Dad had his 4th treatment last week, and we made sure he got lots of rest for a few days afterwards - so it didn't hit him like it did on the previous treatment. Followup bloodwork was good, and he also had a CT Scan yesterday to "re-stage" and send results to the oncologist in St Louis, at the Barnes Jewish cancer center. We are working on getting a referral to a well-reputed surgeon there, Steven Strasberg.
This week is also the deadline for medicare open enrollment and we still haven't decided on part D medicine coverage. Today we're meeting with the pharmacist for his recommendation. Yikes, what an ordeal; it is a huge decision with enormous financial implications for seniors. It is a complex and convoluted process. I have spent many hours online pricing mom and dad's specific drugs - I can't imagine most seniors are doing this!
Plus, my understanding is that Part D (as it was modified about 5-6 years ago), is costing us much more than other government spending people are griping about (wars, bailouts, recovery act, ear marks) - Part D being a huge government handout to the pharmaceutical companies. Imagine you're a huge company like Walmart, or uh.....Medicare....with an incredible amount of negotiating power... normally you use your buying power to arrange better prices for your organization so you can provide better prices to your customers (ie., be more competitive, or in Walmart's case, make incredible profits). Yet, our elected officials in their infinite wisdom, signed this deal with the drug companies agreeing that Medicare could NOT negotiate for better prices....ie., the drug companies can sell at whatever price they choose... Would they have signed that deal if it were their credit, their name, their hard-earned money?
Hmmmm... I wonder if this has something to do with the healthcare meltdown we are seeing? Healthcare costs exploding exponentially? Drug commercials all day, every day? Drug companies showing HUGE profits in this terrible economy while most people are struggling? The cost of the silly little bailout is nothing compared to the billions we are handing to drug companies right now. The whole thing will eventually collapse, but I'm afraid it's gonna take us all down with it.
Wednesday, December 29, 2010
Sunday, December 19, 2010
A good time in Branson
We spent 2 nights in Branson, enjoyed the drive-thru festival of lights, and a couple films at the Imax, which dad said is not nearly as impressive as the Omimax in St Louis, but we all enjoyed it nevertheless.
Saturday, December 11, 2010
3rd treatment was Tuesday
Dad's 3rd treatment hit him a little harder than the others, about 2-3 days afterwards he was feeling really tired. He thinks it might have been that combined with a water pill he took for his ankle which has been swelling. They say drinking lots of water helps reduce symptoms by washing the chemo through your system - maybe the water pill conteracted his water intake???
He's feeling much better now, 4 days out.
Oh, huge THANK YOU to Lori (and grandpa's little helper Sami) who were out here for over a month and were a lot of help (we are all particularly grateful for the sloppy chicken meals - yummy!). Dad really misses Sami helping make the bed, not to mention.....put out the dogs, bring in the dogs, put out the dogs, bring in the dogs.....
Next week Thursday - Friday, we are going to Branson for 2 nights, since Dad said he wants to go - though if he is not feeling well, we can always cancel out. We'll just drive around town and check out the lights, and relax in the 2-bedroom suite (timeshare we've stayed at before).
Dad has the normal follow-up bloodwork on Tuesday, so our biggest challenge is getting the dogs to the kennel!
He's feeling much better now, 4 days out.
Oh, huge THANK YOU to Lori (and grandpa's little helper Sami) who were out here for over a month and were a lot of help (we are all particularly grateful for the sloppy chicken meals - yummy!). Dad really misses Sami helping make the bed, not to mention.....put out the dogs, bring in the dogs, put out the dogs, bring in the dogs.....
Next week Thursday - Friday, we are going to Branson for 2 nights, since Dad said he wants to go - though if he is not feeling well, we can always cancel out. We'll just drive around town and check out the lights, and relax in the 2-bedroom suite (timeshare we've stayed at before).
Dad has the normal follow-up bloodwork on Tuesday, so our biggest challenge is getting the dogs to the kennel!
Thursday, November 25, 2010
Second treatment
Dad's bloodtests were all good, and he even gained weight, so they went ahead with the 2nd chemo treatment on Tuesday, and the follow-up neulasta shot on Wednesday. So glad for the neulasta shot which bumps up the white cell count to ward off infections, since I have had a cold for the past week and he has NOT caught it!
Being extra careful using hand sanitizer and washing hands constantly, fully covering any coughs, plus trying not to touch anything, and wiping down door knobs, counters, etc. with clorox wipes on a regular basis. Taking zicam, airbourne, extra vitamins, and cold medicines, hoping not to pass this on to anyone. Lori had a bit of a sore throat yesterday but has been downing the zicam, etc. and hopes this bug doesn't catch her.
Today we had ham, scalloped potatos and fresh green beans, since we were all pretty full up on turkey from the weekend. :-) Happy Thanksgiving all!
