Whats up?

Sorry for the lack of posts. I haven't been feeling great. My headaches have increased in pain level, so Ive been sleeping a lot. The pain meds make me a bit loopy. On a bright note: The post surgery diet has helped me figure out the answer to less tummy issues. My tummy apparently responded well to virtually no bread, and a soft diet. Ive felt better in this last week (tummy wise) than I have in a long time.

In other news: We moved Elliot to a 'big boy' bed! No more crib. He's responded better than I thought. He pretty well stays in bed until we come get him. It did make me tear up a bit. The thought my baby is growing up. He's also been talking up a storm lately. He's also learned how to help us with laundry. He helps us put it in (front load) and even carry the laundry baskets. Its crazy how much this kiddo can do.

On a brighter note, I have scans on the 18th of August. I think we are all holding our breath to make sure Im still cancer free.

Minor surgery today...

I broke a tooth two weeks ago. I was simply chewing on a hard candy and it broke. Way to go me!? I knew that dental issues, and weak bones are a side effect of cancer. (all the radiation to my head, throat, then the different meds Im on). Heck, they even gave me a shot for brittle bones!

The dentist had bad and good news. The good news? All of my other teeth are fine. Bad news? The broken tooth was in such bad shape it couldn't be saved. Not only that, but it would require an oral surgeon.

Today I had oral surgery. They went in and pulled my tooth. After that, they proceeded to somehow make a bone graft to make me a new tooth. (cool huh??) So now I wait 2 months to heal, then go back in for them to finish my new tooth. I honestly don't get how they are doing it. All I know is Im lucky it was one of my back teeth. I can smile and no one can tell its even missing.

So overall, today Im in a lot of pain. I was told to spend the rest of the day on bed rest, but it just about drove me nuts. I managed to get some laundry folded from bed. On a good note: No other issues/ side effects today. Im feeling pretty good on my targeted therapy. Yay for good cancer drug days.

Catching up

Ive tried to write many different blog posts these past few days. Nothing has sounded 'right' to put down. Ive been enjoying the cooler weather. Who would have thought 60's in July!? My time has been filled with housework, playing with Elliot, and all the other normal things.

My health is the same. Still feeling like I have cancer. Still on the targeted therapy drugs. Still dealing with side effects. Its a never ending battle. I won this past round, but still dealing with the battle wounds. :)

The newest thing Im doing? Restarting my physical therapy at home. (no therapist, just going back to the regimen) My legs are still weak. So Im tracking my steps for the day, and trying to add in weights. My goal is to be able to catch a 2 yr old. lol. I can't run yet as my legs just can't seem to take it. So we start with walking and will move slowly to a faster pace. Keep in mind, Im not doing this to loose weight. I don't have any more weight to loose. Im already happy with my weight, and struggle to keep it from dropping. All I want is to be strong enough to keep up with my family. Right now even a trip shopping leaves me tired the rest of the day. So its not a crazy idea.

-Cassandra

Pools and such

Ive been pretty boring the past few days. Ive either been at home or at the pool with my family. Im more sensitive to the heat on my meds, so the pool is a challenge. I struggle with every fiber of my being to keep the contents of my stomach on the inside vs outside. Every time thinking Im out here at least trying to live life. This is as "normal" as Im going to get.

In other news: We're working on trip ideas for a mini vacay this fall. Im hoping the weather will be cooler. I want to go to the diamond field in southern Arkansas. You can dig and try to find diamonds. Many are found each year. You even get to keep what you find. I think it would be fun. Have Elliots first camping trip etc. For some reason Ive had my heart set on going for a while. I just know that I can't  go until the weather cools off.  Its going to be a long summer…...

Uncharted Territory. Remission further explained.

So Im officially in remission. Thanks to my 'targeted therapy' / Chemo treatments. As Ive said before Im on 2 different therapy drugs. My doctor says I will remain on these drugs as long as they are working, and my body can tolerate it. One patient was on them for 14 years before they no longer worked. So I get the pleasure of staying on these drugs for the foreseeable future. I can't complain, as they have saved my life so far.

We are now in uncharted territory. My doctor says its a miracle. He keeps telling me my case is "seminar worthy". It is very rare that a patient with metastatic melanoma in the brain to survive this long. Or even have all the 9+ brain tumors disappear. I am pretty much the test subject for my doctor. Im still struggling with tolerating the therapy. So any progress I make is passed on to other patients. Any of the ways I find to help with my pain, or 'issues' they pass on. Im glad to be of help, but Im still figuring it all out.

