enough now, I'd never get out of bed on Seroquel. I am absolutely OFFENDED by these quacks that they think this is the best option for me. So all in all I got into arguments with a resident, a Psychiatrist and my BMT doctor and have offending a handful of nurses.. All of which ended up with me just still being mad and wanting to go home.
I know this is not a pleasant post today, but there are going to be bad days. I just want this to be over with and I just want to go home.
Sunday, July 31, 2011
Saturday, July 30, 2011
Day 2 and 3
It's Ryan. AGAIN.
Andrya had her two most difficult days yesterday and today (Friday and Saturday; days 2 and 3). She can't keep any food down and her nausea has been unbearable for her. She has been getting severe motion sickness, which is making it all the worse. Her headaches are still here too, though not as bad as before.
She has also been extra feisty. For the last two days she hasn't gotten out of bed much, hasn't eaten hardly anything and wouldn't talk much either. Getting her to shower has also been a fight. To her credit, she did shower both today and yesterday, but only on her terms, only when she was ready. She still feels like her nurses and myself are condescending to her when we're trying to get her up and about. I guess I can't blame her for being in a bad mood though. She's just falling into a bit of a depression and once there, she won't listen to us and argues everything.
Andrya and I also have been trying to work with her nurses on managing her pain and nausea medications. I think I figured it out today. She was diagnosed the night we had Kellan with a migraine. She lost her peripheral vision for a few hours that night and it really scared us. That was when her doctors made the migraine diagnosis.
Now, I don't know much about migraines, but I know they can cause deep head pains but also nausea sometimes too. The nurses thought that maybe her pain meds were causing her nausea, and two days ago they had switched her medication that she could manually operate as needed from nausea meds to pain meds since the other day she was having such problems with headaches. But then the nausea was intolerable the last two days and the headaches were lingering. They said also they wouldn't give her tylenol, as I wrote about a couple days ago, since they were worried it would cover up a fever caused by infection, which could be deadly for her right now. All we wanted was for her discomfort from both symptoms to be gone.
They had done a C/T scan of her head yesterday morning and it came back normal, so they said that they didn't know why she was having headaches. They assumed it was the chemo running its course and that the pain would go away but said it should have by now. That was when I thought of the migraines and that seemed to "turn the light on" for the nurse. So I was then able to get the nurse to give Andrya tylenol, which is what she wanted all along for her headaches, and they reworked all her nausea and pain meds to what we requested, all this after I spoke with the nurse practitioner and mentioned migraines...and now both have seemed to really subside! I'm pretty proud of myself, if I may say so.
By this evening (Saturday) she was feeling much better. Her headaches (now being treated as migraines) are much more tolerable as is her nausea. She ate soup and held it down, and she even just now asked for and ate the peanut butter cups (peanut buttah cuuups!) I bought her last night. She also got up tonight, showered, and also walked some laps around the ward for the first time in 3 days.
Now if we can just solve her latest side effect of the chemo and get her off the toilet, if you catch my drift...
Andrya had her two most difficult days yesterday and today (Friday and Saturday; days 2 and 3). She can't keep any food down and her nausea has been unbearable for her. She has been getting severe motion sickness, which is making it all the worse. Her headaches are still here too, though not as bad as before.
She has also been extra feisty. For the last two days she hasn't gotten out of bed much, hasn't eaten hardly anything and wouldn't talk much either. Getting her to shower has also been a fight. To her credit, she did shower both today and yesterday, but only on her terms, only when she was ready. She still feels like her nurses and myself are condescending to her when we're trying to get her up and about. I guess I can't blame her for being in a bad mood though. She's just falling into a bit of a depression and once there, she won't listen to us and argues everything.
Andrya and I also have been trying to work with her nurses on managing her pain and nausea medications. I think I figured it out today. She was diagnosed the night we had Kellan with a migraine. She lost her peripheral vision for a few hours that night and it really scared us. That was when her doctors made the migraine diagnosis.
Now, I don't know much about migraines, but I know they can cause deep head pains but also nausea sometimes too. The nurses thought that maybe her pain meds were causing her nausea, and two days ago they had switched her medication that she could manually operate as needed from nausea meds to pain meds since the other day she was having such problems with headaches. But then the nausea was intolerable the last two days and the headaches were lingering. They said also they wouldn't give her tylenol, as I wrote about a couple days ago, since they were worried it would cover up a fever caused by infection, which could be deadly for her right now. All we wanted was for her discomfort from both symptoms to be gone.
They had done a C/T scan of her head yesterday morning and it came back normal, so they said that they didn't know why she was having headaches. They assumed it was the chemo running its course and that the pain would go away but said it should have by now. That was when I thought of the migraines and that seemed to "turn the light on" for the nurse. So I was then able to get the nurse to give Andrya tylenol, which is what she wanted all along for her headaches, and they reworked all her nausea and pain meds to what we requested, all this after I spoke with the nurse practitioner and mentioned migraines...and now both have seemed to really subside! I'm pretty proud of myself, if I may say so.
By this evening (Saturday) she was feeling much better. Her headaches (now being treated as migraines) are much more tolerable as is her nausea. She ate soup and held it down, and she even just now asked for and ate the peanut butter cups (peanut buttah cuuups!) I bought her last night. She also got up tonight, showered, and also walked some laps around the ward for the first time in 3 days.
Now if we can just solve her latest side effect of the chemo and get her off the toilet, if you catch my drift...
Thursday, July 28, 2011
Day 1
Hi, it's Ryan again.
Again, Andrya is not feeling well. Today was the most difficult day for her as far as pain and emotions. I don't think her pain was as bad as it was a few days back but I think emotionally she's just worn out and that is making the pain unbearable. She's feeling like her doctors are not listening to her and she just wants her pain to be gone. Headaches and allover aches like you feel when you have the flu are still bugging her. She is somewhat feverish; mildly so all day. Usually in the 99's.
She wants Tylenol for her pain but they won't give it to her because it masks a fever and if she gets a fever then they need to make sure they catch it because it means she may have an infection. That may not seem like a big deal, but remember: she has no immune system right now and even the slightest little germ can potentially get out of control and kill her since she has no natural way of fighting it. Fortunately they've been taking blood cultures to check for infection and tonight, mercifully, they finally gave her Tylenol. Sweetheart is passed out right now.
Nausea reared its ugly head today too. Lots of stomach cramping, and some vomiting too. She didn't eat much, and what she did earlier this morning and afternoon she lost. She finally got down some soup and held it down about 7pm.
But I think what made today one of the worst was depression. I wouldn't say she's actually "depressed"; that may be too strong a word. But she's definitely down in the dumps. She wouldn't get up, wouldn't do her walking, didn't do her breathing machine (which helps fight pneumonia), and didn't shower. And try as we could, neither the nurses (who are all wonderful, compassionate women) nor I could get her to do them. You know Andrya: if she's decided she won't do it, then she WILL NOT DO IT.
Her head just isn't right right now, understandably. She's overly sensitive right now and thinks we're yelling at her or chastising her for not showering. This combined with thinking her needs aren't being met are making her combative in an attempt to make us listen to her. She says she just wants her pain addressed, but I think what she either doesn't understand or won't accept is that this treatment is just painful. She has to dig deep and find the strength, because this won't be easy. Her nurse said the same thing (easy for us to say, right?) and I only tell her because I love her, but our girl Andrya just isn't having it, bless her heart.
Maybe tomorrow will be better. We'll try again with her doctor to get him to change her pain management regimen, and maybe then we can get back to kicking this chemotherapy right in its ass!
Again, Andrya is not feeling well. Today was the most difficult day for her as far as pain and emotions. I don't think her pain was as bad as it was a few days back but I think emotionally she's just worn out and that is making the pain unbearable. She's feeling like her doctors are not listening to her and she just wants her pain to be gone. Headaches and allover aches like you feel when you have the flu are still bugging her. She is somewhat feverish; mildly so all day. Usually in the 99's.
