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.

Turkey Weekend!

We had a lovely thanksgiving spent with family. I will say that by the end I had a slight headache and was ready for a nap. (but I think everyone was ready for a nap) Now Im not a turkey fan. (I know I know crazy) so I didn't actually eat any turkey, but the rest of the food my sister-in-law made was amazing. Mr. Elliot tried to eat his weight in mashed potatoes, and stuffing. (probably his 2 fav foods). Everything was amazing. Im happy I was feeling well enough to attend.

Yesterday we put up the christmas tree. I love love love christmas. Its my favorite holiday, and not for the gifts etc. I love the time spent with family. I love the lights, putting up a tree, the events and so much more. So we managed to get our tree up, and its the first thing Elliot noticed when he got up. That was when Eric and I realized that we should have listened to my parents…..just put ornaments on the top half of the tree. Its 10am and our tree is already re-decorated lol. He finally started leaving it alone. This of course was after he started putting toys in the tree. (he was trying to hang toys) He seems to like looking at it though.

As for the rest of the weekend? Relaxing. I have scans on monday morning bright and early. We won't know the results until wednesday, so we will have to wait.

Baby its Cold Outside….

BURRRRRR….. I hate the initial cold snap. I love winter, but hate being cold. What a combo. Ive been buried up to my neck, with as many blankets as I can find trying to get warm. Finally, last night I was able to sleep and not feel cold. That said, I think most of it had to do with me being sick for the past 7 days. 

So the reason for my lack of posts is that Ive been sick. I cancelled my PT appointments for last week. Stayed in bed, slept, and tried to get any food down that I could. I had somehow caught the bug thats going around. Im feeling much better now. Seems like yesterday was the turning point. I woke u p feeling better yesterday. My new PT guy even came out to the house and did my PT. Today I feel even better. (except my legs are killing me, from my PT workout)

Im cautiously looking forward to thanksgiving. Seems like lately anytime I get excited for something I end up sick as a dog, and can't go. OR go and Im miserable because of overdoing it. Im trying to think positively. Thanksgiving is only a couple days away! (maybe it'll warm up a bit by then)

Day #3

Its day 3 in bed for me. Still feeling crummy. My head has been pounding even with meds. Im okay if I stay in one place. When I get up to move or walk around thats when my head starts to hurt and my stomach start to feel queasy. It seems to have gotten a bit better as of today. That was until I was getting something out of the fridge and managed to hit my head on the cabinet. OWIE!!!! Back to bed for me….

I rescheduled my pt therapy again today. Im still struggling to eat (due to the queasy feeling) with the headache. Headaches are normal we knew this. Doc said basically "yeah your got tumors in your brain". For some reason they just now decided to act back up again. Theres nothing they can do right now for it. Just throw more pain meds at it. (the joys of stage 4 cancer). Good news? I am able to sleep, and get pain relief. Bad part? Im stuck in bed to get said relief.

As always, on a happy note….Elliot has gone back to being 'sweet' to mama. He will just come up and give me kisses without, and with, prompting. The past few weeks he's reused to give me a kiss or even blow me a kiss. He's now swapped it, and will only give me kisses. Daddy doesn't get any!! lol.

Monday-itis

I woke up this morning feeling horrible. I felt as if I had been hit in the head with a sledgehammer, and my stomach coulnt be trusted. I crossed my fingers hoping that since I was late on taking my meds, this was the result. NOPE. Hours later still feeling horrible. Talking makes me want to hurl. Standing up and walking kills my head and tummy. That said, Ive spent the day in bed. I try to get up to even get cleaned up a bit, and have to sit back down asap. I finally realized that my physical therapy appointment just wasn't going to happen today. So I called to cancel it. Ill reschedule it for a time I don't feel terrible.

Now that the pressure is off (no pt) Ive been able to nap without worry of oversleeping. I managed to eat a half a muffin for lunch. (I slept thru breakfast). I realized I need to get a 'breakfast in bed tray'. I always thought they were frivolous, but now Im beginning to see the perks. My next trip to the store may result in a new tray for me. :)

I have to get to feeling better soon. We planned our trip to Branson for friday. Well, one of 2 trips friday. I wanted to go see the old time christmas at silver dollar city. That alone is an all day event. Ill be in my wheelchair for the trip, as there is no possible way I can walk that much. Im just excited to even have the option to go. Just days ago there was no way I could go, as I couldn't even potty without assistance. Granted, with me everything is a tentative plan until how we see what I feel like on said day.

So thats whats up with me. Sick today. Feeling pretty miserable. My lovely tumors reminding me they are still there….

On a lighter note, Elliot said "turtle" today. He saw a ninja turtle and he pointed and goes "turtle!" That was a fun moment. We then proceeded to color the turtle pink. :)

Oncologist visit.

