Before I launch into yet another blog full of my depressing secret thoughts, I just want to say that the reason I haven't blogged in a week is because I spent a wonderful weekend in New York with my mom and my girls. It was some much needed girl time and we had such a fantastic time. We went to see Annie because Emma will be starring in her upcoming middle school play with the lead role. It was so great to see her meeting the actress who played Annie in the Broadway show! One of those moments you never forget! I really thought I'd come back feeling refreshed but instead the what-if's set in just a few days later.
Aside from the biggest what-if....What if this never happened? What would our lives look like now?, there's so many small what-if's every day. Sometimes I feel consumed by them. I find I do well for long periods of time and then just have a few days where I crash. These past few days my jaw has been killing me from clenching and grinding and I feel just tense all over. I know this too shall pass but while it's happening, there's all of those what-if's.
What if things don't get any better once the Keppra is out of his system? I know we're only day four into the weaning process but I'm getting scared that I've put far too much hope into things changing. Especially with the fist pounding on the leg. What if it's still just as incessant as it is now? How will I handle that?
What if the application I just sent into MassHealth doesn't get approved? Or doesn't get approved before our current health insurance stops?
What if I didn't do everything correctly setting Tim up with Medicare, a drug plan, and supplementary insurance?
What if Tim's next MRI shows that all of this concern over med changes is trivial and I should have been concerned over much bigger things?
What if Tim has another seizure? What if Keppra is the only anti seizure drug that works for him?
And then there's the big what-if's that plague me when I try to think long term. What if when I eventually return to the working force, I'm too old to start a new career? I would have thought at forty years old I would be established in my career and wouldn't have to be thinking this way. But because of the circumstances of my recent life, I don't see myself going back to a field where there's any caregiving involved. I believe I'll be ready for something totally new. But how do I go about this and will they even want me?
What if I don't know what to do with my life after all of this? Caring for Tim and supporting my girls has become my full time life. What am I without that? I don't do anything else! Who am I anymore?
If this case of the downers is anything like the other ones I've been through, I know in a day or two I won't be feeling so defeated. I'm just ready for a period of time where there aren't any big (or even small) decisions to make. It seems every time one thing gets figured out, along comes the next. I'd just like some time to stop, relax, and enjoy. Now if I can only figure out what I enjoy anymore!
Friday, January 25, 2013
Wednesday, January 16, 2013
This is not how it was supposed to be
That's the phrase that runs through my head on and off, especially on the days that I'm not coping as well. Most days I try to just go with the flow and if not enjoy, at least face the new normal. But sometimes those feelings of "this is not how it was supposed to be" still creep up on me.
Seventeen and a half years ago, I married the perfect man. I always wish the people who met Tim "after" could see what he used to be like. He was witty, fun, gentle, generous, social, extremely orgainized, helpful, and a great conversationalist. When we used to go to a party where we didn't know very many people, Tim would spend the whole ride home telling me all about the people he met - where they worked, what their hobbies were, what they liked and disliked. Even if I talked to those same people, I never would have had all of the information he had even if I spent a week with them! He had this way of making people feel like he was truly interested in everything they had to say even if it wasn't something he would normally be interested in.
Days like today I find myself missing the "old Tim" so much! Not that he did anything wrong, mind you, he was just as polite and easy going as ever but sometimes I just wish I could have even a day of what it used to be like. It started off today with getting him up early so we could head out a little early (due to the snow) for his appointment with the neuropsychiatrist at MGH. I don't know if it was the early hour or just one of those days for him but he required constant verbal prompting to get through showering, shaving, putting on appropriately warm clothes for the day, and shoveling the deck off. Luckily the roads weren't as bad as expected and we got there without too much trouble.
When we got back home, I asked him if he wanted to come out to UPS with me to mail Emma's tablet she got for Christmas back to the manufacturer due to defects anad then on to BJ's for some shopping. He likes to get out so he said yes he'd like to come. While I stood at the counter filling out the paperwork for shipping the tablet, Tim proceeded to wander all over the UPS. The man waiting on me kept looking over my shoulder at him with an expression of "what is with this guy?" written all over his face. I'm always uncomfortable in these situations as I don't just want to blurt out "he has brain cancer, all right?" I finally sent him out to the car and told him I'd meet him there. Imagine my surprise when I came out and he had pulled the car up in front of the store! He's not supposed to be driving!
