As I have mentioned before, I have a wonderful son named Wyatt. He is one bundle of energy and has led me to firmly believe that 4 year olds are made completely out of rubber. His normal state of being is bouncing off the walls. His mind is constantly bouncing around as well, from one topic to the next. He is just a little sponge absorbing everything. At 4, kids are also defining in their mind ideas about boys and girls and what are the differences. Still, I was a little unprepared for his question. "Mommy, why do girls have ports and boys don't?"
Oh my, how very interesting. I suppose I should mention right now that my son doesn't know that I have cancer. I don't believe that he knows what cancer is, and definitely not the impact that it has on a person's life. I would have much rather my son ask me something else, like why don't I have a penis. But we have already covered that one around age 2, thanks to dad the Nurse Practioner. The question floored me because I never thought about how cancer would affect my son's understanding of the world. I have thought about how it would affect him if I died, or if I was lying in bed sick all the time. But I never thought that he would equate parts of cancer as part of my identity as a woman. I can see it in his head. Girls wear skirts, girls wear nail polish and girls have ports. Ugh!
He wasn't quite old enough to understand what was going on when my head was bald. And he often likes to look at pictures of me like that because he thinks it is funny. He has never asked why I was bald before. A couple of his friends have super short shaved hair, so I think he thinks that it is normal. My son does know that I go to the doctor an awful lot. He thinks that it is terrible that they never give me any stickers. Do I choose this moment, while I am blow drying my hair to tell him that I am sick. Really sick. Things are fine for now, but we don't know what will happen in the future?
I paused for a moment, looking into his sweet little face turned up to me waiting patiently for me to answer. I put on my self-assured smile, and tell him that this is a special port and not everyone has one. It just makes it easier when I go to the doctor to get me shot. ( I think that explaining an IV is a bit much at this point). I also point out that anyone could get a port, boys or girls, but you have to need it. I pause. Testing this much with him to see what his response will be.
"Mommy, can I get another Bakugan?" Bounce - and the rubber ball mind is off to another subject.
Thursday, February 24, 2011
Friday, February 11, 2011
A Retraction - of Sorts
While I was rather infuriated with my former employer due to my health insurance being terminated, I do feel the need to retract. At least a bit.
To be fair, my former employer did fix the issue. As well as fixing the issues earlier in the year when my insurance was cancelled 2 different times. The 'fixing' was never quite complete, as I always had to make calls to each type of benefit that I was receiving. But at least they turned me back on the system.
And just to recap. In March 2010, when I went on long term disability, my company accidentally coded me as terminated. That took me until May to get figured out. But it did. Then CIGNA, the third party that handles my employers long term disability claims, decided in October that I didn't qualify for benefits. Not sure how metastatic cancer doesn't qualify, but oh well. Still working on this. But because of this ruling my employer terminated my benefits. They reinstated them, while I am in my Appeal. And then this most recent time - Blue Cross and Blue Shield had a glitch in their system, that cancelled my insurance for the month of December.
So my retraction is that my former company was not directly responsible each time. And they did help me out to get me reinstated each time.
To be fair, my former employer did fix the issue. As well as fixing the issues earlier in the year when my insurance was cancelled 2 different times. The 'fixing' was never quite complete, as I always had to make calls to each type of benefit that I was receiving. But at least they turned me back on the system.
And just to recap. In March 2010, when I went on long term disability, my company accidentally coded me as terminated. That took me until May to get figured out. But it did. Then CIGNA, the third party that handles my employers long term disability claims, decided in October that I didn't qualify for benefits. Not sure how metastatic cancer doesn't qualify, but oh well. Still working on this. But because of this ruling my employer terminated my benefits. They reinstated them, while I am in my Appeal. And then this most recent time - Blue Cross and Blue Shield had a glitch in their system, that cancelled my insurance for the month of December.
So my retraction is that my former company was not directly responsible each time. And they did help me out to get me reinstated each time.
Thursday, February 10, 2011
Great relief for Red Hand Syndrome
Red Hand Syndrome? Yeah, it is crazy dry skin and red hands and feet brought about from chemo. Hands and feet have lots of little capillaries and apparently the chemo drugs can accumulate in these areas. One drug in particular, Xeloda, creates some really red hands and feet. My doctor said that her cancer patients could always spot another Xeloda patient because of their hands.
Treatment using Xeloda has matured a bit. People no longer suffer horribly from this. They have found that lower doses of Xeloda are just as effective as high doses. You have to juggle around with treatment regimens until it is 'Just right". And that means, you start off with a high dose based on your height and weight. Then gradually decrease until the side effects are more tolerable.
When I first started Xeloda my hands and feet looked sunburned. And then I got a sunburn on the rest of my body so it all blended together. Ha, ha. But then as time went on, my hands and feet hurt less until it was something I could live with.
