I had a pretty awesome day today, if I do say so myself. I got to go on a date with my hubby! First date we have been on in a very long time. I joked while in the car that its the first time we've been alone, and not headed to a doctors appointment or treatment. We dropped the baby off at my moms, then we were on our way. We started our trip at the revenue office. (romantic right?) Did our errands there, then lunch then a movie! I can say the last time I saw a movie with my hubby was before Elliot was born. So its been a while.
I learned a few things during our outing today. Stadium theater seating stinks when you have to walk up stairs. I still don't have much strength in my legs, so stairs are challenging and sometimes impossible. We only went up 5 steps and I was done. I couldn't pick my foot up anymore. Another lesson was movies give me headaches. I guess its the loud noise or something. So basically my legs are killing me, and I have a splitting headache. That said, I had a really good time just spending time alone with Eric.
We were very blessed that my mom was able to watch Elliot today so we could go out. Tomorrow I think we will venture out again. Im ready to get my christmas shopping done. Well that, and the fact Ive been cooped up here due to snow for a week. Im so ready to be out and about.
December 11, 2013
December 10, 2013
Another Snowed in Tuesday
We met our social worker and hospice nurse yesterday. They braved the ice and cold to get our meet-and greet out of the way. Luckily, I like both of them. They were easy to talk to, and didn't give me that creepy vibe the guy nurse originally did. (Eric liked him just fine, but I had a weird vibe from him). As of right now we will only have the nurse in 1x a week. We will up the visits as time goes on, and as needed. So far we don't need much as we started this journey early. They take care of all my meds (including going to the pharmacy!!) so all I have to do is request more, and they will have them delivered. Talk about easy. Seems Eric and I are weekly having to go to the pharmacy.
Im not sure whats up lately with my little one. He prefers his dad to feed him. At lunch today he found it funny to throw his food at me, and all over my nice, clean, freshly mopped floor. (lovely) AND then….he laughed. Little boys and their phases. I know he's not 2 yet, but I swear there are times he's in his terrible 2 stage already. He's very sweet about other things. For instance, he will run up and hug us or kiss us randomly, but boy he has his moments.
Everyone is asking how Im doing, and Im doing okay. Im still having my headaches, but they are manageable. I still can't eat much but Im eating many small meals a day. I feel good. Im excited for upcoming trips with family (depending on weather) and other little things we have planned in the next month. Christmas is my favorite time of year, so Im blessed to be able to be here for likely my last christmas. We are getting Elliots picture with santa this weekend. I might sneak one in too!!!
Im not sure whats up lately with my little one. He prefers his dad to feed him. At lunch today he found it funny to throw his food at me, and all over my nice, clean, freshly mopped floor. (lovely) AND then….he laughed. Little boys and their phases. I know he's not 2 yet, but I swear there are times he's in his terrible 2 stage already. He's very sweet about other things. For instance, he will run up and hug us or kiss us randomly, but boy he has his moments.
Everyone is asking how Im doing, and Im doing okay. Im still having my headaches, but they are manageable. I still can't eat much but Im eating many small meals a day. I feel good. Im excited for upcoming trips with family (depending on weather) and other little things we have planned in the next month. Christmas is my favorite time of year, so Im blessed to be able to be here for likely my last christmas. We are getting Elliots picture with santa this weekend. I might sneak one in too!!!
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| That grin…just a bit ornery. |
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| This day he screamed bloody murder for his teddy. Once he got it? All smiles. |
December 8, 2013
Snow
I love the snow. Its horrible if you have to work, but if you can stay home and just enjoy it, its awesome. When the snow started to fall around midnight (a few days ago) Eric came in and woke me up, and took me outside. We got to watch the first snowfall of this winter. It was romantic and cold lol. I actually didn't mind getting woken up in the wee hours of the morning to spend a quiet moment with my husband.
Elliot loves to stare out the window at the snow. Sarge (the dog) loves playing in it, but comes in quick due to the cold. Everyone in my house loves the snow. That said, Im ready for the roads to clear off so I can get out of the house! I have things to do!!! I want to go on a date with my hubby. I have christmas shopping to do as well. Now more than ever I feel like times a wasting. We have a mini trip planned for this weekend. Im so excited to spend a weekend away with family.
Im trying to keep my mind off everything. Its really hard to wrap your head around the fact you're dying, when today Ive been pain free and feeling normal. Eric noticed my hair is growing back…..baby blonde. Random observations have new meanings now. Like the hair…Ill never get to see how it grows back in. Which the blonde sounds like a fun color to have.