She wants Tylenol for her pain but they won't give it to her because it masks a fever and if she gets a fever then they need to make sure they catch it because it means she may have an infection. That may not seem like a big deal, but remember: she has no immune system right now and even the slightest little germ can potentially get out of control and kill her since she has no natural way of fighting it. Fortunately they've been taking blood cultures to check for infection and tonight, mercifully, they finally gave her Tylenol. Sweetheart is passed out right now.
Nausea reared its ugly head today too. Lots of stomach cramping, and some vomiting too. She didn't eat much, and what she did earlier this morning and afternoon she lost. She finally got down some soup and held it down about 7pm.
But I think what made today one of the worst was depression. I wouldn't say she's actually "depressed"; that may be too strong a word. But she's definitely down in the dumps. She wouldn't get up, wouldn't do her walking, didn't do her breathing machine (which helps fight pneumonia), and didn't shower. And try as we could, neither the nurses (who are all wonderful, compassionate women) nor I could get her to do them. You know Andrya: if she's decided she won't do it, then she WILL NOT DO IT.
Her head just isn't right right now, understandably. She's overly sensitive right now and thinks we're yelling at her or chastising her for not showering. This combined with thinking her needs aren't being met are making her combative in an attempt to make us listen to her. She says she just wants her pain addressed, but I think what she either doesn't understand or won't accept is that this treatment is just painful. She has to dig deep and find the strength, because this won't be easy. Her nurse said the same thing (easy for us to say, right?) and I only tell her because I love her, but our girl Andrya just isn't having it, bless her heart.
Maybe tomorrow will be better. We'll try again with her doctor to get him to change her pain management regimen, and maybe then we can get back to kicking this chemotherapy right in its ass!
Wednesday, July 27, 2011
Day 0: the first day of the rest of our lives...
Hi it's Ryan again. Andrya wants me to say this before she falls asleep:
"Thank you everyone for all the thoughts, prayers and love sent our way. We are blessed to have so many wonderful people in our lives. Today I got my brother's stem cells/bone marrow transplant. This morning I woke up petrified of the process. I was so scared of pain, and what might happen, the long term side-effects, and I almost didn't do it. But I stayed strong and did it anyway, knowing I had to do it because I have too much life left to live. I didn't get much sleep last night because of fevers and it looks like it may be like that tonight too. My worst pain is having a headache again and body aches and they're trying to control that with morphine and oxycodone; but that only helps minimally. Pain coupled with extreme fatigue makes me feel like I have the worst pain in the world. But I was able to get up, take a shower, and go for a walk here in the ward's hallway which I didn't think I'd get done. I owe that to the motivation of my husband, who is keeping me strong through all of this. I'm really tired now, so I'm signing off. ...oh, and happy anniversary to my husband of nine years!"
"Thank you everyone for all the thoughts, prayers and love sent our way. We are blessed to have so many wonderful people in our lives. Today I got my brother's stem cells/bone marrow transplant. This morning I woke up petrified of the process. I was so scared of pain, and what might happen, the long term side-effects, and I almost didn't do it. But I stayed strong and did it anyway, knowing I had to do it because I have too much life left to live. I didn't get much sleep last night because of fevers and it looks like it may be like that tonight too. My worst pain is having a headache again and body aches and they're trying to control that with morphine and oxycodone; but that only helps minimally. Pain coupled with extreme fatigue makes me feel like I have the worst pain in the world. But I was able to get up, take a shower, and go for a walk here in the ward's hallway which I didn't think I'd get done. I owe that to the motivation of my husband, who is keeping me strong through all of this. I'm really tired now, so I'm signing off. ...oh, and happy anniversary to my husband of nine years!"
Tuesday, July 26, 2011
Day -1, a pretty good day!
So, as the title suggests, today was a good day for Andrya, as we had hoped it would be. And it's Ryan again by the way...I think Andrya just likes that she can get me to do this for her. :)
She was feeling good and in very high spirits; the headaches from yesterday's dose of cytoxin were gone, as were the sore throats. She only just in the last 30-45 minutes started feeling a bit feverish, and by feverish I mean that she feels joint aches and she's cold though it's 74 degrees in here. But I just took her temperature and she has no fever. Mentally she seems good too. She was back to being her ornery self again.
There were no chemo doses to get today either, she's all done with that and now we wait for it to take effect, destroy her bone marrow, and hope the transplant grafts.
Julie McPike showed up today and visited a while. Her mom Donna showed up today too. Andrya loves the company, so thanks for coming by.
Tomorrow is a big day. She gets her bone marrow transplant. Logan, her brother and donor, comes here to the hospital at 7am to give the donation and she'll receive it later in the evening. Tomorrow is also our 9 year anniversary.
So here's to hoping that tomorrow is as good a day as today was.
She was feeling good and in very high spirits; the headaches from yesterday's dose of cytoxin were gone, as were the sore throats. She only just in the last 30-45 minutes started feeling a bit feverish, and by feverish I mean that she feels joint aches and she's cold though it's 74 degrees in here. But I just took her temperature and she has no fever. Mentally she seems good too. She was back to being her ornery self again.
There were no chemo doses to get today either, she's all done with that and now we wait for it to take effect, destroy her bone marrow, and hope the transplant grafts.
Julie McPike showed up today and visited a while. Her mom Donna showed up today too. Andrya loves the company, so thanks for coming by.
Tomorrow is a big day. She gets her bone marrow transplant. Logan, her brother and donor, comes here to the hospital at 7am to give the donation and she'll receive it later in the evening. Tomorrow is also our 9 year anniversary.
So here's to hoping that tomorrow is as good a day as today was.
Monday, July 25, 2011
Day -3; Really rough day
It's Ryan again. Andrya is once again not in any mood to write her blog tonight since she had a very difficult day. She received her last dose of cytoxin today, thank god. It's the cytoxin that has been really rough on her. When she got her first dose of cytoxin yesterday it gave her a very sore throat and an incredibly bad headache. Poor girl only wanted to sleep it off but the pain in between her eyes was so severe that she couldn't fall asleep.
She cried a bit, but she was also really brave. She still got up to do her walks, she still took a bath and brushed her teeth. And though her spirits were low today, by the end of the day, she was able to put it all into proper perspective. She said to me, "Well, these side effects should be gone by tomorrow. And at least this is the last dose of my chemo, so if this is the worst of it...". I'm wondering if this is the worst day of this whole process; we'll see. That'd be a real blessing. Though we're smart enough to know we're not out of the woods yet. We're still not even to day 0.
Today for pain, her nurses have given her morphine at 6, then oxycodone at 7, then morphine again at 8, and again just now at 10, and she's going to get oxycodone again at 11. That should provide a bit of a glimpse into the pain she's in. She told me a minute ago that she thinks she's comfortable enough now to fall asleep.
Tomorrow she only gets ATG, which is to help decrease the chances of rejection of the transplant, and it has a tendency to make her really sleepy. Right before closing her eyes she said that she thinks she'll be in better spirits tomorrow. Atta girl.
She cried a bit, but she was also really brave. She still got up to do her walks, she still took a bath and brushed her teeth. And though her spirits were low today, by the end of the day, she was able to put it all into proper perspective. She said to me, "Well, these side effects should be gone by tomorrow. And at least this is the last dose of my chemo, so if this is the worst of it...". I'm wondering if this is the worst day of this whole process; we'll see. That'd be a real blessing. Though we're smart enough to know we're not out of the woods yet. We're still not even to day 0.
Today for pain, her nurses have given her morphine at 6, then oxycodone at 7, then morphine again at 8, and again just now at 10, and she's going to get oxycodone again at 11. That should provide a bit of a glimpse into the pain she's in. She told me a minute ago that she thinks she's comfortable enough now to fall asleep.