One item that has made it much easier to deal with is Petro-Carbo by JR Watkins. This stuff is unbelievable. And I have tried just about everything. One of the nurses finally gave this to me when I was complaining about just how cracked my hands and feet were. I'm not one to endorse products or anything, I see this more as a public service announcement. As we are in the middle of winter right now, my hands can seriously not take one more handwashing. But the Petro-Carbo Salve helps so much. I normally put it on and then put either socks over my hands, or a pair of gloves. I put it on thick. By putting it on thick, it feels a bit gross on your hands.
I also put this on my feet. I have never had cracked or dry heels, but thanks to Xeloda I do now. This stuff does wonders on them as well. My mother bought me some cute little socks that were gel inside. You were suppose to put lotion on and then put the socks on over top. I use these socks with the Petro-Carbo, and go to sleep. It keeps my feet from drying out.
I do have to warn you, this stuff does have a distinct odor. It isn't horrible. It just sort of smells rustic. Like something your grandparents would use. According to the package it has been around since 1868, so, I suppose that is about right.
If you try this out, let me know what you think!
Treatment using Xeloda has matured a bit. People no longer suffer horribly from this. They have found that lower doses of Xeloda are just as effective as high doses. You have to juggle around with treatment regimens until it is 'Just right". And that means, you start off with a high dose based on your height and weight. Then gradually decrease until the side effects are more tolerable.
When I first started Xeloda my hands and feet looked sunburned. And then I got a sunburn on the rest of my body so it all blended together. Ha, ha. But then as time went on, my hands and feet hurt less until it was something I could live with.
One item that has made it much easier to deal with is Petro-Carbo by JR Watkins. This stuff is unbelievable. And I have tried just about everything. One of the nurses finally gave this to me when I was complaining about just how cracked my hands and feet were. I'm not one to endorse products or anything, I see this more as a public service announcement. As we are in the middle of winter right now, my hands can seriously not take one more handwashing. But the Petro-Carbo Salve helps so much. I normally put it on and then put either socks over my hands, or a pair of gloves. I put it on thick. By putting it on thick, it feels a bit gross on your hands.
I also put this on my feet. I have never had cracked or dry heels, but thanks to Xeloda I do now. This stuff does wonders on them as well. My mother bought me some cute little socks that were gel inside. You were suppose to put lotion on and then put the socks on over top. I use these socks with the Petro-Carbo, and go to sleep. It keeps my feet from drying out.
I do have to warn you, this stuff does have a distinct odor. It isn't horrible. It just sort of smells rustic. Like something your grandparents would use. According to the package it has been around since 1868, so, I suppose that is about right.
If you try this out, let me know what you think!
Tuesday, February 8, 2011
If we are what we eat, what about pesticides?
Organic is now a wonderful household name. Albeit, sometimes an expensive one. Ever since I have been diagnosed with cancer a second time, I have been incredibly careful about what I eat. I will even occasionally have a week that is gluten, dairy and sugar free. Really, there is a TON of food out there that doesn't have this stuff in it, and takes good. How do you think the human race has survived all this time?
Needless to say, when I have one of these weeks, I am eating a LOT more veggies than I normally do. Even on a normal week, I do pretty well at eating my daily recommended dose of fruits and veggies. However, the pesticides in a lot of these foods are terrible for you. If they are bad for the bugs - just guessing that they are bad for us too. Doesn't take a rocket scientist or biologist to figure that one out. Not only do these foods have the pesticides on the outside, but some water laden fruits like grapes, draw them into the fruit itself. So no matter how much you wash - you will be ingesting pesticides.
I'm all about trying to be healthy, and I don't think that my body needs any more nasty stuff inside of it. Chemo is enough. I have 2 great links for you. Both cover which foods are a MUST to purchase organically. And another list, that isn't quite as critical. As I mentioned before, organic tends to be a bit more expensive. You may have heard of the Clean 15 & the Dirty Dozen. Well here are some links to help you out. The first link is to a pdf of a wallet sized card and IPhone App (sorry Android) of the Clean 15 & Dirty Dozen. The other link is a longer list of fruits and vegetables and where they fit in "buy organic" list.
Enjoy!
Wallet List
http://www.foodnews.org/walletguide.php
Long list
http://www.grinningplanet.com/2006/update-2005-05-24/pesticides-in-food.htm
Needless to say, when I have one of these weeks, I am eating a LOT more veggies than I normally do. Even on a normal week, I do pretty well at eating my daily recommended dose of fruits and veggies. However, the pesticides in a lot of these foods are terrible for you. If they are bad for the bugs - just guessing that they are bad for us too. Doesn't take a rocket scientist or biologist to figure that one out. Not only do these foods have the pesticides on the outside, but some water laden fruits like grapes, draw them into the fruit itself. So no matter how much you wash - you will be ingesting pesticides.
