So the last time I wrote I was getting tested for cancerous cells that may or may not be in my cerebral spinal fluid. After 2 lumbar punctures (and many painkillers) they came back clear. I had talked to a radiologist who decideed to not do any radiation on me because she doesn't like the idea of doing radiation when we don't know for certain that there are cancer cells to kill. Radiation could cause graft versus host disease at both the site and internally so it would be best to avoid it if possible.
After talking to my doctor it seems like the best thing to do is just wait and watch what happens. The numbness in my legs has mostly disappeared. So who knows, maybe it was just something no one could explain and went away on its own.
I am excited to back to working out; it has been a couple of weeks since I've gone so i will be hurting tomorrow for sure. I was beginning to bike around but it's storming right now and I'm still not back to myself yet.
I have been really enjoying my time with Zoe; she is learning new tricks and also just gives me great company while i'm home all day. I think it might be time to start looking for a job again. I go to the doctor tomorrow (I had some numbness on my left upper back for some reason yesterday) so I'll be able to tell if I'll have time for a job.
My birthday is coming up! I cannot believe that 10 months have already gone by since i got diagnosed and i'll be celebrating my 23rd birthday in Houston, Texas! Janet is being so WONDERFUL and is hosting the party at her house (Jan will be gone on buisness :(). There will be around 10 of us and I decided it will be a wine tasting party (even though I won't be able to drink); it is a requirement for the women to wear a dress and the men to wear a tie. SUIT UP! So excited! It will be held this Thursday at 6:00 pm and dinner will be kalua pork sliders made by the one and only Stan Rollins! My dad gets in on wednesday and my mom and maile come in the following day in the afternoon! I'm so excited to have them here! My dad is here for the ms 150 bike ride that he will be doing this saturday and sunday with my neighbors dan and melissa. We will drive to Austin and meet him there :) busy busy!
anyway I am doing good, feeling about 75% better and ready for action!
i love you all!
-sav
Monday, April 16, 2012
Friday, March 30, 2012
I'm back!
Hi everyone.
It's been a while. I guess I've been avoiding this...though I am not entirely sure why. I guess I want to be done with this whole cancer thing and writing in the blog keeps it alive? Well I can't run away from it and I owe it to everyone to keep you all updated and informed to what's going on in my life. I owe it to you all because you were there for me when I needed you most. So here is what has been happening for the past couple of months.
I have been going to the doctor's less and less as I get healthier and farther into my treatment. I started going back to MDA every two weeks and I have to say it has been WONDERFUL to be there only once every two weeks! My counts have been great and it was finally time for me to look at doing some rehab to get myself back into shape. My doc approved for me to go back to the Train Station where I go with Janet to workout with a trainer twice a week. It's so nice being back there with them and seeing Janet all the time :). I also started going to a chiropractor who specialized in the type of muscle work that I worked with back in Hawaii. This office also had the patients do rehab so after getting worked on I worked with a trainer and did core workouts. The main reason I started going to the chiropractor was because I started getting these weirds spouts of numbness that started in my butt/hips and would quickly go down my legs then disappear. I hoped that with muscle work on my back and the rehab they had me doing to strengthen my back and core would quickly clear this problem up. But even with my working out and getting stronger and being more active this problem only got worse. It was all very strange and both my doctor and chiropractor had no explanation as to why I was getting this numbness. More to that later.
I got a PUPPY!!!!!! One night a neighbor of mine was walking her dogs and me and Cass just happened to run into her and she had the CUTEST puppy EVER with her. We found out that she found the puppy with her mom in a cage on an ant hill abandoned. She was looking for a home for the puppy and I quickly said YES to take her in!! I asked Cassidy first (of course) but there was really no question about it...you couldn't say no to that face! We named her Zoe and we think she is a mix of terrier and possibly pomeranian. She is fluffy and doesn't shed and is so so so cute! I love her and it has been great to have her to take care of while I sit and do nothing all day. I am definitely getting tired of doing nothing all day...