Tomorrow she only gets ATG, which is to help decrease the chances of rejection of the transplant, and it has a tendency to make her really sleepy. Right before closing her eyes she said that she thinks she'll be in better spirits tomorrow. Atta girl.
Sunday, July 24, 2011
Day -3
Hello everybody, this is Ryan today. Andrya is really knocked out from all the...stuff that they're pumping into her. From what I can recall, today she has had benedryl, chlonoprine, keppra, prednosone, mesna, and cytoxin. I only know the first and last one. Cytoxin is the 3rd of 3 chemo drugs, and today was her first dose of it. She's also only on the last chemo drug today, the cytoxin, and tomorrow is her last day of chemo, but she gets two doses of it. I think the cytoxin is the most severe of the drugs, and we even said last night that its name even sounds severe.
Sorry, I know that was a bit convoluted; she was trying to dictate it to me and it came out in bits. And that pretty much sums up the kind of day she had. All the drugs kept her asleep all day. She didn't walk as much or do her breathing machine, but she seemed to be in high spirits when she was awake. Which is good, but the chemo seems to be setting in now. She's been feeling lethargic; as she describes it, she feels "awful". She's had a real bad headache all day, and it's gotten worse as the day has gone on. Nausea has also been a real problem today and she has lost her appetite for the most part. She also has a sore throat that is getting worse.
Like I said though, despite all that she seems to have been in a good mood. When she's been awake. Anita, our sister in law, and her mother Bonnie came down and brought our niece and nephew Alisa and Isaiah. Bonnie made Andrya a beautiful blanket similar to the one she also made for Kellan.
Tomorrow is day -2, which is significant because her diet changes to a neutropenic one because they expect her immune system to start to significantly disappearing tomorrow as the chemo destroys her bone marrow. And for those that don't remember, the transplant is on Wednesday, day 0.
That's really it. I hope she can fall asleep tonight. As the night has worn on she's shown more and more side effects. I could best describe it as taking care of someone that has a fever or the flu. The nurse just came in to give her some morphine for her headache; hopefully she can get a break from the pain and pass out.
Sorry, I know that was a bit convoluted; she was trying to dictate it to me and it came out in bits. And that pretty much sums up the kind of day she had. All the drugs kept her asleep all day. She didn't walk as much or do her breathing machine, but she seemed to be in high spirits when she was awake. Which is good, but the chemo seems to be setting in now. She's been feeling lethargic; as she describes it, she feels "awful". She's had a real bad headache all day, and it's gotten worse as the day has gone on. Nausea has also been a real problem today and she has lost her appetite for the most part. She also has a sore throat that is getting worse.
Like I said though, despite all that she seems to have been in a good mood. When she's been awake. Anita, our sister in law, and her mother Bonnie came down and brought our niece and nephew Alisa and Isaiah. Bonnie made Andrya a beautiful blanket similar to the one she also made for Kellan.
Tomorrow is day -2, which is significant because her diet changes to a neutropenic one because they expect her immune system to start to significantly disappearing tomorrow as the chemo destroys her bone marrow. And for those that don't remember, the transplant is on Wednesday, day 0.
That's really it. I hope she can fall asleep tonight. As the night has worn on she's shown more and more side effects. I could best describe it as taking care of someone that has a fever or the flu. The nurse just came in to give her some morphine for her headache; hopefully she can get a break from the pain and pass out.
Saturday, July 23, 2011
Day -4
Today was my last day of Busulfan chemo and my first day of rabbit ATG. The rabbit ATG is more like an immunosuppresant rather than chemotherapy. With that being said, you'd think that it would have less side effects, but it didn't. I got flu-like symptoms, body aches, nausea, fever. My fever never got higher than 99.3, but it has been a rough day. I just got rid of a headache as well and my appetite is terrible.
Logan and my mom came to visit today. I'm really glad to see some people around here. Its pretty boring, especially when Ryan leaves to go home and be with the baby.
I just realized something today, that the day I actually get the bone marrow transplant is our 9th anniversary. Hopefully everything works out and we will have double to celebrate on that day every year.
I'm really tired, so I am cutting this off short tonight. Thanks again for keeping me and my family in your thoughts and prayers. Please pray that tomorrow's dose of ATG and the 1st dose of Cytoxan doesn't completely wipe me out.
Logan and my mom came to visit today. I'm really glad to see some people around here. Its pretty boring, especially when Ryan leaves to go home and be with the baby.
I just realized something today, that the day I actually get the bone marrow transplant is our 9th anniversary. Hopefully everything works out and we will have double to celebrate on that day every year.
I'm really tired, so I am cutting this off short tonight. Thanks again for keeping me and my family in your thoughts and prayers. Please pray that tomorrow's dose of ATG and the 1st dose of Cytoxan doesn't completely wipe me out.
Friday, July 22, 2011
Kellan makes an appearance!
Ryan somehow managed to arrange me to see Kellan today. It was nice, though he didn't seem to recognize me. It must have been the blue gown, gloves and mask I had to wear. It didn't feel right either. He kept looking at grandma, grandpa and daddy, but not me. I think that made it harder on me. I miss him terribly and I hate that I can't put him to bed, change his clothes, snuggle him while he naps. But the short time I got to spend with him was wonderful.
I got platelets this morning, as expected. My counts are doing the exact same as they were prior to getting chemo. I told the doctor today that his chemo wasn't working and there wasn't a need for me to be here. He assured me that it was working and that I would start feeling effects in about a week. Anyway, I feel like the healthiest person in this hospital and they are keeping me cooped up here like I'm knocking on death's doorstep. Feeling like this got me pretty down today. All I wanted to do was sleep. I'm glad Ryan had stuff to do today so that he didn't have to see me being miserable. I just want to go home and now I don't even feel like I have a home. It was a really bad day and then Ryan came back and cheered me up. I am currently on my 2nd to last Busulfan chemo treatment and will start the rabbit ATG tomorrow.
Kellan had his 4 month visit today. The doctor says he is doing great! He weighs 13 lbs 4 oz and is 23.5 in. His head is 18 in. I don't know if that is right, seems kind of big considering it was 14 in at birth. Ryan said he cried a bit for his shots, but then was ok after Ryan rubbed his legs a bit. I don't miss watching him get shots, just wish I could be there to console him.
I started studying for my GRE. There is another girl going to be checking into the unit in a week or 2 that wants to be a doctor. The night nurse that I've had the past 2 nights thinks we should get together considering we have similar goals after transplant.
I have had several requests for my address:
Andrya DeGhelder
KU Med Center
3901 Rainbow Blvd.
Room 4110
Kansas City, KS 66103
I can't receive fresh fruit, veggies or flowers.
The thoughts and prayers must be working because I still feel really good. Keep them coming! God bless Anita for taking care of Kellan today along with her own kids. I love the artwork from Alisa and Isaiah. They are hanging on my wall and door.
I got platelets this morning, as expected. My counts are doing the exact same as they were prior to getting chemo. I told the doctor today that his chemo wasn't working and there wasn't a need for me to be here. He assured me that it was working and that I would start feeling effects in about a week. Anyway, I feel like the healthiest person in this hospital and they are keeping me cooped up here like I'm knocking on death's doorstep. Feeling like this got me pretty down today. All I wanted to do was sleep. I'm glad Ryan had stuff to do today so that he didn't have to see me being miserable. I just want to go home and now I don't even feel like I have a home. It was a really bad day and then Ryan came back and cheered me up. I am currently on my 2nd to last Busulfan chemo treatment and will start the rabbit ATG tomorrow.
Kellan had his 4 month visit today. The doctor says he is doing great! He weighs 13 lbs 4 oz and is 23.5 in. His head is 18 in. I don't know if that is right, seems kind of big considering it was 14 in at birth. Ryan said he cried a bit for his shots, but then was ok after Ryan rubbed his legs a bit. I don't miss watching him get shots, just wish I could be there to console him.