We saw our oncologist yesterday. He is giving me 3 more weeks to heal before we talk about going back on the hard meds. At that time we will see if thats the route we want to stay on, or if there are any other drug options for us to try. (new stuff is approved or goes into trials daily so we keep our options open) Other than that, he is impressed with my healing as it is as of right now. We scheduled my next set of scans for Dec. 2nd. Then we will see the doctor Dec. 4th. So we will be able to see whats happened since we stooped the meds, and see if anythings grown or shrunk. So 3 more weeks of rest! Just what I wanted. (no sarcasm here I want to be back as close to 100% as possible before starting back anything)

I have PT today. (any time now actually) Then I think Im going to take a nap. Im still not feeling great. My tummy has decided to rebel after 1 bite of food or so. It just deciders that Im no longer hungry, and if I push it and try to eat I get nauseous. So Ive been drinking a ton of water. Im thinking this is just a phase of flushing meds out. Ive been weaning off the steroids so they play a part in all this too.

On a lighter note, my dad gets back from China today!! Its nice to have everyone home. We are planning a trip so now we can get that pinned down. Ive got stuff I want to do before the holiday but it involves getting family all pinned down on dates. Between everyone that wants to go, it makes it challenging but we are working on it. My big criteria was to be able to get up out of a chair/toilet by myself before we planned anything. Now, thanks to pt, I can do that! So planning has commenced!!

Now, off to pt for this girl…..another hour of pushing and some mental cursing….

Another Monday

Today we went to the ENT doc. (what fun) He basically told us what we already knew. Im still healing, and the ulcer in my mouth is still there but looking better. He did however notify us that my thrush is back. ICK….and wrote me a new script for the liquid thrush med. Stinks, seems like I can't get rid of this stupid thrush. Im always fighting it.

I spent yesterday in bed. I'm still not 100%. I have some theories on why I don't feel well. I think me battling the thrush has my body going wonders. It likely means Im fighting something bigger. That said we are forcing me to rest. Ive just been spending my time actually in bed napping why I can.

I went ahead and had PT today. Not to brag but……I did awesome!!! I did some pretty hard new excesses and did them better than they expected. My pt girl was super impressed. Heck I was impressed. My strength is really starting to come back. Its really more noticeable when doing my pt. Its really exciting to watch (or it is for me). That said, this stuff isn't easy. Im exhausted after my pt sessions. I get a day to recover then we do it all again!

Bleh

Woke up this morning feeling terrible. The nausea is overwhelming. So I simply rolled over and went back to sleep. This is where I have remained all day, in bed. Ive only moved to go the 5 ft or so to the bathroom. I have been able to keep food down which is good, but my tummy feels like it could rebel at any time. So Im miserable.

I am lucky that Ive been able to stay in bed all day. We had no plans, and Eric was here to watch Elliot. I was able to lock myself in the bedroom and just sleep. I even took some of my prescription anti-nausa meds. (which says a lot as I haven had to take them until now) So far that and pretty much staying laying down is the only think keeping me feeling ok.

It started last night. I tried to eat and nothing tasted the same. I have this issue with a lot of foods. My tastes have changed due to the whole brain radiation. So when my dinner didn't taste like I expected I was upset. I ate one bite. (no it wasn't the food that caused this) Anyway, when I got home I wasn't feeling well so just went to bed. Then on wake up…well here we are.

We have a ENT appointment tomorrow morning to check on my healing. He will check to see how my ulcers have been heeling. I have to be cleared by him and my oncologist before they start my next treatment plan. I expect they tell me another 2 weeks of healing.

Thats it for me today. Im going to attempt to eat. I'll let you know how it goes tomorrow.

Its Saturday!

A day most people spend with their families and sleep in…..Not get woken up to a screaming puppy their neighbors threw outside. RAWR!!!!! Im ready to go give them a piece of my mind. Its very loud, and could wake the entire neighborhood. Its been barking since 6 am, when I assume they got tired of it in the house, but enough of my whining.

We have had so many people help us during this 'journey' I am on. People have given us everything under the sun, donations, food, prayers, gifts, thoughts, conversation, baby sitting, cassandra-sitting, and so much more. Sometimes Im afraid Ive missed a thank you or acknowledgment of how much I appreciate  the generosity or the gifts and everything. Ill admit I have a lot going on. I don't want that to make me seem ungrateful. My family appreciates and is thankful for everything everyone has done. Sometimes Im just lacking on the thank you note department, but yes my mother taught me well. So point of this is Thank You. Im sending out personal thank you cards soon. Better late than never.

