...but looks like it is. I was told a few weeks ago to expect to lose my hair from the new round of chemo I've started recently. And today is the first day I've noticed it thinning out. Again.
I know, I know. It's just hair.
But it's been growing back so thick and full recently and with my natural curl to it. And I'm just feeling down.
This is where I keep telling myself to be strong but all I want to do is cry.
Saturday, July 30, 2011
Wednesday, July 27, 2011
Another great appointment!!
I had my weekly appointment yesterday and had bloodwork, checkup with the NP Laura, and then chemo afterwards. She said my hemoglobin was a 9.9 and that is considered low but I have tolerated it being much lower in the past so she wasn't too concerned. Next week I won't have an appt. with her or Dr. V but I do have to go in for a check on my counts and then possibly go to Methodist for a type and cross and go back the next day for a blood and platelet transfusion. I have a feeling I'll have to go because my counts aren't going to improve any after having chemo yesterday and I can tell I'm starting to slowly feel more and more tired. With my counts being low though I just need to be more cautious with watching for infections and any symptoms of being sick.
She told me I was showing signs and symptoms of my body going thru withdrawl from when I stopped taking the steroid Dexamethasone. So this time when I go to stop taking it I'll be weaned off of it instead of stopping it cold turkey. I can't believe how bad it made me feel last time! So hopefully this will help.
I have a followup appointment with my Neurologist, Dr. Dong, on August 8th in Peoria. He's the doctor I've had since my 5 seizures in the hospital on Christmas Eve. Thankfully I haven't had any seizure activity since that day and they know what was causing them (my body did not like the chemo drug Asparaginase that I had been on). And then I have my appointment with Laura on the next day (the 9th) and will be having bloodwork and chemo, and then go to Methodist for my 8th spinal tap. That will be a very long day for me.
I've been having acid reflux off and on in the last week or so. I read online it could possibly be related to this steroid med I'm on so I'll wait and just see how it is over the weekend and if it's still bothering me than I'll call beginning of the week and see what they have to say. But for now it's not too bad.
I got a wonderful e-mail today from a friend of Justin's Grandmother and it made me feel really good. Carol said she just recently started reading my blog and was very happy to hear how good things are going for me and to keep my head up. It definitely brightened my day and brought a smile to my face! : )
I'm going to watch some tv and then head to bed. I'm hoping for a good nights sleep tonight, I've been having a hard time with sleep for awhile now (another side effect of the steroid). I have some stuff I'm hoping to get accomplished around here tomorrow so I hope I feel up to it. Kids are doing great here at home and I think we're all adjusting to them being out of daycare and being back at home all day!
Oh, before I forget - Aly had her 4 year checkup with Dr. Beaty yesterday morning. He's a great doctor and we love him being the kids' pediatrician! He said Aly is completely on track for everything developmentally and said she is in the 5th percentile for her height at 3 feet 2 inches and she is in the 20th percentile for her weight at 33 pounds. He said she's just very petite. She did great there and we were so glad to hear such a great report.
Good night! Kim
She told me I was showing signs and symptoms of my body going thru withdrawl from when I stopped taking the steroid Dexamethasone. So this time when I go to stop taking it I'll be weaned off of it instead of stopping it cold turkey. I can't believe how bad it made me feel last time! So hopefully this will help.
I have a followup appointment with my Neurologist, Dr. Dong, on August 8th in Peoria. He's the doctor I've had since my 5 seizures in the hospital on Christmas Eve. Thankfully I haven't had any seizure activity since that day and they know what was causing them (my body did not like the chemo drug Asparaginase that I had been on). And then I have my appointment with Laura on the next day (the 9th) and will be having bloodwork and chemo, and then go to Methodist for my 8th spinal tap. That will be a very long day for me.
I've been having acid reflux off and on in the last week or so. I read online it could possibly be related to this steroid med I'm on so I'll wait and just see how it is over the weekend and if it's still bothering me than I'll call beginning of the week and see what they have to say. But for now it's not too bad.