Being extra careful using hand sanitizer and washing hands constantly, fully covering any coughs, plus trying not to touch anything, and wiping down door knobs, counters, etc. with clorox wipes on a regular basis. Taking zicam, airbourne, extra vitamins, and cold medicines, hoping not to pass this on to anyone. Lori had a bit of a sore throat yesterday but has been downing the zicam, etc. and hopes this bug doesn't catch her.
Today we had ham, scalloped potatos and fresh green beans, since we were all pretty full up on turkey from the weekend. :-) Happy Thanksgiving all!
Tuesday, November 23, 2010
Monday, November 22, 2010
Early thanksgiving with Tyler
Tyler came out from California this past week for 4 days to visit; we fixed early thanksgiving meals - ham one night and then turkey another, and snacking on all the great leftovers in between! Don't think dad will have lost any weight this week!
Tomorrow morning is the next chemo treatment which we hope goes as smoothly as the last one. I think dad enjoys chatting with the chemo nurses who are all very nice, and are at his beck and call (or perhaps, at his mercy!), as he bends their ears mercilessly about the need for universal healthcare. Just what dad loves - a captive audience! :-)
Tomorrow morning is the next chemo treatment which we hope goes as smoothly as the last one. I think dad enjoys chatting with the chemo nurses who are all very nice, and are at his beck and call (or perhaps, at his mercy!), as he bends their ears mercilessly about the need for universal healthcare. Just what dad loves - a captive audience! :-)
Wednesday, November 17, 2010
First follow-up appointment since starting chemo
Yesterday was dad's 1st follow-up appointment (1 week out) after starting chemo. Bloodwork confirmed everything looks good. He gained one pound - yippee - exactly what we want and much better than losing weight. All his levels were as expected: high on white cells (because of the neulasta injection which boosts them up high to ward off infections); slightly low on red cells and platelets - caused by chemo but well above the problem level. Everything points towards him being strong and healthy enough to continue with the next treatment.
He's feeling good although sometimes more fatigued than normal. Will hope he keeps handling the chemo well and doesn't have any of those ugly adverse affects like nausea.
Last night Lori made her famous crock pot BBQ chicken and it was fantastic! We all decided we could do that meal a couple times a week. :-) Tomorrow Tyler arrives and we are doing a ham feast with green bean casserole, pumpkin pie, etc. Then on the weekend we'll be having turkey - celebrating an early thanksgiving.
On the insurance front:
Been shopping for hours (online, by phone) for medicare supplemental plans (Plan F is the best option) and we were lucky to find that the cheapest, Mutual of Omaha, was also recommended as best by the insurance expert at the cancer center. For Part D meds coverage (yuck, it is not easy to compare apples to artichokes, so you really have to dig deep here), have decided on AARP RX Preferred based on mom and dad's meds, but will confirm with our insurance expert before we sign up - in case they've hidden something in the fine print.
When it comes to medical insurance, you could really be in trouble if you overlook something, OR simply if you come down with some illness mid-year requiring a med they don't cover. The whole thing stinks; between medicare "advantage" plans and part D, we've thrown our seniors to the wolves.
He's feeling good although sometimes more fatigued than normal. Will hope he keeps handling the chemo well and doesn't have any of those ugly adverse affects like nausea.
Last night Lori made her famous crock pot BBQ chicken and it was fantastic! We all decided we could do that meal a couple times a week. :-) Tomorrow Tyler arrives and we are doing a ham feast with green bean casserole, pumpkin pie, etc. Then on the weekend we'll be having turkey - celebrating an early thanksgiving.
On the insurance front:
Been shopping for hours (online, by phone) for medicare supplemental plans (Plan F is the best option) and we were lucky to find that the cheapest, Mutual of Omaha, was also recommended as best by the insurance expert at the cancer center. For Part D meds coverage (yuck, it is not easy to compare apples to artichokes, so you really have to dig deep here), have decided on AARP RX Preferred based on mom and dad's meds, but will confirm with our insurance expert before we sign up - in case they've hidden something in the fine print.
When it comes to medical insurance, you could really be in trouble if you overlook something, OR simply if you come down with some illness mid-year requiring a med they don't cover. The whole thing stinks; between medicare "advantage" plans and part D, we've thrown our seniors to the wolves.
Saturday, November 13, 2010
Where we're at now....
We started this blog to keep family and friends posted on dad. His initial diagnosis of pancreatic cancer in early October was pretty scary; they thought the tumor involved major arteries (inoperable) and might have spread to the liver. We kept digging for the best options for treatment, but were very much impressed with his oncologist right here in Joplin, Dr Anisa Hassan.