Oh Saturday…. today we have nothing really planned. We are visiting and having dinner with my mom later. Other than that its a day of resting and me doing my pt homework. I can tell Im getting stronger daily! My skin is also starting to heal more. (Ive been struggling with my entire skin being so dry it flakes and hurts) Loads of water, a humidifier, and gallons of lotion later….Im finally not looking like some scary flakey monster. Its just turning into quite the successful week. :) Im happy with the results. Now Im starting to plan outings again. What family outing will we do first?? (family= us, in laws, my parents etc)

All Around Blahs

Yesterday was just a blah day for the Schmit house. None of us felt really well (I think we ate something bad) so we put everything off and had a pj day. I napped 90% of the day away, and woke with a massive headache. Problem with me napping? I don't sleep at night. So low and behold last night I didn't sleep well. Good news is seems like we are all feeling better this morning.

So I finally did it! I managed to get up out of the chair without assistance!! (granted it takes me sitting on a pillow, but its a win) My core strength is improving!!! Ive also been able to get up now a little over 75% of the time now off the potty. (this is a HUGE deal for me) My legs are still very weak, but already the pt is working! Im finally starting to get strength back. Granted its likely one reason I'm so tired lately.

My appetite is good. Im able to eat pretty much anything I want. Chocolate still burns my mouth, but I tend to eat it anyway in small quantities :) I can't let those M&Ms go to waste! My lips and other blisters are healing pretty good as well. The bottoms of my feet are almost completely healed. They still hurt in a few places but nothing a soft pair of socks or my uggs can't handle. So far its been an okay week. Today we have pt again, and next week we see the doctor for a checkup. Im excited at the prospect of next week with how far Ive come in this short time.

Lazy Saturdays

I had a nice relaxing saturday. I even managed an uninterrupted long nap. It was perfect. After nap time we went and visited my mom and had our saturday family dinner. I had been craving a few foods and she was nice enough to make them all!!! So we had meatloaf, mac n cheese, mashed potatoes, stuffing, and home made bread!!!! I was in heaven. Luckily, there were leftovers so I got to bring some of the awesomeness home. My mono is so good to me.

Today, we don't have much of anything planned. Just napping, my pt workout and more healing. After even going to visit my mom last night, Im exhausted. Small trips wear me out. So today will likely consist of napping and trying to get energy back.

On a lighter note Ive started to gain some weight back. (its a love hate relationship) I know I need to gain the weight back, as I lost too much at once, but its nice to be at goal 'in shape' weight. Weight gain means that Ill be gaining strength too, so Ill take it. Im just going to start to have to eat a bit healthier. Not as much junk food. Bright side, Im also able to eat real food again. So many perks..

So thats it for now. Sunday is going to be my day of rest…..

Happy Halloween (day after)

We spent Halloween with my sister-in-law, my sister and their kids. Between everyone we had Amelia Erhart, Rosie the Riviter, Hermionie, Capitan America and a ninja turtle in attendance. Pizza and candy woo hook. I even managed to eat a piece! I was planning on taking my wheelchair and going with the kids door to door, but that didn't happen. By the time dinner was over I was too tired to move from the recliner. So I slept in the recliner while the kids went door to door.

I was just so exhausted I couldn't move. Ill admit I was in tears. I was too tired to even walk out to the car. Eric basically had to carry me, I stumbled once and actually did break out into tears. Sometimes its just too much. On the bright side, the reason I was so tired is that Im working hard on my physical therapy so my legs are more shaky than normal. So the bright side is that it means my therapy is working! (stinks about my being tired).

So here are some pictures from last night.

Happy Halloween Morning!

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!!!

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!

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.

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.

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!!!

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!!!!)  :)

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. :)

Doctor Day

The days we got to the doctor are always filled with a bit of anxiety to say the least. We went in to get labs drawn and do the overall check on how Im tolerating treatment. (which we all know the answer to. Not well with all the side affects.)

The good news is, my liver is good, and all my blood work is good.  As for the rest....its been decided that Im to be taken off the Zelberaft for 2 weeks, and hey are moving my scans up to next week. This is due to me having the extreme side. They are stopping so that my body can have a chance to heal, then if the scans show that the zelberaft was working, and Im healed enough, we will start back. This is normal for some patients, and once given a chance to heal the side affects arnt as bad, or dont happen. We are happy with this news. Not only do we get the scans done a few weeks earlier, but a break will be nice.

My wheelchair came in as well! Im happy that now Ill be able to get around much better now. I was/am able to walk short distances with a cane, but now this allows us as a family to do a bit more.

So there it is. Ill take it as a good doc day.

Finally! A good Day!

