Friday, December 19, 2008

This is how we spent the holidays last year...

Pictures from left to right:
1. My Aunt and favorite cousin kept me company before my brain surgery.
2. Nearly all of my family on my mom's side traveled to the hospital while I was in surgery to pray and wait. Waking up to their faces was amazing!
3. I was in more pain than I can even describe...
4. When I came home, I spent the holidays learning how to walk again with the help of a walker. 5. My family made Christmas special for me.
6. My dad flew across country the moment he heard the news and was by my side those first few days of recovery.

Wednesday, December 17, 2008

The first year anniversary of "the surgery".

It's hard to believe that a year has passed since my head was sawed open. I've had so many triumphs and so many set backs, but still I’m pushing on. Some days moving forward isn’t hard at all, and some days I feel like I’m clawing and fighting the whole way. I don’t think the symptoms that I’m left to sort out have as much to do with the brain tumor itself as they have to do with the brain surgery.

In January I couldn’t even walk or bathe myself. A walker clustered up my living room and my husband would gently help sponge bath me. I was still taking some heavy painkillers, and my memory of that time is still pretty fuzzy. I spent my days and nights on the couch dozing in and out of consciousness and pain.

In February my surgeon took me off of the heavy painkillers and sent to my physical therapy three days a week. The girl that worked with me was named Kelly, and she re-taught me how to walk, how to keep my balance, how to bathe, how to reach, how to start living again. Through her teaching and my hard work, I received the green light from the surgeon to start driving again. I would still get confused and I was still forgetful, but I was starting to regain my own independence.

In March I was hospitalized for “pushing myself” too hard. The hole in my head (where the tumor used to be) had filled up with fluid that wasn’t draining causing a reoccurrence in my symptoms. My surgeon informed me that my idea of recovery was not realistic and it would take at least 18 months before I was “okay” and even then I may not fully recover some of the things that I had lost. Depression now accompanied my pain. Some good news was that I was released to work part-time towards the end of March as long as I promised to rest. That promise wasn’t hard to keep, working a couple hours and going to physical therapy totally wiped me out. Due to the persistence of my mom and Martin, I started seeing a general doctor as well. I had relied solely on my surgeon and he was 3 hours away. Never having a doctor before, now I had two.

In April I started realizing what a monster I had become to Martin and the kids. In the afternoons, I would be so tired and my head would hurt so much that I lashed out at them – a lot. And the depression didn’t help any. I’d make Martin lie when the phone would ring for me because the thought of talking to anyone just seemed overwhelming. I didn’t want to talk or play with him or my kids, and cried for no reason at all. I couldn’t sleep at night and would stare at the ceiling and plan out my funeral, just in case you know. I also started secretly doing research on the Internet for others “like me” and my findings were scary. The death ratio for people with non-cancerous brain tumors is 55% in 10 years. To me, that meant that I would be dead by the ripe ol’ age of 34. Towards the end of April, my depression was noticeable enough that my boss gently sat me down and suggested that I talk to my doctor about depression. I did, and finally received some help, although there are still some effects of looking death square in the eye that I just can’t shake. Also in April, I gave my notice at work. It was the hardest thing that I’ve ever had to do, but I just wasn’t able to do it all and work was the only thing that I could sacrifice.

In May I celebrated my 25th birthday, my son’s 3rd birthday, and our 4th wedding anniversary. Martin surprised me with a gorgeous ring that reminds me that he loves me no matter how ugly I might be, how grumpy I might be, or whatever I went through. He stood by my side through better or for worse, and even though he can’t relate or offer many words of comfort, I know he’s always there. I was also released from physical therapy because I had reached all of the goals set for me by my surgeon.

In June I said my sad goodbye to Albany Community Hospice, and my new focus was on my family and myself. Slowly the house started looking less like a natural disaster had hit and I started looking forward to the beach trip we had planned and paid for back in January with income tax money. It’s a good thing that we had already paid because living off of one income started hitting us pretty hard and on top of everything else, we now had money problems to wade through. We were forced to sell my car to reduce some of our debt and we took Caleb out of daycare as well.