I'm all about trying to be healthy, and I don't think that my body needs any more nasty stuff inside of it. Chemo is enough. I have 2 great links for you. Both cover which foods are a MUST to purchase organically. And another list, that isn't quite as critical. As I mentioned before, organic tends to be a bit more expensive. You may have heard of the Clean 15 & the Dirty Dozen. Well here are some links to help you out. The first link is to a pdf of a wallet sized card and IPhone App (sorry Android) of the Clean 15 & Dirty Dozen. The other link is a longer list of fruits and vegetables and where they fit in "buy organic" list.
Enjoy!
Wallet List
http://www.foodnews.org/walletguide.php
Long list
http://www.grinningplanet.com/2006/update-2005-05-24/pesticides-in-food.htm
Monday, February 7, 2011
Disability Blahs
Oh my. This is going to be a bit of venting. I really can't believe that my former employer has screwed things up this badly. My insurance has been cancelled sometime in December. I thought that it was just because of the new year. Changing to 2011, maybe they didn't carry things over. Amusingly enough, I did get new insurance cards. Think I better change my stock options. If they can't get insurance coverage right, the rest is sure to head downhill as well.
It is just lovely that my former employer has terminated my insurance once again without telling me. Really wonderful considering that each treatment that I do is $15,000. And that's every 3 weeks. Maybe there is a reason that I am consistently "accidentally" terminated. Maybe they really do just want to get rid of me. I am an expensive liability. I wonder if there is anything in Obama's bill about that? Not sure I can read that huge tome of health insurance policy, but it would appear that it would be in my benefit.
It's awful to have your insurance pulled out from underneath you. It just makes me want to scream! No wonder people go postal. Benefits are those things that you assume will be there. I did my work while I was at the company. I didn't think that I would use these benefits. Apparently my employer didn't think anyone would either. Otherwise it wouldn't be such a cluster, and my new full time job would not be to monitor them.
Aaaaargh!!!!!
It is just lovely that my former employer has terminated my insurance once again without telling me. Really wonderful considering that each treatment that I do is $15,000. And that's every 3 weeks. Maybe there is a reason that I am consistently "accidentally" terminated. Maybe they really do just want to get rid of me. I am an expensive liability. I wonder if there is anything in Obama's bill about that? Not sure I can read that huge tome of health insurance policy, but it would appear that it would be in my benefit.
It's awful to have your insurance pulled out from underneath you. It just makes me want to scream! No wonder people go postal. Benefits are those things that you assume will be there. I did my work while I was at the company. I didn't think that I would use these benefits. Apparently my employer didn't think anyone would either. Otherwise it wouldn't be such a cluster, and my new full time job would not be to monitor them.
Aaaaargh!!!!!
Friday, February 4, 2011
The fear of pain.
I think that one of the most stressful aspects of living with metastatic cancer is the fear of a return of the cancer. I even hesitate to say "return", because technically it has never left my body. There just aren't enough cancer cells in one part of my body to show up on a CT Scan.
In between CT Scans, I worry and "scan" my body continuously. I pay attention to every single little pain and creak. Lately there have been many pains - most likely due to a car accident from 2008, rather than cancer. But the fear is still there.
Fear is a crazy beast. It is crippling. It can bring you to your knees with worry. Setting off scenarios that run through your brain, detailing little episodes of "what if?". What if this little pain is the cancer? What if this little cough is the cancer? What if this headache is the cancer? I would LOVE to not put any energy towards these thoughts. It doesn't help anything. But it is just hard to turn your brain off.
So right now I have a small pain on my left side. It is probably from trying to wrestle my 4 year old into a cart at Meijer. Note to self - the little guy is getting to big to push around in a grocery cart. But the pain is there, making me worried. As I bend over and pull the dishes out of the dishwasher I feel the pain. It clouds my thoughts as I bathe my son, bending over the tub to wash his hair. It is a fear that grips. A fear that I want to live without.
In between CT Scans, I worry and "scan" my body continuously. I pay attention to every single little pain and creak. Lately there have been many pains - most likely due to a car accident from 2008, rather than cancer. But the fear is still there.
Fear is a crazy beast. It is crippling. It can bring you to your knees with worry. Setting off scenarios that run through your brain, detailing little episodes of "what if?". What if this little pain is the cancer? What if this little cough is the cancer? What if this headache is the cancer? I would LOVE to not put any energy towards these thoughts. It doesn't help anything. But it is just hard to turn your brain off.
