Monday, November 28, 2011
A few more pictures
Every week during radiation they had to take new x-rays. These pictures were taken during my first week of treatment but I thought they were pretty interesting. These were taken with Justin's cell phone so I'm sorry if the quality isn't the best.
All over the place post...
Things around here have been great. I'm feeling pretty good. Tired and busy, but good and grateful.
We have Comcast for our internet and home phone and have recently been having issues with it. We couldn't figure out for anything what was causing the problem because Comcast said it wasn't on their end and it wasn't on ours and because of our busy days we couldn't have them out during the week and were finally able to have them out this last Saturday. The guy came out and figured out right away what the problem was - he went into our backyard and I guess the connector box that is right between our house and our neighbors, had been disconnected. I guess a neighbor had recently had their service turned off and instead ours was turned off by mistake. So we went a week and a half without service! I was so irritated, but atleast they were able to get it fixed and our account is being credited for that time we went without service.
I haven't posted since my last appointment. My white count had gone up from 0.53 to 7.51 in ONE week. Thank you very much, Neulasta shot. I may just be asking for another one right before Christmas - it will raise my white count and lasts for fourteen days.
I have an appointment tomorrow with the NP Laura Hertz. I'm curious to see what my counts are right now.
I am DONE with the brain radiation. SOOO glad. That was tough, and going in there everyday was so hard. Walking into that hospital brings back so many memories, from days when my Mom was there at different times, to my hospitalization last December, all my procedures, and so on. And then just walking in there everyday.
Right at the end of radiation I started to lose my hair. I lost it all in the exact spots I had the radiation. But then some spots still had bits and pieces of hair. It looked weird. So one night I had Justin shave it and this is by far the shortest it's ever been in the three times I've lost it in the last year. My head is officially bald - but then tonight we noticed that in one spot on the back of my head it was starting to come back in a tiny bit. I was joking around with Justin and told him that it actually looked like a mustache on the back of my head, so I had him shave that part again. And, once again this just proves how awesome he is - the Sunday night we shaved my head he did his also. He's shaved his head each time I've lost my hair. He told he thought I looked beautiful and very brave (as I was crying and looking in the mirror). Now we just will have to wait and see if my hair comes back in - with brain radiation there is the risk of hair never coming back in or if it does it might just come in in patches. So time will tell. And for now, I'm wearing a winter hat when I go to bed at night. My head gets so cold at night since we sleep with fans on - Justin thinks it looks cute but hey, it works. : )
Speaking of hats, I'm looking for a red hat and scarf. So far I haven't had much luck but I'm still looking so if anyone sees one somewhere please let me know. Thanks!
I'm not really feeling too bad. Nothing a thirty minute nap during the day won't fix. But, I am having an issue with my left eye. I finished radiation last Tuesday (12 treatments total) and didn't have this until my last treatment. I can see something out of my left eye and it looks like a small gray line that is folded (it's hard to explain). I can only see it when I really focus on something and can see it in great detail when my eyes are looking straight forward and as soon as I turn my eye it goes off to the side. I'm hoping this will go away and soon, it's more annoying that anything. At first I thought it might just be something on my contact but it's still there when I have my contacts out. I plan on bringing it up tomorrow at my appointment.
We had a great Thanksgiving! We all ate so much and just had a great day! : )
Yesterday we put up our Christmas tree and decorations. I'm so excited for Christmas this year. The kids are really getting into the spirit and I'm so happy! We brought out Buddy the Elf (Elf on the Shelf) on Thanksgiving and the kids love hunting him down every morning. It's almost time to start our Advent calendar and I'm just so excited!!
I think I'm going to do majority of our Christmas shopping online this year, that way I can avoid the crowds and all the germs. I'm even more paranoid about germs now, but I have to be.
I need to finish up the kids' Christmas lists for a few people, if you haven't heard from me yet, I'm sorry. I'll get it done and sent sometime tomorrow. And we also have to "mail" Aly's letter to Santa tomorrow. It's been such a long year and I'm so excited for Christmas and the New Year.
Off to bed! Goodnight.
We have Comcast for our internet and home phone and have recently been having issues with it. We couldn't figure out for anything what was causing the problem because Comcast said it wasn't on their end and it wasn't on ours and because of our busy days we couldn't have them out during the week and were finally able to have them out this last Saturday. The guy came out and figured out right away what the problem was - he went into our backyard and I guess the connector box that is right between our house and our neighbors, had been disconnected. I guess a neighbor had recently had their service turned off and instead ours was turned off by mistake. So we went a week and a half without service! I was so irritated, but atleast they were able to get it fixed and our account is being credited for that time we went without service.
