Today is the first day that I'm not taking an anti-seizure pill (although I have to take one tomorrow). YAY!
Let me explain. Originally, I was prescribed 1000mg of Divalproex a day. Last week, I only took 500mg per day and now, I'm down to a pill every other day for the final week. By next Monday I should be done. I'm FREE! Hopefully, not only prescription free, but also seizure free.
I want to thank my friend Nancy who is a pharmacist. I was adamant to get off of the medication, and my nurse at the UW, as soon as I told her I was not going to follow her standard of care, never again responded to my emails for a taper down schedule. So, Nancy helped me plan a tapering of the drugs and I really, really appreciate it.
I have been incredibly fortunate to have so many people helping me throughout this journey. At each turn, I get great support.
I'm still scared to have a seizure, but each time the fear creeps into my mind I take a nice deep breath, and exhale slowly. I will not live in fear. I will not take drugs that wreak havoc on my body and mind. I will not give up. I will not just do what the doctors tell me to do. I will make my own decisions. I will research my options. I will try to keep my care natural. If my health deteriorates, I will reevaluate.
Showing posts with label divalproex. Show all posts
Showing posts with label divalproex. Show all posts
9.19.2011
9.14.2011
Prayers For Dee Dee
I received a very sad email this morning. You may remember Dee Dee Pearce from the comments on my blog. Dee Dee has always shared kind words of inspiration, always lifting me up. When I started my struggle, she was dealing with some abnormal breathing issues. The doctors ended up finding a large tumor behind her lungs (which they believed was benign) and as things progressed, it turned out it was lymphoma. (I'm simplifying her journey here - it is long and arduous, although you wouldn't know it by her attitude.) I'm very, very sad to share that her condition has greatly diminished. For islanders, you may also remember her as Diane Pearce. She gave many children (including myself) piano lessons. Here is the email, please read it below and send your love, your positive thoughts and prayers her direction.
Hello all – It has been quite a while since Dee Dee’s last update, so I will fill in with a current status report. A little over three weeks ago, Dee Dee’s health started into a steep decline. Her strength has eroded daily, her appetite has diminished, and now she sleeps most of the time. A hospital bed was brought in for two weeks ago which has made her far more comfortable. She is frustrated because she has lost her ability to speak, for the most part. A few of Dee Dee’s closest friends and I are providing 24/7 care. Dee Dee enjoyed several home concerts provided by our musical friends. These were a real joy for her. Though she is too tired now to receive visitors, I know she cherishes the memories of those visits as well as the many notes, calls, and cards from you. Thank you very much for your support during this time.
Walt
It breaks my heart to think about Dee Dee in pain, unable to do the things that she loves so dearly. She loves her horses and music; her joy is in the beauty of nature and those around her. Dee Dee has been a rock in my support system, and I am so grateful for her. Please help me send love waves her direction so that she can have a full warm heart, no pain, and more energy so that she can visit with her husband and friends.
On another disappointing note today, my cat is very sick. The vet thinks it's bone cancer. I know it sounds crazy to love a cat so much, but I've been crying all day. I pictured her, Stella the Pretty Pretty Princess (a nickname that I always took seriously, but everyone thought was a joke because she used to attack people), on my lap until the end. In fact, I was more worried that Danny might get stuck with too many pets if I die. It didn't occur to me that she might die first. How selfish of me. So, in the meantime, by the recommendation of the vet, we're going to pump Stella full of oral pain killers, vitamins, steroids and antibiotics, hoping that it makes her better. It's not lost on me that I'm doing to my cat what I won't even do to myself. At least I have a few weeks before I have to make a decision about Stella. I can't even think about it without sobbing.
The bright side of this tough day, has been the decrease of my medicine. Instead of just becoming despondent with all the bad news, I took a 2 hour nap then got back up. I did a load of laundry and started a new batch of sprouts. Just but cutting back to one 500mg pill a day of the Divalproex gives me more energy. The energy helps me conquer more, and put things in perspective. It helps me keep a positive spin. Although I've been crying off and on all day, I'm still functioning. That's big news for me. It makes me feel strong and capable. Capable of anything, even kicking this tumor's butt. I'm just sad that we can't all kick cancer's ass together.
Hello all – It has been quite a while since Dee Dee’s last update, so I will fill in with a current status report. A little over three weeks ago, Dee Dee’s health started into a steep decline. Her strength has eroded daily, her appetite has diminished, and now she sleeps most of the time. A hospital bed was brought in for two weeks ago which has made her far more comfortable. She is frustrated because she has lost her ability to speak, for the most part. A few of Dee Dee’s closest friends and I are providing 24/7 care. Dee Dee enjoyed several home concerts provided by our musical friends. These were a real joy for her. Though she is too tired now to receive visitors, I know she cherishes the memories of those visits as well as the many notes, calls, and cards from you. Thank you very much for your support during this time.
