Thursday, June 23, 2011

Worlds are collidng

One of the most amazing parts of having brain cancer is that all of the people who matter most are drawn together to come and see you. And they get to meet and it's like a big party where all of the people I know from all different points of time in my life are thrown together. It's fun to see my friends from Waco meet my family from Arkansas. I wish they could have met under different circumstances obviously, but I feel so blessed by the whole interaction, it's one of the many silver linings I cling to.

Most recently we had a house full of visitors including my dad, my sister, her boyfriend, my friend MA, as well as the usual family of four plus our two moms. We had fun playing Wii, watching movies, eating way too much food, and just hanging out. As I type, I imagine people are packing up their stuff for a family reunion of sorts involving Stanton's mom's side of the family. There are approximately 30-35 people coming to Waco for the weekend. It's amazing!

I have definitely been feeling the effects of all the drugs in my system. Some days are bad, some days are ok. I just reduced my steroids from 4 pills a day to 3 pills a day, I thought that would help me sleep better, but it didn't last night. I feel tired and weak all the time. I'm getting weaker too, which bothers me to no end. I was doing so good. I'm still able to function on my own, but I can't really get down on the floor any more to play with the kids. The doctors said that this would happen, as the radiation kills the tumor cells, they will swell. The swelling puts pressure on my brain, which turns off my right side. I still have complete control of all my limbs and can move them on demand, which is more than I could do in the hospital. But I am just worried that as I get weaker, I won't realize it and I'll try to do too much and not be safe. I know how stubborn I can be.

Wednesday, June 15, 2011

New experiences

Well, since we chatted last, I've had several new experiences. I've gone through 2 radiation treatments, a round of chemotherapy pills, I got a new fancy phone with a data plan and everything, and I am blogging from my very own IPad. Fancy, I know. :)

So let's start with the radiation. Essentially, I get my head locked to a table, by a mask that squishes my face so hard it leaves red marks for about 10 minutes after the treatment. Otherwise, the radiation is painless. Once locked in, I hold my cross that my family got me to hold, I close my eyes and try to pray. Try is a key word, because they have music playing in the room and I am easily distracted. I make three passes in the machine. The different arcs target the tumor from different angles. It only takes about 10 minutes start to finish. Which is good, because again the mask really squishes my face. I think that the radiation beams make my head feel hot, but it may just be my imaginatïon.

I am taking a pill form of chemotherapy called Temodar. I took 130mg last night and will take that amount every night at bedtime. I take an anti-nausea pill about 30 minutes before hand and it didn't seem to affect me at all on day one. Aside from nausea Temodar has been known to cause hairless in about 69% of patients. This is a little concerning to me. I am not a person obsessed with my appearance, but I don't want to appear sick. I know I'll adapt if I have to, but I'd rather just be part of the 31%. The other big side effect is fatigue. It will be hard to tell if the chemotherapy is causing it or if I am still a little tired from essentially not moving for weeks.

On that note, I am getting a PT and OT twice a week each for a few weeks. I am a little skeptical of the OT, because unlike a stroke victim, my muscles don't need to be taught how to do things again, I just need the strength back. But, I'll gladly take any and all help. With my moms around to do EVERYTHING for the kids and the house and Stanton doing everything for me, I don't get out of the recliner nearly enough. I need the PT to get me up and make me move.

Now, the fun stuff. My invasion of technology! I truly have joined the 'it' crowd with my new fancy tools. I just hope I can learn to appropriately use them to the fullest. It was the doing of some key people who love me dearly to make sure that no matter my physical condition, if I only had my left side to operate they wanted to be sure I could keep writing and get my thoughts out there. And for that I am truly grateful. Lucky for me, I can currently type with two hands and really enjoy my new toys. I was going to post a picture, so you could see the new me. But I can't get blogger to recognize the pic I took with my iPad. I'll learn soon.

Thanks for listening! And feel free to ask questions.

Monday, June 13, 2011


steroids make you weird. I am on some considerable levels of decadron and although it has relieved the pressure in my brain to allow most of my mobility to come back, the side effects are weirding me out. my body shape has changed. my legs are skinnier, my belly is bigger. my face shape has changed too, so that i barely recognize myself in the mirror. of course there's the acne and shrinking boobs too. but above all of that the most annoying part is the steroids have made me start to dislike food. I am so hungry all the time. And people have been providing DELICIOUS meals for us. But I'm so hungry I feel like I can't savor the flavor I just need more to eat. I feel guilty for gorging on tasty treats not because of the calories, but because I don't feel like I give the food a good home. It's such a waste for me to just throw it down the hatch. On the calories though i'm apparently burning up all I eat because I'm not gaining weight.

We are getting ready for my first radiation treatment tomorrow at 4pm. I'm not real sure what to expect, but I have a peace that passes understanding. Literally. I mean can you imagine me not freaking out about a medical procedure? God has touched my brain in a profound way to protect me and I thank Him for it every day.

I'm feeling good today. I feel like I have complete mobility, but I'm still weak on my right side. But I'm able to shower on my own. It's the little things. Most of all, I miss my Jacob. He's a runner, not a sitter. So I don't get to squeeze him very much. I miss that.

Please pray for me tomorrow at 4pm the scheduled radiation appt. and at bedtime when I take my first round of chemo pills.

Wednesday, June 8, 2011

brain cancer

it all started on sunday when i nearly shut my foot in the car door. by sunday night i admitted that i needed to go to the doctor (a big deal for me) because my right side was being lazy. i called and set up an appointment for tuesday because monday i had the kids. early in the morning on tuesday, i was taking care of the boy and he was fussing so much that he even woke stanton up. stanton noticed my arm was limp and i was just not myself. he got worried and the next thing i know i was getting dressed to go to the ER.

At about 6:15 i walked into the emergency room. i talked with the er doctor told him my symptoms and he thought it would be a good idea to do a ct scan. i don't remember how the timing all worked out, but it seemed like the diagnosis was quick. the ER doctor came in to tell me that the CT scan was abnormal and it looked like cancer. the doctor was visibly shaken. and we were too. i cried but not for long. after having my mom diagnosed with breast cancer in august, i just wanted a plan of attack. i also found strength in knowing that God has a plan and He is in control of everything. He gave me brain cancer. He can heal me. But above all I know that He has a plan for me and my family. And we will be richer for having gone through these trials.

before too long i was inundated with a team of doctors , including a brain surgeon. i was loopy on the drugs, so i remember asking stanton to call everyone and being wheeled down for an MRI. then being woken up for another meeting with the doctors. it's all kind of a blur. next thing i know i was waiting for a brain biopsy. even writing that gives me the willies, but at the time i was surprisingly calm. again the peace that i felt was just amazing.

the next couple of days were kind of hazy. i remember all the visitors that showed up. true friends are so amazing! i'll have to have stanton post all the details, but eventually on thursday we were in an ambulance on our way to UT Southwestern for an anticipated surgery. again i was unusually calm. but once we got there the doctors said to us that they couldn't safely do the surgery. i can't imagine the range of emotions that my support team was feeling. but, by being at zale lipschy hospital on the UT Southwestern campus we were exposed to top tier medical professionals.

 i have decided to just put my caringbridge link. it has the whole story layed out better than i could ever remember and more specifics than i know.

now, with that all out of the way, i hope to blog about my days. how i'm feeling, and what my new normal is.

thank you to everyone who has loved on me and lifted me up in prayer.