I have been very fortunate for most of my life, in that I've been relatively healthy, and have always had health insurance. But when I was out of work for 15 months, I maintained our COBRA coverage for as long as I could and then I got a new job in June 2010 that did offer health insurance but not until you finished a six month probation period, something I have never encountered before in my life. So I had to let go of COBRA in July 2011 because we could no longer afford it, literally three days before Paul started to show any signs of being seriously ill. Once again Hornby luck strikes.
I also have never in my adult life had to deal with health insurance companies and now that they no longer even offer an HMO option, I had no idea about what PPO meant and how many hoops I would be jumping through.
The first nightmare I encountered was getting his Xeloda pills filled. Paul dealt with ordering the first course, since they need to be ordered and shipped to us. Why this has to be done is anyone's guess especially since the first bottle came from Cedars Sinai which is just down the street from us and I could have either picked it up or one of our good friends who works there could have gotten it. Paul had said that the woman mentioned some copay card that she would use when filling his prescription and he never thought to get the details or ask any questions about this and happily paid the $30 for the pills that would then be overnighted to us.
So when it came time for me to call in his refill, I called the CVS Caremark pharmacy number on the bottle and said we needed another set of pills. Turns out that the $30 charge for the first prescription was a mistake and that the real cost with our insurance for the pills would now be $150! I was driving to work at the time and had to pull over because I couldn't believe the hike in cost. I was then informed that it's a formulary drug and that the $150 price tag was a major savings as Xeloda retails for about $4,000+ a month!!!!! I gave the woman a credit card number and then called Paul to let him know about this and his response was, "well we can't afford that so I just won't take them." Of course, I told him that we would figure something out and that there was no way that he was going to stop his treatment. I also offered to go and pick up the drugs myself as I thought that it was just coming from Cedars, but I was informed that that too was a mistake and that the pills would now be coming from Chicago! They couldn't give me any reason for this but like most things with cancer, it is what it is.
It took me about two weeks to find out what this mystery copay card was that Paul was told about and I was pretty stunned that the social worker, who was well aware of our financial problems, didn't mention this. Turns out that Genentech, the manufacturer of Xeloda, offers copay assistance to those with insurance, oddly enough they do not offer this help to those without insurance or those on Medicare which makes no sense to me at all since those people really need the help. So I called them up and answered their questionnaire and voila, we qualified. Unfortunately, we couldn't get a refund on the $150 bottle but going forward they would pitch in 80% of the copay amount so the price went back down to $30.
One small win for us!
A fundraiser created by the British community of Santa Monica, California to help ex-pat, ex-rocker, Paul Hornby, fight stage 4 colorectal cancer.
Wednesday, July 27, 2011
Thursday, July 21, 2011
zap zap zap
A pre-zap photo for you in case you were wondering what it looks like to get radiation therapy. And who would have guessed that they also play music for you while you are undergoing the laser.
Sunday, July 17, 2011
i'm a farmer now
You might be asking what's so damn special about wheatgrass? Well, one ounce of wheatgrass juice is equal to eating 2.5 pounds of vegetables. You basically get almost all of your daily nutrional needs in one shot. But this one shot must be consumed within ten minutes of juicing or it's futile. And don't be fooled by those big trays that I grew, it takes about half of a tray to get one ounce worth of juice! I hear it's not the most pleasant tasting stuff in the world but hey, it can't hurt the boy to have his daily dose. Plus soaking the seeds, rinsing the seeds, planting the seeds in what is called a blanket and watching it sprout and transporting it to the sun to grow, is keeping me busy with a new hobby. Now I know how Eva Gabor felt in Green Acres.
Saturday, July 16, 2011
money woes
Since Paul started getting sick back in July 2010, his ability to work has been hampered significantly. It doesn't help that we live in Los Angeles where in summer and autumn temperatures can reach the high 90's and 100's which is the last thing you need when you are experiencing stomach distress and trying to keep hydrated. This has left me being the sole breadwinner, which I have no issue with in the least but with the economy the way it is, it's most definitely a difficult task. (*side note I was laid off back in 2009 and it took me 15 months to find a new gig, which then turned out to be hellish to put it mildly. It's not like I didn't have 15+ years of experience, a university education, employers were either just not hiring or they don't want to pay the true worth of what the position deserves or in many cases, I was overqualified. I lost my job again in January 2011 and luckily landed the best job I've ever had in April but the only snag with this perfect job is that I am a contractor. Health insurance is offered to us but at a cost of $890 a month and trust me I don't make that much but with some creative financing, I have been able to offset this somehow, but I digress).