What a great day. It seems the turn around has begun. ---Be warned now, this may be long---- 

So Ive had issues with eyesight. Id say 98% brain tumor related, 1% prescription drug related, and 1% just bad eyes related. I was told a year ago I would likely be blind. They dont know why I can currently see. So I was piddling around the house and ran across my *ahem* glasses, from when I could see. (I tended not to wear them and go blurry at home after having the baby so I sorta forgot I wore them. ( I know crazy) I slipped those bad boys on and WHOA!!!! I could SEE. Who knew???? So I found the gift of my old glasses, and sight yesterday. This should help some of those head rushes etc. It was an immediate imporvesmen. I am kicking myself for this.

We found out the delays on my wheelchair (they Lost the order) ARGH. It will likely be here today!!! Im super excited to get it, seeing as the blisters on the bottoms of my feet are making it harder and harder to walk. That will help me greatly get around.

My energy level seems to be coming back as well. Im still shakey (that is permanent) My legs still very weak (also permanent) but overall Im sleeping better the past 2 nights so feeling better.

I managed to even get out yesterday and piddle around target!! (I uesed one of their scooter mobile things) I can be a danger to everyone around me in one of those bad boys! There is nothing quite like wandering the 'halls' of Target. I think many women know what I talking about. Sometimes you just have to go to wander. lol. I went with a purpose. (I find funny by the way) I woke up and realized hmmm.....somethings off today. Lets see.....OMG my eyebrows are gone!!!!! HAAHAHAHAAHA took them long enough, So off to get some new makeup so I can look normal. Target was the place to go. So we managed to get me set up to now look as normal as I possibly can. Granted that also resulted in an entire new makeup collection. :) might as well splurge on a new look.

So the turn around has begun. The little things that can be handled are finally falling into place. Im able to get much more sleep, figuring out what I can and cannot eat and my wounds are healing. We are taking it day by day of course. But things are getting better.

Now, all that said there are still some issurees. We see the doctor today. Today is my weekly labs to make sure my liver isnt failing, how Im doing on my Zelberaft, and my overall helth. Im looking forward to what the doc says about my side effects. They may take me off the drug for a week or two to help me heal, but that would take a lot for me. Ive just got this gig figured out.

So there we have it A good Day, Heck a GREAT day! Thank you for all of your thoughts, prayers, and everything you have done for my little family. We are seem to be blessed daily from everything you have done. Just when I dont expect it something else amazing happens. You have shown us that there is a lot of loving good people in the world. That step up without being asked. I have not asked for anything, yet have been provided with so much love. It is all overwhelming at times.

So what Im trying to say is THANK YOU Guys. You have help me smile, and have helped me keep going. Heres to many more GREAT DAYS!!!!!!

Rough Rough Time.

Im not gonna lie, its been a rough few  of days. Ive been battling thrush in my mouth and throat for 2 months now. We have tried everything. Im just now finished a pack of high dose antibiotics which has helped eliminate 99.9% of it. Wooohooo!! I say 99.9 as it left a giant HOLE in my toung. So now we are tying to et that healed. Its so bad I could likey pierce it at this point and not notice. lol. Too bad it s not placed properly for it.

My other issues causeing problems is throat from radiation, blistered bottoms of my feet, and my very very very badly blistered lips. The radiation has caused my throat to be raw and to feel like there is a golf ball stuck in it at all times. So here is a mini run down-

Throat- I have a wash that helps numb. Only lasts so long. This will just be a time thing. It is getting better. Which is awesome!!

Feet- Blistered top and bottom. This is due to the Zelberoft. Its a side effectt. It feels as if Im constantly walking on hard gravel road. So that just plain hurts. There is nothing to be done about it. It just plain sucks.

Toung- This is due to the thrush. Apparently if bad enough the thrush eats your young. Go figure. It is healing just very slowly. And obviously causes eating issues.

Lips- This is the fun one! My lips are entirely blistered and raw. This is brought from My new friend Zelberoft. So I would have been fine had I not listened to my doc on how to fix it. DO NOT use petroleum jelly ever. It actually makes the issue worse. Guess what Mrs. Schmit awas using faithfully?? Freaking petroleum jelly!!!!!!  So  I woke up yesterday/early this morning in tears my lips were on fire. I then looked up the proper way to care for such an issue. Basic Neosporin. NEOSPORIN!!! that is so easy. Once I put it on my lips the world changed. The pain went away. We are finally on the steps to recovery of my poor poor face.

Now all this said.....this has lead to eating issues. (obviously) I cannot currently eat anything salty as it burns my lips too too badly. You would be surprised at how many things have the tiniest amount of salt in them. Chocolate pudding for instance. Once my lips get better this will resolve itself thought. (for some crazy reason candy I can get down and actually sooths my throat. Im living off candy.