I started studying for my GRE. There is another girl going to be checking into the unit in a week or 2 that wants to be a doctor. The night nurse that I've had the past 2 nights thinks we should get together considering we have similar goals after transplant.
I have had several requests for my address:
Andrya DeGhelder
KU Med Center
3901 Rainbow Blvd.
Room 4110
Kansas City, KS 66103
I can't receive fresh fruit, veggies or flowers.
The thoughts and prayers must be working because I still feel really good. Keep them coming! God bless Anita for taking care of Kellan today along with her own kids. I love the artwork from Alisa and Isaiah. They are hanging on my wall and door.
Thursday, July 21, 2011
One more day down
It was a rough day today and for no particular reason. We are at Day -6 to the transplant and I am getting my 11th dose of chemo right now. I'm feeling pretty lousy, but not because of the chemo. I just want to go home and be with my baby. I don't feel sick, so that makes it even worse.
They make us walk up and down the hallway. A complete round trip is 300 feet, so it is very small area. Today we taped up pictures of Kellan all over the hallways so that I can see him when I am out "getting my exercise." It cheered me up a little, but it isn't the same as seeing him in person. I also got to missing my cats back home. I just feel blockaded from the world and stuck in a 100 square foot box.
Ryan went and got me some Chipotle. I don't think he was suppose to, but the nurse said it was ok. In the meantime, the car broke down. Chipotle is only 2 blocks away, so he didn't have to go far.
My brother checks in on Saturday, so my mom is coming with him. That will be nice to have some different visitors.
Thanks for everyone's prayers, thoughts and help! We couldn't do it without our wonderful family and friends!
They make us walk up and down the hallway. A complete round trip is 300 feet, so it is very small area. Today we taped up pictures of Kellan all over the hallways so that I can see him when I am out "getting my exercise." It cheered me up a little, but it isn't the same as seeing him in person. I also got to missing my cats back home. I just feel blockaded from the world and stuck in a 100 square foot box.
Ryan went and got me some Chipotle. I don't think he was suppose to, but the nurse said it was ok. In the meantime, the car broke down. Chipotle is only 2 blocks away, so he didn't have to go far.
My brother checks in on Saturday, so my mom is coming with him. That will be nice to have some different visitors.
Thanks for everyone's prayers, thoughts and help! We couldn't do it without our wonderful family and friends!
Wednesday, July 20, 2011
Is this really real?
Day 2 of chemo was exactly like Day 1. Not much to report. Its funny to think that you have this awful chemical running through your body killing your cells, yet you don't feel anything. I have a bit of nausea, but nothing serious, could just be the change in my diet...you know, hospital food :)
Ryan went home and played with the baby this morning. He sent me videos. Kellan was talking and giggling, it made me smile. Ryan is here with me right now and is going to stay with me until I fall asleep..
Something interesting did happen to my blood counts. They gave me a unit of RBCs yesterday. I didn't feel like I needed them. My hgb was 7.6 on Monday and then 6.9 yesterday so they gave me blood. My platelets were 21 on Monday and 15 yesterday. Today....they were 16----I didn't have a platelet transfusion. Hmmmmm, interesting that they stopped changing. Could be nothing. usually they decrease by 5-10 per day. Now that I think about it, they gave me "B" platelets on Friday which means my counts don't go up as high and decrease faster. Its probably just a anomaly.
Thank you Jenny for babysitting Kellan and giving our in-laws a little bit of a break! I'm super blessed to have an awesome family!
Ryan went home and played with the baby this morning. He sent me videos. Kellan was talking and giggling, it made me smile. Ryan is here with me right now and is going to stay with me until I fall asleep..
Something interesting did happen to my blood counts. They gave me a unit of RBCs yesterday. I didn't feel like I needed them. My hgb was 7.6 on Monday and then 6.9 yesterday so they gave me blood. My platelets were 21 on Monday and 15 yesterday. Today....they were 16----I didn't have a platelet transfusion. Hmmmmm, interesting that they stopped changing. Could be nothing. usually they decrease by 5-10 per day. Now that I think about it, they gave me "B" platelets on Friday which means my counts don't go up as high and decrease faster. Its probably just a anomaly.
Thank you Jenny for babysitting Kellan and giving our in-laws a little bit of a break! I'm super blessed to have an awesome family!
Tuesday, July 19, 2011
Day 1 under our belt
Besides having to get up at the butt crack of dawn, today hasn't been so bad! I'm currently on my 3rd dose of chemo, Busulfan. I don't feel any side effects yet, buy my pee sure does smell funny, kind of like when you eat asparagus!
I'm not going to lie, it was really rough leaving Kellan this morning. I at least got to feed him before we left. I know he is in good hands with Grandma Susie and Grandpa Joe. And if not Aunt Nita and Aunt Jenny are standing by :)
Other than sleeping most of the day, we haven't done much. Ryan has been a trooper. We got a bigger room, so that much more to decorate! I can't wait to have my walls full of pictures and cards and whatever else people want to send me to cheer me up!
The nurses are really nice and the bed is pretty comfortable. I got pink blanket with me, so I am happy! The food isn't too bad so far either. I order "room service" when I am ready to eat and they bring it up so it isn't cold. I like that a whole lot better, but it was weird at first.
So I am in room 4110. That is on the 4th floor of the hospital in the BMT ward. There are special precautions that have to be taken to enter the ward. Everyone has to have their stuff wiped down with an antiseptic wipe (so ladies, I would not bring your LV or Coach bags with you). Hand washing is essential and you can't use my bathroom. Once you get used to it, it isn't so bad. But if you want to visit me, then room 4110 is it. The visiting hours are 8 to 8 I believe, but they are pretty flexible. You can call ahead of time to make sure its ok. My cell is 858-531-6511 and my room number is 913-588-4110.
So the main rules are: no food, no flowers, no drinks for me. If you are feeling sick, have a cough, runny nose, sore throat you can't come. This is all to help protect my fragile immune system. You may be asked to wear a gown and mask when you visit.
Now that I've scared you, I'd really appreciate visitors! There is a limit of 2 and no children under the age of 12. Can't wait to see everyone!
I'm not going to lie, it was really rough leaving Kellan this morning. I at least got to feed him before we left. I know he is in good hands with Grandma Susie and Grandpa Joe. And if not Aunt Nita and Aunt Jenny are standing by :)
Other than sleeping most of the day, we haven't done much. Ryan has been a trooper. We got a bigger room, so that much more to decorate! I can't wait to have my walls full of pictures and cards and whatever else people want to send me to cheer me up!
The nurses are really nice and the bed is pretty comfortable. I got pink blanket with me, so I am happy! The food isn't too bad so far either. I order "room service" when I am ready to eat and they bring it up so it isn't cold. I like that a whole lot better, but it was weird at first.
So I am in room 4110. That is on the 4th floor of the hospital in the BMT ward. There are special precautions that have to be taken to enter the ward. Everyone has to have their stuff wiped down with an antiseptic wipe (so ladies, I would not bring your LV or Coach bags with you). Hand washing is essential and you can't use my bathroom. Once you get used to it, it isn't so bad. But if you want to visit me, then room 4110 is it. The visiting hours are 8 to 8 I believe, but they are pretty flexible. You can call ahead of time to make sure its ok. My cell is 858-531-6511 and my room number is 913-588-4110.
So the main rules are: no food, no flowers, no drinks for me. If you are feeling sick, have a cough, runny nose, sore throat you can't come. This is all to help protect my fragile immune system. You may be asked to wear a gown and mask when you visit.
Now that I've scared you, I'd really appreciate visitors! There is a limit of 2 and no children under the age of 12. Can't wait to see everyone!
