I've submitted my paperwork for disability to the State of California's EDD office. This means (as long as my claim is not denied) that I'm officially on disability as of mid August.
With the place my head has been in along with the chronic fatigue, nausea and pain, I haven't been able to work full time for quite a while now. In addition, unless I'm having a really good day, I'm still hesitant to get behind the wheel of a car due to the vertigo and dizziness that I'm still experiencing.
I wanted to work part time but the state doesn't make it easy to do that while receiving disability payments. So, I'm off work full time.
In addition my co-workers have been informed that I'm taking a leave of absence due to a "chronic medical condition" (I love euphemisms). Letting the cat out of the bag is good, so to speak, since I think most people at work had begun to suspect that I had decided to leave the company for another job. I've no intention of doing that. Hopefully I'll be back to work in the near future.
One of my aunts made the trek down to our little hick town and took me to lunch today. We had bbq at my current favorite, the Trail Dust here in town. She also brought homemade lasagna and salad with her that Wendy and I could heat later for dinner. It was DELICIOUS.
I can't express how grateful I am for all the thoughtful gestures that have been made by my friends and family. It's comforting to know that they are there for me when I need them.
Friday, August 29, 2008
Wednesday, August 27, 2008
Benevolent Insurance?
I was visited by a Registered Nurse this morning. She works for my insurance company in a program for patients with complex medical treatment needs. When she first called me last week I didn't return her call because I figured it was an insurance company employee whose goal was to somehow reduce my benefits.
I figured it would work something like a car insurance adjuster. If you get in an accident they interview you, look at your vehicle and then try to find any loophole that eliminates their need to actually pay you.
My paranoia turned out to be for naught. She was a very nice lady who took my medical history and made sure that my medical needs were being met with my current treatment. She had done a fair amount of research on my condition and even brought some websites to my attention that I hadn't yet found.
She says she'll be calling me about once a week to check in and make sure everything is okay. I must say, I'm a little surprised by this serendipitous benefit from my insurance company.
On a separate note, I've had two good days in a row with fatigue and back pain being the only real issues. It feels as if I've worked a full day digging ditches almost every day now. Advil helps when I can take it. I'm worried about it's effect on my liver if I take too much though (like a normal dose).
I tried 15 minutes of yoga yesterday and it kicked my butt. I can't believe some of the positions they consider "beginner". In one, I'm supposed to put my head on my shin with my legs stretched out straight. I can barely get my hands there.
I figured it would work something like a car insurance adjuster. If you get in an accident they interview you, look at your vehicle and then try to find any loophole that eliminates their need to actually pay you.
My paranoia turned out to be for naught. She was a very nice lady who took my medical history and made sure that my medical needs were being met with my current treatment. She had done a fair amount of research on my condition and even brought some websites to my attention that I hadn't yet found.
She says she'll be calling me about once a week to check in and make sure everything is okay. I must say, I'm a little surprised by this serendipitous benefit from my insurance company.
On a separate note, I've had two good days in a row with fatigue and back pain being the only real issues. It feels as if I've worked a full day digging ditches almost every day now. Advil helps when I can take it. I'm worried about it's effect on my liver if I take too much though (like a normal dose).
I tried 15 minutes of yoga yesterday and it kicked my butt. I can't believe some of the positions they consider "beginner". In one, I'm supposed to put my head on my shin with my legs stretched out straight. I can barely get my hands there.
Saturday, August 23, 2008
3rd Time Is A Charm
We've scheduled a "3rd opinion" with Dr. Druker at the Oregon Health & Science University Cancer Institute for Thursday October 30, 2008. The first available appointment was October 23rd, but that's my birthday and I refuse to be in a cancer center on my birthday. Apparently he's one of the leading authorities on CML and Gleevec in the United States. Our main goal for the visit is to get some concrete information on conception while I'm on the Gleevec. It'll be nice to get another opinion on the course of my treatment as well.
I've invited my parents to accompany us on this trip. Hopefully it'll be a positive way to get them involved.
The catalyst for this visit was an email from Jon Gershon, a CML patient from Rhode Island. Even living all the way across the country, Jon uses Dr. Druker as his primary oncologist. He highly recommended a visit based on his experiences.
One of the positive things I found after being diagnosed with cancer was all the support from people who are also going through it, or have already gone through it and come out the other side for better or worse. Both cancer patients and the loved ones of cancer patients seem to have no shortage of love, support and advice to offer.
When I started riding motorcycles I found that most riders feel like they are all part of the same club. Everyone waves to passing riders, we all watch for police for each other (if you've ever seen a rider patting the top of his helmet, he's indicating to other riders to watch for police) and everyone seems to look out for everyone else in general. It's a fun club to belong to.