When we first started going to the radiation oncology clinic, we were introduced to a social worker. She was nice enough and obviously knew her stuff but unfortunately, she could offer us no help in the finance department. Turns out when you have been self-employed like Paul for the last few years and in an economy where getting work is now considered a privilege and reporting losses on job is the norm. He was 4 credits short. I asked the social worker if he could apply for any other programs and she said that he would not qualify as I made too much. I scoured the internet to find out exactly how much he could get if we tried for these other programs and basically after finding the 7 page formula on some government site, I would have to take a 66% pay cut in order for him to get a measly $100 a month. Hell, I even asked Social Security if I could give him some of my credits as I have more than enough to spare but sadly, they said that was a no go.
To add to all of this, I was to be made a full time employee July 1st but I had a gut feeling that now that Paul had been diagnosed this might affect his insurance coverage. On the day I was supposed to have my conversion interviews, I decided to call our insurance company and sure enough, by two weeks, he now was flagged as having a pre-existing condition and I was informed that none of his cancer related care would be covered. I had to tell my boss to suspend the interviews and asked if I could continue to be a contractor until November when the six month probation period would be over and Paul would no longer be considered pre-existing and all of his care would be covered. I am very fortunate to work for one of the best companies in the country and that I have one of the most understanding bosses in the world.
Things are tight but somehow we are managing. Between the almost $900 a month to keep our health insurance, the copays with the doctors, the prescriptions, the special lotions, soaps and lip balms that he needs, my feeble attempts at a more healthy diet, things aren't easy on the wallet. But you just find a way somehow. I often joke that the stress is going to kill me off long before the cancer gets him.
When we first started going to the radiation oncology clinic, we were introduced to a social worker. She was nice enough and obviously knew her stuff but unfortunately, she could offer us no help in the finance department. Turns out when you have been self-employed like Paul for the last few years and in an economy where getting work is now considered a privilege and reporting losses on job is the norm. He was 4 credits short. I asked the social worker if he could apply for any other programs and she said that he would not qualify as I made too much. I scoured the internet to find out exactly how much he could get if we tried for these other programs and basically after finding the 7 page formula on some government site, I would have to take a 66% pay cut in order for him to get a measly $100 a month. Hell, I even asked Social Security if I could give him some of my credits as I have more than enough to spare but sadly, they said that was a no go.
To add to all of this, I was to be made a full time employee July 1st but I had a gut feeling that now that Paul had been diagnosed this might affect his insurance coverage. On the day I was supposed to have my conversion interviews, I decided to call our insurance company and sure enough, by two weeks, he now was flagged as having a pre-existing condition and I was informed that none of his cancer related care would be covered. I had to tell my boss to suspend the interviews and asked if I could continue to be a contractor until November when the six month probation period would be over and Paul would no longer be considered pre-existing and all of his care would be covered. I am very fortunate to work for one of the best companies in the country and that I have one of the most understanding bosses in the world.
Things are tight but somehow we are managing. Between the almost $900 a month to keep our health insurance, the copays with the doctors, the prescriptions, the special lotions, soaps and lip balms that he needs, my feeble attempts at a more healthy diet, things aren't easy on the wallet. But you just find a way somehow. I often joke that the stress is going to kill me off long before the cancer gets him.
Monday, July 11, 2011
fast food, really!?!?!?!
Once a week we get to meet with the main radiation oncologist to check in and talk about side effects that Paul is having and how treatment is progressing. He's been having a really tough time with it. Nausea, extreme fatigue, dizzy spells, no appetite, one minute constipation, the next minute being tied to the toilet. Our usual doctor wasn't available to meet with us today so we ended up getting the head of the department. You would think that this would be a good thing. What transpired during this ten minute appointment had me wanting to go for his jugular. Paul has been losing a lot of weight lately so we brought that up to this quack. His answer, "You need to start eating junk food like fast food." We explained to him that we don't eat fast food at all and his reaction just floored us. He actually said that he felt sorry for us and that a pizza or a burger would be the best thing Paul could have right now. I brought up that we have cut back on sugar and are mainly eating whole foods like vegetables, sprouted whole grain breads, free range organic chicken (the surgeon had warned us that Paul should not consume beef as this could cause major problems with Timmy and his obstruction). This quack laughed at us. Paul just watched me trying not implode. We quickly got out of there and decided to not to listen to this loser and just drove in stunned silence then later joked about it. Just so you know most medical students are not taught about nutrition and, of course, nutritionists aren't covered by most health insurances, thus, you are pretty much on your own to figure it all out. Good times I tell you.