Monday, July 18, 2011
D-Day
It is 12:05 AM, which means in 6 hours, I will be checking into the hospital to start my treatment.
We had another viist with the doctor today to discuss my plan. What he said made a whole lot more sense. So, I had, and currently have Aplastic Anemia. It has progressed into MDS and another condition called Paroxymal Nocturnal Hemoglobinuria (PNH). All three are bone marrow failure diseases. Because I have a combination of all 3, the treatment regimen is a little more difficult. I will be receiving treatment for MDS and AA. The treatments kind of conflict with each other. The treatment for MDS will make me get a little bit of Graft Versus Host Disease (GVHD). This is bad because the we don't want any GVHD for the AA. So I have a higher risk (about 20% chance) of developing severe, chronic GVHD. That will mean I will never work again and pretty much never leave the house again. That is going to suck if that happens.
So I feel better after the visit knowing that there wasn't a "wrong diagnosis." I am more scared now than ever though. This is real, this is happening now. In 9 hours, I will start chemotherapy.
I'm so happy and relieved that I have my husband by my side. I may even let him watch the Royals' games while he sits with me :) I just hope my baby will know me when I get out. My niece Alisa made me a hat and a card today. It was just adorable! I can't wait to wear the hat and take a picture for her. I'm not scared about losing my hair. I am kind of excited about it. Everyone tells me that it grows back different after chemo. Maybe we should start a poll to see how people will think that it will grow back!
The pre-medicine they had me take today made me feel drunk. The medicine was 2 anti-seizure medications because the chemo that I start tomorrow will make me have seizures possibly. Thankfully, the 2nd dose wasn't as bad as the first. So if there is stuff in this post that doesn't make sense, I blame it on Klonopin and Keppra :)
Please continue to keep me and my family in your thoughts and prayers. We really, truly appreciate it!
My husband and family will update the blog when I don't feel like it. So please come back and keep checking it. I have had a lot of positive response from it and I derive strength from telling my story.
We had another viist with the doctor today to discuss my plan. What he said made a whole lot more sense. So, I had, and currently have Aplastic Anemia. It has progressed into MDS and another condition called Paroxymal Nocturnal Hemoglobinuria (PNH). All three are bone marrow failure diseases. Because I have a combination of all 3, the treatment regimen is a little more difficult. I will be receiving treatment for MDS and AA. The treatments kind of conflict with each other. The treatment for MDS will make me get a little bit of Graft Versus Host Disease (GVHD). This is bad because the we don't want any GVHD for the AA. So I have a higher risk (about 20% chance) of developing severe, chronic GVHD. That will mean I will never work again and pretty much never leave the house again. That is going to suck if that happens.
So I feel better after the visit knowing that there wasn't a "wrong diagnosis." I am more scared now than ever though. This is real, this is happening now. In 9 hours, I will start chemotherapy.
I'm so happy and relieved that I have my husband by my side. I may even let him watch the Royals' games while he sits with me :) I just hope my baby will know me when I get out. My niece Alisa made me a hat and a card today. It was just adorable! I can't wait to wear the hat and take a picture for her. I'm not scared about losing my hair. I am kind of excited about it. Everyone tells me that it grows back different after chemo. Maybe we should start a poll to see how people will think that it will grow back!
The pre-medicine they had me take today made me feel drunk. The medicine was 2 anti-seizure medications because the chemo that I start tomorrow will make me have seizures possibly. Thankfully, the 2nd dose wasn't as bad as the first. So if there is stuff in this post that doesn't make sense, I blame it on Klonopin and Keppra :)
Please continue to keep me and my family in your thoughts and prayers. We really, truly appreciate it!
My husband and family will update the blog when I don't feel like it. So please come back and keep checking it. I have had a lot of positive response from it and I derive strength from telling my story.
Saturday, July 16, 2011
New News
Well everyone, I survived Aplastic Anemia, but I now have Myelodysplastic Syndrome (MDS). We found this out yesterday afternoon and it came as quite a shock. There isn't a whole lot of difference between the 2 conditions. They are both bone marrow failure conditions, both require chemo and a bone marrow transplant. The difference between the 2 is that my marrow is making the cells that it needs to, but they do not mature correctly. Before they thought that my marrow wasn't making enough cells.
So this meant that my admission to the hospital was postponed. I am now going in on Tuesday at 6:00 AM to start chemo at 9:00 AM. I will be on Busulfan and Cytoxan. The Busulfan will cause seizures, so they have me beginning anti-seizure medication before I even go in. The doses of these will be higher than they were with the AA. Some good news is that my brother can now donate his stem cells through his blood and not through a bone marrow harvest (from the hip bone). It is much less invasive for him.
I am very conflicted with this new diagnosis. I have a ton of questions for the doctors. The AA made sense because it happened during pregnancy, which is one of the causes of it. Pregnancy does not cause MDS. The MDS is caused by a chromosomal defect, which I didn't have when they ran the chromosome test when I was diagnosed with AA. MDS usually occurs in 70 year old men, I am a 32 year old female. The survival rate is less as well. I now have a 5 year survival rate of 50-60%. The good news is that I have a lot of the factors that make the rate toward the higher end of that range.
I am very excited that my husband made it back to Missouri safely and he will be with me for the next month. The doctors don't expect me to be ready to go anywhere from Kansas City for at least 6 months, so I guess I'm here for awhile.
My sister-in-law, Anita, is trying to set up a charity account that you can donate to us. If you want to donate and want it as a tax deduction, I'd suggest waiting until that is set up. Thank you so much for helping with that Anita!
I appreciate all the thoughts and prayers coming this way.
I need a new title for my blog now...I'm taking suggestions :)
So this meant that my admission to the hospital was postponed. I am now going in on Tuesday at 6:00 AM to start chemo at 9:00 AM. I will be on Busulfan and Cytoxan. The Busulfan will cause seizures, so they have me beginning anti-seizure medication before I even go in. The doses of these will be higher than they were with the AA. Some good news is that my brother can now donate his stem cells through his blood and not through a bone marrow harvest (from the hip bone). It is much less invasive for him.
I am very conflicted with this new diagnosis. I have a ton of questions for the doctors. The AA made sense because it happened during pregnancy, which is one of the causes of it. Pregnancy does not cause MDS. The MDS is caused by a chromosomal defect, which I didn't have when they ran the chromosome test when I was diagnosed with AA. MDS usually occurs in 70 year old men, I am a 32 year old female. The survival rate is less as well. I now have a 5 year survival rate of 50-60%. The good news is that I have a lot of the factors that make the rate toward the higher end of that range.
I am very excited that my husband made it back to Missouri safely and he will be with me for the next month. The doctors don't expect me to be ready to go anywhere from Kansas City for at least 6 months, so I guess I'm here for awhile.
My sister-in-law, Anita, is trying to set up a charity account that you can donate to us. If you want to donate and want it as a tax deduction, I'd suggest waiting until that is set up. Thank you so much for helping with that Anita!
I appreciate all the thoughts and prayers coming this way.
I need a new title for my blog now...I'm taking suggestions :)
Friday, July 15, 2011
Wednesday, July 13, 2011
ER Visit
I got to hang with my niece Amber today! I just love her to pieces and wish I could see her more often. Now I'm at the ER because I was careless and cut my finger. The triage nurse does not seem to care that I don't have any platelets to stop the bleeding and the dr on call at the BMT clinic insisted on me going to the ER even though he had the wrong patient when he spoke to me. This dr started telling me that the ER doctor wanted to discharge me on antibiotics. I had to interrupt him to tell him I cut my finger and needed to know if he thought I should go to the ER. So now we have been here for an hour and I will probably have to pass out from no blood before I get seen. The longer I wait the more of a waste of time this is.