Cancer is kind of like that. All the members of the club try to provide support and advice to other members. There are get-togethers, special priveleges and we even have our own colors. The difference is being in the cancer club sucks and you'll do anything to get out of it.
I've invited my parents to accompany us on this trip. Hopefully it'll be a positive way to get them involved.
The catalyst for this visit was an email from Jon Gershon, a CML patient from Rhode Island. Even living all the way across the country, Jon uses Dr. Druker as his primary oncologist. He highly recommended a visit based on his experiences.
One of the positive things I found after being diagnosed with cancer was all the support from people who are also going through it, or have already gone through it and come out the other side for better or worse. Both cancer patients and the loved ones of cancer patients seem to have no shortage of love, support and advice to offer.
When I started riding motorcycles I found that most riders feel like they are all part of the same club. Everyone waves to passing riders, we all watch for police for each other (if you've ever seen a rider patting the top of his helmet, he's indicating to other riders to watch for police) and everyone seems to look out for everyone else in general. It's a fun club to belong to.
Cancer is kind of like that. All the members of the club try to provide support and advice to other members. There are get-togethers, special priveleges and we even have our own colors. The difference is being in the cancer club sucks and you'll do anything to get out of it.
Wednesday, August 20, 2008
Continuing Ugh
It's been 6 days now since I've been off the couch. The vertigo, dizziness and nausea have made it such that I don't last long sitting upright let alone standing. I don't feel safe driving either, changes in direction cause me to experience vertigo and get a bit disoriented.
I went to the doctor Monday because it felt like my kidneys were going to explode. I didn't sleep at all Sunday night because the pain was so bad. I watched the sun come up and called Stanford as soon as they opened at 8am. They suggested I see my GP, so I got an appointment with him at 11:30am. Wendy left work to drive me up where the doctor drew blood and some other fluid as well as poking and prodding me. All the labs came back normal. At least that meant I could take Advil to tide me over. My only guess is that it is a pretty severe muscle cramp. It's not as bad today but still annoying.
I'm getting sick and tired of feeling sick and tired. I feel useless. I haven't worked, haven't shopped, haven't walked the dog, haven't even really been out of the house. It takes most of my energy and willpower just to get out of bed in the morning. I've been reading other CML survivor experiences and it seems that Gleevec wreaks havoc on you for about 6 months before things even out and you start to feel normal again.
Since Wendy is no longer pregnant, we'd planned on hiking, camping and boating a lot this summer. That hasn't exactly worked out. We've been out once on the boat since July 4th and I can barely make it around the block right now let alone do a hike.
On a much more positive note, Wendy and I have received several cards in the mail that have made our day. One of them told jokes and one of them sang to us. It's so nice to know that people are thinking about us. In addition, my mother-in-law sent us two yoga mats and a yoga DVD from Gaiam. I can't wait to feel good enough to try and fold myself into a pretzel.
The father of one of my best friends from high school happened to be passing through town this morning and I drug myself out of bed "early" (9am) to have breakfast with him and his wife. It was great catching up, I haven't spoken with him or my friend in over 8 years. He had several pictures of his son's wife and new child. They looked very happy in the pictures. I couldn't help but be a little jealous.
I went to the doctor Monday because it felt like my kidneys were going to explode. I didn't sleep at all Sunday night because the pain was so bad. I watched the sun come up and called Stanford as soon as they opened at 8am. They suggested I see my GP, so I got an appointment with him at 11:30am. Wendy left work to drive me up where the doctor drew blood and some other fluid as well as poking and prodding me. All the labs came back normal. At least that meant I could take Advil to tide me over. My only guess is that it is a pretty severe muscle cramp. It's not as bad today but still annoying.
I'm getting sick and tired of feeling sick and tired. I feel useless. I haven't worked, haven't shopped, haven't walked the dog, haven't even really been out of the house. It takes most of my energy and willpower just to get out of bed in the morning. I've been reading other CML survivor experiences and it seems that Gleevec wreaks havoc on you for about 6 months before things even out and you start to feel normal again.
Since Wendy is no longer pregnant, we'd planned on hiking, camping and boating a lot this summer. That hasn't exactly worked out. We've been out once on the boat since July 4th and I can barely make it around the block right now let alone do a hike.
On a much more positive note, Wendy and I have received several cards in the mail that have made our day. One of them told jokes and one of them sang to us. It's so nice to know that people are thinking about us. In addition, my mother-in-law sent us two yoga mats and a yoga DVD from Gaiam. I can't wait to feel good enough to try and fold myself into a pretzel.
The father of one of my best friends from high school happened to be passing through town this morning and I drug myself out of bed "early" (9am) to have breakfast with him and his wife. It was great catching up, I haven't spoken with him or my friend in over 8 years. He had several pictures of his son's wife and new child. They looked very happy in the pictures. I couldn't help but be a little jealous.
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