Sunday, March 27, 2011

March Madness

This is, typically, one of my favorite times of the year. Daylight extends further into each evening, a round of golf becomes more plausible, and of course, it doesn't get much better than four weeks of tournament basketball.

With certainty, though, you can expect a March shower to ruin a day of golf, a cold front to disrupt an outdoor family event, and only one team in the tournament gets to win their final game of the season. This is the madness of March.

This weekend's visit to the hospital epitomized March Madness. We were thrown a curve ball. After believing, for weeks, that Sarah's tumor was a Grade I or Grade II Astrocytoma, we learned that it is Grade III Anaplastic Astrocytoma. Our neuro-oncologist did explain that, while classified as Grade III, it seems to be low on the Grade III spectrum (a few tests are not yet finalized). Nevertheless, Sarah will begin a six-week radiation regiment in Houston in a couple weeks, and chemotherapy is a real possibility.

Regardless of the classification, it's still only 5% of the size it used to be. For that, we are very grateful.

Each year, I fill out a bracket. Back in the glory days of Arkansas basketball, I would spend an inordinate amount of time conducting a thorough research on every team in the tournament. This may surprise you, but, despite all the research, I never had a perfect bracket. Nobody ever does. We never have all the answers.

Nor do we know all the details of this diagnosis, prognosis, and treatment plan. I doubt that a selection committee would make us a top seed.

Not many miracles start with great odds. I'm convinced God, (like Lynlee), loves a Cinderella story. We have faith that He can heal Sarah's cancer. Stories like ours give Him "One Shining Moment".

Tuesday, March 15, 2011

Update from Sarah!

Hey everyone! Thought I would stop by and give Pat a break from the blog updates! Just be prepared for a little less creativity and a less fluent way of putting thoughts into writing! He's a tough act to follow, but I figured everyone was ready to hear from the patient herself!

So to answer the question I'm asked most...How are you feeling? That's a complex answer and I looked really hard on Google to show you a picture, but it's not really a search friendly explanation. In a nutshell...I feel like a sausage that someone packed too tightly into the casing! Funny but so true! Steroids are my newfound enemy (even though I know they are helping me get better day by day)! If the steroids have a side effect, I got it (all 20 of them). But the good news is that they are slowly fading me off of them and there is a light at the end of the tunnel!

It’s crazy, but I rarely think about the actual incision until Owen (at 2 years old) asks me to put a hat on. He does this every hour or so! He also makes comments about the choo-choo train tracks on my head! I love the kid's honesty! I got my staples out today, so we will see if he still thinks they look like choo-choo tracks!

So, the incision isn't that bad. It goes from the top of my right ear lobe right, behind my hairline, to an inch past the midline of my head. I'm not really taking any pain meds anymore. I get a slight headache on rare occasions when I over-do it a bit, but that's it. Awesome, and praise the Lord for that!

So what I can and can't do? I still have kept a pretty laid back schedule. I fatigue pretty quickly. I'm still not supposed to lift the kids or anything over 5 lbs (challenging!). I haven't driven since the diagnosis (Jan. 31st) due to the pressure the tumor was putting on my optic nerve. I haven't had the visual disturbances since the surgery (Praise the Lord) so I probably could drive, but I'm not sure my "sausage link-like reflexes" are quite up to speed with the other drivers! I mean when your neck is a similar size to your shoulders and cheeks, it's hard to turn your head in a split second! I know you are all thinking, "Sarah, you are being so hard on yourself." I know because everyone has said that, but trust is pretty close and if you know me well you know I have to find humor in everything! It's my best coping mechanism!

I know people are also wondering if I lost any skills when they removed some of my brain tissue, good and bad. Well, so far, no. At least no one is telling me! I know some of the functions of the frontal lobe from school, so; of course I've been testing myself on some of those skills. They typically include high executive functioning skills like organization, memory, behavior, personality, and problem solving to name a few (we are in the clear because these haven't been strengths of mine for quite some time now!). So, am I normal? Probably not, because I don't think God ever intended me to be "normal”. Am I still quirky Sarah who laughs at everything? YES! Also, a plus is that the tumor on my right hemisphere which is likely most people's non-dominant side of the brain.