Monday, July 11, 2011
Beginning of the week of relief
I wasn't suppose to have any appointments this week, which I was thankful for, so I can spend every possible second with my son. I can't believe that in a few days, I won't be able to see him for a month! Thinking about it makes my eyes well up with tears. I keep telling myself, that a month is a short amount of time considering all the time we will have in the future if I get this transplant.
I got a call around noon requesting that I come in for more labs :( Then I got another call asking if I could get my ob/gyn appointment done today. So I did both. The admin staff at the ob/gyn clinic were AWFUL to me. Once I said something to them about it, they started being more professional. I guess people that work in admin at ob/gyn offices have to take a class on rudeness because they were like that at Tripler too. Anyway, I'm glad I stood up for myself and said something.
The labs I had done were to test for Fanconi's anemia. I have no clue why they are testing this, because I don't have any of the physical symptoms of it, like 3 thumbs, deformed skeletal structures, mental retardation, etc. Oh well, its just a blood test. I asked them to do a CBC as well, they don't think I need any blood at this time even though I get lightheaded when I stand and am very fatigued.
So, tomorrow, I should NOT have any appointments! I'm excited! I can spend all day with Kellan. I think we want to go shopping. He needs some books and diapers and bottles and Babies R Us is having a sale.
I want to thank my in-laws for being so wonderful these past 2 weeks! I don't know what I would do without them. I treated them to some frozen custard concretes today.
I got a call around noon requesting that I come in for more labs :( Then I got another call asking if I could get my ob/gyn appointment done today. So I did both. The admin staff at the ob/gyn clinic were AWFUL to me. Once I said something to them about it, they started being more professional. I guess people that work in admin at ob/gyn offices have to take a class on rudeness because they were like that at Tripler too. Anyway, I'm glad I stood up for myself and said something.
The labs I had done were to test for Fanconi's anemia. I have no clue why they are testing this, because I don't have any of the physical symptoms of it, like 3 thumbs, deformed skeletal structures, mental retardation, etc. Oh well, its just a blood test. I asked them to do a CBC as well, they don't think I need any blood at this time even though I get lightheaded when I stand and am very fatigued.
So, tomorrow, I should NOT have any appointments! I'm excited! I can spend all day with Kellan. I think we want to go shopping. He needs some books and diapers and bottles and Babies R Us is having a sale.
I want to thank my in-laws for being so wonderful these past 2 weeks! I don't know what I would do without them. I treated them to some frozen custard concretes today.
Saturday, July 9, 2011
First Break from the doctor's office....or so I thought
Ahhh, Saturday! Well I thought that today would be a good day, without doctors and transfusions and tests...but I was wrong. I woke up with a really bad headache today. The doctor's don't want me taking tylenol, ibuprofen or aleve because it will mask a fever. I ended up taking some tylenol anyway. It didn't really help. I suffered until about 6:00 tonight before it finally went away. I'm glad my in-laws were here to take care of Kellan while I tried to rest and "sleep off" the headache. This is the 2nd one in a week. I never really have had headaches, but the day I had Kellan, I lost my peripheral vision and they diagnosed it as a migraine. I have never really been one to believe in migraines, specifically because I used to work with 2 ladies that always left work because of migraines. I always thought they were faking it and since then have defined a migraine as a woman's excuse to get out of work. I think that I had a migraine today. I know that they are legitimate in some people, but now I think I can understand a little better. I just could not function at all today.
But that wasn't the reason why I ended up going to the hospital. I took a shower and tried covering up my catheter, but it didn't work. It got wet and I had to go to the hospital to get it changed. I'm really glad that the doctor on call didn't get mad at me for getting it wet. I really did try. They gave me some stuff to use instead of saran wrap, hopefully that will work better. My in-laws are going to get a different shower head, one that you can take off as use as a sprayer.
I'm glad I got to spend some time with Kellan today. He seemed happy about it too. Everytime I held him, he seemed like he just wanted to cuddle. It made my heart melt. Its almost like he knows that something is going on and wants to be with his mommy.
I'm excited for Ryan to come on Thursday. We are going to go out for one last outing before I get admitted on Saturday. If anyone wants to come, let me know.
But that wasn't the reason why I ended up going to the hospital. I took a shower and tried covering up my catheter, but it didn't work. It got wet and I had to go to the hospital to get it changed. I'm really glad that the doctor on call didn't get mad at me for getting it wet. I really did try. They gave me some stuff to use instead of saran wrap, hopefully that will work better. My in-laws are going to get a different shower head, one that you can take off as use as a sprayer.
I'm glad I got to spend some time with Kellan today. He seemed happy about it too. Everytime I held him, he seemed like he just wanted to cuddle. It made my heart melt. Its almost like he knows that something is going on and wants to be with his mommy.
I'm excited for Ryan to come on Thursday. We are going to go out for one last outing before I get admitted on Saturday. If anyone wants to come, let me know.
Friday, July 8, 2011
Short Day
Today was a short day. I had labs, met with a Nurse Practitioner and had a consultation with the radiation oncologist. One bit of good news is that my WBC seems to be trending up instead of down! My ANC (absolute neutrophil count) was over 1400 today! Yesterday is was just over 1200 and Tuesday it was around 790. That is all without taking my neupogen shots to stimulate my WBC. Preliminary results have come back from my biopsy. I didn't get to talk to the coordinator, but she told my mother-in-law that they were looking about the same as the biopsy we had done in December.
The radiation isn't going to be as bad as I thought. It is going to be low dose radiation and the side effects are going to be the same or less as the chemo.
I am still in a lot of pain from my procedure from yesterday. The NP gave me a prescription for oxycodone. It kind of helps. It mostly makes me sleepy.
My spirits are a little higher today because I got to spend more time with my son. We got home from my appointments at 1:30. Kellan and I napped from then until 5. Then my in-laws, Kellan and I went to dinner at the Olive Garden.
I am looking forward to next week, where I only have appointments on Friday. I will most likely have to go in earlier for a blood transfusion, but that can be anytime. A week of rest before starting chemo on next Saturday! Hopefully I can get some facetime with some of my friends in KC before Saturday.
The radiation isn't going to be as bad as I thought. It is going to be low dose radiation and the side effects are going to be the same or less as the chemo.
I am still in a lot of pain from my procedure from yesterday. The NP gave me a prescription for oxycodone. It kind of helps. It mostly makes me sleepy.
My spirits are a little higher today because I got to spend more time with my son. We got home from my appointments at 1:30. Kellan and I napped from then until 5. Then my in-laws, Kellan and I went to dinner at the Olive Garden.
I am looking forward to next week, where I only have appointments on Friday. I will most likely have to go in earlier for a blood transfusion, but that can be anytime. A week of rest before starting chemo on next Saturday! Hopefully I can get some facetime with some of my friends in KC before Saturday.
Thursday, July 7, 2011
Procedure
Today I got a Trifusion Catheter put in and my PICC line take out. Its like a permanant IV with 3 hookups for my chemo and immunosuppressive therapy. I had to get platelets first to make sure my counts were up over 50. I felt drugged all day. They gave me benadryl and a steroid for the platelet transfusion. About the time that finally wore off, they gave me Versed and Fentanyl for the catheter placement. These are 2 sedating medications.
When we got home after the procedure, I was still feeling tired, so I napped for about 3 hours. I woke up in a lot of pain. Mostly in my clavicle area and right arm. It still hurts pretty bad. I couldn't hold Kellan for very long, so I hardly got to see or be with him today. I feel so sad and that this is just a taste of what it is going to be like once I get admitted to the hospital when I won't get to hold him at all. I am so thankful that Ryan's family is available to take care of him. I don't know what I would do without them.
