I think the general public might agree that the last thing anyone needs to have to do when caring for a loved one with cancer (or any life altering situation) is to have to have their insurance company on speed dial to argue with each day about some claim or another.
I just got off of what seemed to be an absolutely endless phone call with our insurance company. I say, "if our deductible has been met and our maximum out of pocket is $3,000... why am I holding an already processed bill for $4,600?" ... He says, "You should call the hospital" the hospital says to call the insurance, the insurance says it's the hospital's fault because they must not be billing correctly, etc. Then he tells me that they (the insurance company) don't keep track of the bills and amount owed. I respond with, "then how would you know when to start covering at 100%?" Is this really happening? How can this be an actual dialogue of any sort of productivity? It took absolutely my entire being to remain calm, civil, and collected.
The man kept telling me that he needed specific claim numbers/dates of service... I said, "I have three months worth, do you have all day?" He told me I should double check them as they don't keep track and I responded, "So you want me to go through myself, add up everything I've been charged until I hit the deductible and total out of pocket and then call you with the other fifty pages worth to discuss why it's not covered?" In retrospect, that must have been the point where I lost my cool.
In the end, I decided I would go with his suggestion and pulled out the explanations of benefits and when I gave him specific dates and whatnot, his response was "these are all in reprocessing, ma'am." Are you kidding me?????? Maybe it's just me, but if they did right by the customer and processed everything correctly the first time... they could save a lot of people a lot of unnecessary stress. In the last minute of our conversation the human emerged and he told me he understands what I'm going through, as his mother also battled cancer and that if I need anything I shouldn't hesitate to call them for another song and dance. Fantastic.
On a slight side note, within these "reprocessing" claims is one for a drug called Rituxan which costs just over $14,000 each time and Tom has has now had six of these! We were not informed until he was going in for his fourth one, that our insurance had only just (a month and a half later) got around to denying coverage for the first dose he received of the drug. Which meant we'd already incurred $56,000 worth of "patient responsibility". Our oncologist had done some extra screening drugs to make certain that Tom was a patient who would benefit from the use of this drug before giving it to him as he said this often occurs with patients receiving this drug.
Crossing our fingers that the "reprocessing" and the appeal letter sent in from our oncologist's office does the trick and gets them to cover it... otherwise, future bankruptcy here we come!!!!
Fairly certain I will have gray hair by the end of all of this.
Thursday, October 18, 2012
Wednesday, October 17, 2012
Normality at Barnes & Noble
Last night, for the first time in nearly three months, I made a venture out to somewhere where I knew no one and was there for no particular purpose and had no rush to get back. I chose to go to Barnes & Noble. Granted, while I was there I was looking for a recommended Cancer Cookbook, but for the most part I was just there with nothing particularly on my mind and no one to have to talk to about my husband's condition.
I got a coffee and I even went as far as to have a most enjoyable piece of pumpkin cheesecake while I sat in the bookstore cafe. It felt so good, so incredibly liberating to do something that I used to watch so many people do as a barista, I was just there shopping around, entertaining the idea of reading various books... sort of pretending to be something I'm not, but it was amazing.
I've always fancied myself a reader. I've also thought it'd be nice to be wonderful domesticated housewife who has wonderfully planned out delicious meals, a ridiculously clean house, and a cute apron to wear while baking my latest creation. None of the above really suit me.
To be honest, there are few books I've read front to back, I've joined online "book clubs" and bought books that I never read, I have taken many trips to various bookstores and peruse the shelves as if with purpose and usually again, buy something I won't read or don't buy anything at all. I absolutely love the romantic idea of cozying up on a couch with a cup of cocoa and a good novel, but when given the chance... I'd rather have a nap.
As far as being some sort of domestic goddess, I get upset when I clean so much and really have nothing to show for it when it gets dirty so quickly; If I put the dishes away more than three consecutive times I feel a sense of abandonment and lack of support. I love throwing clothes into the laundry, but I absolutely hate folding them and my number one blood boiler being that my efforts go unnoticed when my hard labors stay in the basket they're delivered in and just get rummaged/unfolded instead of put away. I love to cook, however with my husband's constant change of taste and whatnot, I seem to find that he asks me what's for dinner and then 99% of the time follows with what he'd rather have for dinner... and yet, when asked what he'd like three hours prior, his answer is always that he's "not fussed".
All of that to say, that I certainly do not fit the bill for the things I would like to envision in myself. Now, if I were to sort of capture what I am as opposed to what I'd like to be... I think it would end up being something of a mess: An anal retentive, tightly wound, emotional basket case of an overly organized and obsessive compulsive nutter. No one wants that do they? But last night, last night I was given the opportunity to pretend for two hours that I was everything that I am so ridiculously far from. I was a cafe going, cook book buying, novelist reading consumer.