Next was BJ's. Tim was pushing the carriage while I was getting the things on our list. Quite frequently I would turn around from the shelf with a heavy item only to find he was already clear down the other end of the aisle heading into the next aisle. I finally took over with the carriage and had him grab the things we needed. While I checked out at the register, Tim once again wandered around the front part of the store. He's just completely unable to just stand and wait with me. And today it was getting to me!
Time to load the car. I opened the trunk and Tim says "you got this?" I patiently said "no, I could use your help putting things in the car." He stood there for the longest time holding a few items from the carriage while I loaded things into the trunk. He finally said "Should I load some things into the backseat." To which I answered "I think it would be easier if we just put them all in the trunk then we'll only have one place to unload from." He replied "exactly" and immediately began to load into the backseat. I tried to reiterate what I had just said but he just continued what he was doing. I find this fairly often now. He'll ask me how I want him to do something and then proceed to do it another way.
I sincerely hope that it doesn't just sound like I'm venting. It just amazes me sometimes how different my life is now. And that's when the phrase enters "this is not how it was supposed to be." Maybe it's the fact that I've spent the last week trying to figure out medicare enrollment and medigap insurance versus medicare advantage. And add to that trying to figure out the application for Mass Health for me and the girls and my brain is about to explode!
People often ask what they can do for me and I'm never able to come up with a tangible thing that I need done. Even when it's offered I have a lot of trouble taking the help that's offered. I recently realized thanks to my very special cousin Lisa Santospago, that it's not exactly help that I need. It's time to laugh, it's time to feel "normal" and just enjoy some real conversation. Even though she lives close to an hour away, she has been making it a priority to get together with me and just "hang out" and every time I end up feeling revived and ready to face things again. She's come out to do something with me almost every weekend and we joke the weekends we don't do something that we're missing each other. Same thing when I get together with friends, the next day I feel so much better! A lot of times people say they don't know what to say or do and honestly I don't need to talk about what's going on at home. Unless they want to hear about it, I don't really need to talk about it. What I need is to just have that time to let go, laugh, and feel normal.
Stopping work was definitely the right thing to do for me and my family but I don't think I anticipated the loneliness that I would feel without that community of women friends that I had. And it wasn't like we talked every day about my home life but we laughed and shared stories of our kids, and when I was having a bad day there were plenty of hugs to go around. Through no fault of his own, Tim is unable to recognize at all if I'm feeling sad or just plain having a bad day. Even if I tell him outright, there's still not really a reaction. It's hard not to have "that person." The one you can share just a look with and they know exactly what you're thinking. I'm still trying to remain hopeful that when we start the Keppra weaning process next week that I will see at least some changes but days like today are just plain hard.
Seventeen and a half years ago, I married the perfect man. I always wish the people who met Tim "after" could see what he used to be like. He was witty, fun, gentle, generous, social, extremely orgainized, helpful, and a great conversationalist. When we used to go to a party where we didn't know very many people, Tim would spend the whole ride home telling me all about the people he met - where they worked, what their hobbies were, what they liked and disliked. Even if I talked to those same people, I never would have had all of the information he had even if I spent a week with them! He had this way of making people feel like he was truly interested in everything they had to say even if it wasn't something he would normally be interested in.
Days like today I find myself missing the "old Tim" so much! Not that he did anything wrong, mind you, he was just as polite and easy going as ever but sometimes I just wish I could have even a day of what it used to be like. It started off today with getting him up early so we could head out a little early (due to the snow) for his appointment with the neuropsychiatrist at MGH. I don't know if it was the early hour or just one of those days for him but he required constant verbal prompting to get through showering, shaving, putting on appropriately warm clothes for the day, and shoveling the deck off. Luckily the roads weren't as bad as expected and we got there without too much trouble.