I got a wonderful e-mail today from a friend of Justin's Grandmother and it made me feel really good. Carol said she just recently started reading my blog and was very happy to hear how good things are going for me and to keep my head up. It definitely brightened my day and brought a smile to my face! : )
I'm going to watch some tv and then head to bed. I'm hoping for a good nights sleep tonight, I've been having a hard time with sleep for awhile now (another side effect of the steroid). I have some stuff I'm hoping to get accomplished around here tomorrow so I hope I feel up to it. Kids are doing great here at home and I think we're all adjusting to them being out of daycare and being back at home all day!
Oh, before I forget - Aly had her 4 year checkup with Dr. Beaty yesterday morning. He's a great doctor and we love him being the kids' pediatrician! He said Aly is completely on track for everything developmentally and said she is in the 5th percentile for her height at 3 feet 2 inches and she is in the 20th percentile for her weight at 33 pounds. He said she's just very petite. She did great there and we were so glad to hear such a great report.
Good night! Kim
Tuesday, July 26, 2011
One step closer...
To things being back to "normal" around here. Or as normal as things were before my diagnosis in December. I just wrote out a check and addressed the envelope to send off Aly's admission fee for her to start back at Hobby Horse this Fall. Happiest I've ever felt writing a check. ; )
I've been SO tired all day. I have my weekly appointment tomorrow so I'll find out what my counts are but I'm assuming they have gone down and that is the reason I'm feeling so tired. But I'm up late now because I took a late nap today. I need to get to bed because early tomorrow morning we also have Aly's 4 year checkup at her pediatrician.
Oh, my mouth sores have returned. My tongue is a little sore and I'm definitely feeling them on the left side of my throat. I mentioned to Justin earlier about them and he asked if I thought maybe it was just the start of a sore throat. Nope, definitely sores. Nooo way you can mistake this for a sore throat. : (
One more thing. I'm hoping I'm not jinxing us but our A/C decided it didn't want to work again - we noticed it this morning and Justin called and the company we go thru came right out and told us he thinks it might just be because it's been running non-stop recently and didn't find anything else wrong. So the guy charged the unit and gave us a bill for $115.00. It got up to 83 in here (not as bad as the 95 it got in here last time it was out!) and we were all feeling pretty cranky from the heat. So thankful the guy got it going again though.*Fingers crossed*
Off to bed! I'll update more tomorrow after my appointment.
Kim
I've been SO tired all day. I have my weekly appointment tomorrow so I'll find out what my counts are but I'm assuming they have gone down and that is the reason I'm feeling so tired. But I'm up late now because I took a late nap today. I need to get to bed because early tomorrow morning we also have Aly's 4 year checkup at her pediatrician.
Oh, my mouth sores have returned. My tongue is a little sore and I'm definitely feeling them on the left side of my throat. I mentioned to Justin earlier about them and he asked if I thought maybe it was just the start of a sore throat. Nope, definitely sores. Nooo way you can mistake this for a sore throat. : (
One more thing. I'm hoping I'm not jinxing us but our A/C decided it didn't want to work again - we noticed it this morning and Justin called and the company we go thru came right out and told us he thinks it might just be because it's been running non-stop recently and didn't find anything else wrong. So the guy charged the unit and gave us a bill for $115.00. It got up to 83 in here (not as bad as the 95 it got in here last time it was out!) and we were all feeling pretty cranky from the heat. So thankful the guy got it going again though.*Fingers crossed*
Off to bed! I'll update more tomorrow after my appointment.
Kim
Monday, July 25, 2011
I've been slacking...BIG time.
Where has the time gone? I've been slacking in updates for awhile now on here. I know I say that all the time it seems anymore.
We've just pulled both kids completely out of daycare in the last few weeks and so I've been trying to re-adjust and get life back to normal as possible here at home as to how it was before I was diagnosed. I missed having them here at home so much and I'm so glad I'm finally feeling good enough strength wise to have them back here all day by myself.
