What to say. UGH. Im tired. I can tell my physical therapy 'homework' is doing something. My little legs are tired and shaky. I can tell Ive been working them harder than normal. Im pooped and its only 8:45 am. Im doing therapy 2x a week plus nurses visits in-between. Not sure on the seched yet as we've only had the 2 appts. I think* we have another appointment today. The problem is they set it up same day, which throws a kink in things.
We plan on taking Elliot trick or treating for the first time tonight! He is going to be a ninja turtle. (prepare yourself for pictures later) Granted, this is all if I feel up to it. If I do go, Ill be pushed in my wheel chair. I theres no way I could go without. Not with the way my legs are. Either way Elliot and Eric will go. If I can't, Ill stay at the house with a brother or sister in law aka Cassandra sitter.
Other than that we are relaxing during the days. I take naps, do therapy, and try to be 'normal' while recouping. I haven't been out of the house since my last doc appt. It wipes me completely to leave. Todays venture to my sister in laws for trick or treating will wipe me until sunday most likely. Its crazy how little will take all my energy and how long it takes to get it back. Im excited to trick or treat though. I know its still not a guarantee that Ill be able to go, but Im crossing my fingers.
Pictures latere!!!
October 31, 2013
October 29, 2013
Day #1 Physical Therapy Check!
Day 1 of physical therapy is done. Im not sure what I expected, but we got it done. I have some homework to do before our next visit. This first time they just accessed what needed work and where to start. We are thinking within 4 weeks I should be where I would like to be. (at least able to get out of a chair unassisted) If not sooner! We are also going to be able to use the gear we have here at home (bow flex, etc) once I get some more strength. I will be seeing the therapist 2x a week as of right now.
Im super excited! Seems like good news. Heck, the day started off good. I was able to step into the shower unassisted! (this is huge) I could have jumped for joy. Its all in the baby steps.
I got 2 flower deliveries earlier this week. My Aunt Kristy, and Aunt Debbie sent me flowers! They are beautiful. They seemed to know when I needed some cheering up after a couple of hard days, and boom, flowers! I really do appreciate the kindness, and thoughtfulness of the people in my life. They didn't have to do the flowers, but the thought was touching.
I did have a funny moment today I thought Id share. Things you never thought Id say "guess Ill draw eyebrows on today for the physical therapy person"…… hahaha. (Ive been skipping makeup due to my sensitive skin)
(on a side note) My food intake is getting better. For some reason chocolate is still out, but I test it daily. Im ready to be able to eat some of those m&ms! Ive been able to eat almost anything else though. My mouth is really healing up well. My lips are halfway healed. The problem is at night. I guess Im a violent sleeper. I always seem to whack my lip in the middle of the night re-opening the wound. Either way its progress. So today Im doing pretty good. Today is a good day. Hope everyone else has a good day too!
Im super excited! Seems like good news. Heck, the day started off good. I was able to step into the shower unassisted! (this is huge) I could have jumped for joy. Its all in the baby steps.
I got 2 flower deliveries earlier this week. My Aunt Kristy, and Aunt Debbie sent me flowers! They are beautiful. They seemed to know when I needed some cheering up after a couple of hard days, and boom, flowers! I really do appreciate the kindness, and thoughtfulness of the people in my life. They didn't have to do the flowers, but the thought was touching.
I did have a funny moment today I thought Id share. Things you never thought Id say "guess Ill draw eyebrows on today for the physical therapy person"…… hahaha. (Ive been skipping makeup due to my sensitive skin)
(on a side note) My food intake is getting better. For some reason chocolate is still out, but I test it daily. Im ready to be able to eat some of those m&ms! Ive been able to eat almost anything else though. My mouth is really healing up well. My lips are halfway healed. The problem is at night. I guess Im a violent sleeper. I always seem to whack my lip in the middle of the night re-opening the wound. Either way its progress. So today Im doing pretty good. Today is a good day. Hope everyone else has a good day too!
October 28, 2013
Monday Monday
So today we were supposed to start in home physical therapy. To my disappointment we were stood up. There was some confusion between the health nurse and the therapist and no one showed up for the appointment today. Well no one except for me (since its in my home). I am/was disappointed. I was hoping to finally get some progress made to strengthening my legs etc. So we try again tomorrow.