When we got back home, I asked him if he wanted to come out to UPS with me to mail Emma's tablet she got for Christmas back to the manufacturer due to defects anad then on to BJ's for some shopping. He likes to get out so he said yes he'd like to come. While I stood at the counter filling out the paperwork for shipping the tablet, Tim proceeded to wander all over the UPS. The man waiting on me kept looking over my shoulder at him with an expression of "what is with this guy?" written all over his face. I'm always uncomfortable in these situations as I don't just want to blurt out "he has brain cancer, all right?" I finally sent him out to the car and told him I'd meet him there. Imagine my surprise when I came out and he had pulled the car up in front of the store! He's not supposed to be driving!
Next was BJ's. Tim was pushing the carriage while I was getting the things on our list. Quite frequently I would turn around from the shelf with a heavy item only to find he was already clear down the other end of the aisle heading into the next aisle. I finally took over with the carriage and had him grab the things we needed. While I checked out at the register, Tim once again wandered around the front part of the store. He's just completely unable to just stand and wait with me. And today it was getting to me!
Time to load the car. I opened the trunk and Tim says "you got this?" I patiently said "no, I could use your help putting things in the car." He stood there for the longest time holding a few items from the carriage while I loaded things into the trunk. He finally said "Should I load some things into the backseat." To which I answered "I think it would be easier if we just put them all in the trunk then we'll only have one place to unload from." He replied "exactly" and immediately began to load into the backseat. I tried to reiterate what I had just said but he just continued what he was doing. I find this fairly often now. He'll ask me how I want him to do something and then proceed to do it another way.
I sincerely hope that it doesn't just sound like I'm venting. It just amazes me sometimes how different my life is now. And that's when the phrase enters "this is not how it was supposed to be." Maybe it's the fact that I've spent the last week trying to figure out medicare enrollment and medigap insurance versus medicare advantage. And add to that trying to figure out the application for Mass Health for me and the girls and my brain is about to explode!
People often ask what they can do for me and I'm never able to come up with a tangible thing that I need done. Even when it's offered I have a lot of trouble taking the help that's offered. I recently realized thanks to my very special cousin Lisa Santospago, that it's not exactly help that I need. It's time to laugh, it's time to feel "normal" and just enjoy some real conversation. Even though she lives close to an hour away, she has been making it a priority to get together with me and just "hang out" and every time I end up feeling revived and ready to face things again. She's come out to do something with me almost every weekend and we joke the weekends we don't do something that we're missing each other. Same thing when I get together with friends, the next day I feel so much better! A lot of times people say they don't know what to say or do and honestly I don't need to talk about what's going on at home. Unless they want to hear about it, I don't really need to talk about it. What I need is to just have that time to let go, laugh, and feel normal.
Stopping work was definitely the right thing to do for me and my family but I don't think I anticipated the loneliness that I would feel without that community of women friends that I had. And it wasn't like we talked every day about my home life but we laughed and shared stories of our kids, and when I was having a bad day there were plenty of hugs to go around. Through no fault of his own, Tim is unable to recognize at all if I'm feeling sad or just plain having a bad day. Even if I tell him outright, there's still not really a reaction. It's hard not to have "that person." The one you can share just a look with and they know exactly what you're thinking. I'm still trying to remain hopeful that when we start the Keppra weaning process next week that I will see at least some changes but days like today are just plain hard.
Sunday, January 13, 2013
The Trials and Tribulations of Med Changes
I spent my career before Tim got sick working with children on the autism spectrum. First as a paraprofessional and later as an ABA Therapist. I earned my certification as a Board Certified assistant Behavior Analyst during my third year as an ABA Therapist. I went through med changes with many children over the years. And yes, they were hard. But I was only with them six hours a day. Assuredly their families were the ones who went through the bulk of the behaviors that invariably occur while changing meds. Now I have such a greater appreciation for what those families faced.
For years now I've blamed Tim's ever-increasing frustrating behaviors on the effects of the tumor and scar tissue that has invaded his brain. Granted it may still be what is going on. However, once he started seeing a neuropsychiatrist this past November, they strongly urged us to get Tim off of Keppra as it is known to cause behavior issues and they couldn't adequately work on changing his behaviors without knowing if Keppra was the cause of them. I was so frustrated with myself at this point as I knew from kids that I had worked with in the past that Keppra does this, but had just completely overlooked it with Tim. I immediately got on the Internet and started reading up on what kind of side effects people saw from this medication.