Ill let you all know how my 'team' meeting goes tomorrow. I know it will be a bit awkward. Ive already been told Im not the average hospice patient. I will be a learning experience for my team. So far they expect a much older patient, then get awkward when they realize Im the patient. Hope they are prepared for a very stubborn, tough cookie that I am. My goal is for them to have to put up with me for a while :)
Elliot loves to stare out the window at the snow. Sarge (the dog) loves playing in it, but comes in quick due to the cold. Everyone in my house loves the snow. That said, Im ready for the roads to clear off so I can get out of the house! I have things to do!!! I want to go on a date with my hubby. I have christmas shopping to do as well. Now more than ever I feel like times a wasting. We have a mini trip planned for this weekend. Im so excited to spend a weekend away with family.
Im trying to keep my mind off everything. Its really hard to wrap your head around the fact you're dying, when today Ive been pain free and feeling normal. Eric noticed my hair is growing back…..baby blonde. Random observations have new meanings now. Like the hair…Ill never get to see how it grows back in. Which the blonde sounds like a fun color to have.
Ill let you all know how my 'team' meeting goes tomorrow. I know it will be a bit awkward. Ive already been told Im not the average hospice patient. I will be a learning experience for my team. So far they expect a much older patient, then get awkward when they realize Im the patient. Hope they are prepared for a very stubborn, tough cookie that I am. My goal is for them to have to put up with me for a while :)
December 7, 2013
Day #1 Hospice
Hospice came out to the house yesterday. They stayed for well over an hour. They had us filling out paperwork of all kinds. There were questions that Eric and I realized we shouldn't have to answer at 28 yrs old. Questions we hadn't yet thought about….Funeral homes? Living wills…who pulls the plug? who pulls the plug if #1 plug puller is incapacitated? :) All sorts of crazy questions. Necessary, but crazy to think about. (they even took notes on the dog!!!)
So while here they looked around. Made sure we had running water, heat, air etc. Apparently some people bring in hospice and don't have even the basic necessities. Since Ill be staying home (as long as its possible) they had to check out the conditions they are working in.
I will have a team of people helping me through this. I will have a social worker, nurse, volunteers from hospice, a new team of doctors and a Chaplin. I will meet my team monday. From the sounds of it, I will have people here checking on my status daily.
Now to make sure everyone knows what Hospice is. They only provide palliative care. Its not curative care. They are basically just keeping me pain free and comfortable. They also provide counseling for the family and patient. Even spiritual counseling if the patient desires. They do in home, and if you cannot be cared for in home, they have a facility thats not a hospital that you can stay in. It seems that they cover all bases.
So that is where we are. Walking into uncharted territory for us. We are doing okay, still processing it all. I won't lie tears come at random times, but we are coping. We knew this stage would come. Doctors are still shocked Ive hung on this long. Now we take it a day at a time, and live life to the fullest.
So while here they looked around. Made sure we had running water, heat, air etc. Apparently some people bring in hospice and don't have even the basic necessities. Since Ill be staying home (as long as its possible) they had to check out the conditions they are working in.
I will have a team of people helping me through this. I will have a social worker, nurse, volunteers from hospice, a new team of doctors and a Chaplin. I will meet my team monday. From the sounds of it, I will have people here checking on my status daily.
Now to make sure everyone knows what Hospice is. They only provide palliative care. Its not curative care. They are basically just keeping me pain free and comfortable. They also provide counseling for the family and patient. Even spiritual counseling if the patient desires. They do in home, and if you cannot be cared for in home, they have a facility thats not a hospital that you can stay in. It seems that they cover all bases.
So that is where we are. Walking into uncharted territory for us. We are doing okay, still processing it all. I won't lie tears come at random times, but we are coping. We knew this stage would come. Doctors are still shocked Ive hung on this long. Now we take it a day at a time, and live life to the fullest.
December 4, 2013
Another Step of the Journey….
We knew this day was coming. My scan results showed that my brain tumors are growing again. The tumor in my spine stayed the same size, and there are no new tumors in my body. The cancer growth means the new meds are not working. There is nothing left medically to do at this point. My doctor transferred my care to Hospice as of today.
Hospice is going to take over now. The doctor said timeline wise we are at 2-6 weeks or maybe 6 months. Ive been getting stronger and responding well to physical therapy so he thinks that will help give me more time. No one knows the exact time of how long we have. All they can do is guess. At this point we've done everything we can do to buy more time. We are at the point that hospice will just be keeping me pain free and comfortable.
These next few days and weeks are going to be spent with family. We are taking time to process the news. Like I said we knew this day would come, but its still hard to hear and process. I appreciate your thoughts and prayers for my family.
Hospice is going to take over now. The doctor said timeline wise we are at 2-6 weeks or maybe 6 months. Ive been getting stronger and responding well to physical therapy so he thinks that will help give me more time. No one knows the exact time of how long we have. All they can do is guess. At this point we've done everything we can do to buy more time. We are at the point that hospice will just be keeping me pain free and comfortable.