Tomorrow is my first doctor's appointment after all the tests. Please keep me in your thoughts and prayers. I hope that everything comes back ok so that there isn't a delay in getting the transplant. I did get some good news from my CBC today. My absolute neutrophil count went up despite not taking any of my Neupogen (the white blood cell stimulator). On Tuesday it was 790 and today it was 1270. They would like for it to be over 2000, but 1270 is good enough for me. I'm sure that this is going to be discussed tomorrow. My hemoglobin went up from 6.3 to 7.1 but went back down to 6.7 after the transfusion. Those are still pretty low considering I got a RBC transfusion on Tuesday.
Ryan got some stuff accomplished today too. We found out earlier this week that we have to do an "Early Returns" for me. The only thing I really know about this is that it means the military is going to allow him to ship some of our household goods home, including the crib and my car. I think that is going to help us out a lot! He talked to the Chaplain at the command today because he is having trouble with his XO, the 2nd in command at his command. We understand that it is the XO's job to push his officers, but he is just not being compassionate about our situation at all. It is really frustrating for both me and Ryan because we have given so much to the military and the one time we need them on our side, they are giving us a hard time.
I told my sister in law last night that I needed to start opening up more about my feelings in these blogs because it will help me to deal with them. I want everyone to know that I am trying to be really strong throughout this, not just for me, but for my husband and baby as well. But I am really, really, really scared. I get angered really easily when things start to get difficult. So if I lash out at anyone, I apologize in advance, it is not you I am angry at, it is my illness. I have accepted the fact that this isn't just a "condition" it is an illness. I don't want to burden anyone, but I know I have to have help. If I seem reluctant to take your help, please feel free to make me take your help. I want it more than anything. I also don't want to wear everyone down before this even gets started.
Finally, I haven't gotten much of a response for getting phone numbers for people. If you aren't up to speed, I lost my phone on Monday and had to get a new one with a new number. It is in my profile on Facebook. You can email me at andrya79@hotmail.com if you want mine or want to give me yours.
When we got home after the procedure, I was still feeling tired, so I napped for about 3 hours. I woke up in a lot of pain. Mostly in my clavicle area and right arm. It still hurts pretty bad. I couldn't hold Kellan for very long, so I hardly got to see or be with him today. I feel so sad and that this is just a taste of what it is going to be like once I get admitted to the hospital when I won't get to hold him at all. I am so thankful that Ryan's family is available to take care of him. I don't know what I would do without them.
Tomorrow is my first doctor's appointment after all the tests. Please keep me in your thoughts and prayers. I hope that everything comes back ok so that there isn't a delay in getting the transplant. I did get some good news from my CBC today. My absolute neutrophil count went up despite not taking any of my Neupogen (the white blood cell stimulator). On Tuesday it was 790 and today it was 1270. They would like for it to be over 2000, but 1270 is good enough for me. I'm sure that this is going to be discussed tomorrow. My hemoglobin went up from 6.3 to 7.1 but went back down to 6.7 after the transfusion. Those are still pretty low considering I got a RBC transfusion on Tuesday.
Ryan got some stuff accomplished today too. We found out earlier this week that we have to do an "Early Returns" for me. The only thing I really know about this is that it means the military is going to allow him to ship some of our household goods home, including the crib and my car. I think that is going to help us out a lot! He talked to the Chaplain at the command today because he is having trouble with his XO, the 2nd in command at his command. We understand that it is the XO's job to push his officers, but he is just not being compassionate about our situation at all. It is really frustrating for both me and Ryan because we have given so much to the military and the one time we need them on our side, they are giving us a hard time.
I told my sister in law last night that I needed to start opening up more about my feelings in these blogs because it will help me to deal with them. I want everyone to know that I am trying to be really strong throughout this, not just for me, but for my husband and baby as well. But I am really, really, really scared. I get angered really easily when things start to get difficult. So if I lash out at anyone, I apologize in advance, it is not you I am angry at, it is my illness. I have accepted the fact that this isn't just a "condition" it is an illness. I don't want to burden anyone, but I know I have to have help. If I seem reluctant to take your help, please feel free to make me take your help. I want it more than anything. I also don't want to wear everyone down before this even gets started.
Finally, I haven't gotten much of a response for getting phone numbers for people. If you aren't up to speed, I lost my phone on Monday and had to get a new one with a new number. It is in my profile on Facebook. You can email me at andrya79@hotmail.com if you want mine or want to give me yours.
Wednesday, July 6, 2011
Testing
So I had an early day today with even more tests. An ECHO and EKG were performed, both seemed normal. I got a chest x-ray and a panorex x-ray (the teeth x-ray they do at dentist offices). I also got an abdominal ultrasound. My labs came back yesterday and my liver function tests went down to normal. Maybe it was a fluke they were elevated or maybe it was that beer I had the day before the last test. Who knows! Even though this doesn't seem like a lot, it took all day!
Good news is that I got a new phone. I broke down and got the iPhone 4. I had to get a new number unfortunately and I can't transfer my old numbers to the new phone because the phone is lost :( Hopefully people will know how to get a hold of me through my husband, his family, my family or facebook. I will post my new number on facebook so if you want it, you can get it from there.
Tomorrow is another long day. I have to get platelets again to make sure my counts are above 50 in order to get my new catheter put in. It is a trifusion catheter, sort of like a Hickman catheter from what I am told. Bye, bye PICC line, you have served me well!
Aunt Jenny will be watching Kellan tomorrow. Thanks so much for doing that! I am so blessed to have great family members willing to do what it takes to make sure I am taken care of!
Good news is that I got a new phone. I broke down and got the iPhone 4. I had to get a new number unfortunately and I can't transfer my old numbers to the new phone because the phone is lost :( Hopefully people will know how to get a hold of me through my husband, his family, my family or facebook. I will post my new number on facebook so if you want it, you can get it from there.
Tomorrow is another long day. I have to get platelets again to make sure my counts are above 50 in order to get my new catheter put in. It is a trifusion catheter, sort of like a Hickman catheter from what I am told. Bye, bye PICC line, you have served me well!
Aunt Jenny will be watching Kellan tomorrow. Thanks so much for doing that! I am so blessed to have great family members willing to do what it takes to make sure I am taken care of!
Tuesday, July 5, 2011
Long Day
Today was the longest day for the week in regards to appointments. I had labs done first thing, then off to get a bone marrow biopsy. This time, it was awful! It hurt really bad and took nearly an hour!3 The Nurse Practitioner wasn't strong enough to drill through my bone, so they had to keep stopping and putting more lidocaine in the area. I took some Ativan ahead of time and then they gave me a fentanyl lollipop during it. By the time that was done, I was pretty woozy. I then had to get a CT scan of my sinuses and chest. Next they gave me IV benadryl and an IV steroid because I had to get a platelet and RBC transfusion. My platelet count was 8 and my HGB was 6.3. That is my lowest HGB thus far. In 6 days it went down 1.6 points! My WBC count went down as well. I am almost at the neutropenic point, so I have to be careful not to get contaminated :) I then got a history and physical done and finally some education and training on the BMT process. I could barely stay awake for that, in fact, I'm pretty sure I slept through most of it. Luckily, my mom and Susie, my mother-in-law were there. We also spoke to the financial coordinator and social worker. Looks like Tricare is going to pay 100% of the BMT! We will most likely have to pay out-of-pocket for prescriptions, which there is going to be a lot!
This is the longest time I have spent away from Kellan, about 12 hours. I missed him the whole time, but knew he was in good hands with Aunt Nita. After we got home, we went out and had some wonderful BBQ. Oh how I have missed good BBQ!
I didn't have time to get a new phone, so I guess that will be tomorrow.
My father-in-law is looking into setting up a donation account at their church so donations can be tax deductible. We are still ironing that out.
This is the longest time I have spent away from Kellan, about 12 hours. I missed him the whole time, but knew he was in good hands with Aunt Nita. After we got home, we went out and had some wonderful BBQ. Oh how I have missed good BBQ!
I didn't have time to get a new phone, so I guess that will be tomorrow.
