Una Calavera por Todd

I see him towering up above
light reflecting peace like a dove

He was a jokester and could we dance
and he always listened to my rants
He was able to poke into my weakest spots
invading even my most private thoughts

he would laugh today at my foolishness
and dance and point in his bullishness
but it made no matter that I got madder
mi hermano, he knew how to get his way
More than anything, I love you, he would say

and he sobbed and we cried
and we hugged and he died

and I've prayed for the way to say goodbye
but the memories flutter and I still ask why
and I hang on tight with all my might
to his eyes and his laugh and his hand in my grasp
afraid that his hopes and dreams have been dashed

what if there comes a day I can't remember
his tricky, "DWI fender bender"
or how he twirled me around the kitchen
we'd bargain to avoid either of us snitchin'

stay with me baby brother and do not fade
a goodbye I am not quite ready to bade

(This is a post originally made on my work blog called A Sister's Hope. You can find it at www.mysa.com/blogs)

Cancer is an evil disease. But sometimes the side effects of treatment seem even worse.

I try to hang on to the good news, which is that at Todd's last MRI the doctor told him his chemotherapy was an effective treatment and that his brain tumor continues to shrink. It has reduced in size to the point that it appears to have collapsed. I dream of the day that we can safely utter the word: remission.

But what stinks are the side effects of Todd's treatment. Chemotherapy led to diarrhea that then led to a fissure and hemorrhoids. What 25-year-old man wants to confront hemorrhoids? Those two ailments led to bleeding which meant a more permanent fix than any cream could provide was needed.

Almost six weeks ago he went into the emergency room seeking some relief. What he got instead was a painful surgery to sew up the fissure and tie off the hemorrhoids. All I could think of was the Pepto-Bismol commercial and my two hands holding my rear end! He took it gracefully and never complained. There were moments of frustration but no outbursts of anger. I prayed that would be the end of it.

Instead he learned during surgery that while laid out on the table a nerve had been damaged causing him to lose feeling in his left leg from his toes to his hip. He was told with time that the use of his leg would return. It's been more than five weeks and instead things have grown worse. He cannot walk on the leg and his attempts have sent him flying to the floor -- one time so violently that it looked as though he had broken three of his toes.

You would think he could use the other leg as leverage but it hasn't worked that way and with a major decline in his upper body strength he is unable to pull himself or push himself around. My parents have taken to rolling him around in the computer chair to get him from the kitchen table to the living room couch or a recliner. Where things become most difficult is when it comes time to use the restroom. Without going into details all I can I say is that when braced against the wall while standing he has very little control. It is frustrating and embarrassing for him.

How can I tell him that it is ok? With time -- and physical therapy -- this too will pass. It seems as though it cannot get any worse and yet I know it can. If this is the worst of it, I know I would clean up after him forever. I know my mom feels the same way, that is why we have bleach and disinfectant, she says. At least we still have him.

I know I've neglected this blog but hey .... life has been a little hectic with a new job and new hours and another dog all added to the mix.

But the good news is that Todd has gone back to school .. a couple weeks after beginning a new, more aggressive chemo treatment. You may know, or not, that his MRI a couple months ago showed tumor growth, which was absolutely devastating news and renewed all our fears that Todd would not survive this challenge.

Well the new treatment which is intravenously and also every two weeks has made a tremendous difference. Todd's most recent tumor shows significant shrinkage which is really, really good news. He's feeling good, getting back into school and has begun to drop the weight he gained with the steroids he was on... things are looking up and I could not be more proud of him.

He's maintaining a positive attitude and really working on recovery. So, thank you, thank you for your prayers and kind words. Your support has been just what I needed.

Usually it is good to grow .. growing up for instance, or growing out because you are pregnant. The one time growing sucks in when you are talking about a tumor.

Todd's tumor has grown. That stubborn bugger had shrunk and now in the past two months its grown. It's thrown him into panic ...it's thrown me into panic! What does this mean?

For the doc's it's means no more easy going pill-form chemo. Instead it will be IV chemo every two weeks. That's a brutal schedule ... and one that would keep my brother from going back to school in the fall. It will surely throw him back into depression and then what -- any suggestions for helping him through would be welcome.

Some news on Todd: he went into the hospital on Wednesday for a biopsy on that brain tumor and according to his doc he did "super." Now the waiting is going to kill him... or us. He came out of the anesthesia by 11:45 a.m. and was sitting up, chatting with the nurses, asking to eat more than just ice chips. Seems when asked how much pain he was in on a scale of 1-10, it drew 10 fingers in the air in response and a blessed shot of morphine.

From there is was pure euphoria and denial that this was a heavy-duty procedure. Six hours later he was moved into ICU and wanted a steak. He got Jell-O. He refused to sleep and in the end we all left to make him rest. Only mom stayed behind sleeping on the ice cold vinyl of the waiting room with the lights on. She got up ever 90 minutes to check on him. I don't know how she does it. On night two, I made damn sure she got a cot to sleep on in his room.

Thursday his room had a revolving door of friends and family. He didn't want to sleep. Then he wanted a Frappuccino. And he even left me his pineapple cake. There were high highs and low lows and bursts of tears from everyone. Why does this have to be so darn hard? Why can't I find the words to make him feel better? By Friday they sent him home.

Did I mention this has totally sucked the joy out of the holidays? And for the first time ever, the best part for me was Christmas Day Mass. I actually listened to the words and they made sense. And I felt less alone than I have in a long time. So much to think about.