Over the years, behaviors have cropped up with Tim. Some started way back and some have been more recent but many of them seem to fit with what is reported for this medication. As I said in my first post, Tim's biggest presenting symptom was anger. So when we started to see these rages that would take place here and there, we just assumed it was again the brain damage caused by the tumor and scar tissue. It isn't like before where he was angry all the time, rather he is unable to control himself sometimes if he gets overly excited or the kids are loud, or he's startled in some way. According to many reports, Keppra causes these rages which have even been named "Kepprage."
Another behavior we have been facing with Tim, is his constant restlessness. It presents in a couple of forms, one of them being more concerning and one just plain annoying. The concerning one is that he wanders all of the time. Last fourth of July, he wandered away from us in Boston and we couldn't find him for over 3 hours - it was terrifying! The other behavior is constant wiggling/shaking and this need to forcefully hit his leg with his fist all of the time. It drives us all crazy! And he seems completely incapable of controlling it. Turns out Keppra can cause restlessness and tic-like behaviors.
And lastly, people who have been Keppra for a long time and then come off of it report a feeling of coming out of a fog. I now have to wonder if maybe he'll be more with it if he doesn't have Keppra in his system. Again, all of these things can still be directly related to the brain damage but we'll never know without a change in meds.
So, after that first neuropsych appointment, a med change was recommended. He was going to titrate up on a new med, Lamictal, which was known to be a mood stabilizer as well as an anti-seizure med. And once he was at full dose, he would slowly wean off of the Keppra. Sounded like a great plan until about three days into it when he suddenly didn't have small rages anymore but became borderline violent. Lamictal was immediately stopped and after about a week or so, he returned to how he was before Lamictal.
We waited a couple of weeks to see his neurooncologist and at that visit it was decided to try weaning him off seizure meds completely since he had never actually had a seizure. Things were going great for a week and a half as he went down slowly on the Keppra. He was hitting his leg less, he was able to sit for longer periods of time, and his patience was far better in regards to noises and activity. I was feeling hopeful for the first time in a while. And then, on his birthday no less, he had his first seizure. It was terrifying for the kids but somehow I remained incredibly calm through the whole thing. Not sure where that came from!
Anyhow, during our trip to the local ER, they consulted with his doctors at MGH and decided to not only bump his Keppra back up but also to start a new med, Vimpat. Again, he is going to slowly titrate up on the Vimpat and once he's at full dose, he will wean off of the Keppra. It was beyond shocking when I went to pick the Vimpat up at the pharmacy and found out it is $100 a month but if it works, then we will make it work financially. This week he goes up to the full dose and next week he will begin weaning off of Keppra. I can't wait to see if some or all of his behaviors improve. The Vimpat so far has given him some issues with short term memory - he will ask questions over and over again that we have just answered. But I'll take that over the other behaviors any day! He's also pretty tired but since anti-seizure meds are known for that and he's on two of them right now, that's understandable.
I try to tell myself not to get my hopes up but I truly am so hopeful about seeing positive changes once the Keppra is completely out of his system. I really hope I am not thoroughly disappointed!
For years now I've blamed Tim's ever-increasing frustrating behaviors on the effects of the tumor and scar tissue that has invaded his brain. Granted it may still be what is going on. However, once he started seeing a neuropsychiatrist this past November, they strongly urged us to get Tim off of Keppra as it is known to cause behavior issues and they couldn't adequately work on changing his behaviors without knowing if Keppra was the cause of them. I was so frustrated with myself at this point as I knew from kids that I had worked with in the past that Keppra does this, but had just completely overlooked it with Tim. I immediately got on the Internet and started reading up on what kind of side effects people saw from this medication.
Over the years, behaviors have cropped up with Tim. Some started way back and some have been more recent but many of them seem to fit with what is reported for this medication. As I said in my first post, Tim's biggest presenting symptom was anger. So when we started to see these rages that would take place here and there, we just assumed it was again the brain damage caused by the tumor and scar tissue. It isn't like before where he was angry all the time, rather he is unable to control himself sometimes if he gets overly excited or the kids are loud, or he's startled in some way. According to many reports, Keppra causes these rages which have even been named "Kepprage."