These next few days and weeks are going to be spent with family. We are taking time to process the news. Like I said we knew this day would come, but its still hard to hear and process. I appreciate your thoughts and prayers for my family.
December 2, 2013
Scan Day
Today was scan day. I spent all day getting scans done, not getting to eat until 2:30-3:00 ish. It was a looooong morning. Im lucky as I enjoy talking to the ladies that run my tests. (stinks that I have to see them due to my situation, but at least they are pleasant company)
After arriving home I had to stay away from the baby. Elliot was not pleased with knowing I was in the house but locked away. Im still radioactive so no caring for baby for a few more hours. It didn't help that he was a cranky butt today. All he wanted was to hang on mom. Makes me feel good to be wanted, but having a toddler attached to you all day gets old.
We find out the results of the tests wednesday morning. So I won't have any new news until then. The hardest part is the waiting. Im a bit worried this go around. My daily headaches are back, along with the numbness in my hands. To me it means there are changes to the tumors causing the pain again. Im not a doctor or anything. It just feels like it did before we had radiation again. We are just trying to think positively and keep our minds off the scan results.
My physical therapy people are at it again. They stood me up at my last appointment. They just didn't show up. They also never called, or reset my appointment. Ive decided Im going to call them tomorrow to see whats up. I gave them all day today to call me (as today was my normal pt day) but they didn't call or show. So now thats 2 appointments missed. They are terrible about giving notification. Seems like Im lucky to get them to come out at all. I still need pt work though. While Im walking better I still struggle with things like sitting up in bed, rolling over, getting out of some chairs etc. So the pt is helping but I don think I'm ready to abandon it. Im getting strongr daily, so thats a good thing. I just have to keep up doing the homework they assigned me. Must get stronger!!!
After arriving home I had to stay away from the baby. Elliot was not pleased with knowing I was in the house but locked away. Im still radioactive so no caring for baby for a few more hours. It didn't help that he was a cranky butt today. All he wanted was to hang on mom. Makes me feel good to be wanted, but having a toddler attached to you all day gets old.
We find out the results of the tests wednesday morning. So I won't have any new news until then. The hardest part is the waiting. Im a bit worried this go around. My daily headaches are back, along with the numbness in my hands. To me it means there are changes to the tumors causing the pain again. Im not a doctor or anything. It just feels like it did before we had radiation again. We are just trying to think positively and keep our minds off the scan results.
My physical therapy people are at it again. They stood me up at my last appointment. They just didn't show up. They also never called, or reset my appointment. Ive decided Im going to call them tomorrow to see whats up. I gave them all day today to call me (as today was my normal pt day) but they didn't call or show. So now thats 2 appointments missed. They are terrible about giving notification. Seems like Im lucky to get them to come out at all. I still need pt work though. While Im walking better I still struggle with things like sitting up in bed, rolling over, getting out of some chairs etc. So the pt is helping but I don think I'm ready to abandon it. Im getting strongr daily, so thats a good thing. I just have to keep up doing the homework they assigned me. Must get stronger!!!
December 1, 2013
Oh Christmas tree...
We put up our christmas tree this weekend. Elliot is pretty good with it except for today. His newest trick is to grab an ornament and 'trade' it for a toy. Its amusing to watch. To be fair he's stealing my airplane ornaments. They are not easily breakable, so he's doing no harm. He finally realized he just isn't allowed to touch the tree. All is good for now……until he comes up with another plan.
During nap time I got out my wreath stuff to revamp my christmas wreath. After an hour of hot glue, glitter, and making a giant mess I was done. I had Eric come with me to hang our new wreath on the door. That was when we discovered a flaw…. my awesome new wreath was/is too fat for the door!!! It doesn't fit between my door and glass storm door. So for now its on our mantel, and I have an excuse to get another wreath! I just have to remember nothing too thick or poofy.
Other than that Im doing good today. I do have a headache that I had to take some meds for, but doing pretty good other than that. I have my scans tomorrow morning bright and early. Im nervous about them. I know there really is no reason to be nervous. I won't know anything until wednesday, no reason to be nervous for the scan part. The waiting is the crummy part.
During nap time I got out my wreath stuff to revamp my christmas wreath. After an hour of hot glue, glitter, and making a giant mess I was done. I had Eric come with me to hang our new wreath on the door. That was when we discovered a flaw…. my awesome new wreath was/is too fat for the door!!! It doesn't fit between my door and glass storm door. So for now its on our mantel, and I have an excuse to get another wreath! I just have to remember nothing too thick or poofy.
Other than that Im doing good today. I do have a headache that I had to take some meds for, but doing pretty good other than that. I have my scans tomorrow morning bright and early. Im nervous about them. I know there really is no reason to be nervous. I won't know anything until wednesday, no reason to be nervous for the scan part. The waiting is the crummy part.
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