Emotionally? I'm doing pretty well. Do I have my bad days where I just beg and cry to God? Yes, not very often, but they do come around. Emotions have been very interesting during this journey. For the most part, I haven't dwelled on the situation (which is another coping strategy of mine). I just ignore it until I can actually take a step to fix it. We have been keeping life as normal as possible around here, which has been beneficial for me in this area. I think I've been pretty strong, but I'm still reminded of my weakness, too. Overall, I'm hanging in there just fine and KNOWING the Lord is going to do great things through this. I was telling the Lord today that I'm not sure how he's going to use me through this, what I'm supposed to be learning, or even if I'm ready, but every ounce of this pain is so worth it to know that just one person could benefit from my story and possibly grow closer to Him or even better yet know who HE truly is for the first time. So. Worth. It.

I would also like to sincerely THANK every single one of you. I cannot tell you how awesome it is to feel all the encouragement and support from so many people. A day still does not go by that we do not get a card in the mail, facebook/twitter/blog message, flowers, dinner, money, gift cards, fruit baskets, text message, voicemail, etc. encouraging us in our journey and letting us know we are being prayed for. I want you to know that we have read and cherished every single one of them. We are so humbled by everyone's responses and concern. It truly takes our breath away and has helped us fight this battle even stronger. Thank you doesn't seem like enough words to say, but from the bottom of our hearts, THANK YOU!

I'm ending my novel with this: I am truly a blessed woman to be surrounded by an amazing family. Most of you know how great they are without me even going into details, but they have surrounded me and not let me fall even one inch. Parents and siblings, you all know what ALL you have done for us, and again forever thank you. Now to have all gotten to see an amazing side to my "beyond perfect in my eyes husband" through his blog posts. And yes, he is that amazing. It is breath-taking to me that God could and would create such a perfect person for me and then make sure I found him! I did. I found him and tricked him into marrying me, and I'm so glad I did. You have been a rock babe, and thank you for carrying me through with you. We are going to make this great!

Love to all and we are still praying for a great pathology report from Houston. Our next appointment is March 25th. It's going to be good!

Friday, March 11, 2011

Still Waiting

No news is typically good news. In our case today, no news is, likely, postponed good news! We arrived in Houston today, only to learn that official pathology is not yet available. Long story short, we have to come back in two weeks to get the OFFICIAL report.

Typically, pathology is available tens days after surgery, but the pathology team wanted to do a few more tests on Sarah's tumor. It sounds like the pending tests are usually reserved for low grade tumor cases.

They did affirm, again, that Sarah's tumor looks to be low grade. A few times, it was even referred to as "very low grade".

So, we still don't have anything official, but the feedback sounds like we can expect good news soon.

Back in Houston

We just arrived in Houston. I've failed to mention that we were coming back today to meet with the Oncology team. We're currently waiting to be called back for Sarah's first appointment, and the second one is at 1:00.

We hope to leave these appointments with a very clear understanding of the official diagnosis and prognosis. We are, of course, praying for an exceptional report.

Monday, March 7, 2011

Acceptance Speech

Thousands of people have made the month leading up to Sarah's surgery not only easier, but memorable.

Friends, family, complete strangers, neighbors, and co-workers have prayed for Sarah, offered all help imaginable, delivered gifts, and spoken endless encouraging words to Sarah, me, and our family.

A couple of weeks ago, we wrote our pastor, Nick Floyd, a note that he shared with our Cross Church Fayetteville family. In it, I mentioned that we are overwhelmed by the response of our church family, but not surprised by it.

That sentiment remains true. Thank you, Nick, and church family, for walking through this with us!

I don't know how many times I've thanked Damon McDonald, but he deserves another one just for being Damon. (Shameless plug: Buy your next vehicle at Everett Maxey.)

The best part of our two trips to Houston was that we, never once, worried about our kids' well-being or state of mind. I hope this isn't overly sappy, but Michele and her family mean the world to us. This month has reminded us how special their family is.

Upon our arrival on Sunday, we immediately noticed a clean (and organized) garage and a manicured yard.