When I left Barnes & Noble, I truly thought, "Boy I've got to do this more often!" I felt so unstressed, so unwound, treated and absolutely delighted. Then I came home and enjoyed the KFC that I stopped to pick up (as my husband preferred that over the lamb I had planned to make) and watched a few shows with my hubby and brother in law... the night was great. Until I went to bed.
In bed my husband simply asked me for a back scratch... a back scratch. Something so simple, but the fact that it was to make him "feel better" which must have suddenly reminded me of everything, I completely and 110% fell apart. I was in hysterics and my husband was there to calm me and I just couldn't stop crying. I told him how I felt at Barnes & Noble and how it'd been SO long since I'd felt the feeling of normality and how completely and utterly stressful it is to just deal with day to day things anymore.
It was a rather weak moment as I cried and complained about how overwhelmed I get, especially when he's having moments of pain or sickness and I have to sit bedside in the hospital and watch him in complete agony with there being absolutely nothing I can do to help. The worst being that sometimes I feel so alone, because I have to be the strong one (not the ridiculously sobbing one) for him and when it comes to updating friends and family no one is going to want to hear how it really is....What it all boiled down to was how this moment in Barnes & Noble reminded me of what was and what some day will be again, and how I just absolutely cannot wait for our lives to be normal again. That said, this week marks the half way point of his chemo... HOORAY!!! So now, just to cross our fingers that next week's marrow test comes back 100% in the clear of leukemia so that we can keep on with the chemo and not have to do a bone marrow transplant.
Also to note in the moment of weakness, I realized how amazing my husband is as he held me and comforted me while I calmed down and got it all off of my chest and returned to the usual. I think that was a long time coming, felt much better this morning.
I got a coffee and I even went as far as to have a most enjoyable piece of pumpkin cheesecake while I sat in the bookstore cafe. It felt so good, so incredibly liberating to do something that I used to watch so many people do as a barista, I was just there shopping around, entertaining the idea of reading various books... sort of pretending to be something I'm not, but it was amazing.
I've always fancied myself a reader. I've also thought it'd be nice to be wonderful domesticated housewife who has wonderfully planned out delicious meals, a ridiculously clean house, and a cute apron to wear while baking my latest creation. None of the above really suit me.
To be honest, there are few books I've read front to back, I've joined online "book clubs" and bought books that I never read, I have taken many trips to various bookstores and peruse the shelves as if with purpose and usually again, buy something I won't read or don't buy anything at all. I absolutely love the romantic idea of cozying up on a couch with a cup of cocoa and a good novel, but when given the chance... I'd rather have a nap.
As far as being some sort of domestic goddess, I get upset when I clean so much and really have nothing to show for it when it gets dirty so quickly; If I put the dishes away more than three consecutive times I feel a sense of abandonment and lack of support. I love throwing clothes into the laundry, but I absolutely hate folding them and my number one blood boiler being that my efforts go unnoticed when my hard labors stay in the basket they're delivered in and just get rummaged/unfolded instead of put away. I love to cook, however with my husband's constant change of taste and whatnot, I seem to find that he asks me what's for dinner and then 99% of the time follows with what he'd rather have for dinner... and yet, when asked what he'd like three hours prior, his answer is always that he's "not fussed".
All of that to say, that I certainly do not fit the bill for the things I would like to envision in myself. Now, if I were to sort of capture what I am as opposed to what I'd like to be... I think it would end up being something of a mess: An anal retentive, tightly wound, emotional basket case of an overly organized and obsessive compulsive nutter. No one wants that do they? But last night, last night I was given the opportunity to pretend for two hours that I was everything that I am so ridiculously far from. I was a cafe going, cook book buying, novelist reading consumer.
When I left Barnes & Noble, I truly thought, "Boy I've got to do this more often!" I felt so unstressed, so unwound, treated and absolutely delighted. Then I came home and enjoyed the KFC that I stopped to pick up (as my husband preferred that over the lamb I had planned to make) and watched a few shows with my hubby and brother in law... the night was great. Until I went to bed.
In bed my husband simply asked me for a back scratch... a back scratch. Something so simple, but the fact that it was to make him "feel better" which must have suddenly reminded me of everything, I completely and 110% fell apart. I was in hysterics and my husband was there to calm me and I just couldn't stop crying. I told him how I felt at Barnes & Noble and how it'd been SO long since I'd felt the feeling of normality and how completely and utterly stressful it is to just deal with day to day things anymore.