I haven't posted since my last appointment. My white count had gone up from 0.53 to 7.51 in ONE week. Thank you very much, Neulasta shot. I may just be asking for another one right before Christmas - it will raise my white count and lasts for fourteen days.
I have an appointment tomorrow with the NP Laura Hertz. I'm curious to see what my counts are right now.
I am DONE with the brain radiation. SOOO glad. That was tough, and going in there everyday was so hard. Walking into that hospital brings back so many memories, from days when my Mom was there at different times, to my hospitalization last December, all my procedures, and so on. And then just walking in there everyday.
Right at the end of radiation I started to lose my hair. I lost it all in the exact spots I had the radiation. But then some spots still had bits and pieces of hair. It looked weird. So one night I had Justin shave it and this is by far the shortest it's ever been in the three times I've lost it in the last year. My head is officially bald - but then tonight we noticed that in one spot on the back of my head it was starting to come back in a tiny bit. I was joking around with Justin and told him that it actually looked like a mustache on the back of my head, so I had him shave that part again. And, once again this just proves how awesome he is - the Sunday night we shaved my head he did his also. He's shaved his head each time I've lost my hair. He told he thought I looked beautiful and very brave (as I was crying and looking in the mirror). Now we just will have to wait and see if my hair comes back in - with brain radiation there is the risk of hair never coming back in or if it does it might just come in in patches. So time will tell. And for now, I'm wearing a winter hat when I go to bed at night. My head gets so cold at night since we sleep with fans on - Justin thinks it looks cute but hey, it works. : )
Speaking of hats, I'm looking for a red hat and scarf. So far I haven't had much luck but I'm still looking so if anyone sees one somewhere please let me know. Thanks!
I'm not really feeling too bad. Nothing a thirty minute nap during the day won't fix. But, I am having an issue with my left eye. I finished radiation last Tuesday (12 treatments total) and didn't have this until my last treatment. I can see something out of my left eye and it looks like a small gray line that is folded (it's hard to explain). I can only see it when I really focus on something and can see it in great detail when my eyes are looking straight forward and as soon as I turn my eye it goes off to the side. I'm hoping this will go away and soon, it's more annoying that anything. At first I thought it might just be something on my contact but it's still there when I have my contacts out. I plan on bringing it up tomorrow at my appointment.
We had a great Thanksgiving! We all ate so much and just had a great day! : )
Yesterday we put up our Christmas tree and decorations. I'm so excited for Christmas this year. The kids are really getting into the spirit and I'm so happy! We brought out Buddy the Elf (Elf on the Shelf) on Thanksgiving and the kids love hunting him down every morning. It's almost time to start our Advent calendar and I'm just so excited!!
I think I'm going to do majority of our Christmas shopping online this year, that way I can avoid the crowds and all the germs. I'm even more paranoid about germs now, but I have to be.
I need to finish up the kids' Christmas lists for a few people, if you haven't heard from me yet, I'm sorry. I'll get it done and sent sometime tomorrow. And we also have to "mail" Aly's letter to Santa tomorrow. It's been such a long year and I'm so excited for Christmas and the New Year.
Off to bed! Goodnight.
Sunday, November 13, 2011
Feeling a little better...
My fever finally broke late Friday early Saturday morning. I felt pretty decent yesterday and felt like I had a little bit of energy back. Until today. Kids slept in a little so we did also. Now the kids are eating lunch while Justin mows and hangs up Christmas lights (before it gets really cold) and I feel like I could seriously crash - go back to bed and sleep, sleep, sleep.
I had a long and hard cry last night. I've just had many emotions and feelings running through my mind lately. From the radiation treatments and it just seems the farther into treatment I get the more anxiety I have, missing my Mom so much and knowing the kids won't know her growing up - especially Connor, to my seriously neverending medical bills, and just so much more.
I just feel drained. I was told to expect fatigue and with my white blood count still being low I'm just exhausted.
I plan on putting the kids down for rest time in a bit and taking a little rest myself.
Kim
Wednesday, November 9, 2011
Update
This post is going to be short. I'm pretty sick right now and hardly have any energy to do anything.
Monday night I started feeling pretty sick. Nauseated and spiked a temp. It ranged between 99.7 and 101.2. From past experiences, I know a fever while on chemo is not good.
Justin called Dr. Vukov's and Dr. Carpenter's and the radiation was put on hold yesterday until I went in for bloodwork and my weekly appointment.
Well, my counts are still pretty bad. Even worse than last week. That is one big reason I'm feeling so crummy.
White Blood Cells
0.53 (normal range is 4.26 - 9.66)
Red Blood Cells
2.76 (normal range is 4.20 - 6.02)
Hemoglobin
9.5 (normal range is 11.5 - 16.0)
Platelets
89 (normal range is 133- 382)
Between the brain radiation and my extremely low white count I am completely exhausted. Actually, exhausted is an understatement.