Let me try and catch up a bit. My last post was about my bone marrow biopsy and PET scan. I also had an echo cardiogram done right around that same time. The bm biopsy was so incredibly painful and something I knew was going to hurt pretty bad. After getting there and in the room and being a nervous wreck they decided to go ahead and give me Demerol and Versed. For the biopsy they basically have to drill a needle down into your bone to collect a marrow sample. And two things I know firsthand, the younger you are the stronger your bones are which makes it harder on everyone involved, and no matter how much Demerol you are given - they cannot numb bone. Justin was in the room with me and the NP Nancy Irwin was pretty quick but it still hurt like hell. And I also had a great nurse in there named Shelby. I remember everything - even rambling on and on about Aly being sneaky and climbing on a chair in the kitchen to get a popsicle from the top shelf of the freezer the previous day to everyone in the room. And after that, we went downstairs and I had my PET scan. They gave me the radiation injection and I had to sit for an hour and dozed in a chair. Then they took me back to a freezing cold room and had me lay down for the scan and I slept thru the entire scan that lasted another 45 minutes. Afterwards we came home and I went to bed (I was told to try my best and stay away from the kids for atleast 12 hours because of the radiation). We may or may not have stopped at Sonic before heading home. ; )
Even though the biopsy was SO painful I would do it again in a heartbeat to get the results I got - still in remission. Thank God! I called for all the results about a week after all 3 procedures were done and got all my results. I was a nervous wreck calling but so very relieved to get the great news.
And then I got to enjoy a 3 week break from chemo and for my counts to completely get back to normal. So I enjoyed the 4th of July with a little break. : ) But...one July 1st our central air decided to go out. And being a super busy holiday weekend we knew we were going to be stuck without air. Justin called our A/C company and they sent a guy right out on a Friday night and he couldn't get it going but didn't charge us a service fee. And then we ended up having to go a week and a half before having air going again. And during that time, our 40" flat screen in our front room stopped working (only a few years old) and our Chevy Trailblazer decided to start acting up. I just wanted to scream. Justin made the comment about us being hit with more than a storm, something more like a tsunami and even though I was so mad and beyond frustrated I kept telling myself that "Kim, it could be much worse. Be thankful for all the great doctors reports". And eventually we were able to get the new parts for the A/C and get the new unit installed, the tv decided it wanted to work again and must of just been overheating in our 90+ degree house, and the Trailblazer is luckily still under warranty and is in the process of having a new engine replaced in it.
After my break from chemo, I started back and had another treatment and spinal tap (7th spinal). At my appointment Dr. Vukov brought up how well all my reports looked but said that from the echo it did show I do have some damage to my heart from the chemo. He said when I was first diagnosed on 12/8 that my blood flow to my heart was at 65 and now it shows it at 50. He said he wanted to put me on a steroid called Dexamethasone to prevent any further damage from the new chemo drug I'd be starting called Doxorubicin. He said he would be sending me to a cardiologist soon and I would be having another echo in the near future. Dr. Jan Namaslowski did this spinal (I requested him this time) and he is very gentle and makes me feel much more at ease during the procedure. This is something I'll never get used to or say is an easy and simple procedure because it's not. It seems like I've had so many though that I now what exactly to expect at each one. And I've even started to request them to use an 18 gauge needle because it's smaller than what they like to normally use but has much less of a chance of causing a spinal headache. When they do collect the spinal fluid for testing (which they've only done a few times) it takes much longer to collect using the smaller needle but I've come to learn from all the doctors I've met there that he doesn't seem to mind taking that extra time and doesn't seem rushed with me.