Thursday, July 7, 2011
puzzles and the prostate posse
It's the crack of dawn and off we go to the hospital for another zapping. It's become a routine now. Get up, get ready, take Sunset Blvd down to UCLA as the sun comes up, look for the closest handicap spot, walk up to campus, take the elevator down to the dungeon, which always takes forever. People will get in by accident and ask if it's going up and we tell them, "No, this one is going down to the dungeon, we don't think you want to go down there." Wait a few minutes to have your name called, Paul goes in and I sit in the waiting room and wait for about 15-30 minutes depending on if the machine is working that day or if they need to realign the laser. Then I can hear when the zapping starts and when it ends, wait for my English Patient to reemerge. Start heading out of the clinic, wait for Paul to make a pit stop for his morning cup of decaf (another thing cancer has taken away from him, no more caffeine as that will cause him to become dehydrated and that's one of the last things you want). Get back in the car, head back home, get the patient settled, if it's an extra early appointment and we haven't had to wait too long, I can sneak in a quick nap before heading out to work.
The waiting room at radiation has to be one of the most depressing places ever. There is a sad looking aquarium on one wall but you rarely see the fish. One can come to all sorts of conclusions why there are so few fish in there like: have they have been killed off due to all the radiation, are they just hiding because they are depressed. You get the picture. The beige walls are bare for the most part and there is the customary stack of out of date donated magazines to keep you occupied. But there is also a table in the middle of the room with a half-finished puzzle. I learn quickly that it's first come, first crack at the puzzle. So if no one is around I will sit there and take a stab at it. The other regulars sometimes get annoyed with me since there is some unwritten rule that no one seems to talk to each other and no one will ever join another stranger in completing it. It's just plain strange. There are two Russian men who really become territorial about the puzzle and it amuses me.
Since the clinic books all of your appointments for the span of your treatment all at once, you tend to have the same time every morning and you start seeing the same people each day. I have nicknamed the predominantly male patients, the Prostate Posse. Remember no one really speaks to each other but I overhear them talking to the nurses and the other techs around and figure out that most of them have prostate cancer. Some have traveled from out of state to LA to have their treatment at UCLA. Some are local. Some come in wearing workout gear and then after treatment, get changed into suits for a day at the office, which just stuns us since the combo of the chemo pills and daily radiation is quickly taking its toll on Paul and these other guys look like spring lambs compared to him. We just keep reminding ourselves that everyone reacts differently to treatment just like there is no generic type of cancer or treatment.
Apparently today was graduation day for one of the other patients. Turns out he has brain cancer and was having his last zap. The clinic gives all patients on their last appointment a diploma saying that they completed treatment and in the case of brain cancer patients, they get to receive the mold that was created to keep their head in the right place for the laser. I've told Paul we will frame his certificate when he is done with this. Only 20 more zaps to go.
The waiting room at radiation has to be one of the most depressing places ever. There is a sad looking aquarium on one wall but you rarely see the fish. One can come to all sorts of conclusions why there are so few fish in there like: have they have been killed off due to all the radiation, are they just hiding because they are depressed. You get the picture. The beige walls are bare for the most part and there is the customary stack of out of date donated magazines to keep you occupied. But there is also a table in the middle of the room with a half-finished puzzle. I learn quickly that it's first come, first crack at the puzzle. So if no one is around I will sit there and take a stab at it. The other regulars sometimes get annoyed with me since there is some unwritten rule that no one seems to talk to each other and no one will ever join another stranger in completing it. It's just plain strange. There are two Russian men who really become territorial about the puzzle and it amuses me.
Since the clinic books all of your appointments for the span of your treatment all at once, you tend to have the same time every morning and you start seeing the same people each day. I have nicknamed the predominantly male patients, the Prostate Posse. Remember no one really speaks to each other but I overhear them talking to the nurses and the other techs around and figure out that most of them have prostate cancer. Some have traveled from out of state to LA to have their treatment at UCLA. Some are local. Some come in wearing workout gear and then after treatment, get changed into suits for a day at the office, which just stuns us since the combo of the chemo pills and daily radiation is quickly taking its toll on Paul and these other guys look like spring lambs compared to him. We just keep reminding ourselves that everyone reacts differently to treatment just like there is no generic type of cancer or treatment.
Apparently today was graduation day for one of the other patients. Turns out he has brain cancer and was having his last zap. The clinic gives all patients on their last appointment a diploma saying that they completed treatment and in the case of brain cancer patients, they get to receive the mold that was created to keep their head in the right place for the laser. I've told Paul we will frame his certificate when he is done with this. Only 20 more zaps to go.
spring lambs
Paul's interpretation of the other patients and how they are spring lambs. If I had waited two more days, he would not have been able to do this because the treatment is kicking his ass (pun intended)
Friday, July 1, 2011
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