Todd saw the neurosurgeon today and they reviewed a second set of MRI scans. His tumor has NOT grown at all in the past month. That is surely some positive news. So now, he is scheduled for a biopsy on Dec. 27. From there a better analysis may determine what type of tumor it is and whether we should be worried about cancer. So, we all breathe a collective sigh of relief. I know Todd has been under tremendous strain and your hopes and prayers have really helped. Thank you.

I think waiting is the hardest thing. Waiting to hear from Todd's surgeon, waiting to schedule the surgery, waiting to know whether I (selfishly) have to cancel my training in Florida to be here. Waiting. Waiting.

I feel like all I can do is wait and I think my patience is wearing thin. My mom fills the time crying and praying. My dad works. I feel like we've waiting so long already that I was out of words for awhile. No one want to bother me but they all want to know what now? What's happening? Are you alright? Is Todd in any pain? How is your family? And I want things to be normal but they aren't anymore. And it's frustrating to not have answers.

I don't know what is happening. I don't know if I am alright. I think I am but I'm not sure. I don't think Todd is in any pain. My family is pulling together -- we're hanging in there as best we can.

Then I think wait this is Thanksgiving. I should remember and count the blessing here. Todd is young, and healthy and fit. He has a lovely girlfriend who is full of support and love. All of us are here and we love him. He has great faith. And so do we. There are many, many, many of you out there thinking of us and helping us through this time. He found it now, early instead of learning later when it had become a crisis situation.

Only the waiting is so hard, so draining, so exhausting.

Sleep and work. Sleep and work. I think that is all I have been doing...neglecting my house and my pets and myself. It is soooo hard to pretend that life is normal as me and my family wait to learn more about Todd's tumor and when his surgery might be. It's not normal. It's NOT normal for a perfectly healthy, happy 23-year-old to have to fight a brain tumor. It's not normal and I don't know what to say to him or how to feel about all this. It makes me angry that he must go through this and I think he must feel so very alone because how could we possible understand what it means, what it feels like to face this yourself?

I feel as though I have cried more in the past three days than in the last three years put together. And everyone I see around me has red, swollen eyes too. The only place I feel semi-normal is work -- you can bury yourself at work in tasks and things to get done. But I swear I see the world around me through this dense kind of fog.

Now, Todd's friends and family are coming out of the woodwork as are our entire family's support network. We all know such incredibly loving and supportive people. It is truly amazing and a blessing to remember even in healthier, happier times. Your prayer are welcome and appreciated and I sure hope God is listening.

So some good news. A coworker of mine suffered a brain tumor in 2001 and she has recovered. She has the same doctor that Todd has seen and she calls him a blessing. She said he is the best and someone she trust implicitly. This makes me and my entire family feel a little better. So, I'll keep you posted as more develops and for now I continue to pray for the best.

I'm not sure if I should sigh in relief because it's not cancer (at least the doc's prelim diagnosis) or whether to cry because it's not as good as it sounds.

Todd's tumor has been a slow growth over years and years of time. If he does nothing, he will be paralyzed. The only option is surgery. Scary brain surgery -- to remove what they can and definitely not all of the tumor which is fibrous and has wound itself in its grip around his brain stem.

His greatest fear -- losing the ability to communicate.
My greatest fear -- a life without my brother by my side.

Why? Why now? I am angry and overwhelmed and sad and terrified. So surgery. I don't know what this means? Will he have a good life? Will he recover? Can I give my life instead? My eyes burn and I feel nothing, just numbness.

I've been gleeful for the past two days and a political junkie to boot --- the only gray cloud news that my youngest brother was suffering some weird viral infection that has caused temporary paralysis of one side of his face.

I could set aside that Texans voted in Rick Perry again cause at least the Dems took back both houses of congress and finally a strong, outspoken woman as speaker of the house -- and the icing on the proverbial cake, the retirement of dear old Rummy.

And now all these politics seem mute.

My parents have gone to pick up my youngest brother from college after seeing a doctor and getting an MRI that showed a tumor ....a scary, nasty tumor at the base of his brain. What does that mean? How serious is that? They sent me home from work. And I am waiting with my brother and sister for the others to get home.

My sister is hiding in her room. My other brother doesn't know anything more than I do and television news seems so trivial. What does it mean -- is it malignant? Will it spread? Did they catch it early? Can I be strong? Can I stop crying? I would be devastated to lose him. He makes me feel like more of this family. He reminds me that I am normal. He loves me unconditionally. He is only 23.

I love him. What can I do?

Well, four days in the car with my parental units and I survived. It was difficult to escape even for a private phone conversation but hey, I did my best. Day 1: I had a tummy ache and slept the entire drive through Texas and Oklahoma and into Kansas. Day 2 slept some more. One the way home -- I read the entire Secret Life of Bees, which was very good. I also did some crosswords to occupy my mind -- there is nothing like a completely filled in crossword to make some feel uber intellectual.

Today -- back to work. And really, all I wanted to do was clean my house, throw open all the windows and air the place out and snuggle with my Hunny bear.

Major anxiety.

The trip to Missouri is less than 24 hours away and I am already worried. I don't know what I was thinking signing up for car travel with my parents! It's like a 16-hour drive or something -- can I sleep that long? Maybe I can use my ipod to drown out the chatter.

I'm sure once we are there it will be fine, fun even. I can visit with old Mizzou friends, check out the campus again, shop, visit with my grandparents. Afterall this is a trip for my g-pa's birthday.

So wish me luck. Patience and the ability to bite my tongue.