I also have trouble swallowing due to the radiation. This means day to day Im figuring out what I can and cannot eat. Some days my throat is better than others. Most of the week Ive lived off of protein shakes that are room temp. I can only do room tempo liquids or food. Too cole hurts, too warm same deal. Some days I cant get any food down, others I can. For a day or so I was able to eat plain chese burgers only (well pattie, cheese only) from wends and mc donalds. They were greasy enough they just fell apart then I could handle it. Now due to salt I cannot. Right now, Im able to eat soft tacos with cheese, sour cream, and some chicken. All of which ends up in the smalles bites ever. Taks me forever to eat .

So there you have it. Im ready for normalcy. This girl likes her food. Plus I cant afford the weight loss. So there is my update. My spirits are still high. I just had to get it off my chest. This just SUCKS. Luckily this stuff is just the temporary part. In a few days (now that we know how to properly fix things) These issues will be gone. Even my feet will heal. All I can ask for are some prayers right now to help me get thru the next few days until I can get this small hurdle over with. Thank you.

The Ride for Cassie

We were blessed to have a charity bike run held for us during Bikes, Blues and BBQ. It was put together by the J.B. Hunt Maintenance Challenge group. They support many different causes throughout the year, and put a ride together in my honor. The group consisted of people all over the US. I was so surprised. Originally, I had thought it something small close friends etc. When I arrived it consisted of so much more.

They had a poker run, and sold t-shirts raising funds. A cool thing about the shirts is they quoted this blog! I didnt realize it until I was told either. Once told, I got teary eyed. Hey, I tend to get cry easily. They were happy/overwheming tears. It was a good thing.  The I came expecting one thing, to find something completely different. There were a ton of bikes! People everywhere. People wearing all black and white. All of them "Ride for Cassie". I immediately teared up. All these people with my name on their backs.  I was speechless. (which is shocking). They presented my family with a check that will greatly help our needs. It was so much more than I could ask for. 

It never ceases to amaze me at the kindness of strangers. They also provided a lovely BBQ lunch. Of which I managed to burn my mouth pretty bad. I learned, when you ask for the hot BBQ sauce its serous stuff. Hey it was the only way I could taste anything due to my taste issues from treatment. Live and learn. Back to the point, is the food was amazing. They had auctioned off BBQ sauce with faces of people from the ride in different flavors. They really put work into every detail. It did not go unnoticed. 

I got to speak to some amazing people as well. It was a blast. I wish I could have visited more. By the end I was being held up by my husband as not to fall over. I am so grateful for the sheer kindness of strangers. They put the entire thing together thinking of my family, and my family cannot thank this group if amazing people enough. They keep opening their hearts, and I have no way to repay them other than a simple thank you. Throughout this entire process Ive had to humble myself and realize that thank you has to be enough. So thank you. Thank you for all that did this for me. Thank you for your time, effort and love.

A lot of companies pulled together a lot of people and resources to make a special event for my family and I can never fully repay them. I would like to name a few and if I forget anyone its due to the magnitude of the event and the experience of the event that was completely overwhelming.

Special thanks to:
J.B. Hunt
Haldex
Werner
Eaton
Moores

(all photos courtesy of Angel Arms) 

Me, Eric, Elliot 

Back of T-shirts

Thursday Fun

What a busy Thursday! First of all I have a new beautiful niece!! My little sister gave birth to a baby girl October 3rd that weighed in at 8 lbs, 7 oz. Mom and baby are healthy and doing great. Im stuck not being able to go see them until they are home though. Seeing as the whole 'cancer' thing. Really its that my immune system is so shot a hospital is that last place for me. So I have to wait patiently to see them until Saturday. BOOOOOOO. However, the pictures I keep getting are amazing. My sister can make some cute babies. And thats even before she does what I call "fluffs" back up from her exit!

I also had a fun visit from my grandmother yesterday. She came over and we sat and chatted for 2 hours or so. Basically, until I got too tired and started falling asleep talking. Our original plan was to go to a girls lunch, but since solid food is an issue for me I thought watching her eat wouldnt be fun so we just sat on the couch at my house instead. Seemed like a much better idea...which proved correct! I am blessed that I am close to family #1, and #2 that we get along well enough that even at the 2 hour mark, me falling alsspe mid sentences, I still could have chatted much much more.

So Eric, G. Bell and I were chatting and finally I had to stop the conversation. (Hold Up) I had been staring out my front door at my neighbors porch. I swore I had been seeing a little 4 ft tall pumpkin man in a hat at the door. It was beginning to freak me out. So they both looked at me like I was nuts, but got up and looked for themselves. YES!!! There was a little pumpkin man there. Thank the lord!! Cassandra was not indeed nuts. At the time I really was beginning to think 'great new side effect' but nope. My neighbor just has a new decoration. lol. We all got a good laugh over that.

