I quote my sister-in-law here. I saw my doctor today and everything is either status quo or better. May it stay that way.
My blood counts are good: 6.5 wbc; 11.3 hct; 117 platelets. My iron level is stuck at about 2000, down from 8000 but it needs to get closer to 300. My cholesterol is still up there, as are my liver numbers, so I'm temporarily stopping the Lipitor. The blood pressure drug is doing its job--I now have normal to low bp.
But it goes up when I have to deal with things like this. One of my very special eye drops prescriptions which are supposed to last 30 days and cost $128 has run out after just 4 days. If you have money to invest, buy these drops instead of gold, because you will make a fortune.
I saved the best news for last. I'm decreasing the prednisone by 5 mg per day.
Monday, March 28, 2011
Thursday, March 24, 2011
You Rock, Liz!
It may be presumptuous to compare myself to the late Elizabeth Taylor, but I will anyway. She crammed a lot into her 79 years. We can all learn from her joie de vivre.
Taylor had her share of bad karma, like we all do. You can argue that hers was on a grander scale, and her charity work is something we can all aspire to. You have to admire this woman. I do.
I've been stuffing as much as I can into my less-glamorous life over the last five years. I've sent my three chrildren off to college. My husband and I weathered his 9-month long unempl0yment. We purchased a farmhouse in Sullivan County. We moved to an apartment in Manhattan and are looking to find a 2-bedroom for May 1. We finally have an offer on our Rhode Island house. I don't plan to go out and buy a sparkling rock for my finger; I look forward to wearing my wedding ring when my fat finger slims up.
Notice I haven't used the word leukemia. I saw a new ophthalmologist today who put me on a new regimen of drops. He also plugged my tear ducts with extra-large plugs. It's the the only part of me (beside my ego) that's not petite.
Five years ago today, I was diagnosed with leukemia. I may be badly bruised, but I'm not beaten.
Taylor had her share of bad karma, like we all do. You can argue that hers was on a grander scale, and her charity work is something we can all aspire to. You have to admire this woman. I do.
I've been stuffing as much as I can into my less-glamorous life over the last five years. I've sent my three chrildren off to college. My husband and I weathered his 9-month long unempl0yment. We purchased a farmhouse in Sullivan County. We moved to an apartment in Manhattan and are looking to find a 2-bedroom for May 1. We finally have an offer on our Rhode Island house. I don't plan to go out and buy a sparkling rock for my finger; I look forward to wearing my wedding ring when my fat finger slims up.
Notice I haven't used the word leukemia. I saw a new ophthalmologist today who put me on a new regimen of drops. He also plugged my tear ducts with extra-large plugs. It's the the only part of me (beside my ego) that's not petite.
Five years ago today, I was diagnosed with leukemia. I may be badly bruised, but I'm not beaten.
Saturday, March 19, 2011
Their Stories
I finally was able to go to a photopheresis session yesterday. My new insurance kicked in. I caught 40 winks and did a little reading.
Two patients who occupied the chair next to mine, although not at the same time, demonstrated once again how we who are fighting blood cancer are never alone.
The first patient was a young man, 27, who was donating his stem cells not to a particular person, but just to donate. Hurray for him! He was there to get his first neupogen shot and his schedule for donating. I thanked him for what he was doing, telling him I had received stem cells from an anonymous donor.
The second patient was a middle-aged Hispanic woman who came with her daughter. She was visibly nervous, and I don't blame her. She was getting a neupogen shot to stimulate cells for an autogolous transplant. She has multiple myeloma. She was very nervous about having a catheter installed. I showed her mine and said although it was ugly, it would help save her life.
I walked out into the bright 70-degree sunshine wearing my ultra shades. Ah life.
Two patients who occupied the chair next to mine, although not at the same time, demonstrated once again how we who are fighting blood cancer are never alone.
The first patient was a young man, 27, who was donating his stem cells not to a particular person, but just to donate. Hurray for him! He was there to get his first neupogen shot and his schedule for donating. I thanked him for what he was doing, telling him I had received stem cells from an anonymous donor.
The second patient was a middle-aged Hispanic woman who came with her daughter. She was visibly nervous, and I don't blame her. She was getting a neupogen shot to stimulate cells for an autogolous transplant. She has multiple myeloma. She was very nervous about having a catheter installed. I showed her mine and said although it was ugly, it would help save her life.
I walked out into the bright 70-degree sunshine wearing my ultra shades. Ah life.
Tuesday, March 15, 2011
Hi Leah
Here we are back at the Ides of March. Today is Leah Ryan's birthday. Leah and I were cyberspace buddies who never had a chance to meet in the real world. She died of leukemia in June 2008, after a transplant that didn't work.
Leah was a writer and a damned good one. She wrote book reviews, plays and television screenplays. She had an imposing sense of humor and used her words to bring down the high and the mighty. She loved her cats and her life as a writer. There was so much left to write.
If Leah's moms Arlene and Martha are reading this, my thoughts are with you today. Leah was a rare one.
Leah was a writer and a damned good one. She wrote book reviews, plays and television screenplays. She had an imposing sense of humor and used her words to bring down the high and the mighty. She loved her cats and her life as a writer. There was so much left to write.
If Leah's moms Arlene and Martha are reading this, my thoughts are with you today. Leah was a rare one.
Saturday, March 12, 2011
Beating a Dead Horse
A Chilean friend of mine once said that they had no equivalent expression for beating a dead horse because Latinos don't believe it's possible to say too much on one topic. I have to agree.