Another behavior we have been facing with Tim, is his constant restlessness. It presents in a couple of forms, one of them being more concerning and one just plain annoying. The concerning one is that he wanders all of the time. Last fourth of July, he wandered away from us in Boston and we couldn't find him for over 3 hours - it was terrifying! The other behavior is constant wiggling/shaking and this need to forcefully hit his leg with his fist all of the time. It drives us all crazy! And he seems completely incapable of controlling it. Turns out Keppra can cause restlessness and tic-like behaviors.
And lastly, people who have been Keppra for a long time and then come off of it report a feeling of coming out of a fog. I now have to wonder if maybe he'll be more with it if he doesn't have Keppra in his system. Again, all of these things can still be directly related to the brain damage but we'll never know without a change in meds.
So, after that first neuropsych appointment, a med change was recommended. He was going to titrate up on a new med, Lamictal, which was known to be a mood stabilizer as well as an anti-seizure med. And once he was at full dose, he would slowly wean off of the Keppra. Sounded like a great plan until about three days into it when he suddenly didn't have small rages anymore but became borderline violent. Lamictal was immediately stopped and after about a week or so, he returned to how he was before Lamictal.
We waited a couple of weeks to see his neurooncologist and at that visit it was decided to try weaning him off seizure meds completely since he had never actually had a seizure. Things were going great for a week and a half as he went down slowly on the Keppra. He was hitting his leg less, he was able to sit for longer periods of time, and his patience was far better in regards to noises and activity. I was feeling hopeful for the first time in a while. And then, on his birthday no less, he had his first seizure. It was terrifying for the kids but somehow I remained incredibly calm through the whole thing. Not sure where that came from!
Anyhow, during our trip to the local ER, they consulted with his doctors at MGH and decided to not only bump his Keppra back up but also to start a new med, Vimpat. Again, he is going to slowly titrate up on the Vimpat and once he's at full dose, he will wean off of the Keppra. It was beyond shocking when I went to pick the Vimpat up at the pharmacy and found out it is $100 a month but if it works, then we will make it work financially. This week he goes up to the full dose and next week he will begin weaning off of Keppra. I can't wait to see if some or all of his behaviors improve. The Vimpat so far has given him some issues with short term memory - he will ask questions over and over again that we have just answered. But I'll take that over the other behaviors any day! He's also pretty tired but since anti-seizure meds are known for that and he's on two of them right now, that's understandable.
I try to tell myself not to get my hopes up but I truly am so hopeful about seeing positive changes once the Keppra is completely out of his system. I really hope I am not thoroughly disappointed!
Thursday, January 10, 2013
A little background
I have been thinking about doing this blog for quite some time now. I'm not ambitious enough to write a book but have wanted to share my experiences of being a caregiver to my husband who has brain cancer in some way.
I also have never blogged before so bear with me as I try to figure it all out. I'm not sure where to start so I guess I'll start at the beginning for now though I am only going to tell the background of how we ended up here. After that I plan on telling more the daily/weekly stories of what is going on in our lives with maybe some references to things we've already been through.
My name is Anna and I am 40 years old. Is this where I thought I'd be at 40? Absolutely not! Hence the reason for the title of my blog.
My husband, Tim, was diagnosed with Grade 3 anaplastic oligoastrocytoma four years ago. New Year's Eve 2008 to be exact. He was 38 at the time. We have two daughters who are now 10 and 13. Up until about a year before his diagnosis, we were living a perfectly normal if not better than normal life. Tim was a perfect husband and father. Extremely gentle, always involved with the kids, he cooked & cleaned, he grocery shopped, he paid all the bills, and was always up for hanging out with our friends. Slowly over that year before diagnosis, he was doing less and less around the house, didn't really want to see any of our friends, and was angry at myself and the girls (as well as extended family) most of the time. He tried to pick fights with me constantly and seemed to be more content if he was able to get a rise out of me.
We (his parents, my parents, and myself) kept blaming it on his work. He did complain a lot about work being stressful and about fighting with his boss so we thought this was what was going on. Eventually by the end of that year, I had a long list of things that just "weren't right." These included, but weren't limited to, the anger already mentioned, headaches, very low tolerance to noise, being unwilling to help with anything anymore, and short term memory issues. We finally went to see his PCP where I shared this list. I was somewhat convinced it had something to do with his cholesterol meds as I had found some anecdotal evidence to support this on the internet. His doctor didn't think that was it but agreed to trial off of it to see. He also decided to send Tim for a cat scan "just to rule anything else out."