My side effects honestly just suck. I still have tummy issues, and massive headaches daily. (thanks to scar tissue in my brain) The therapy makes me heat/cold intolerant. Too hot? I puke, and it doesn't take much. That said, I struggle at keeping from loosing too much weight. Ive been tasked with staying steady. (failing at the moment) Our game now to figure out how to solve my tummy problems.

While the remission is good news, Im very hesitant to be happy. The last time they said the words "you're in remission" was last year. The next time they did a scan I had 9 brain tumors. So you can understand why Im going to be cautious and hold my breath for the next 3 months. Oh yeah, I get scans again in 3 months to check progress.

Thank you all for your daily prayers. If I could just ask for you to remember me and my family in your prayers, we would appreciate it. While we had good news today, the fight still continues. We have won this round. Now to stay healthy and prepare in case of round 2.

Scan Results!

IM IN REMISSION!!!!!! No cancer found. Brain is all clear!

A day spent cold, hungry, and radioactive

Today was scan day. The 1 day every 3 months that I plan my outfit around no metal in my clothing. (Otherwise I have to take it off, and thats annoying) so I go prepared. My outfit of choice? Athletic gear ex. Running shorts or yoga pants, sports bra, and a jacket. All because its cold in the mri/ct/pet scan rooms.

Scan day makes for a long day. I have to go in hungry, no food after a set time. Then depending on my schedule, I'm not able to eat for 6-8 hrs. Easy right? Not when I hadnt eaten since the night before. By then end of scans I was running (almost literally) to lunch. I hate being hungry.

So yeah, add in blood work, having to drink barium, laying in a tube forever, and we have a party. At least I enjoy talking with the staff. Im blessed that they are a good grouo, otherwise they could make the experience pretty grim.

After the scans we took little man to the pool. Hes finally getting brave and doing better in the water. Its fun to watch. I of course was side lined due to my radioavtive status. Talk about a hear broken little boy. This afternoon he clung to my leg saying "up!". Its hard to say no, but I had to have his dad take him away. 24 hrs without baby, but we manage.

Theres my day. Now we wait. Wednesday we find out my results. Fingers crossed its a good result. Now to keep busy.

The scoop on my hair

I know people are naturally curious on hair issues of cancer patients. The whole brain radiation caused all my hair to fall out. (Eyebrows too) it all started growing back, but with a twist. It came back unruly, curly, and very patchy. I joked that I had the 'family' hair cut. To explain...bald on top, and hair on the sides. I let it go, assuming it would catch up and grow to look norml.

Fast forward, and I had had enough! I grabbed the clippers and buzzed my hair.  GI Jane style. (ok its a bit longer but you get the gist). Shockingly, it looks better. You can see thr bald spots growing in. (finally!) Im not sure how many women would do what I did. I dont care. So it means a longer time with hats, scarves,  and wigs. I think its what I nedded. Now it can all grow at one slow rate. :) plus I can go from blonde, to brown, to red. All based on how I feel. Non comittal hair color!

Doctors and ranting

Yesterday was my doctor check up day. They said all my blood work looks great. They even went so far as saying "on paper youre healthy-blood wise". Other stuffwe discussed was my stomach issues. We are still trying to get me to a normal type of living on these drugs. So we are back to trying new meds so I can get this under control.

We scheduled scans for next week! Finally, we will get an updated look at how the cancer is doing vs my meds. If its stable or better I stay on the meds. If its worse I get off the meds. There is no point in taking them if they dont work. That and they are pricey. I cannot imagine what peopke without insurance would do. My insurance pays 18,000 a month just for those pills. (Insane) I really do think we need a national helthcare option.

So I have a new rant this week. Ellen D. Announced on her show "the coolest sunburn contest". What the heck people!? We are back to promoting not using sunblock and even prompting tanning bed useage!  Meanwhile melanoma patients are dying daily. They might as well throw a contest about looking cool smoking. I swear people dont think. Im determined to write and call ellens 'people' and share my displeasure. We shouldnt make light of this. The harm of 1 burn can ruin your life. Doesnt take much.

So to sum up everything....I fight daily to keep food in me. Otherwise Im doimg pretty good for a cancer patient. :)