The weekend was very relaxing. We have been staying in and just trying to recover still. So far my eating has gotten much better. I still can't eat but certain foods (chocolate) or some other high sodium foods. Other foods Ive been able to get down. Ive also been able to cut my pain pills in half. Overall, it I am getting better. Now just to start the physical therapy. Hopefully, that will start tomorrow.
The weekend was very relaxing. We have been staying in and just trying to recover still. So far my eating has gotten much better. I still can't eat but certain foods (chocolate) or some other high sodium foods. Other foods Ive been able to get down. Ive also been able to cut my pain pills in half. Overall, it I am getting better. Now just to start the physical therapy. Hopefully, that will start tomorrow.
October 23, 2013
Good NEWS
We saw the doctor yesterday! Officially everything shrank. My brain tumors all of them shrank and are stable. There isnt anything else in my body right now either!!! So as of right now we are working on healing from the Zelberoft. So before we work on anything else we are going to heal. Im working on healing the ulcures in my mouthm along with my lips, and throat. Thats about 2 weeks, then we will revisit the doctors and see about changing the dose on my Zelberaft to where we dont have these side effects, yet we keep the tumors stable.
Today is the first day we have been without extra fluids from the oncologist office. So we are having some improvement. I am expecting a phone call from a physical thereapist as well. They are coming to the house to help me gain the strength back in my legs. Right now I dont walk very well, and cant even get out of the recliner by myself. To be brutally honest, I cant even get off the potty by myself. That requires help. Im 100% totally dependent on Eric to help me do everything. Heck my skin is so sensitive Its just flacking away. Water on it daily is too harsh. Its a slow process. Im trying to recover as best we can.
I can still only eat very little foods. Sodium hurts my lips/mouth/tounge. So its taking getting creative thinking on what I can eat. It tends to change daily. Its just a trial and error process. So thats where we are at.
Today is the first day we have been without extra fluids from the oncologist office. So we are having some improvement. I am expecting a phone call from a physical thereapist as well. They are coming to the house to help me gain the strength back in my legs. Right now I dont walk very well, and cant even get out of the recliner by myself. To be brutally honest, I cant even get off the potty by myself. That requires help. Im 100% totally dependent on Eric to help me do everything. Heck my skin is so sensitive Its just flacking away. Water on it daily is too harsh. Its a slow process. Im trying to recover as best we can.
I can still only eat very little foods. Sodium hurts my lips/mouth/tounge. So its taking getting creative thinking on what I can eat. It tends to change daily. Its just a trial and error process. So thats where we are at.
October 18, 2013
Great News!!
Yesterday was scan day. They were extra nice and called us last night with same day results. My brain looks stable!!! No growth and no new tumors! The spots in my abdomen are completely gone as well. This means the zelberaft worked and completely got rid of the spots in my tummy!! The brain is the result of the whole brain radiation. So we are good!!!
They are looking at clinical trials now to see what else we can do. Right now we are not doing anything other than still hearing. I still cant eat, due to severe ulcers in my mouth and tounge. They have me going for daily fluids which wipes me out. I just sleep most days since I cant eat or drink. I am starting to feel better though. I feel good after the fluids, but have to nap. All I do is seem to sleep.
We are very excited with this news, just trying to heal at this time. We talk to the doctor next week to see what our options are, and what we think we will do next. As soon as we know any new info you guys will also know. :)
Im still very very weak (due to no food) I have to have Eric help me walk, and I cant even get out of the recliner without help these days. It is a temporary side effect of all the drugs, and lack of food. Soon that should resolve itself as we keep getting getter.
I still need your prayers so please keep praying for me. Your kind words and prayers keep me going. Love you guys. YAY for good news!!!
They are looking at clinical trials now to see what else we can do. Right now we are not doing anything other than still hearing. I still cant eat, due to severe ulcers in my mouth and tounge. They have me going for daily fluids which wipes me out. I just sleep most days since I cant eat or drink. I am starting to feel better though. I feel good after the fluids, but have to nap. All I do is seem to sleep.