That appointment occurred on Tim's birthday (December 30th, 2008). Because his anger and yelling had gotten so bad at that point, right after the appointment, I went down the Cape to my parents house to join my children who were already there. We just needed a break from him for a while so planned on staying for Christmas break and then going from there. Tim went for his cat scan on the 31st by himself. I never expected in a million years the call I got that day from him saying they were transporting him to Mass General because they had found a tumor.
My dad and I immediately got in the car and drove to Mass General - not an easy feat considering it was the middle of a blizzard! It took us three and a half hours to get there! He was sent for an MRI which confirmed the tumor. Within days, he went in for his first of three craniotomies. The biopsy from that told us that it was cancer.
Imagine going from feeling like you're on the verge of divorce due to all of the unexplained anger and yelling, and now you find out your husband has cancer and you have to drop all of those unresolved emotions and step up to the plate to take charge of his care. It has been a rollercoaster these last four years. I've been home with him full time for about a year now and life is never just even keeled anymore.
I'm going to stop here for now but will try to blog at least once weekly about what we are going through at the time and hopefully fill in some of the gaps over time as well.
I also have never blogged before so bear with me as I try to figure it all out. I'm not sure where to start so I guess I'll start at the beginning for now though I am only going to tell the background of how we ended up here. After that I plan on telling more the daily/weekly stories of what is going on in our lives with maybe some references to things we've already been through.
My name is Anna and I am 40 years old. Is this where I thought I'd be at 40? Absolutely not! Hence the reason for the title of my blog.
My husband, Tim, was diagnosed with Grade 3 anaplastic oligoastrocytoma four years ago. New Year's Eve 2008 to be exact. He was 38 at the time. We have two daughters who are now 10 and 13. Up until about a year before his diagnosis, we were living a perfectly normal if not better than normal life. Tim was a perfect husband and father. Extremely gentle, always involved with the kids, he cooked & cleaned, he grocery shopped, he paid all the bills, and was always up for hanging out with our friends. Slowly over that year before diagnosis, he was doing less and less around the house, didn't really want to see any of our friends, and was angry at myself and the girls (as well as extended family) most of the time. He tried to pick fights with me constantly and seemed to be more content if he was able to get a rise out of me.
We (his parents, my parents, and myself) kept blaming it on his work. He did complain a lot about work being stressful and about fighting with his boss so we thought this was what was going on. Eventually by the end of that year, I had a long list of things that just "weren't right." These included, but weren't limited to, the anger already mentioned, headaches, very low tolerance to noise, being unwilling to help with anything anymore, and short term memory issues. We finally went to see his PCP where I shared this list. I was somewhat convinced it had something to do with his cholesterol meds as I had found some anecdotal evidence to support this on the internet. His doctor didn't think that was it but agreed to trial off of it to see. He also decided to send Tim for a cat scan "just to rule anything else out."
That appointment occurred on Tim's birthday (December 30th, 2008). Because his anger and yelling had gotten so bad at that point, right after the appointment, I went down the Cape to my parents house to join my children who were already there. We just needed a break from him for a while so planned on staying for Christmas break and then going from there. Tim went for his cat scan on the 31st by himself. I never expected in a million years the call I got that day from him saying they were transporting him to Mass General because they had found a tumor.
My dad and I immediately got in the car and drove to Mass General - not an easy feat considering it was the middle of a blizzard! It took us three and a half hours to get there! He was sent for an MRI which confirmed the tumor. Within days, he went in for his first of three craniotomies. The biopsy from that told us that it was cancer.
Imagine going from feeling like you're on the verge of divorce due to all of the unexplained anger and yelling, and now you find out your husband has cancer and you have to drop all of those unresolved emotions and step up to the plate to take charge of his care. It has been a rollercoaster these last four years. I've been home with him full time for about a year now and life is never just even keeled anymore.
I'm going to stop here for now but will try to blog at least once weekly about what we are going through at the time and hopefully fill in some of the gaps over time as well.
Subscribe to:
Posts (Atom)