I got to go home! I asked my doctor if I was able to fly to Hawaii and visit for a couple of weeks and he gave me the okay! This was in February when I asked and when I told my parents that I could come home my mom got me a ticket to come home ten days later! I was so excited! Cass sadly had to stay home and take care of the puppy :( The trip home went so smooth; I wore a mask on the plane and at the air port but because it was off season for flying the airports and planes weren't very full. I guess I'm so used to being able to sit and kill time that by the time I got to Hawaii I felt like it had gone by quickly! Being home was really nice; I got to hang out with Maile a lot. My friend Kailie (who came up to visit when I was on Oahu) came up from the Big Island to visit one weekend which was so nice of her to do! It was great to see her and her family again. We had a party at my house for all my Hanai family to come over and see me; it was so amazing to see everyone! It was worth coming home if only to see the people who have supported me through this tiresome journey of mine. Thank you to my mom and dad (we used his miles to get me home) for bringing me home to see everyone! The rest of my stay was pretty mellow; lots of rain, only a couple days at the beach (wearing A LOT of sunscreen) and hanging out with my friend Lani. By the time I had to go back to Houston I was ready to go back...I'm starting to really see it as my home :)
Now back to my numbness in my legs:
The numbness keeps flaring up whenever I look down or bend over; since it was still bothering me a lot (and by bothering me I mean it annoys me that I don't know why it's happening but it doesn't hurt me or cause any pain) I asked my doctor if I could get a MRI to see if they can find anything that is causing this numbness (we had already done a X-RAY and that didn't show anything like a slipped disc). I got the MRI and there was something on it that caused some concern; the dura mater on my cauda equina was slightly enhanced. Basically this means the thick cover on the tail end of my spinal cord is slightly thicker than normal. Apparently this isn't good. To find out if this has affected my cerebral spinal fluid (CSF) I went to get a spinal tap (Lumbar puncture; LP). I was really scared about getting it because I don't get sedated for the procedure so I had Cassidy come with me and hold my hand the whole time :) The procedure itself wasn't bad; the numbing shot hurt the worst and it was just freaky to have a needle draining the fluid out of my spine. Cassidy had done some research to see how I might react to the procedure and everyone was saying that I'll get a headache and I need to be laying down completely flat for the rest of the day if not for the next couple of days. Well, I got a headache alright. If I wasn't laying down my head hurt...and then even when I was laying down flat my head hurt. I took tremedol to try and kill the pain but that stuff does no good! I had the LP on thursday and by sunday I had extreme back pain with a killer headache. I had Cassidy leave work early and take me to the ER. There they had a stretcher waiting for me and they immediately hooked me up to an IV. It got weird and worrisome when I told the doctor there that I couldn't urinate. After hearing that I got admitted to the hospital and a catheter was placed. Cassidy stayed with me the whole time :) The doctors then proceeded to try and find out what was wrong with me. I had another MRI done (which showed nothing) and all the tests from my CSF came back negative. I had insanely bad headaches from the LP and I eventually was able to go to the bathroom on my own again. By Tuesday things were back to normal except for my headaches. My doctor decided to discharge me and give me stronger pain killers for my headaches which should go away in a week...hah. My dad was in Florida during my stay at MDA so I asked if he could come to Houston and visit. He came in Wednesday and is here until Saturday morning. On Thursday we went to my follow-up doctor's appointment to talk about what happened in the hospital. It concerned my doctor a lot that I couldn't go to the bathroom and also that it happened again after I got out of the hospital (Wednesday night). He said this problem is most likely caused by that slight enhancement of my cauda equina. This part of the spinal cord controls your ability to go to the bathroom; since it has been affected by something it has altered my ability to control myself.
This is where it gets a little sad and tricky...
The reason that my spinal cord has a slightly thickened area may be caused by leukemic cells that I originally had when I was first diagnosed. I had so many white blood cells in my blood that some escaped to my spinal cord and didn't die from the chemo and transplant. Now, my bone marrow is still completely clear of cancer and the gene that altered my chromosome to begin with is still gone, but it seems that I may have some leukemic cells to get rid of still. These cells could be the reason I kept getting numbness in my legs or why there is a slight enhancement of my cauda equina. The tricky part is that we can't really test it and be 100% sure. That area is still very delicate since it is my spinal cord and we can't exactly test it...the tests from my CSF are clear and don't show anything but since there is only a little bit of cells then it's possible that they are there but just didn't get picked up. So I'm going to meet with my neurologist, radiologist and stem cell doctor next week to discuss what to do...I think they are thinking of doing radiation on a small part of my back where they think the leukemic cells might be. Not sure yet what the side effects are for that but I think that it's all pretty minimal. Hopefully this "relapse" doesn't last long, we can kill the cells, and I can go back to being cancer free and work towards being healthy again. I was starting to look for a job but I think I have to put that aside for now too.
I hope to write again when I find out more information about the plan to treat this little problem of mine. My parents are coming up in April with Maile so if I haven't written by the 21st of April expect something sometime after that!
Wish me luck
It's been a while. I guess I've been avoiding this...though I am not entirely sure why. I guess I want to be done with this whole cancer thing and writing in the blog keeps it alive? Well I can't run away from it and I owe it to everyone to keep you all updated and informed to what's going on in my life. I owe it to you all because you were there for me when I needed you most. So here is what has been happening for the past couple of months.
I have been going to the doctor's less and less as I get healthier and farther into my treatment. I started going back to MDA every two weeks and I have to say it has been WONDERFUL to be there only once every two weeks! My counts have been great and it was finally time for me to look at doing some rehab to get myself back into shape. My doc approved for me to go back to the Train Station where I go with Janet to workout with a trainer twice a week. It's so nice being back there with them and seeing Janet all the time :). I also started going to a chiropractor who specialized in the type of muscle work that I worked with back in Hawaii. This office also had the patients do rehab so after getting worked on I worked with a trainer and did core workouts. The main reason I started going to the chiropractor was because I started getting these weirds spouts of numbness that started in my butt/hips and would quickly go down my legs then disappear. I hoped that with muscle work on my back and the rehab they had me doing to strengthen my back and core would quickly clear this problem up. But even with my working out and getting stronger and being more active this problem only got worse. It was all very strange and both my doctor and chiropractor had no explanation as to why I was getting this numbness. More to that later.
I got a PUPPY!!!!!! One night a neighbor of mine was walking her dogs and me and Cass just happened to run into her and she had the CUTEST puppy EVER with her. We found out that she found the puppy with her mom in a cage on an ant hill abandoned. She was looking for a home for the puppy and I quickly said YES to take her in!! I asked Cassidy first (of course) but there was really no question about it...you couldn't say no to that face! We named her Zoe and we think she is a mix of terrier and possibly pomeranian. She is fluffy and doesn't shed and is so so so cute! I love her and it has been great to have her to take care of while I sit and do nothing all day. I am definitely getting tired of doing nothing all day...