And then this last Tuesday was my 27th Birthday. : )
We celebrated the weekend before with Justin's family at Chili's (his Mom and I share the same Birthday!). And then on Tuesday morning we dropped the kids off at Justin's parents house and went to my appointment. I really wasn't looking forward to sitting in chemo on my Birthday but it was alright. Dr. Vukov told us that it didn't even look like I had had anything done the week prior because my counts looked fantastic. He said that he is very pleased at how well I was doing with everything and how well I was tolerating all the hard stuff being thrown in my direction. And then he asked how I was tolerating having the rush of energy from the steroid. And the way this steroid goes is that I'll take it for one week, be off the next, start up again for a week, be off, and so on. I stopped taking it on Monday night. I felt great on Tuesday and we woke up and started the day, during chemo the nurses all came up in the pod I was in and sang me Happy Birthday, we went to Flat Top for lunch, and came home and rested. That night we went to Tyroni's for dinner with Justin's family and about halfway thru I started feeling awful. I started sweating and feeling very jittery. The next day I felt MUCH worse. My body ached so bad and I felt like I had pulled all the muscles in my body. While making the kids lunch I broke into a heavy sweat, started feeling jittery, and thought I was going to throw up and then even thought I was going to possibly pass out at one time. I immediately called Justin and he came right home and I went and rested and he took care of the kids. I told myself if I felt the same way the next morning I was going to call Dr. Vukov's and sure enough, I felt bad but not as bad as I had the afternoon before. I told them my symptoms and he told me to take vicodin for the pain and that it was just the steroid coming out of my system (I was also retaining water and had a huge increase in appetite from the steroid and could definitely tell I've gained weight in a week).
I felt awful. I felt like I was going thru serious withdrawl - all over a heart med/steroid I needed to take to keep from going into heart failure. This lasted until Saturday. And I'm supposed to start it back up this coming Tuesday morning, so I'm going to talk to the NP Laura when I go in for my appt. that morning and go from there.
But that's really all I have for now. I need to get to bed and I'm hoping I'm not keeping Justin up by me being in bed on the laptop. My fingers are hurting pretty bad also from the neuropathy. I'll post some new pics this week of the precious kiddo's. Goodnight.
~Kim
We've just pulled both kids completely out of daycare in the last few weeks and so I've been trying to re-adjust and get life back to normal as possible here at home as to how it was before I was diagnosed. I missed having them here at home so much and I'm so glad I'm finally feeling good enough strength wise to have them back here all day by myself.
Let me try and catch up a bit. My last post was about my bone marrow biopsy and PET scan. I also had an echo cardiogram done right around that same time. The bm biopsy was so incredibly painful and something I knew was going to hurt pretty bad. After getting there and in the room and being a nervous wreck they decided to go ahead and give me Demerol and Versed. For the biopsy they basically have to drill a needle down into your bone to collect a marrow sample. And two things I know firsthand, the younger you are the stronger your bones are which makes it harder on everyone involved, and no matter how much Demerol you are given - they cannot numb bone. Justin was in the room with me and the NP Nancy Irwin was pretty quick but it still hurt like hell. And I also had a great nurse in there named Shelby. I remember everything - even rambling on and on about Aly being sneaky and climbing on a chair in the kitchen to get a popsicle from the top shelf of the freezer the previous day to everyone in the room. And after that, we went downstairs and I had my PET scan. They gave me the radiation injection and I had to sit for an hour and dozed in a chair. Then they took me back to a freezing cold room and had me lay down for the scan and I slept thru the entire scan that lasted another 45 minutes. Afterwards we came home and I went to bed (I was told to try my best and stay away from the kids for atleast 12 hours because of the radiation). We may or may not have stopped at Sonic before heading home. ; )
Even though the biopsy was SO painful I would do it again in a heartbeat to get the results I got - still in remission. Thank God! I called for all the results about a week after all 3 procedures were done and got all my results. I was a nervous wreck calling but so very relieved to get the great news.