It was a rather weak moment as I cried and complained about how overwhelmed I get, especially when he's having moments of pain or sickness and I have to sit bedside in the hospital and watch him in complete agony with there being absolutely nothing I can do to help. The worst being that sometimes I feel so alone, because I have to be the strong one (not the ridiculously sobbing one) for him and when it comes to updating friends and family no one is going to want to hear how it really is....What it all boiled down to was how this moment in Barnes & Noble reminded me of what was and what some day will be again, and how I just absolutely cannot wait for our lives to be normal again. That said, this week marks the half way point of his chemo... HOORAY!!! So now, just to cross our fingers that next week's marrow test comes back 100% in the clear of leukemia so that we can keep on with the chemo and not have to do a bone marrow transplant.
Also to note in the moment of weakness, I realized how amazing my husband is as he held me and comforted me while I calmed down and got it all off of my chest and returned to the usual. I think that was a long time coming, felt much better this morning.
Monday, October 15, 2012
Unexpected Hospital Re-Entries
There are a lot of things that one expect to happen when a loved one is going through chemo:
1. Bad news (such as the diagnosis for example)
2. Chemo to be rough (involve vomiting, irritability, etc.)
3. Hospital stays for treatment
Then there are things that one doesn't really see coming, such as surprise trips to the hospital for secondary infections. On September 2nd (the day after my birthday) my husband spiked a fever of 103.4 and needless to say we went to the hospital and after multiple bags of blood and counts not responding, a short (but very scary stay in the ICU), a brain scan for possible aneurysm, and days of immense pain so painful that looking at him made the onlooker want to cry, they found out he had E. Coli. After twenty four hours of being on specific antibiotics for e. coli, he was like a caterpillar who'd just become a butterfly... turned over a whole new leaf and you'd never believe that he was the same person who went to sleep in that bed the night before.
It was one of the most scary moments of my life, might have even topped his moment of diagnosis.
That said, he was released from the hospital on Saturday (10/13) and we didn't even make it home and I had to pull over and let him be sick for quite an extended period of time. He soon had a rather intense headache (he said 9 on a 10 scale). He wasn't able to keep anything down, so morning medications were gone.... our oncologist called and had us direct admitted. When we got there and saw our oncologist, he told us that because the chemo he'd just had targets the brain, he could possibly have a chemical meningitis... but that it wasn't possible to prove. If it was chemical meningitis, he said simple steroids would do the trick. By early evening yesterday, Tom was able to hold down dinner and was able to get sleep overnight. Let us hope that it did the trick.
Our oncologist told us with his particular chemo regimen, with each discharge there is about a 25% chance he will return with some sort of secondary infection. I suppose that when I'm told that I should be less frightened when it happens, though I don't think that was the case. In any case, I'm very relieved that we were able to fast track to recovery.
1. Bad news (such as the diagnosis for example)
2. Chemo to be rough (involve vomiting, irritability, etc.)
3. Hospital stays for treatment
Then there are things that one doesn't really see coming, such as surprise trips to the hospital for secondary infections. On September 2nd (the day after my birthday) my husband spiked a fever of 103.4 and needless to say we went to the hospital and after multiple bags of blood and counts not responding, a short (but very scary stay in the ICU), a brain scan for possible aneurysm, and days of immense pain so painful that looking at him made the onlooker want to cry, they found out he had E. Coli. After twenty four hours of being on specific antibiotics for e. coli, he was like a caterpillar who'd just become a butterfly... turned over a whole new leaf and you'd never believe that he was the same person who went to sleep in that bed the night before.
It was one of the most scary moments of my life, might have even topped his moment of diagnosis.
That said, he was released from the hospital on Saturday (10/13) and we didn't even make it home and I had to pull over and let him be sick for quite an extended period of time. He soon had a rather intense headache (he said 9 on a 10 scale). He wasn't able to keep anything down, so morning medications were gone.... our oncologist called and had us direct admitted. When we got there and saw our oncologist, he told us that because the chemo he'd just had targets the brain, he could possibly have a chemical meningitis... but that it wasn't possible to prove. If it was chemical meningitis, he said simple steroids would do the trick. By early evening yesterday, Tom was able to hold down dinner and was able to get sleep overnight. Let us hope that it did the trick.
Our oncologist told us with his particular chemo regimen, with each discharge there is about a 25% chance he will return with some sort of secondary infection. I suppose that when I'm told that I should be less frightened when it happens, though I don't think that was the case. In any case, I'm very relieved that we were able to fast track to recovery.
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