In July I celebrated the 4th with my family and my favorite cuz, Erica, and her 2 sons. I had daydreamed of spending all day out in the sand, but that just wasn’t realistic. Exhausted by midday, I’d have to sulk up to our condo to take a nap every day. The pressure difference of actually submerging my head underwater made my head hurt so bad that I thought I would pass out, so there was no swimming for me. But still it was so nice to get away and the scenery was absolutely beautiful. By this point I looked totally “normal”. My hair had grown back to cover the seven-inch scar up my head, and my time in physical therapy had taught me how to walk again. By the end of July, my headaches were too excruciating for me to even function. I wound up back in the hospital and was referred to a local neurologist.

By August, my new neurologist had put me on 4 different medications to help manage my symptoms. He ordered an MRI of my brain before he made his decision and was a little surprised that I wasn’t on any medications already. He collaborated his treatment with my general doctor and my neurosurgeon. Within 2 weeks, I had noticed a change in the severity of my headaches and was able to sleep through the night. Against everyone’s judgment, I registered for school. We all worried that it would be too much for me, but I wanted to try. I needed to feel like I was doing something. Martin and I kept our financial struggles to ourselves, and one day I checked the mail and there was an odd envelope in the mailbox. When I opened it, a hundred dollars fell out. Tears just streamed down my face in thankfulness because God is truly our provider.

In September I had started school and was really enjoying it. I think I’m a nerd because my hand is always raised with questions and I get really excited about learning. It shouldn’t come as a shock that I’m going to school for nursing. After all that I’ve been through, I think I’ve got the empathy part down pat. I did notice that school was a lot harder for me than it had been before. I guess because of my sketchy memory, I had a hard time retaining information and studying proved very difficult. But still I kept chugging along.

Oh! I haven’t even mentioned the Bible Studies!! I’m not sure exactly when we started having the Bible Studies in our home, but we did. For the first several I would be in the middle of a killer headache, curled up on the couch, and in pajamas. But no one seemed to mind and the Bible Studies grew and grew and God’s presence definitely settled among us each time we met.

In October the headaches were back big time. Still, I kept chugging. I was struggling in school but determined to finish. There were two occasions that the headaches were so severe, I had to run out of the classroom before I fainted in front of everyone. My general doctor prescribed me some pain medicine for the bad headaches, but I wouldn’t take it unless I absolutely had too. And even then I would usually wait too long to get the full benefits of the pain relief.

The headaches let up some by November, and the frequency of their occurrence was a lot more scattered than it had been months before. But now there was another problem. My stomach was killing me. I don’t know how to really explain how I felt, but I couldn’t keep anything down and yet my stomach felt so swollen. Every position that I would get in would hurt so much and so on to my general doctor I went. After a couple tests and visits, we found that I had a stomach ulcer probably due to the medications that I was on and the Ibephrophen that I popped like candy. To treat it, I was prescribed another medicine and I had to lay off the Ibephrophen. Guess what happened? The headaches came roaring back. I was given a doctors excuse to stay out of PE for a month because I wasn’t supposed to exert myself. But still I chugged on in my Anatomy and Physiology 2 class. Thanksgiving came and we spent the day with some friends that we had made in Bible Study. The day was really nice, but when we came home that night, and I put the tree and lights up, I totally freaked out. Martin and the kids had gone to the store and setting up the tree and worn me out. I laid on the couch and watched the lights and suddenly felt like I was being hit with a ton wall. Memories of last year came flooding back and I realized how sick I really was…

So now December is here. I’ve taken finals at school, and while I failed PE (the easiest class ever) because of that stupid month off for that stupid stomach ulcer, I made a ‘B’ in A&P 2. None of us were even sure that I could make it, and yet I did. Maybe I didn’t get the ‘A’s that I was used to getting, but I couldn’t be more proud of myself for chugging through. I may not be exactly were I was before, but I have come a long way. This last year has certainly taught me patience and that my “normal” may never be what it once was…. And that’s okay.

Friday, December 12, 2008

*Happy Sigh*

Took my last final Tuesday night, and I'm VERY relieved to have a break from school. I think that I made a 'B' in Anatomy & Physiology 2, but an 'Incomplete' in PE due to that entire month that I missed workouts because of that stomach ulcer. *Sigh* Oh well, can't have everything! LOL

Still having headaches daily, but sometimes they aren't as severe (meaning just that I can live through them and halfway function). Almost done taking the medicine for the stomach ulcer, and I have an appointment Wednesday to see if it's healed. My stomach's not bothering me nearly like it was, so we'll see.