I'm talking about my insanely dry eyes. I know you think it's a dead horse, but it's not. There's still plenty of life in my baby blues, just no water. Fortunately, when I open my eyes I can see. The problem is, I can't open them too often, which severely cramps my style. By 9 pm, they're toast and I have to go to bed. If we're having dinner at someone's house, like we are tonight, I have to recline on the couch with my eyes closed. Sometimes I drift off in mid-sentence, and I've been told I snore.
Not wanting to take this lying down, I've made inquiries. It looks like I have two options: use blood serum or get scleral prosthetic lenses. Blood serum sounds icky but it is said to work. A bit of my own blood would be used to make eye drops that would use my lymphocytes to counteract my donor's. I keep thinking they'd be red and I'd look like a vampire, but of course the red cells are removed.
I plan to discuss this with my doctor the next time I see her. She's been in Hawaii for three weeks.
I'm talking about my insanely dry eyes. I know you think it's a dead horse, but it's not. There's still plenty of life in my baby blues, just no water. Fortunately, when I open my eyes I can see. The problem is, I can't open them too often, which severely cramps my style. By 9 pm, they're toast and I have to go to bed. If we're having dinner at someone's house, like we are tonight, I have to recline on the couch with my eyes closed. Sometimes I drift off in mid-sentence, and I've been told I snore.
Not wanting to take this lying down, I've made inquiries. It looks like I have two options: use blood serum or get scleral prosthetic lenses. Blood serum sounds icky but it is said to work. A bit of my own blood would be used to make eye drops that would use my lymphocytes to counteract my donor's. I keep thinking they'd be red and I'd look like a vampire, but of course the red cells are removed.
I plan to discuss this with my doctor the next time I see her. She's been in Hawaii for three weeks.
Tuesday, March 8, 2011
Insurance, Numbers and Gyro II
Yesterday, I arrived at the hospital early. It was going to be a long day. I had bloodwork scheduled, an appointment with my oncologist and then my photopheresis treatment. I'd come prepared with lunch, books and my cell phone.
I was only able to do my labs and see the doctor. Marty started a new job yesterday, and the company is changing insurance companies. I'm covered, but there's no account number yet. This meant I had to cancel my photopheresis treament. My numbers were all good: wbc: 7; hgb, 11.3; platelets: 113.
One of the hospital administrators said she's look into having me pay for the treament with a credit card and then be reimbursed. It turns out, each treatment costs $10,000, so that wasn't an option. A woman who was sitting next to me excused herself for overhearing the conversation and adding her two cents. "Honey, they have to give it to you for free." She was elegantly dressed, with bright red lipstick and perfectly coiffed hair. I'd say she was around 75. She started complaining about how tired she was, and that you have to have so much patience for this. I said that I'd learned to be patient during my illness. I decided to leave rather than talk to her some more.
Because I got home so early, Harry and I did a little shopping for clothes and a new cell phone. Today we plan to go up to Macys, not that we want to buy anything, but we want to go to Gyro II for the best gyro in the world.
I was only able to do my labs and see the doctor. Marty started a new job yesterday, and the company is changing insurance companies. I'm covered, but there's no account number yet. This meant I had to cancel my photopheresis treament. My numbers were all good: wbc: 7; hgb, 11.3; platelets: 113.
One of the hospital administrators said she's look into having me pay for the treament with a credit card and then be reimbursed. It turns out, each treatment costs $10,000, so that wasn't an option. A woman who was sitting next to me excused herself for overhearing the conversation and adding her two cents. "Honey, they have to give it to you for free." She was elegantly dressed, with bright red lipstick and perfectly coiffed hair. I'd say she was around 75. She started complaining about how tired she was, and that you have to have so much patience for this. I said that I'd learned to be patient during my illness. I decided to leave rather than talk to her some more.
Because I got home so early, Harry and I did a little shopping for clothes and a new cell phone. Today we plan to go up to Macys, not that we want to buy anything, but we want to go to Gyro II for the best gyro in the world.
Wednesday, March 2, 2011
The Jackpot
When I logged into my checking account today, I couldn't figure out why I had more money than I thought. I scrolled down to see Social Security Disability. My application had been approved! My friend Jeff had suggested I might qualify, and that I should apply before December 31, 2010 so I'd be eligible for all of 2010. I guess my case was slam-dunk because it was approved within two months after I'd completed my application. My doctors promptly reported back to Social Security, like I'd suppose they would.
When I think of all the rough times we've had over the past five years, it seems like the tide is finally turning in our favor. Marty was out of work for 9 months. He just left a job for a better one. My medical bills have been high, and I've only been able to work for 21 months since my diagnosis. We maxed out our credit cards and borrowed money from family and friends. We couldn't sell our house in Rhode Island, which costs us over $3000 monthly to pay for the mortgage, utilities and insurance. Naturally, none of the money woes compare to the fight against leukemia.
I'm going to use my disability payments to pay down debt. Maybe Marty and I will go out to a really nice restaurant to celebrate. We have so much to celebrate.
When I think of all the rough times we've had over the past five years, it seems like the tide is finally turning in our favor. Marty was out of work for 9 months. He just left a job for a better one. My medical bills have been high, and I've only been able to work for 21 months since my diagnosis. We maxed out our credit cards and borrowed money from family and friends. We couldn't sell our house in Rhode Island, which costs us over $3000 monthly to pay for the mortgage, utilities and insurance. Naturally, none of the money woes compare to the fight against leukemia.
I'm going to use my disability payments to pay down debt. Maybe Marty and I will go out to a really nice restaurant to celebrate. We have so much to celebrate.
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