The Tumor Board: Dad's oncologist took his case before the local tumor board; they reviewed his case and said his PT scan found no spread, tumor was localized in pancreas only and not involving major arteries - so it could be curable by operation!!! They referred him to MD Anderson in Houston (and secondarily to Barnes Jewish in St Louis) - that's when we really ran into problems.
Insurance nightmare: It turns out many of the best clinics and specialty health organizations, including the specific clinics recommended for this pancreatic cancer surgery, do not accept Medicare Advantage plans (the "medicare replacement" plans which many seniors have been buying into, or having their retirement medical converted to). Dad's coverage when he retired was the best you could get, but was converted to a medicare advantage plan about 2 years ago.
Notice to all seniors: DUMP YOUR MEDICARE ADVANTAGE PLAN! Before you have to use it! You can call specialty clinics around the country or look online at what insurance they accept - you'll find what I'm saying is true. I've talked to the state insurance board, state health care assistance folks, social workers, oncologists, and insurance specialists at these clinics. They all agree, and I quote: "Medicare advantage plans are great unless you're SICK"!!! Then you're really completely uninsured if you want to go to the doctor with lots of experience in your specific disease, the doctor who's the best, or simply the doctor whose surgery you can actually survive! Just so you understand the implications, our upfront cost out of pocket at MD Anderson - just for consultation and testing - would be $38,000; chemo is well over $10,000 per month; additional meds for nausea, etc. tend to run over $100 per pill; surgery would be astronomically expensive. Fortunately, we found other options.
We are very lucky to have been so close to year end and open enrollment; dad is disenrolling in his medicare advantage plan and going with traditional medicare plus a supplemental, which will fully cover him at the specialty clinic of his choice, effective January 1. In the meantime, his oncologist here discussed his case with the surgeon at MD Anderson and began a pre-operative chemo therapy which he will have every two weeks until January.
Treatment is Gemzar and Cisplatin every two weeks, followed by neulasta injection on day 2. He has bloodwork every week to check blood counts, etc.
Good news: so far, he is not feeling any ill effects except a little tiredness. We are forcing lots of terrible stuff (known as green leafy vegetables, healthy fats, and proteins) into him to keep his red cell count and weight from dropping. He gets a neulasta injection which helps with the white cell count. And I am sure he is sick of being told to drink more water! (Water is supposed to wash through the chemo and greatly reduce symptoms.)
Will keep this blog updated!
The Tumor Board: Dad's oncologist took his case before the local tumor board; they reviewed his case and said his PT scan found no spread, tumor was localized in pancreas only and not involving major arteries - so it could be curable by operation!!! They referred him to MD Anderson in Houston (and secondarily to Barnes Jewish in St Louis) - that's when we really ran into problems.
Insurance nightmare: It turns out many of the best clinics and specialty health organizations, including the specific clinics recommended for this pancreatic cancer surgery, do not accept Medicare Advantage plans (the "medicare replacement" plans which many seniors have been buying into, or having their retirement medical converted to). Dad's coverage when he retired was the best you could get, but was converted to a medicare advantage plan about 2 years ago.
Notice to all seniors: DUMP YOUR MEDICARE ADVANTAGE PLAN! Before you have to use it! You can call specialty clinics around the country or look online at what insurance they accept - you'll find what I'm saying is true. I've talked to the state insurance board, state health care assistance folks, social workers, oncologists, and insurance specialists at these clinics. They all agree, and I quote: "Medicare advantage plans are great unless you're SICK"!!! Then you're really completely uninsured if you want to go to the doctor with lots of experience in your specific disease, the doctor who's the best, or simply the doctor whose surgery you can actually survive! Just so you understand the implications, our upfront cost out of pocket at MD Anderson - just for consultation and testing - would be $38,000; chemo is well over $10,000 per month; additional meds for nausea, etc. tend to run over $100 per pill; surgery would be astronomically expensive. Fortunately, we found other options.
We are very lucky to have been so close to year end and open enrollment; dad is disenrolling in his medicare advantage plan and going with traditional medicare plus a supplemental, which will fully cover him at the specialty clinic of his choice, effective January 1. In the meantime, his oncologist here discussed his case with the surgeon at MD Anderson and began a pre-operative chemo therapy which he will have every two weeks until January.
Treatment is Gemzar and Cisplatin every two weeks, followed by neulasta injection on day 2. He has bloodwork every week to check blood counts, etc.
Good news: so far, he is not feeling any ill effects except a little tiredness. We are forcing lots of terrible stuff (known as green leafy vegetables, healthy fats, and proteins) into him to keep his red cell count and weight from dropping. He gets a neulasta injection which helps with the white cell count. And I am sure he is sick of being told to drink more water! (Water is supposed to wash through the chemo and greatly reduce symptoms.)
Will keep this blog updated!
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