And then I got to enjoy a 3 week break from chemo and for my counts to completely get back to normal. So I enjoyed the 4th of July with a little break. : ) But...one July 1st our central air decided to go out. And being a super busy holiday weekend we knew we were going to be stuck without air. Justin called our A/C company and they sent a guy right out on a Friday night and he couldn't get it going but didn't charge us a service fee. And then we ended up having to go a week and a half before having air going again. And during that time, our 40" flat screen in our front room stopped working (only a few years old) and our Chevy Trailblazer decided to start acting up. I just wanted to scream. Justin made the comment about us being hit with more than a storm, something more like a tsunami and even though I was so mad and beyond frustrated I kept telling myself that "Kim, it could be much worse. Be thankful for all the great doctors reports". And eventually we were able to get the new parts for the A/C and get the new unit installed, the tv decided it wanted to work again and must of just been overheating in our 90+ degree house, and the Trailblazer is luckily still under warranty and is in the process of having a new engine replaced in it.
After my break from chemo, I started back and had another treatment and spinal tap (7th spinal). At my appointment Dr. Vukov brought up how well all my reports looked but said that from the echo it did show I do have some damage to my heart from the chemo. He said when I was first diagnosed on 12/8 that my blood flow to my heart was at 65 and now it shows it at 50. He said he wanted to put me on a steroid called Dexamethasone to prevent any further damage from the new chemo drug I'd be starting called Doxorubicin. He said he would be sending me to a cardiologist soon and I would be having another echo in the near future. Dr. Jan Namaslowski did this spinal (I requested him this time) and he is very gentle and makes me feel much more at ease during the procedure. This is something I'll never get used to or say is an easy and simple procedure because it's not. It seems like I've had so many though that I now what exactly to expect at each one. And I've even started to request them to use an 18 gauge needle because it's smaller than what they like to normally use but has much less of a chance of causing a spinal headache. When they do collect the spinal fluid for testing (which they've only done a few times) it takes much longer to collect using the smaller needle but I've come to learn from all the doctors I've met there that he doesn't seem to mind taking that extra time and doesn't seem rushed with me.
And then this last Tuesday was my 27th Birthday. : )
We celebrated the weekend before with Justin's family at Chili's (his Mom and I share the same Birthday!). And then on Tuesday morning we dropped the kids off at Justin's parents house and went to my appointment. I really wasn't looking forward to sitting in chemo on my Birthday but it was alright. Dr. Vukov told us that it didn't even look like I had had anything done the week prior because my counts looked fantastic. He said that he is very pleased at how well I was doing with everything and how well I was tolerating all the hard stuff being thrown in my direction. And then he asked how I was tolerating having the rush of energy from the steroid. And the way this steroid goes is that I'll take it for one week, be off the next, start up again for a week, be off, and so on. I stopped taking it on Monday night. I felt great on Tuesday and we woke up and started the day, during chemo the nurses all came up in the pod I was in and sang me Happy Birthday, we went to Flat Top for lunch, and came home and rested. That night we went to Tyroni's for dinner with Justin's family and about halfway thru I started feeling awful. I started sweating and feeling very jittery. The next day I felt MUCH worse. My body ached so bad and I felt like I had pulled all the muscles in my body. While making the kids lunch I broke into a heavy sweat, started feeling jittery, and thought I was going to throw up and then even thought I was going to possibly pass out at one time. I immediately called Justin and he came right home and I went and rested and he took care of the kids. I told myself if I felt the same way the next morning I was going to call Dr. Vukov's and sure enough, I felt bad but not as bad as I had the afternoon before. I told them my symptoms and he told me to take vicodin for the pain and that it was just the steroid coming out of my system (I was also retaining water and had a huge increase in appetite from the steroid and could definitely tell I've gained weight in a week).
I felt awful. I felt like I was going thru serious withdrawl - all over a heart med/steroid I needed to take to keep from going into heart failure. This lasted until Saturday. And I'm supposed to start it back up this coming Tuesday morning, so I'm going to talk to the NP Laura when I go in for my appt. that morning and go from there.
But that's really all I have for now. I need to get to bed and I'm hoping I'm not keeping Justin up by me being in bed on the laptop. My fingers are hurting pretty bad also from the neuropathy. I'll post some new pics this week of the precious kiddo's. Goodnight.
~Kim
Subscribe to:
Posts (Atom)