My parents then swung by after seeing my sis in the hospital.

So that was my day. Girls visit and a text frenzy while little sis was in labor. Action packed. (for me it was) I had to be put to bed at 7 due to not being able to keep my eyes open for dinner.

What a Surprise!

When a I heard heard a knock at my door this morning. My Dad was standing there with a huge smile and a big box. What in the hey hey!??? WEll.....He was holding the entire Springfireld, Mo stock of Pumpkin Spice M&M's!!!!!!!!! HOLY COW. 

My awesome blog readers from Maintenence warrenty subrogation department at J.B. Hunt went and wiped out the entire selection of candy for me! If I could jump up and down in delight I would. I have enough here to last forever!!! To see my kitchen table is crazy. All I can say is thank you, and now to ration these babies.....

Spa Morning

Yesterday was the day. The day of my magical massage. This just wasnt ANY old plain massage. This is what Im calling the 'Cancer Massage'. After many trips to my oncologist, staring at that little sign offering them up. I finally scheduled one. Whats the worst that could happen? The price was cheap in my world of massages. So I took that leap of faith yesterday. 

It was AWESOME!!!! It is at on of the oncologist actual facilities done by a professionally trained nurse. My girl rocked. Bless her heart I know most people dont talk during a massage, but I just couldn't resist. I chatted thru the entire thing. Hey its my session Ill do what I want. 

They taylor it to your specific needs, which was nice. I have radiation burns, scarred areas from surgeries etc. They also go in and look at my charts, lab work, etc. to see what they can safely do. (hence my cancer special). It was nice to see that they had my safety and comfort at the root of it all. I also helped in the overall comfort level. Im not bashful by any means, but I needed extra help on/off table etc, that I wouldnt have gotten anywhere else. It really was the best thing EVER!!! I left feeling so relaxed that I could hardly keep my eyes open. 

After my session we went straight home for lunch. I could hardly keep my eyes open the rest of the day. I spent napping. I napped and napend and napped. I actually fell asleep mid food bite at dinner. Eric put my butt to bed at 7. Ha. Granted now here I sit at 1am wide awake. This was the most sleep Ive had in DAYS. Im tottally attributing it to my nice massage today. So even thought I may have chatted my poor therapist up and down, at her hands I finally was able to sleep. God Bless that woman and her awesome hands. 

I could cry at how happy she made me today. So as for those little signs in doctors offices? Sometimes they are worth looking into. Im totally splurging and getting another one of those. :)

Who Needs to Eat?

I have been downright miserable the past 2 days. As I have mentioned before Ive been having throat issues. Between the radiation and Thrush its been a lovely time trying to eat. Im still healing from the throat radiation, but that is getting much better. You can visibly see the radiation burn on the outside of my neck. The bigger issue is my battle with thrush. I have been fighting this for 2 months now. Its a common side effect of everything they have been doing. 

We just cannot seem to get the thrush kicked. Ive been on 2 different meds and each time I beat it back it comes back with greater force. I woke up in the wee hours of Monday morning thinking my throat was going to kill me. I thought it was strep throat. We called the doctor and its just the thrush again. Due to my weakened immune system we now are calling in the big guns, heavy antibiotics. Im hoping this finally kicks it. I am back to no solid foods. It really just sucks when you add all my other stuff on top of it. :) 

So my throat is killing me. To sum it all up. HA. Im hoarse, cant eat solids, starting to loose weight again, yet craving all the fun foods that I cant eat. Im ready to at least be able to eat again. It does have its perks I guess. The things I can get down are not exactly the healthiest. I have been amazed at what does work and doesnt. So here is my fun list of what Im living on the past 2 days. (yesterday was day 1 of antibiotics so this should resolve soon.)

Now for the fun part what I can eat.....and am doing so with no guilt. 

-Pudding....loads of pudding

-Choc protien shakes (doc special with heavy calories due to loosing too much weight)

-very very very soft m&m cookies. The ones we found disintegrate in our mouth. 

-Jolly Ranchers

-Pumpkin M&Ms. OMG I LOVE these. Only sold at Target and mine has sold out. 

-Pumpkin pie dessert...mushy goodness

-Pumpkin Coffee

I cant wait for the day the radiation side effects wear off. Remember my taste buds are wacky too...I dont taste food the way I normally do. Its like learning new foods all over again. Then add the ouch factor and its just sheer chaos I tell ya! :)  

What a Day

I had the joy of spending the day with one of my best friends, my mom. Ill admit I originally planned just a short quick trip to get some stuff, and a girls lunch. However, it turned into a lovely day of shopping and chatting. Ill admit I did push myself a little too far, ok way past my limit.  Hey, I was having fun. As soon as I got home I napped for a bit, but now the insomnia is BAAACCCEKKK.. Ugh. So here I sit.

I did learn a few things today. Im scary awesome on a scooter/ hover round thing at Target. That and there is about a 2 hour battery life on one of those bad boys. :) Those things are a life saver to getting around. I did manage to not hit anything, but there was a lot of me telling people 'sorry!'. I luckily didnt hit anyone or take any displays out. Although I was very very close. Without the scooter I wouldnt have been able to make the trip.

The curse of Target was upon me thought. Go in needing/wanting a couple things and out with a carful! My big dissapointment was that they were sold out of my new found favorite Pumpkin M&M's. Apperently the ONLY place you can find tham is Target, and my target is COMPlETLY out. UGH. Im going to totally stock up as soon as they get more. They had better be prepared this time Dang it!

After that, we had a nice girls lunch. Im such a slow eater due to my throat I think the waitress thought I was nuts. I then managed to convince my mom to take me to a store without a power chair, or wheelchair. (remember not walking so well, sometimes cant walk much at all... and my wheelchair will be here any day now that we ordered) Ill admit that me walking around a store isnt the best ideas. I did get around well thanks to my aunts cane she brought over to let me borrow ( from when she had surgery). My point is I got out! I managed okay, with the help of my mom. I want to make sure to try to push myself. Mini workout. I cant just sit and wither away. If I can walk Im gonna walk. I found a new headscarf or two, and got some things to keep me busy while at home in my chair. All in all it was a good, fun, productive day.

Now I sit here tired, but cant sleep. Thank you meds. I never thought weaning off medication would cause me to not sleep. Granted my late afternoon nap likely didnt help. I dont care. It was totally worth hanging out with my mom today. Now to attempt sleep....good night all.

Sleepless

Argh! Im so tired of being tired. Im back to a crazy sleep schedule. I dropped into bed at 8pm and was up at 2am ready to go. Some sleep is better than none. Now for the life of me I cant fall back asleep once up. Luckily, Im able to take naps during the day. It just stinks not being on a 'normal' sleep mode. Dark= sleep in my house.

I think it has to do with the changing of my meds. We are dropping finally off the steroids, so my boday is having to adjust again. I had gotten to the point of sleeping on steroids (if you remember they originally caused insomnia, oh the irony). So Soon I should even back out into a normal sleep pattern.

Other than that Im doing okay. My newest found side effect is my tender feet. Its like Im walking on stones all the time. Its a common effect of the Z. It should go away in a few days. Im still unable to walk very far at all. Im also very shaky still. To clear up, my hands shake pretty bad. Its interesting to see me write or hold some things. Heck I also cant really lift anything. I made a pitcher of tea, then realized I couldnt get it in or out of the fridge. :) Add one more thing for my hubby to fetch me.

So that is where I am as of today. My body 80 yrs old, mind 28. My mood is good. I tell my husband I feel all this energy!! But no real outlet hahaha. So poor guy gets his ears talked off, while I crochet or do whatever....(in between my naps).

Hope you all have a beautiful Sunday! Hope the Game didnt depress anyone too bad...poor Hogs we suck.

The Faces of Cassandra

Cancer obviously takes a toll physically on a person. A lot of women have a hard time with the vanity of it all. I actually haven't minded some of the side effects as much as other women. Hair loss for example?? I miss my hair, but after going blade 2x in a year the perks are kinda nice. (look at the upside, cute scares, hats, less shower time...) However, I do have my little vain moments. Like how the steroids and drug treatments swell my face up to huge proportions. Some days its really really bad. Some hours its normal then the next 20 minutes POOF! Fat face. The fat face is the one part of this cancer thing that drives me personally up the wall. Sadly there is nothing I can do about it. Just take it and move on. To help myself process a bit I thought I would show you the 'Progression of Cassandras Face'. To give some perspective.

A fun fact to keep in mind. My overall body weight has not changed picture to picture. This is solely my face, and what the drugs do.

Enjoy...

Taken 2011

Wedding Day! Aug. 2011

1 week post Baby May. 2012

Election Day! 2012 (we voted)- On Steroids here post 1st Brain Operation. 

Beach July 2013. 

Aug 2013 on Steroids

September 2013- BBBQ (Photo Courtesy of Angel Arms)
Full fledged Steroids....Fat face.  

Great NEWS!

We got our scans back today. ALL of the brain tumors shank!!! I could shout from the roof tops. All of it is due to the whole brain radiation.

Now we still have obstacles ahead. The new drug 'Z' we are still taking. It will also hopefully help slow, or reduce the tumors. We are going to rescan me in 4 weeks to check on all my fun tumor buddies. I do still have it in my bones, tummy, and neck. We wont know how those are doing until next scans. Those were on the back burners anyway.

They said that my weakness in my legs and all those side effects may be permanent. Its one of those "you have cancer in your brain, its part of it" situations. Heck, at this point Ill take it. Where the tumors are explains why my legs etc are doing what they are doing. Ill take it with stride. We are getting a wheelchair so I can get around, we will make do.

So to sum it up. We are very very very happy. This has bought us who knows how much time. We now know where we stand.

Scan Day

Today was the day we went in for a new MRI. This is our 6 week out from whole brain radiation scan. We had a scan 3 weeks ago, but it was hard to read etc. Tomorrow we will find out the results of todays scan. Hopefully, it will be a much clearer image. It should also show us any progression of whats going on with my tumors. (shrink, grow etc) Its really going to help us with a timeline.

Other than that Im doing as okay as can be expected. Im still really weak, and tired. I joke that I feel like I have the body of an 80 yr old with the mind of a 28 yr old. My joints are killing me due to the meds, along with the weakness in my legs. Its really hard for me to walk much these days. Or even stand too long. My legs are just too weak from the drugs, and simple side effects from radiation etc. Its crazy really. We are getting me a wheelchair, and I now have a walker too. Im super excited for a wheelchair! Means I can get out and about again. Its driving me nuts basically confined to a recliner at home. We did get a handicap tag for the car too this week. That will help us greatly as well. My joke was "how many moms of toddlers get up close parking!!??" Hey, Im looking at the bright side of everything!

I did finally do one thing Ive wanted to do for a while. I scheduled myself a massage. They have special ones for cancer patients at my oncologist. They specialize it to your needs etc. Im super excited for it.

So new updates tomorrow. Plus Im working on a special post from this weekend...stay tuned.

New Meds the Scoop

So Ive spoken about this new medicine Im on. I finally decided its time to post a bit more about it. Its name is Zelboraf. Its a immune boosting drug, not chemo but chemo-sih is what I call it. (if you read the side effects you would too.) The goal is to maybe help shrink my tumors with it. Its a long shot for anything to get into the brain, but we are trying none the less. Im not holding my breath on this, but we said we would try everything. Keep in mind crossing the blood brain barrier is very very very very hard to do. This is just being used to try to busy us any extra time we can get. The likely hood of this doing anything is tiny.

I take 4 horse pills 2x daily at home for this treatment. The label is pretty scary. It basically doesnt want anyone to touch it but the patient, and is very strict on when to take it daily. Not sure how long I will be at this does, but I dont expect it to change anytime soon.

The side effects just plain suck. So far Ive only been on it a week. They check my blood weekly, along with doctors visits to see how Im doing. Right now my side effects are as follows-

- Severe sun irritation. I have burns on my neck, lips, and chest from a car ride not covered up well enough. I feel like a vampire in the sun. I can feel my skin burning even thur a window. All I need is the fun smoky vampire effect. 'Im melting...hahah'

- Fatigue - granted I always have this just seems more extreme.

- And todays newest- Joint pain! I woke up feeling 80 yrs old with arthritis. I could hardly walk my joints hurt so bad.


Now for the possible side effects I dont currently have. OR I do and have already have and dont realize its making worse. lol. What a disclaimer.

-may cause skin cancer (ha)
-feel faint
-trouble breathing/ swallowing
-faster hear beat
-skin reactions
-joint pain
-hair loss or hair growth?? lol. I loved this one. Granted I have no hair already. Maybe Ill grow some?
-fatigue
-nausea
-rash
-constipation
-diarrhea
-sun sensitivity with blistering

Busy Day

Its been a busy day for us today. Eric woke up and made me some awesome chocolate chip pancakes! Elliot had his first taste of them today too. It was fun watching him realize there was chocolate inside. Made a mess but totally worth it.

We also got a handicap tag for the car today. That was quite the experience. Eric had tried to go for me, but they require the patient to be there and sign for it. So we got to wait over an hour to get a tag. UGH. Hour with a toddler in a place festering with germs. It will help us greatly though, since Im having walking issues. The closer parking really will help. Im excited to have the ability to use it if we need it. Just an extra thing to help.

Just that simple trip, lunch, then a quick pop into walmart wiped me today. Granted I wanted to run into walmart to stretch my legs. I get tired of being tired and confined. I know I shouldnt walk much and save what strength I have, but sometimes I go stir crazy. I should have known better. Im so weak now its back to struggling to stand up straight without assistance. So here I am, back in my recliner trying to relax and rest. Hoping this doesnt turn into one of those 3 day recovery periods. Totally kicking myself for overdoing it. Oh well, we will see. Back to feeling like a newborn deer....seriously thats how my legs feel BAMBI new.

Elliot doing the 'duh' face at DMV. This is how we feel waiting.....