Walt
It breaks my heart to think about Dee Dee in pain, unable to do the things that she loves so dearly. She loves her horses and music; her joy is in the beauty of nature and those around her. Dee Dee has been a rock in my support system, and I am so grateful for her. Please help me send love waves her direction so that she can have a full warm heart, no pain, and more energy so that she can visit with her husband and friends.
On another disappointing note today, my cat is very sick. The vet thinks it's bone cancer. I know it sounds crazy to love a cat so much, but I've been crying all day. I pictured her, Stella the Pretty Pretty Princess (a nickname that I always took seriously, but everyone thought was a joke because she used to attack people), on my lap until the end. In fact, I was more worried that Danny might get stuck with too many pets if I die. It didn't occur to me that she might die first. How selfish of me. So, in the meantime, by the recommendation of the vet, we're going to pump Stella full of oral pain killers, vitamins, steroids and antibiotics, hoping that it makes her better. It's not lost on me that I'm doing to my cat what I won't even do to myself. At least I have a few weeks before I have to make a decision about Stella. I can't even think about it without sobbing.
The bright side of this tough day, has been the decrease of my medicine. Instead of just becoming despondent with all the bad news, I took a 2 hour nap then got back up. I did a load of laundry and started a new batch of sprouts. Just but cutting back to one 500mg pill a day of the Divalproex gives me more energy. The energy helps me conquer more, and put things in perspective. It helps me keep a positive spin. Although I've been crying off and on all day, I'm still functioning. That's big news for me. It makes me feel strong and capable. Capable of anything, even kicking this tumor's butt. I'm just sad that we can't all kick cancer's ass together.
9.05.2011
I'm Becoming A Mossback
Well. Things changed again. I never started taking the new pill. When we picked up the new prescription the woman behind the counter said, "That will be $192 please." I looked at her wide eyed, and quickly asked her if I HAD to buy it. Fortunately, she was incredibly kind, and said absolutely not. She recommended that I contact my doctor and ask for a different, more affordable drug (for the record $192 was just the portion that I had to pay out of pocket, the full price tag for the drugs for those without insurance was almost five hundred dollars. Yuck).
I have yet to contact Dr Graham. I'm so over this stupid anti-seizure debacle. It's never ending. Right now our lives crazy anyway. I'm sorry to drop this news over the blog instead of talking to everyone in person, but it's too hard to contact everyone. Danny got a job back in the elevator/escalator trade so we're moving back to Seattle! It's a fantastic job, and I'm excited to watch this next phase of our lives unfold.
Within the past five days Dan got a job, started safety training, we researched places to live (we already knew the areas we wanted to live), found the perfect place, and signed a lease. We move in on October 1st. It is a 6 minute walk from our new home to a PCC Natural Market. It's also a fifteen minute walk to the library. To save the best part for last, we will be living one block from Greenlake where we can walk on the trail. We get to have our dog Emma, and cat Stella. It's very exciting! Obviously, it's going to be incredibly hard to move away from my parents, and all of my amazing Wenatchee friends, but we will come back to Wenatchee often, and our friends will always be welcome in our guestroom.
It's going to be a healthy lifestyle change for us, this new move. I'm trilled that we have the opportunity to walk for groceries, and books. I can't wait to link my hand in Danny's, grab Emma and walk on the lake path. Our new little home has a communal garden which I can weed and eventually contribute to, and I'm thrilled to learn about the plants living on the wet side of the mountains, it's a whole new zone. This home is such a gift! What an amazing opportunity! Now I will be able to walk everywhere. I will have foot freedom!! WOO HOO!!! I had been very isolated since I could no longer drive. I feel a huge weight off my heart. I'm ready to explore and test my limits. Maybe, eventually, I'll even find a way to get from our place to my oncologist's office through the bus routes. I've only ridden a city bus once (thank you Auten, that was fun!), but I want to become independent again. As long as I don't have a stinking seizure in public. That would be embarrassing.
As for the anti-seizure medication challenge, I'm taking a break. I'll still keep taking my current drug to appease my oncologist, but if things worsen I'll contact her and try again. It's tough. Danny and I talked about the whole medication issue again last night and he strongly feels like my current drug is not a viable solution. But what do you do when things are so busy, life is changing quickly, there's packing to do and a move across the mountains. We still need to maintain daily life, and I feel like on this medicine alone I'm barely keeping my head above water. Additional medication might cause me to sink. Sometimes it's simply a fact of bad timing and if we do too much at once, at this point, I might explode. I guess Divalproex is going to have to be a stop-gap. We will revisit the anti-seizure medication next month. In the meantime I think I'll try to do some extra meditation. It couldn't hurt.
I have yet to contact Dr Graham. I'm so over this stupid anti-seizure debacle. It's never ending. Right now our lives crazy anyway. I'm sorry to drop this news over the blog instead of talking to everyone in person, but it's too hard to contact everyone. Danny got a job back in the elevator/escalator trade so we're moving back to Seattle! It's a fantastic job, and I'm excited to watch this next phase of our lives unfold.
