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! :)