I went in yesterday and was put on an antibiotic (Ciprofloxacin) to get this fever gone but they don't think I actually have an infection going on anywhere. They think that since I'm having a fever it's from my body trying to fight off anything and everything that is trying to invade my body right now since I basically have zilch for infection fighters.
I also have no appetite for anything. Nothing sounds good. I'm trying to force myself to eat.
Same thing happened when I was in the hospital from Dec. to Jan. and I lost my appetite and ended up losing 48 lbs. in one months time.
I've pretty much been sequestering myself to our bedroom to rest as much as possible and to avoid germs (pretty tough with a 2 year old and a 4 year old running around)! But Justin's been fantastic with letting me rest as much as possible.
I was also given a shot of Neulasta in my stomach to hopefully boost my white blood cells. Hoping it works!!
Okay, longer than I planned but I wanted to give everyone an update.
4 radiation treatments down, 8 more to go!
Monday night I started feeling pretty sick. Nauseated and spiked a temp. It ranged between 99.7 and 101.2. From past experiences, I know a fever while on chemo is not good.
Justin called Dr. Vukov's and Dr. Carpenter's and the radiation was put on hold yesterday until I went in for bloodwork and my weekly appointment.
Well, my counts are still pretty bad. Even worse than last week. That is one big reason I'm feeling so crummy.
White Blood Cells
0.53 (normal range is 4.26 - 9.66)
Red Blood Cells
2.76 (normal range is 4.20 - 6.02)
Hemoglobin
9.5 (normal range is 11.5 - 16.0)
Platelets
89 (normal range is 133- 382)
Between the brain radiation and my extremely low white count I am completely exhausted. Actually, exhausted is an understatement.
I went in yesterday and was put on an antibiotic (Ciprofloxacin) to get this fever gone but they don't think I actually have an infection going on anywhere. They think that since I'm having a fever it's from my body trying to fight off anything and everything that is trying to invade my body right now since I basically have zilch for infection fighters.
I also have no appetite for anything. Nothing sounds good. I'm trying to force myself to eat.
Same thing happened when I was in the hospital from Dec. to Jan. and I lost my appetite and ended up losing 48 lbs. in one months time.
I've pretty much been sequestering myself to our bedroom to rest as much as possible and to avoid germs (pretty tough with a 2 year old and a 4 year old running around)! But Justin's been fantastic with letting me rest as much as possible.
I was also given a shot of Neulasta in my stomach to hopefully boost my white blood cells. Hoping it works!!
Okay, longer than I planned but I wanted to give everyone an update.
4 radiation treatments down, 8 more to go!
Friday, November 4, 2011
Second Treatment
I had my second treatment today and I was in and out within 30 minutes. The radiation itself only takes about 30 seconds on each side. And I seriously think the worst part of the whole process is wearing that mask.
All went well with it. But from my first treatment yesterday I was just exhausted from the headache I had afterwards. I talked to the radiology techs and they told me that the headache can happen since they are focusing solely on my head/brain. They said that the radiation can cause my brain to swell and cause it to rub against my skull creating the headache. The headache I had after yesterday's treatment was awful. I felt intense pain from temple to temple and then towards the end of the headache I felt like I was having pain at the back of my head. It was just awful. I took some medicine and went to bed early and Justin took care of the kids and put them to bed. Around 8 A.M. I noticed it was starting to go away...
And then I had treatment at 2 P.M. and it was back very soon after. So I called Justin's parents and asked if they minded me keeping the kids over there a bit longer and I came home and took it easy. It's now almost midnight and I still have the headache. It's not as severe as the one I had last night.
But they told me that especially since I have a history of seizures that I need to watch these headaches extra close.
I'll post more later with more details on how my first day went, my appointment with Dr. Carpenter, and a few more pictures from my first treatment. But right now I'm going to bed and hoping this headache goes away.
Kim
All went well with it. But from my first treatment yesterday I was just exhausted from the headache I had afterwards. I talked to the radiology techs and they told me that the headache can happen since they are focusing solely on my head/brain. They said that the radiation can cause my brain to swell and cause it to rub against my skull creating the headache. The headache I had after yesterday's treatment was awful. I felt intense pain from temple to temple and then towards the end of the headache I felt like I was having pain at the back of my head. It was just awful. I took some medicine and went to bed early and Justin took care of the kids and put them to bed. Around 8 A.M. I noticed it was starting to go away...
And then I had treatment at 2 P.M. and it was back very soon after. So I called Justin's parents and asked if they minded me keeping the kids over there a bit longer and I came home and took it easy. It's now almost midnight and I still have the headache. It's not as severe as the one I had last night.
