Happy New Years Eve!

Its been an interesting few days. Ive had a steady headache since christmas. We met with my nurse today and got a new script set up to hopefully help my pain. Im hoping that it will get everything back under control. Time will only tell. Problem with it all is that they increased my steroids again, so no sleep for this chick!

I have managed to get a lot of housework done with all this new found time and energy! I even went on a girls lunch with my mom and grandmother Monday. It was nice getting out and enjoying a quiet lunch. I love my boys, but sometimes a girl needs a break. Girly conversation really does wonders for the soul. I try to do a girls get together with a friend once a week. I really don't know what Id do without them. They take time from their busy lives to throw me a lifeline at times.

So as far as the new year goes, I don't have any resolutions per say. Its just my typical live every day to the fullest mantra. I plan on trying to eat a bit healthier. (my current meal plan could use improvement) As Ive just been eating literally whatever sounds good. (gummy bears for dinner?) So other than that I don't have much. Stay close to family. Spend time loving my little boy. Its what we all should do. Just spend a year focused on loving and appreciating each other.

Christmas

I hope everyone had a good christmas. My family and I did! We spent time with my family and my husbands family. I overdid it as usual, but it was worth it. Seeing the nieces and nephews opening gifts, and our white elephant exchanges go off was fun. I always enjoy time with my family. I truly believe I lucked out in that department. Its never a burden to hang out, or spend time with them. It makes the holidays so much more enjoyable to not dreads going somewhere.

All that said, I know whats on everyones mind this year. At the back of all our minds is that this is most likely my last christmas. Which really sucks to think about, in all honesty. There isn't a better word for it. Ive thought about it a lot these past few days. My son is terrified of paper (which makes opening gifts a nightmare for him). Will I ever see the day he enjoys opening a gift?? I mean he loves his gifts this year, but how much can a 19 month old understand? So my motto was to take what I can get, and enjoy the moment. This could technically be ALL of our last christmas's. We don't know what is in store for us. Why worry about tomorrow, when today I have energy and can play pirate with my kid.

Elliots favorite toy is his new pirate ship. He loves it. Ive never seen him sit down and become so attached to a toy. He played with it for 2 hours straight christmas, and all day today. He got a ton of other great toys too. I myself got my Zombie lawn gnomes. Im excited to put them out in my flowers! (thanks mom!!!)

I will admit that I went ahead and put up our tree today. Maybe bah humbug of me, but Elliot was all up in it, and I was tired of fighting him for ornaments. Its much easier having it put up than it is shedding everywhere, and having a toddler trying to climb it.

Overall, I think I handled christmas well. Its my favorite time of year. Ive had my depressing moments with it, but once more Im looking toward the bright side. Dwelling on the negative doesn't get us anywhere. For me and my family we are focusing on today, we don't have time to worry about tomorrow.

On our way to Grams and Paw Paws!  (Christmas morning)

Playing Mr Potato head. 

Christmas Nap 

We're BAAACCCKKK!

What a superb trip! I got to do everything I wanted. We toured a wax museum, the titanic exhibit, saw santa, toured the lights, and even got some shopping done. I even figured out some food that I can keep down. (win win!!)

Elliot had a blast. He didn't cry with santa, and enjoyed watching the christmas parade. The lights were beautiful. He even got to get some new clothes, and a new tractor toy. Paw paw got him a john deer tractor. E-man toted that thing everywhere. He loves his new toy. He was very sweet and well behaved during the trip. It took him a big of cuddling in bed to get  him to sleep at night. There is nothing like having your toddler roll over and kiss you on the cheek, then just pass out asleep. Or when he strokes my chest to fall asleep. I love it!

Im glad we took the wheel chair. I needed it more than I thought I would. Eric got quite the workout pushing me up and down hills at silver dollar city. His legs are sore!!! I couldn't have walked it, no way no how. The chair also allowed us to go shopping, and go thru the wax museum. I couldn't have done it without it.

