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.
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.
2 comments:
happy anniversary!!
you're correct, there is no more 'normal' for you, no more mundane, trivial, ordinary. you stared at death and are still alive to talk about it. and that is a beautiful - and challenging at times - thing
Jessica,
It is always good to read stories from other BT patients. I really understand how you feel about life returning to "normal" and your ambition to do things... maybe before you're ready.
I have also blogged about my experience and need to update more. I will be hitting an important anniversary myself soon. 5 years in May.
Keep writing when you can, it's very cathartic. and I believe it helps with the depression. I should probably get on it myself. ;)
Post a Comment