But they told me that especially since I have a history of seizures that I need to watch these headaches extra close.
I'll post more later with more details on how my first day went, my appointment with Dr. Carpenter, and a few more pictures from my first treatment. But right now I'm going to bed and hoping this headache goes away.
Kim
Thursday, November 3, 2011
First Treatment
All went fine with my first treatment of radiation today. I'm completely exhausted though and have a terrible headache so I'm going to bed but I will post more tomorrow. My second treatment is scheduled for 2 o'clock tomorrow afternoon.
Goodnight.
Kim
Goodnight.
Kim
2 P.M.
That's what time I have my appointment at Methodist. I'm so nervous...
Today it's cold and dreary out - I've spent most of the morning snuggling with the kids and trying to keep my mind off this afternoon.
I'll post again tonight.
Today it's cold and dreary out - I've spent most of the morning snuggling with the kids and trying to keep my mind off this afternoon.
I'll post again tonight.
Wednesday, November 2, 2011
Appointment and Mask
I went in yesterday and had my normal appointment and saw the NP, Laura. My appointment went well but my counts weren't the best. My white count was 0.71 and my platelets were 141. As she put it, my counts are in the gutter (due to my most recent spinal tap and the oral chemo pills I'm taking at home). Because of my white count being low I just need to be extra cautious since I don't have any infection fighters right now, so pretty much wherever I go that is public I have to wear a mask.
They had no problems whatsoever getting good blood flow from my port. I'm so glad! They drew blood and then flushed it with heparin and when the NP went to look at it it wasn't sticking up near as much as it had been. But I still just need to keep a close eye on it.
I knew it was about time to start the radiation therapy. So after my appointment we left there and then Justin had a doctors appointment himself and then we went to Methodist. I had a cat scan done and then had the mask made for the therapy. This morning the radiation oncologist, Dr. Carpenter, reviewed the images and then gave me the go ahead to start tomorrow (they weren't sure they were going to be able to proceed with starting this week because of my low counts). So I go in tomorrow at 2 o'clock. I'll have a total of 12 sessions. 2 days this week, M-F next week, and then M-F the following. Each session is only supposed to last about 15 minutes.
But I'm a nervous wreck! The mask molding/fitting was terrifying. It is put on wet and dries to your face within a matter of minutes, but it just gets tighter and tighter. At one point of the whole process I could feel my heart pounding through my face - I felt so scared and just wanted to throw my arms up and be done. But I didn't. I know this is just one more thing I need to do. At one point, the radiation tech came over the speaker to talk to me and ask me to turn my head a little to the left and I tried but there was just no way - the mask was dry and rock hard and also bolted to the table. Talk about feeling scared!!
I wanted to have some pictures for this blog so I asked Justin to take some for me.
So here you go. The "pillow" I'm laying on was specially molded for my head also. If you want to see larger pictures, you can click on them and they will enlarge.
A radiation tech, Bob, taking pictures also for their records. He was so nice and made the entire process much easier!
All marked and ready for Thursday.
They had no problems whatsoever getting good blood flow from my port. I'm so glad! They drew blood and then flushed it with heparin and when the NP went to look at it it wasn't sticking up near as much as it had been. But I still just need to keep a close eye on it.
I knew it was about time to start the radiation therapy. So after my appointment we left there and then Justin had a doctors appointment himself and then we went to Methodist. I had a cat scan done and then had the mask made for the therapy. This morning the radiation oncologist, Dr. Carpenter, reviewed the images and then gave me the go ahead to start tomorrow (they weren't sure they were going to be able to proceed with starting this week because of my low counts). So I go in tomorrow at 2 o'clock. I'll have a total of 12 sessions. 2 days this week, M-F next week, and then M-F the following. Each session is only supposed to last about 15 minutes.
But I'm a nervous wreck! The mask molding/fitting was terrifying. It is put on wet and dries to your face within a matter of minutes, but it just gets tighter and tighter. At one point of the whole process I could feel my heart pounding through my face - I felt so scared and just wanted to throw my arms up and be done. But I didn't. I know this is just one more thing I need to do. At one point, the radiation tech came over the speaker to talk to me and ask me to turn my head a little to the left and I tried but there was just no way - the mask was dry and rock hard and also bolted to the table. Talk about feeling scared!!
I wanted to have some pictures for this blog so I asked Justin to take some for me.
So here you go. The "pillow" I'm laying on was specially molded for my head also. If you want to see larger pictures, you can click on them and they will enlarge.
A radiation tech, Bob, taking pictures also for their records. He was so nice and made the entire process much easier!
All marked and ready for Thursday.
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