We got some great pictures of the trip. I also got to spend the past few days with my parents, in-laws, sister in law, and brother in law. I cannot express how happy I am that both of our families get along so well. I really did marry into a great family. The fact that they all got together so I could get my christmas wish is amazing to me. I always enjoy spending time with them, but with this time of year for them to drop everything really touches my heart. I love you guys!!!

Now for your enjoyment….pictures. I look a bit fluffy thanks to my new white coat! But its WARM!!!

New truck!! 

He was more interested in staring at Santa. 

This was his fav spot. Right in the middle of bed with us. (he did end up sleeping in his pack-n-play)

Me and Forrest Gump!

Eric, me, and the Terminator! 

Our gang! Me & Elliot rollin in style. 

Packing

What a busy day! I spent the day yesterday packing, seeing my hospice team, and just over all getting ready for our trip. I did discover that when on hospice more packing and stuff is involved. I have an  emergency med kit, my normal meds to take, and paperwork that has to be on hand at all times. Add that to the "remember to pack" list and just the meds start to fill a bag.

The visit with my nurse went well. They are changing up some meds too hopefully help my headaches. Ive been suffering from their return all week. So for now we go back on the steroids, and are trying a new pain killer. We will test it and see how it works for me. I really cannot explain hope much I loathe steroids. hate hate hate hate them. At the same time if they help my headaches, then I guess Ill try them again.

I felt like we won the lotto today. We had 2 cases of little debbie snacks basically fall into our laps. We really really really appreciate them. (not that I don't have enough sweets already….I still have bags of m&ms) I have enough sweets to last a very long time at this point. But Im not refusing my favorite snacks…who in their right mind would!??? So my thanks goes out to those than supplied the snacks.

We have loads of things planned that I can't wait to do on our trip. I just have to remember to not over do it, and just take it slow. I don't want to come back and sleep thru christmas due to a simple family trip. :)

Over did it again...

We woke up bright and early this morning to take may Aunt up on a breakfast offer. Home cooked pan cakes with real maple syrup, bacon, eggs, orange juice and hot chocolate. YUMMY! That said, all I could manage to eat was the bacon. I really do hate this whole changed of taste thing. It really screws with my social life. Nothing tasted good today except water.

It was an awesome time at my Aunts house. Little man went roaming around her new home. I foresee him having many fun times there. They have a tree house, pool, quest room has a loft….good times in store for any kid. The best part is??? They finally live close enough for more visits! (they just moved back from across the state) I always had fun spending time at my aunts house as a kid. I hope Elliot gets a chance to do the same.

After my Aunts house, we finished our christmas shopping. I am officially done except for one tiny gift, that is a quick pickup. Im so glad to be pretty much done. After shopping we ended the day with dinner at my parents. WHEW…. what a day.

You would think with not really eating anything all day I would be hungry for dinner….wrong. I thought I was going to be sick. I even took nausea medicine before we got there. I couldn't eat. Once again all I could get down was water. Now? Im eating Cool Ranch Doritos just fine. Nothing else even sounds good. Go figure.

That said I over did it today. I came home and went straight to bed. This is my 11 pm wakeup with doritos. Luckily not nauseous anymore, but still have a headache. My legs are weak and shaky from being up all day and eyes hurt too. So there is my update. Had a blast, but paying for it now. :)

Rant

Im angry. I ordered a coat last week, and chose 2 day shipping. It has been 8 days and I have yet to get my coat delivered. Fed-ex keeps saying "local delivery not attempted". Yet, I saw the fed-ex truck drive by at 6pm tonight. Down my street, turn around and leave. So why can they not stop and drop off my tiny box?

I ordered the coat since I didn't have a winter coat that fit right. I needed a warm coat for our trip to Branson. (that trip has been postponed due to weather) That said, I still want the coat I paid extra for. I had the option for free shipping, but paid more to have it here. So Im mad. I even called customer service and complained. Basically they said since the weather has been bad they won't refund my $$. But they have no excuse for it not arriving today. So that is my rant for the day.

Date Day!

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.

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!!!

That grin…just a bit ornery. 

This day he screamed bloody murder for his teddy. Once he got it? All smiles. 

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 :)

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.

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.

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!!!

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.