We are very excited with this news, just trying to heal at this time. We talk to the doctor next week to see what our options are, and what we think we will do next. As soon as we know any new info you guys will also know. :)
Im still very very weak (due to no food) I have to have Eric help me walk, and I cant even get out of the recliner without help these days. It is a temporary side effect of all the drugs, and lack of food. Soon that should resolve itself as we keep getting getter.
I still need your prayers so please keep praying for me. Your kind words and prayers keep me going. Love you guys. YAY for good news!!!
October 15, 2013
What a Tuesday
I woke up and said "ENPUGH!" I as plain tired of my lips hurting/ and mouth hurting so bad I couldnt sleep or eat. So I called the doctor. They sent me asap to an ENT to be checked out. The ENT prescribed a bunch of meds to help heal everything, which was an almost immediate relief. Im not sure why I didnt just yell sooner.
I havent been eating or drinking lately either. So on my 'enough' call my oncologist sent me for IV fluids with loads of vitamins in them as I was dehydrated. They aslo demanded i come in daily for the next 5 days for the same treatment. I tell you what, 2 hours of IV fluids makes a HUGE difference in how a person feels. Im already felling a ton better. Not nearly as sleepy. I was falling asleep mid conversations etc. I also managed to get 8 hours of uninterrupted sleep last night! Means that medicine is really staring to wear off. Im finally seeing the light at the end of the tunnel for getting this out of my system and back to recovery.
Im still very very weak, and need lots of help to get around. We had to use my new wheelchair yesterday to get around. It really was handy and worked well. My legs just dont work due to the steroids and Zelberoft. This should slowly resolve itself a bit. Ill alsways be weak due to the tumors, just shouldnt be this weak.
They had to push my new scans to later this week due to my blood sugar being low. I should have a new set of scans done Thursday to see how the tumors reacted to the meds. We will know at that time if we need to continue the meds, or stop and try something else. So that is where we stand. Prayers are appreciated, as we have some big things ahead of us these next few days. Staying positive enough can grind on a person when you cant eat or drink anything. (Add that to staring at your favorite M&M's staring at you that you cant eat.....torture!!!!) :)
I havent been eating or drinking lately either. So on my 'enough' call my oncologist sent me for IV fluids with loads of vitamins in them as I was dehydrated. They aslo demanded i come in daily for the next 5 days for the same treatment. I tell you what, 2 hours of IV fluids makes a HUGE difference in how a person feels. Im already felling a ton better. Not nearly as sleepy. I was falling asleep mid conversations etc. I also managed to get 8 hours of uninterrupted sleep last night! Means that medicine is really staring to wear off. Im finally seeing the light at the end of the tunnel for getting this out of my system and back to recovery.
Im still very very weak, and need lots of help to get around. We had to use my new wheelchair yesterday to get around. It really was handy and worked well. My legs just dont work due to the steroids and Zelberoft. This should slowly resolve itself a bit. Ill alsways be weak due to the tumors, just shouldnt be this weak.
They had to push my new scans to later this week due to my blood sugar being low. I should have a new set of scans done Thursday to see how the tumors reacted to the meds. We will know at that time if we need to continue the meds, or stop and try something else. So that is where we stand. Prayers are appreciated, as we have some big things ahead of us these next few days. Staying positive enough can grind on a person when you cant eat or drink anything. (Add that to staring at your favorite M&M's staring at you that you cant eat.....torture!!!!) :)
October 12, 2013
Healing
Ive taken the past 2 (now 3) days just to heal. All Ive done is stay in bed or the recliner and no move. Since the doc took me off the Zelberaft Ive hardly been able to keep my eyes open. This is just part of gettin git all out of my system is what Im told.
When I am awake Im still off my feet due to the bottoms are still blistered. Those are getting better but are still painful. I also still have throat pain, so i havent been able to eat anything but string cheese. Luckily I already have that in bulk as Elliot loves it. :) Also Jelo.
So now my prime napping show is on....football. :)
When I am awake Im still off my feet due to the bottoms are still blistered. Those are getting better but are still painful. I also still have throat pain, so i havent been able to eat anything but string cheese. Luckily I already have that in bulk as Elliot loves it. :) Also Jelo.
So now my prime napping show is on....football. :)
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