So right now I have a small pain on my left side. It is probably from trying to wrestle my 4 year old into a cart at Meijer. Note to self - the little guy is getting to big to push around in a grocery cart. But the pain is there, making me worried. As I bend over and pull the dishes out of the dishwasher I feel the pain. It clouds my thoughts as I bathe my son, bending over the tub to wash his hair. It is a fear that grips. A fear that I want to live without.
Tuesday, February 1, 2011
Insurance - Love it, Hate it
I just have to say, having health insurance is GREAT when it all works out well. I worked really hard at my corporate job and I feel that I earned the benefits due to me. That's part of why you get work the corporate gig - for hopeful idea that you will have good benefits that take care of you if something happens.
My insurance did work out great while I was working. And even through my short term disability, FMLA and then long term disability. However, part way through my long term disability, the third party dealing with my insurance cut me off. Their reasoning was quite odd. My husband and I decided to take a little trip to King's Island with our 3 year old boy. When we got back, I mentioned this to my doctor and the fact that my feet were killing me, (part of the joys of Xeloda side effects). She noted that I had a good day and went to King's Island with my family. The third party handling my insurance, read this in my chart and decided that since I went to King's Island for a day, I must be well enough to return to work.
What?! Yeah, seriously that's what happened.
I guess they missed the part in the chart where I go to IV infusions every 3 weeks. And that I am on chemo every other week and the fact that I have metastatic cancer. And for anyone that has ever gone to King's Island with a 3 year old, knows that you have to plan your day out for some down time. And that your 'day' is not from open to close at King's Island, but more like noon to 5 or so. Honestly, I spent a ton of time lounging in the Pirate Pool in the kiddie area while my husband chased our son around. It was one of my more relaxing days.
But back to the point of insurance. As 3 people at the third party decided that I no longer required long term disability, they alerted my previous employer who promptly terminated my benefits. Awesome. Especially as this was the second time they did this in 2010. And the first time was an accident, while I was still working. I finally got all of the bills figured out from earlier in the year, and then it happens again. And this is where all the problems happen.
When your benefits are cancelled - it is NOT an easy thing to get them all turned back on. One would think that you just need to call your HR Manger, right? No, it takes several calls. First there is your health insurance. Then there are your 401K benefits. You also have the Pharmacy, as well as Disability benefits. Each one takes at least one phone call, usually more.
Then there is the fact that I pay my former company the cost to have me on their insurance. It's one of the benefits of long term disability. I send a check every month with a little coupon that they sent to me. I have been waiting for my new coupons, but they never showed up. I did eventually send in a check with my account number, but who knows. I don't think that it mattered, just got my EOB and I'm not insured. AGAIN. This is the third time.
So, insurance, it's great when it works. But it makes me a freaking wreck when it gets screwed up.
My insurance did work out great while I was working. And even through my short term disability, FMLA and then long term disability. However, part way through my long term disability, the third party dealing with my insurance cut me off. Their reasoning was quite odd. My husband and I decided to take a little trip to King's Island with our 3 year old boy. When we got back, I mentioned this to my doctor and the fact that my feet were killing me, (part of the joys of Xeloda side effects). She noted that I had a good day and went to King's Island with my family. The third party handling my insurance, read this in my chart and decided that since I went to King's Island for a day, I must be well enough to return to work.
What?! Yeah, seriously that's what happened.
I guess they missed the part in the chart where I go to IV infusions every 3 weeks. And that I am on chemo every other week and the fact that I have metastatic cancer. And for anyone that has ever gone to King's Island with a 3 year old, knows that you have to plan your day out for some down time. And that your 'day' is not from open to close at King's Island, but more like noon to 5 or so. Honestly, I spent a ton of time lounging in the Pirate Pool in the kiddie area while my husband chased our son around. It was one of my more relaxing days.
But back to the point of insurance. As 3 people at the third party decided that I no longer required long term disability, they alerted my previous employer who promptly terminated my benefits. Awesome. Especially as this was the second time they did this in 2010. And the first time was an accident, while I was still working. I finally got all of the bills figured out from earlier in the year, and then it happens again. And this is where all the problems happen.
When your benefits are cancelled - it is NOT an easy thing to get them all turned back on. One would think that you just need to call your HR Manger, right? No, it takes several calls. First there is your health insurance. Then there are your 401K benefits. You also have the Pharmacy, as well as Disability benefits. Each one takes at least one phone call, usually more.
Then there is the fact that I pay my former company the cost to have me on their insurance. It's one of the benefits of long term disability. I send a check every month with a little coupon that they sent to me. I have been waiting for my new coupons, but they never showed up. I did eventually send in a check with my account number, but who knows. I don't think that it mattered, just got my EOB and I'm not insured. AGAIN. This is the third time.
So, insurance, it's great when it works. But it makes me a freaking wreck when it gets screwed up.
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