Within the past five days Dan got a job, started safety training, we researched places to live (we already knew the areas we wanted to live), found the perfect place, and signed a lease. We move in on October 1st. It is a 6 minute walk from our new home to a PCC Natural Market. It's also a fifteen minute walk to the library. To save the best part for last, we will be living one block from Greenlake where we can walk on the trail. We get to have our dog Emma, and cat Stella. It's very exciting! Obviously, it's going to be incredibly hard to move away from my parents, and all of my amazing Wenatchee friends, but we will come back to Wenatchee often, and our friends will always be welcome in our guestroom.
It's going to be a healthy lifestyle change for us, this new move. I'm trilled that we have the opportunity to walk for groceries, and books. I can't wait to link my hand in Danny's, grab Emma and walk on the lake path. Our new little home has a communal garden which I can weed and eventually contribute to, and I'm thrilled to learn about the plants living on the wet side of the mountains, it's a whole new zone. This home is such a gift! What an amazing opportunity! Now I will be able to walk everywhere. I will have foot freedom!! WOO HOO!!! I had been very isolated since I could no longer drive. I feel a huge weight off my heart. I'm ready to explore and test my limits. Maybe, eventually, I'll even find a way to get from our place to my oncologist's office through the bus routes. I've only ridden a city bus once (thank you Auten, that was fun!), but I want to become independent again. As long as I don't have a stinking seizure in public. That would be embarrassing.
As for the anti-seizure medication challenge, I'm taking a break. I'll still keep taking my current drug to appease my oncologist, but if things worsen I'll contact her and try again. It's tough. Danny and I talked about the whole medication issue again last night and he strongly feels like my current drug is not a viable solution. But what do you do when things are so busy, life is changing quickly, there's packing to do and a move across the mountains. We still need to maintain daily life, and I feel like on this medicine alone I'm barely keeping my head above water. Additional medication might cause me to sink. Sometimes it's simply a fact of bad timing and if we do too much at once, at this point, I might explode. I guess Divalproex is going to have to be a stop-gap. We will revisit the anti-seizure medication next month. In the meantime I think I'll try to do some extra meditation. It couldn't hurt.
8.24.2011
Divalproex Is The Devil
The past few days have been tough. The family has been researching different alternative medicine, different unusual treatments that are being used in other countries. We're lead to them by other brain tumor patients who have had success. It's wonderful, and yet at the same time I feel overwhelmed.
In the meantime, we're trying to get appointments with a neuro-oncologist to deal with my anti-seizure medicine. The side effects are too extreme for me. I'm grumpy almost all of the time, depressed for no reason. I'm trying to keep a happy face, but I'm just having such a hard time functioning. There are lots of other anti-seizure medicine out there, so I'm hoping that we can find a better fit. If I can't find a good fit, I might just get off the medicine and elect to avoid driving and other activities that would be dangerous for a seizure ridden person. I feel crazy. I'm definitely not myself. My radiation oncologist already told me that anti-seizure medicine (for a person with my diagnosis) may not even change a thing to avoid an episode. With that lingering in my head, I'm not going to lose myself in medication at this cost.
One more thing. I'm sure it's nothing, but I had an atypical mole removed on my chest and the pathology came back positive. I now have to go back in for more digging to remove the areas around the mole and have it sent for even further testing. I'm feeling fine about the results, especially after having friends share some scary stories about precancerous mole episodes, it's just not fun.
Normally I could shake things off, but right now I'm just in a funk. I'm funky. My vision is blurry, I can't shake my head quickly, I'm groggy, I sleep over 15 hours a day/night, and my eyes are watering, but I'm not crying about anything. I'm not sad, I'm just emotional. I HATE PILLS. Specifically, divalproex (depakote).
In the meantime, we're trying to get appointments with a neuro-oncologist to deal with my anti-seizure medicine. The side effects are too extreme for me. I'm grumpy almost all of the time, depressed for no reason. I'm trying to keep a happy face, but I'm just having such a hard time functioning. There are lots of other anti-seizure medicine out there, so I'm hoping that we can find a better fit. If I can't find a good fit, I might just get off the medicine and elect to avoid driving and other activities that would be dangerous for a seizure ridden person. I feel crazy. I'm definitely not myself. My radiation oncologist already told me that anti-seizure medicine (for a person with my diagnosis) may not even change a thing to avoid an episode. With that lingering in my head, I'm not going to lose myself in medication at this cost.
One more thing. I'm sure it's nothing, but I had an atypical mole removed on my chest and the pathology came back positive. I now have to go back in for more digging to remove the areas around the mole and have it sent for even further testing. I'm feeling fine about the results, especially after having friends share some scary stories about precancerous mole episodes, it's just not fun.
Normally I could shake things off, but right now I'm just in a funk. I'm funky. My vision is blurry, I can't shake my head quickly, I'm groggy, I sleep over 15 hours a day/night, and my eyes are watering, but I'm not crying about anything. I'm not sad, I'm just emotional. I HATE PILLS. Specifically, divalproex (depakote).
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