I got to go home! I asked my doctor if I was able to fly to Hawaii and visit for a couple of weeks and he gave me the okay! This was in February when I asked and when I told my parents that I could come home my mom got me a ticket to come home ten days later! I was so excited! Cass sadly had to stay home and take care of the puppy :( The trip home went so smooth; I wore a mask on the plane and at the air port but because it was off season for flying the airports and planes weren't very full. I guess I'm so used to being able to sit and kill time that by the time I got to Hawaii I felt like it had gone by quickly! Being home was really nice; I got to hang out with Maile a lot. My friend Kailie (who came up to visit when I was on Oahu) came up from the Big Island to visit one weekend which was so nice of her to do! It was great to see her and her family again. We had a party at my house for all my Hanai family to come over and see me; it was so amazing to see everyone! It was worth coming home if only to see the people who have supported me through this tiresome journey of mine. Thank you to my mom and dad (we used his miles to get me home) for bringing me home to see everyone! The rest of my stay was pretty mellow; lots of rain, only a couple days at the beach (wearing A LOT of sunscreen) and hanging out with my friend Lani. By the time I had to go back to Houston I was ready to go back...I'm starting to really see it as my home :)
Now back to my numbness in my legs:
The numbness keeps flaring up whenever I look down or bend over; since it was still bothering me a lot (and by bothering me I mean it annoys me that I don't know why it's happening but it doesn't hurt me or cause any pain) I asked my doctor if I could get a MRI to see if they can find anything that is causing this numbness (we had already done a X-RAY and that didn't show anything like a slipped disc). I got the MRI and there was something on it that caused some concern; the dura mater on my cauda equina was slightly enhanced. Basically this means the thick cover on the tail end of my spinal cord is slightly thicker than normal. Apparently this isn't good. To find out if this has affected my cerebral spinal fluid (CSF) I went to get a spinal tap (Lumbar puncture; LP). I was really scared about getting it because I don't get sedated for the procedure so I had Cassidy come with me and hold my hand the whole time :) The procedure itself wasn't bad; the numbing shot hurt the worst and it was just freaky to have a needle draining the fluid out of my spine. Cassidy had done some research to see how I might react to the procedure and everyone was saying that I'll get a headache and I need to be laying down completely flat for the rest of the day if not for the next couple of days. Well, I got a headache alright. If I wasn't laying down my head hurt...and then even when I was laying down flat my head hurt. I took tremedol to try and kill the pain but that stuff does no good! I had the LP on thursday and by sunday I had extreme back pain with a killer headache. I had Cassidy leave work early and take me to the ER. There they had a stretcher waiting for me and they immediately hooked me up to an IV. It got weird and worrisome when I told the doctor there that I couldn't urinate. After hearing that I got admitted to the hospital and a catheter was placed. Cassidy stayed with me the whole time :) The doctors then proceeded to try and find out what was wrong with me. I had another MRI done (which showed nothing) and all the tests from my CSF came back negative. I had insanely bad headaches from the LP and I eventually was able to go to the bathroom on my own again. By Tuesday things were back to normal except for my headaches. My doctor decided to discharge me and give me stronger pain killers for my headaches which should go away in a week...hah. My dad was in Florida during my stay at MDA so I asked if he could come to Houston and visit. He came in Wednesday and is here until Saturday morning. On Thursday we went to my follow-up doctor's appointment to talk about what happened in the hospital. It concerned my doctor a lot that I couldn't go to the bathroom and also that it happened again after I got out of the hospital (Wednesday night). He said this problem is most likely caused by that slight enhancement of my cauda equina. This part of the spinal cord controls your ability to go to the bathroom; since it has been affected by something it has altered my ability to control myself.
This is where it gets a little sad and tricky...
The reason that my spinal cord has a slightly thickened area may be caused by leukemic cells that I originally had when I was first diagnosed. I had so many white blood cells in my blood that some escaped to my spinal cord and didn't die from the chemo and transplant. Now, my bone marrow is still completely clear of cancer and the gene that altered my chromosome to begin with is still gone, but it seems that I may have some leukemic cells to get rid of still. These cells could be the reason I kept getting numbness in my legs or why there is a slight enhancement of my cauda equina. The tricky part is that we can't really test it and be 100% sure. That area is still very delicate since it is my spinal cord and we can't exactly test it...the tests from my CSF are clear and don't show anything but since there is only a little bit of cells then it's possible that they are there but just didn't get picked up. So I'm going to meet with my neurologist, radiologist and stem cell doctor next week to discuss what to do...I think they are thinking of doing radiation on a small part of my back where they think the leukemic cells might be. Not sure yet what the side effects are for that but I think that it's all pretty minimal. Hopefully this "relapse" doesn't last long, we can kill the cells, and I can go back to being cancer free and work towards being healthy again. I was starting to look for a job but I think I have to put that aside for now too.
I hope to write again when I find out more information about the plan to treat this little problem of mine. My parents are coming up in April with Maile so if I haven't written by the 21st of April expect something sometime after that!
Wish me luck
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