Also Wednesday marks one year since my brain surgery!! Didn't know if I'd live to celebrate, so I'm pretty thankful. Of course you are well aware of how recovery knocked the wind out of me, but I'm adjusting. I mean, pre-surgery it would have been fairly easy for me to make 'A's in school (AND still work), but I've struggled and fought so hard for that one 'B' that I'm pretty happy. And even though I'm not where I want to be, I am still further than anyone thought. NO ONE thought that I would be able to make it through this semester at school, so I'm pleased that I kinda did. (-; Too bad that PE, the easiest class ever, messed me up. But at least I didn't have to quit like everyone thought.

We leave next week to spend Christmas with family out of town. I couldn't be more excited, but I am nervous. I'm wondering how I'll do with the change of pressure on the airplane? I know over the summer I couldn't go under water because the pressure change made my head burst in pain... Guess I'll mention that question at the doctors appointment Wednesday. Not real excited to take drugs and be all dopey on my vacation, but I also don't want to be in a pain crisis either... Anyone care to share their experience?

Funny how many aspects of life something so big affects, huh? I've come to accept that I may always come across circumstances that I'll have to handle differently because of the tumor/surgery. I used to get angry by it, but I am learning to adjust and change my way of thinking. Instead of thinking how robbed I feel, I think of how to tackle a new obstacle. And I know that I can tackle each obstacle because I'm not alone. God's right by my side. (-:

OH!!! And tonight we're hosting a Christmas Party for our Bible Study group. I'm SUPER excited about it!! And see, there is another reason for me to celebrate. Last year I couldn't even walk at Christmas, and this year I'm able to host a party!! *Me sticking my tongue out at brain tumors/surgery*

Thursday, December 4, 2008


I have got to be the luckiest girl alive because I have the wonderful opportunity to celebrate Christmas on the other side of the continent. Initially when my dad invited us to join him out in California, I was just looking forward to seeing him and all of my family. Well, now I'm still looking foward to seeing everyone, but I'm looking forward to making new memories this Christmas.

As the first anniversary of my brain surgery creeps up, I seem to be remembering (almost reliving) the agony of last year. At this time last year, I was still being bounced from doctor to doctor not knowing what was wrong, but I was experiencing a lot of pain in my head and back and my left side was slowly getting increasing numb. The numbness was spreading like a horrible rash. First in my foot, then my finger tips, my hand, and my face. I remember thinking that I was going crazy and I didn't tell anyone exactly how severe my symptoms were.

I was in school last year, and gearing up for finals. I can remember how studying was impossible because of the headaches. I was taking two classes then, and when I sat down to take the finals, I knew that I wasn't prepared. I remember the feeling of overwelming anxiety swallowing me as I sat uncomfortably in my desk trying my best to ease the pain in my back. I can remember fighting back tears of frusteration. I know that the only reason that I passed those finals was because God stepped in. I can almost visualize Him slowly sitting in my desk and putting His hand around my sweaty hand that gripped the pencil. And blindly He began answering the questions for me. And because of His help, I passed.

The night of Thanksgiving this year, when I stared at the lights on my Christmas tree, I sort of freaked out. All the events of last year just came like a crushing wave and I could barely breath. If that was hard, I can't imagine how Christmas would be. So instead, I have something to look forward too! I'm looking foward to traveling and visiting my family. I'm looking forward to a BREAK away from here.

I think that our decision to spend Christmas away might have offended some of our family's that are here, and I am sorry for that. But at the same time, have some sensitivity! I nearly died last Christmas. It was horrible. And when I didn't die, I prayed for death because the pain I was in was something so horrible I can't even describe. I almost started feeling guilty about our trip, but you know what, I deserve it. I think that I earned it.

I want us to have happy memories and I don't want any of us to think about last year. I don't want my kids to remember seeing their mommy crying, slurring, and confused. I don't want them to remember seeing my walker in the middle of the living room. I don't want Martin to remember handing me TONS of medications, or remember me screaming out at him in pain and confusion.

I just want us to have a Merry Christmas. And each of us deserves that.

So there was my vent for today. Martin says that he thinks blogging and journaling is theraputic for me. I think he's right. (-: