I don't post here often because I am B-U-S-Y living the life I wanted so desperately to get back at...but I know this blog exists in perpetuity and someone may be coming across it, looking for supplies for their hope kit.
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Friday, June 10, 2011
Sunday, January 9, 2011
2 Years Out
I cannot believe it is my 2-year anniversary, with my oncologist. In preparation for this office visit, I was to have a regular blood-draw, although I could tell from the order that she was asking for more readings than usual. I was also to get a chest xray. And she had scheduled me for a second infusion of Zometa, to combat the osteopenia that I was diagnosed with last April.
Zometa was designed for bone cancer patients. It stops (kills off?) the osteoclasts in your bones, whose job is to tear down bone. That way, whatever bone-building is going on, gets to stay in place. I didn't really like the sound of that, but I appreciated the result. And due to the high cost ($1100/per infusion) out of my pocket, I was hesitant to do it again unnecessarily.
I left a message with my oncologist's office, asking if I could have a bone density scan first, since I would be paying for it, no matter what. The bone density scan cost me less than $200 and if my density had improved significantly, I wanted to skip the Zometa.
The doctor approved my plan, so I squeezed in the bone density scan the day before my office visit. It turned out that my density had improved, but not a lot. When I saw the oncologist, she said I could do whatever I wanted to do. She did not want to sway me one way or the other. I peppered her with questions...and this is what I found out.
My bone density last time was -2.2. -2.5 is the cut-off for osteoporosis. Normal is from -1 to 0. This time, I had improved to -2. Still well into the osteopenia range. She said I would not improve significantly from just calcium supplements/diet/exercise. She really wasn't sure I could ever be "normal" bone density again.
The loss of density is from my early shutdown of ovary function, due to chemotherapy, not from the tamoxifen. Since my insurance isn't deciding what I can or cannot have, I can have another bone density scan in 6 months if I want, to see if the Zometa has gained me another fraction of improvement or not. Also, there is no downside, for me, from the Zometa, other than the cost. In fact, the reason she chose Zometa for me was that it had the unexpected side effect of helping to reduce the reoccurence of breast cancer. (I think I had shared that last time.)
The other decision to be made was whether I would switch from Tamoxifen at this point to Femara. Some study had shown this to be beneficial. She said that without a doubt Femara would cause further bone density loss. So, of course, that was shelved. She didn't have any problem with me continuing with Tamoxifen.
I decided, pretty quickly, that I wasn't going to let $1000 stand between me and the chance to gain any amount of bone density. I am too young to start worrying about that. Especially since her office permits me to pay any amount on my bill, as long as I am paying. I only pay $25/week and am still paying off last April's infusion.
So I took another infusion. The nurse was so sweet, but she almost blew out my vein in my right arm--which is bad, since I can't ever use my left arm, EVER again. So she had to put it in my wrist, which wasn't that bad. 15 minutes later, I was good to go.
I don't see the doc again for 6 months. That's the prize you get after two years. :)
My chest xray was clear. My plastic surgeon waved me off for a one-year check up. Her tatoo artist told me if I was happy, she was happy. I can almost pretend it didn't happen...almost.
Zometa was designed for bone cancer patients. It stops (kills off?) the osteoclasts in your bones, whose job is to tear down bone. That way, whatever bone-building is going on, gets to stay in place. I didn't really like the sound of that, but I appreciated the result. And due to the high cost ($1100/per infusion) out of my pocket, I was hesitant to do it again unnecessarily.
I left a message with my oncologist's office, asking if I could have a bone density scan first, since I would be paying for it, no matter what. The bone density scan cost me less than $200 and if my density had improved significantly, I wanted to skip the Zometa.
The doctor approved my plan, so I squeezed in the bone density scan the day before my office visit. It turned out that my density had improved, but not a lot. When I saw the oncologist, she said I could do whatever I wanted to do. She did not want to sway me one way or the other. I peppered her with questions...and this is what I found out.
My bone density last time was -2.2. -2.5 is the cut-off for osteoporosis. Normal is from -1 to 0. This time, I had improved to -2. Still well into the osteopenia range. She said I would not improve significantly from just calcium supplements/diet/exercise. She really wasn't sure I could ever be "normal" bone density again.
The loss of density is from my early shutdown of ovary function, due to chemotherapy, not from the tamoxifen. Since my insurance isn't deciding what I can or cannot have, I can have another bone density scan in 6 months if I want, to see if the Zometa has gained me another fraction of improvement or not. Also, there is no downside, for me, from the Zometa, other than the cost. In fact, the reason she chose Zometa for me was that it had the unexpected side effect of helping to reduce the reoccurence of breast cancer. (I think I had shared that last time.)
The other decision to be made was whether I would switch from Tamoxifen at this point to Femara. Some study had shown this to be beneficial. She said that without a doubt Femara would cause further bone density loss. So, of course, that was shelved. She didn't have any problem with me continuing with Tamoxifen.
I decided, pretty quickly, that I wasn't going to let $1000 stand between me and the chance to gain any amount of bone density. I am too young to start worrying about that. Especially since her office permits me to pay any amount on my bill, as long as I am paying. I only pay $25/week and am still paying off last April's infusion.
So I took another infusion. The nurse was so sweet, but she almost blew out my vein in my right arm--which is bad, since I can't ever use my left arm, EVER again. So she had to put it in my wrist, which wasn't that bad. 15 minutes later, I was good to go.
I don't see the doc again for 6 months. That's the prize you get after two years. :)
My chest xray was clear. My plastic surgeon waved me off for a one-year check up. Her tatoo artist told me if I was happy, she was happy. I can almost pretend it didn't happen...almost.
Thursday, October 21, 2010
Happy Anniversary!
Two years ago, yesterday, I underwent my first surgery in my cancer story. I spent around 5 hours on the operating table that day, two surgical teams took turns taking me apart and putting me back together.
Praise the Lord! For their skill and knowledge and compassion.
Today, I am totally and completely well. I had about 4 or 5 more surgeries, after that, to get completely "done", but I am now finished. I feel great and am happy and content. I took an infusion of Zometa earlier this year to combat osteopenia, which is probably the result of chemo. The Zometa will help me build bone, but also has a side-effect of reducing reoccurence of bc.
My hair is my same old hair, just not long enough yet. :)
I can honestly say that cancer made me a better person. And I can honestly say that I am glad I went through it because I like the new me more. I am so thankful to all my wonderful friends who helped and fed us, and helped and helped us some more. My family, who came from far and near to do any and all things needed. My insurance company (honestly), that paid and paid and paid, without one single glitch or increase. My husband, who walked through it with me, with humor and not one hint of discomfort or fear. My girls, who kept my focus off myself-- :)--and my wonderful menagerie, who needed me to get out of bed and bring the food!
With God, all things ARE possible.
Praise the Lord! For their skill and knowledge and compassion.
Today, I am totally and completely well. I had about 4 or 5 more surgeries, after that, to get completely "done", but I am now finished. I feel great and am happy and content. I took an infusion of Zometa earlier this year to combat osteopenia, which is probably the result of chemo. The Zometa will help me build bone, but also has a side-effect of reducing reoccurence of bc.
My hair is my same old hair, just not long enough yet. :)
I can honestly say that cancer made me a better person. And I can honestly say that I am glad I went through it because I like the new me more. I am so thankful to all my wonderful friends who helped and fed us, and helped and helped us some more. My family, who came from far and near to do any and all things needed. My insurance company (honestly), that paid and paid and paid, without one single glitch or increase. My husband, who walked through it with me, with humor and not one hint of discomfort or fear. My girls, who kept my focus off myself-- :)--and my wonderful menagerie, who needed me to get out of bed and bring the food!
With God, all things ARE possible.
Thursday, May 20, 2010
Don't go getting soft on me...
At my quarterly check-up with the oncologist in January, I had asked about a bone-density test. I don't know what prompted that, I probably read something about post-chemo bone loss. Anyway, she scheduled me for one and thankfully, they called to remind me about the appt, because I didn't have it in my book. The test was quick and painless and I saw the oncologist again in April.
She said I have osteopenia in my hip and spine with a grade of -2.2 in each. The cut-off for osteoporosis is -2.5, so I guess I was getting close. She told me to take 1500 mg. of calcium a day and about 4 bushels of raisin bran to counteract the calcium, if you get my drift.
I told her that I was riding horses and could in no way be breaking any bones. I told her that my MIL had taken the IV bone builder Reclast a year ago, and her osteopenia was GONE--could I take that?
She was excited to know that I wanted to adress the issue more aggressively and told me that the drug Zometa, developed for bone cancer, has the same active ingredient as Reclast, but has shown the unexpected side effect of preventing recurrence of breast cancer. So, if I was going to do the IV thing, she would want me to do Zometa. And do it again in 6 months and then another bone scan.
So I did. A 30-minute IV drip in the infusion lab, which was pretty creepy really. I wanted to wear a big sign that said, "I'm just here for the bone builder." And then came the bill for $1200.
Yep, $1200. And I haven't met my deductible yet, so it's all on me. I did not have any of the side effects that I was warned of, not even sore joints, so PTL.
Lessons learned: Ask for bone density test, even if you have to pay for it. She wasn't even suggesting a stronger approach than calcium supplements until I brought it up.
BTW, she told me how disappointed she gets that many women, MANY women will not even do Tamoxifen because they don't want to have hot flashes! Sorry, cannot believe that. Hot flashes versus cancer...hmmm...
She said I have osteopenia in my hip and spine with a grade of -2.2 in each. The cut-off for osteoporosis is -2.5, so I guess I was getting close. She told me to take 1500 mg. of calcium a day and about 4 bushels of raisin bran to counteract the calcium, if you get my drift.
I told her that I was riding horses and could in no way be breaking any bones. I told her that my MIL had taken the IV bone builder Reclast a year ago, and her osteopenia was GONE--could I take that?
She was excited to know that I wanted to adress the issue more aggressively and told me that the drug Zometa, developed for bone cancer, has the same active ingredient as Reclast, but has shown the unexpected side effect of preventing recurrence of breast cancer. So, if I was going to do the IV thing, she would want me to do Zometa. And do it again in 6 months and then another bone scan.
So I did. A 30-minute IV drip in the infusion lab, which was pretty creepy really. I wanted to wear a big sign that said, "I'm just here for the bone builder." And then came the bill for $1200.
Yep, $1200. And I haven't met my deductible yet, so it's all on me. I did not have any of the side effects that I was warned of, not even sore joints, so PTL.
Lessons learned: Ask for bone density test, even if you have to pay for it. She wasn't even suggesting a stronger approach than calcium supplements until I brought it up.
BTW, she told me how disappointed she gets that many women, MANY women will not even do Tamoxifen because they don't want to have hot flashes! Sorry, cannot believe that. Hot flashes versus cancer...hmmm...
Wednesday, April 14, 2010
PCMLC
...stands for Post-Cancer Mid-life Crisis...and I'm having one. And it isn't for a sports car...
)
and I haven't written about it because I feel guilty for doing it, and now I can't really get out of it, quickly. Every day I struggle with what I have done and I put off doing laundry a little longer and I leave the stacks of paper on my desk and I just go again and again, to the barn...
...and write another check, for some hoof supplement or some new body sponge (for him), and it's pretty fun, except for the guilt.
I am very well. My hair is very housewifey and getting a little bushy. My eyebrows are wimpy and my big toenails are almost completely grown out. The only procedure I have left to do is tatooing (ugh--I cannot believe it). I am all back together. But, another, younger woman I know, who was diagnosed while pregnant (!!!), had chemo while preggers, delivered, had radiation and then surgery, found a brain tumor.
The day I read that on her Caring Bridge update, I started looking for a horse. I almost yelled to my husband, from the office computer, "That's it--I'm getting a horse!" I felt frightened and sickened and spurred to action--I'd better get on with whatever's on my bucket list because I just don't know how long I've got--none of us knows.
So, the horse market being what it is--I found a horse, and a terrific prospect to boot. So I drove 6 hours to see him for an hour and six hours back. And she had brain surgery. And my horse was delivered to my barn, and I paid $1 for him.
And she had weakness in one of her hands and was feeling better and went in for a follow-up, which included a body scan, I guess and they found tumors in one lung and on her pelvic bone. And she has three little children.
And my horse, is being trained by my long-time friend the professional trainer, who says he is doing great. And almost every day, after I feel really guilty about how much this costs Handyman, I brush off that silly, unnecessary horse and pet his nose and look forward to getting on him myself.
and I haven't written about it because I feel guilty for doing it, and now I can't really get out of it, quickly. Every day I struggle with what I have done and I put off doing laundry a little longer and I leave the stacks of paper on my desk and I just go again and again, to the barn...
...and write another check, for some hoof supplement or some new body sponge (for him), and it's pretty fun, except for the guilt.
I am very well. My hair is very housewifey and getting a little bushy. My eyebrows are wimpy and my big toenails are almost completely grown out. The only procedure I have left to do is tatooing (ugh--I cannot believe it). I am all back together. But, another, younger woman I know, who was diagnosed while pregnant (!!!), had chemo while preggers, delivered, had radiation and then surgery, found a brain tumor.
The day I read that on her Caring Bridge update, I started looking for a horse. I almost yelled to my husband, from the office computer, "That's it--I'm getting a horse!" I felt frightened and sickened and spurred to action--I'd better get on with whatever's on my bucket list because I just don't know how long I've got--none of us knows.
So, the horse market being what it is--I found a horse, and a terrific prospect to boot. So I drove 6 hours to see him for an hour and six hours back. And she had brain surgery. And my horse was delivered to my barn, and I paid $1 for him.
And she had weakness in one of her hands and was feeling better and went in for a follow-up, which included a body scan, I guess and they found tumors in one lung and on her pelvic bone. And she has three little children.
And my horse, is being trained by my long-time friend the professional trainer, who says he is doing great. And almost every day, after I feel really guilty about how much this costs Handyman, I brush off that silly, unnecessary horse and pet his nose and look forward to getting on him myself.
Tuesday, February 2, 2010
Exciting News!
I am going for a haircut tomorrow! I have lived through the post-chemo apocalyptic short, through the haggard housewife easy-do and have entered the shaggy dog, looks like a disaster.
It's only been about 14 months since my ponytail was lopped off! :*( So, the cutting will be kept to a minimum), but I am excited to start shaping it into a style of some sort.
My two big toenails have not grown completely out yet. They didn't start their reaction until a month or so after chemo was over. So they were a surprise. Just one more reminder that will go away eventually.
Happy Groundhog Day!
It's only been about 14 months since my ponytail was lopped off! :*( So, the cutting will be kept to a minimum), but I am excited to start shaping it into a style of some sort.
My two big toenails have not grown completely out yet. They didn't start their reaction until a month or so after chemo was over. So they were a surprise. Just one more reminder that will go away eventually.
Happy Groundhog Day!
Wednesday, November 4, 2009
The Year of A Thousand 'Do's
Just passed my 18th anniversary with the Handyman. That means in two weeks it will be the 20th anniversary of our first date...it was the Monday before Thanksgiving. He wouldn't even spring for dinner...just "a drink". Jiminy Crickets! But, I wore him down. We can spend three figures on a dinner for two nowadays--no problem. We love to eat.
But I digress...I was going to say that I actually liked my hair when we went out for our anniversary. It was pretty cute, and so completely easy. I'm pretty much in love with the easy part, if I can just avoid looking into a mirror as I go out the door.
Of course I was also wearing my all-time favorite, most flattering sweater--that is starting to wear out!!! It is a black mock-neck, 3/4 sleeves with varying width knit ribbing, wider across the chest, and narrower around the waist, so it makes you look tantalizingly trim, even if you ain't! It's some simply polyester thang that was given to me as a hand-me-down eons ago by my long-lost friend Leslie, from her sister. Don't you love those?? Won't be finding a replica of this one anytime soon. Man. (Same thing's happening to my favorite jeans. These wide leg, lightweight denim from Old Navy that I bought for $1 from my mom's next door neighbor's garage sale. Yikes. The consequences of bargain barrel shopping.)
So maybe it wasn't that I liked my hair so much as that I love my sweater and it camouflages a multitude of missing locks.
I did get a new camera for my birthday last month...just in time to take the kids to see King Tut, where NO PHOTOGRAPHY IS ALLOWED. Perfect.
I was at my friend the hairdresser's place the other day and she said I was going to need it shaped up pretty soon. But I just can't see myself letting scissors get anywhere near it, yet. It still needs to blow around a little more.
But I digress...I was going to say that I actually liked my hair when we went out for our anniversary. It was pretty cute, and so completely easy. I'm pretty much in love with the easy part, if I can just avoid looking into a mirror as I go out the door.
Of course I was also wearing my all-time favorite, most flattering sweater--that is starting to wear out!!! It is a black mock-neck, 3/4 sleeves with varying width knit ribbing, wider across the chest, and narrower around the waist, so it makes you look tantalizingly trim, even if you ain't! It's some simply polyester thang that was given to me as a hand-me-down eons ago by my long-lost friend Leslie, from her sister. Don't you love those?? Won't be finding a replica of this one anytime soon. Man. (Same thing's happening to my favorite jeans. These wide leg, lightweight denim from Old Navy that I bought for $1 from my mom's next door neighbor's garage sale. Yikes. The consequences of bargain barrel shopping.)
So maybe it wasn't that I liked my hair so much as that I love my sweater and it camouflages a multitude of missing locks.
I did get a new camera for my birthday last month...just in time to take the kids to see King Tut, where NO PHOTOGRAPHY IS ALLOWED. Perfect.
I was at my friend the hairdresser's place the other day and she said I was going to need it shaped up pretty soon. But I just can't see myself letting scissors get anywhere near it, yet. It still needs to blow around a little more.
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