These two acts of service, alone, were absolutely awesome! Sarah raved about it all the way to the front door!

Then, she raved some more when she opened the door and saw this:

This is all the handy work of our great friend, and talented designer, Kirsten Blowers. Check out her store, Rifraff, on the Fayetteville Square.

We watched the Academy Awards a few nights ago. I'm pretty sure that if I knew, for months in advance, that I had a 20% chance of winning the most prestigious award in my profession, I'd have something put together. Not many movie stars do. What's the deal? No time to jot a few words down between sets? Maybe call up your favorite script writer, and ask for a favor? At least scribble down the 20 people you want to make sure to thank on the napkin of your favorite 5-star restaurant...

Some of the fumbling around can probably be written off as a lame attempt to show a little humility. "I can't believe it!" Yeah right.

Well, we can't believe it. We never left for Houston thinking we would come home to all this. There wasn't a 20% chance of this happening when we left. We don't know what else to say accept, "Thank you, thank you, thank you!" (Sound familiar?)

We don't know who to thank, either. We've tried to put all the pieces together, but it seems that a few people may be too gracious to let us know they had a part in it. So, thank you Kirsten, Elaine, Michele, Angela, Rachel, and whoever else had a hand in our little home makeover.

Friday, March 4, 2011

Coming Home.. For Now.

Wednesday and Thursday were two steps forward, but today started as a step back. Sarah was dealing with a bit of pain last night and this morning.

A doctor removed her turban around 7:00 A.M., so we have full view of Sarah's incision. A few staples are covered by a scab, so we don't have an official count. Preliminary estimate is about 38 staples.

Sarah's surgeon stopped by about an hour ago. Dr. Weinberg has been a huge blessing. Not only did he remove 95% of the tumor, but he has also been very encouraging to Sarah. (His name is Dr. Jeffrey S. Weinberg, and he is the most impressive doctor I have ever met.)

Physically, Sarah is recovering very well. They initially told us that we would be here 3-5 days. Since Sarah is recovering so quickly, he said that we could leave tomorrow morning. We will still be coming back next week to meet with Oncologist and Radiation Oncologist.

The removal of the turban brought with it a wave of emotion. We've had to convince Sarah that she doesn't look like a monster. Dr. Weinberg reminded her (and us), again, t0 expect a long recovery process that includes good and bad days.

Since we learned of Sarah's diagnosis, we have prayed that our lives do not return to "normal". We expect things to be better than before. The old "normal" was just that... "normal".

Our expectation is that this bump in the road propels us into exceptional living.

Wednesday, March 2, 2011

She Really Is Okay!

We were, finally, allowed to see Sarah at 4:00 today. She is going to remain in the holding room until about 7:00 or 8:00.

We'll laugh for a long time about the first couple of things that she said to me. I'll keep the first to myself, but the second was, "Did I miss any good fights?" I'm pretty sure she was talking about her VERY innocent parents... maybe not. Either way, we're in trouble. She was out for half a day, but she hasn't missed a beat.

She's asked that I take pictures to document the day, but I'll have to wait to post those until she gets her private room. No cameras allowed in the holding room.

When we get in the private room, I'll try to wrap it all up.

Out of Surgery

Sarah is out of surgery, and in a post-op holding room. She will be there for another hour until we can see her, but she is "awake".

There was only one surprise during surgery... and it was good. Going into surgery, our doctor thought that he could get 80% of tumor out. It turns out that he was able to get 95% of it out!

Preliminary diagnosis is still Grade 2 Astrocytoma. Official diagnosis will be determined by March 11th.

More details to come, but that's the skinny. We hope to see her around 4:30.

Thank you all for your prayers. It has been a pretty taxing day for us, but your prayers, and the company of our friends and family here at the hospital made it MUCH easier.

Day of Surgery - Update 1

I just left Sarah's side in the surgery holding room.

She is still in great spirits. The anesthesiologist had just visited her, so imagine she'll be feeling extraordinarily well very soon!

We will get updates every couple of hours. The medical staff here is amazing.

Here is a link to a picture of the operating room, and Sarah's surgeon (Page 4 and 5). MD Anderson