My father-in-law is looking into setting up a donation account at their church so donations can be tax deductible. We are still ironing that out.
Monday, July 4, 2011
Hell Week
Tomorrow officially starts my week of tests to make sure that I am healthy enough to receive my bone marrow transplant. Our longest day is tomorrow. I have labs first thing at 7:30 and my last appointment is at 4:00. I have a bone marrow biopsy, history and physical, financial meeting, social work meeting, CT scan of my head, and BMT instruction. They are trying to cram all the testing in this week to start the transplant process on Saturday. I feel like it is going too fast. I really kind of wanted to enjoy a couple of days prior to admission to the hospital to be with my friends and family.
I lost my cell phone today too. I HAVE to have a cell phone or I will go crazy! Maybe I will be able to manage to get to the AT&T store tomorrow to get another one. So if you want me to have your number, email it to me at andrya79@hotmail.com or send me a message on facebook :)
I want to thank Anita for watching Kellan all day! You are a saving grace! I'm so blessed to have you and your family in my life. I also want to thank Susie and my mom for going with me to my appointments tomorrow. Hopefully, that will make a long day not seem so long.
I lost my cell phone today too. I HAVE to have a cell phone or I will go crazy! Maybe I will be able to manage to get to the AT&T store tomorrow to get another one. So if you want me to have your number, email it to me at andrya79@hotmail.com or send me a message on facebook :)
I want to thank Anita for watching Kellan all day! You are a saving grace! I'm so blessed to have you and your family in my life. I also want to thank Susie and my mom for going with me to my appointments tomorrow. Hopefully, that will make a long day not seem so long.
Saturday, July 2, 2011
Family Visit
My mom, stepdad and brother came to visit today. I updated them with the information. My brother is going to be my bone marrow donor. I'm super happy that my mom is going to be able to come to some of my visits this week.
We discussed possible fundraising ideas. We have pretty good healthcare, but there are going to be a lot of out-of-pocket expenses. We will find out on Tuesday what exactly we are in for. At this time, we just need help with looking after Kellan and/or accompanying me to my doctor visits. We already have some volunteers, so just comment if you can help out next week.
I'm glad that Kellan got to visit with Grandma Donna again and to meet Grandpa Weldon and Uncle Logan. He really seemed to take a liking to Grandpa :)
We discussed possible fundraising ideas. We have pretty good healthcare, but there are going to be a lot of out-of-pocket expenses. We will find out on Tuesday what exactly we are in for. At this time, we just need help with looking after Kellan and/or accompanying me to my doctor visits. We already have some volunteers, so just comment if you can help out next week.
I'm glad that Kellan got to visit with Grandma Donna again and to meet Grandpa Weldon and Uncle Logan. He really seemed to take a liking to Grandpa :)
Friday, July 1, 2011
The Move and Initial Testing
Last week and the beginning of this week was a milestone for us. We finally got me back to Kansas City to start the bone marrow transplant process! Getting to Kansas City had its up and downs. It's really difficult to organize and pack and move with a 3 month old, so not a lot got done and most of the packing was done at the last minute. Our friends, Schel and Sterling, threw us an awesome going away party! We had a lot of fun and I'm so glad that so many people showed up. It really meant a lot to me to see how many wonderful people we have met since moving to Hawaii. I'm really going to miss everyone!
I got 2 transfusions last week, one on Monday and one on Friday. Both platelet transfusions. My platelet count on Monday was 8 and it was 20 on Thursday. My hemoglobin was 8.7 on Thursday, so they didn't think that I would need RBCs for the trip home. I kind of wished that I had gotten some RBCs on Friday as well for the trip, because traveling is exhausting enough, let alone doing it with low oxygen. Oh well, I made it and that is all that matters.
Wednesday was my consultation with the BMT team at KU. Things are definitely different here. They won't let Kellan come with me...ever. Everyone wears gowns and gloves when they do anything to me so I feel like I'm the diseased one, only they are just trying to protect me from their germs. Its almost like a factory, but everyone was really nice. The doctor didn't have great bedside manner, but he seemed really knowledgeable and eager to get started. There was a lot of information given to me and of course all I remember is the bad stuff. 5-6 days of chemo, I can't be around Kellan at all for 2-3 weeks if I am lucky, after I get home...no pets, separate bathrooms, no plants, no Kellan after vaccinations. I was also told that trying to continue my milk supply going through this is not feasible. For something that I thought I wanted so badly, now turns into something that I am dreading. I thought the worst would be over in a month, but it looks like it will be more like 4-6 months and some things will be in effect for up to a year after the transplant. I am really
upset at the fact I am not going to get to be around Kellan.
This will in fact be the hardest thing I will ever do in my life.
They drew my blood to repeat all the tests TAMC did. I'd say it was easily 20 tubes of blood. I got my CBC back and needed a platelet transfusion yesterday, my count was 11. The good news is that I DON'T have to be admitted to the hospital for this! That cuts my time down by 3 hours! The doctor commented on my WBC and he wondered why it was so high. I told him about my WBC stimulating shot and he said that doesn't work for people with AA. Of course that made me want to go and do some more research...what I found was there isn't any concrete evidence that it does or does not work. If I don't have AA, they will know when they get my new bone marrow biopsy results back.
I also got some preliminary results back. My liver functions tests were elevated, so was all of my iron tests and my B-12 test. The only thing they can tell me that is causing this is the breakdown of my red blood cells and all of the transfusions I have gotten. I hope it is nothing more serious, but for now they are going to do an abdominal ultrasound to check. After all the tests next week, we will know every little thing that is wrong with me!
I got 2 transfusions last week, one on Monday and one on Friday. Both platelet transfusions. My platelet count on Monday was 8 and it was 20 on Thursday. My hemoglobin was 8.7 on Thursday, so they didn't think that I would need RBCs for the trip home. I kind of wished that I had gotten some RBCs on Friday as well for the trip, because traveling is exhausting enough, let alone doing it with low oxygen. Oh well, I made it and that is all that matters.
Wednesday was my consultation with the BMT team at KU. Things are definitely different here. They won't let Kellan come with me...ever. Everyone wears gowns and gloves when they do anything to me so I feel like I'm the diseased one, only they are just trying to protect me from their germs. Its almost like a factory, but everyone was really nice. The doctor didn't have great bedside manner, but he seemed really knowledgeable and eager to get started. There was a lot of information given to me and of course all I remember is the bad stuff. 5-6 days of chemo, I can't be around Kellan at all for 2-3 weeks if I am lucky, after I get home...no pets, separate bathrooms, no plants, no Kellan after vaccinations. I was also told that trying to continue my milk supply going through this is not feasible. For something that I thought I wanted so badly, now turns into something that I am dreading. I thought the worst would be over in a month, but it looks like it will be more like 4-6 months and some things will be in effect for up to a year after the transplant. I am really
upset at the fact I am not going to get to be around Kellan.
This will in fact be the hardest thing I will ever do in my life.
They drew my blood to repeat all the tests TAMC did. I'd say it was easily 20 tubes of blood. I got my CBC back and needed a platelet transfusion yesterday, my count was 11. The good news is that I DON'T have to be admitted to the hospital for this! That cuts my time down by 3 hours! The doctor commented on my WBC and he wondered why it was so high. I told him about my WBC stimulating shot and he said that doesn't work for people with AA. Of course that made me want to go and do some more research...what I found was there isn't any concrete evidence that it does or does not work. If I don't have AA, they will know when they get my new bone marrow biopsy results back.
I also got some preliminary results back. My liver functions tests were elevated, so was all of my iron tests and my B-12 test. The only thing they can tell me that is causing this is the breakdown of my red blood cells and all of the transfusions I have gotten. I hope it is nothing more serious, but for now they are going to do an abdominal ultrasound to check. After all the tests next week, we will know every little thing that is wrong with me!
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