Have you heard that there are no snakes in Ireland? For many of you this fact may not be very remarkable. For me, it is miraculous. I have a fairly severe snake phobia, which is a handicap living where I do. We live in a snake sanctuary. Parts of our house are nearly 300 years old. We have a basement that is more earth than house, and many stone walls around our property built from rocks collected probably around the time the house was built. Lots of time and room for snake families to flourish and multiply. In addition, beyond the yard is a field of alfalfa and weeds that is ideally suited for frolicking snakes. Snakes have been found in our basement, our living room, our barn, and of course in our yard. (I have frequent nightmares about discovering them at the foot of my bed.)
From March through October, I walk through our property with toes curled, fists clenched, and at the height of alertness. I have a very keen eye for spotting snakes. I am an accomplished "snaker" (like birder.) There are days when I might see three or four snakes in an afternoon of cautious gardening.
I am a lousy but diligent gardener. Gardening is exhausting for a person who suffers from ophidiophobia. First of all, you are in a constant state of semi panic, which is exhausting all by itself. (Not unlike sitting in the waiting room to hear the results of your mammogram.) In addition to the psychological struggle, you have to keep your feet away from any plant taller than your ankle (a snake could be hiding under something that tall and then slither over your feet - the ultimate horror for the ophidiophobic.) Then you have to kind of dart your hand into the target area to drop a seed, grab a weed or harvest a tomato. You don't want your hand to dilly dally for long among the fronds of snake camouflage. The unknowing observer of my gardening technique might think I am playing a very competitive game of Twister. As you can imagine, this style of gardening is far more demanding than the kind of activity you see pictured on all the catalogues that arrive at this time of year - a relaxed, contented lady kneeling at the edge of her tidy garden in the suburbs wearing pristine gloves, not a weed in sight. I would no sooner kneel in my yard than I would try to figure out how to cock a pistol while facing one of my children. It would be foolish.
Anyway, how did I get on this rant. So, the highlight of my brief trip to Ireland was walking through tall grass and pasture with toes and fingers relaxed, taking in the spectacular views, the intoxicating smells and knowing I had nothing to fear...except maybe cancer. I will say that I was a bit more aware of my cancer in Ireland than in Massachusetts. I have said before that I don't usually feel the need for a support group because I don't feel too isolated in my misfortune. I have known many people with cancer. My friends and family know many people with cancer. It is a familiar ghost that haunts many of us. In Ireland, I felt I needed a support group because it seemed like I was the only person there who had it. Perhaps there is no cancer in Ireland? Wait - a - minute...I think I've made a monumental discovery! There are no snakes in Ireland. There is no cancer in Ireland. Ergo, snakes cause cancer! I got cancer because of the disproportionate exposure I have had to snakes. This could be the discovery that makes me famous. Keep your eyes on the New England Journal of Medicine, people.
We did a lot of driving in Ireland. I usually hate driving as a way of exploring a new place. I would much rather walk, bike, kayak, or horseback ride. The road itself ruins the scenery. However, for this trip it worked pretty well since I was in the more symptomatic phase of the chemo cycle, and didn't have it in me to do most of those things. We arrived in Dublin on Wednesday morning, rented a car and spent the next three days driving southwest towards the coast of County Cork and then northwest through County Kerry to Killarney National Park. We stayed at lovely hotels, and at a beautiful resort in Sneem. We took long walks and ate fabulous meals made from local produce.
One downside of this mode of travel was my husband's driving. A man on vacation, driving a sporty, new, rented Mercedes, on the "wrong" side of the road, using a steering wheel on the "wrong" side of the car, quickly resembles an irresponsible, slightly deranged teenage boy on a bumper car ride. It was harrowing. And what made it worse was the Irish. Their speed limits are ridiculous! Driving one hundred kilometers per hour on narrow country roads with hairpin turns, twelve foot stone walls on one side and rocky cliffs on the other, is not a sensible pace. Worrying about dying in a car accident, however, made me realize that worrying about breast cancer is a luxury reserved for people who aren't about to die from something else.
Although neither of us had ever been to Ireland, much of the scenery seemed familiar to us. At the Rock of Cashel we had long views into valleys of sheep and cattle farms. (I confess that I am not much interested in religion or religious history so the historical significance of the place didn't make much of an impression on me.) Along one side of the property was a little footpath that meandered through a sheep pasture to the village below. I have often yearned for a lifestyle that resembles 19th century ladies living in rural England a la BBC productions of Middlemarch or Sense and Sensibility. That little path was the place.
We were also reminded alternately of the coast of Maine, New Brunswick, Arizona, Washington...It became a running joke. You know what this reminds me of? My husband remarked that the trip was like a smoothie that blended all of the trips we have taken over the last 35 years. Delicious.
Thursday, April 28, 2011
Tuesday, April 19, 2011
When Irish Eyes are Smiling
When Irish eyes are smiling, Sure, 'tis like the morn in Spring. In the lilt of Irish laughter You can hear the angels sing. When Irish hearts are happy, All the world seems bright and gay. And when Irish eyes are smiling, Sure, they steal your heart away.Hi Everyone,You'll never guess where I'm going this evening. Well, maybe you can. Ireland! Such an amazing treat. My husband has a business meeting and since it was a pretty simple trip, he suggested I come along. I was a bit hesitant since I had my last AC infusion yesterday and would not be feeling at the top of my game this week, but with reassurance from my doctor and a couple of fresh strategies for dealing with nausea and head aches, I am confident that I will thoroughly enjoy it. I am so excited. I've never had much of a yearning to see Ireland, but now that I am going, I can't think of anywhere else I would rather spend the next few days. We are going to Cork and will tour around the area.Other updates. In reference to Neulasta Quest, you will never believe that just yesterday I received both a packet of materials on how to work with Curascripts and a CALL from Curascripts asking me if I needed to order more syringes! (As of this afternoon, I am done with Neulasta.) AMAZING.I sent copies of my blog to the CEOs of the three companies involved in that saga, so if these posts mysteriously cease, think first about the possibility of foul play, then consider cancer.Time to pack. Wish me luck, and lots of love to you all.Amyp.s. Sorry about the formatting glitches here, but I don't have the time to fix them!
Thursday, April 14, 2011
Treatment and Ticks
Dear Bloggees,
It occurred to me me that I haven't provided much news lately about my treatment plan or progress. I will do that today since I know many of you are kind enough to be interested.
Every two weeks I receive an infusion of two chemotherapy drugs called Adriamycin and Cytoxan (AC). I have completed three rounds of this therapy. My last is this Monday. Two weeks later I begin a weekly schedule of infusions of two different drugs, Taxol and Herceptin (TH). I will follow this regimen for twelve weeks. That will bring me to mid-July. About two or three weeks later I will start a six-week, daily schedule of radiation treatments. That will take me through mid-September. I will continue to receive an infusion of Herceptin once every three weeks for the rest of the year. Add PT twice a week, and that's a lot of freakin' medical appointments. No wonder cancer patients are exhausted.
As I have mentioned, the side effects of the AC have been pretty tolerable. Two or three days of the first week following the AC infusion I feel kind of queasy and head achy. The rest of the time I feel pretty close to normal. I am told that the TH drill is even a bit easier. I hope that my relative tolerance for this poison isn't an indication that it isn't working. I am so afraid of those evil little cancer cells that are lurking behind my vital organs waiting to attack as soon as the exterminators stop flooding my system with poison.
The radiation component of the treatment plan was just decided this week. It was uncertain whether I was an appropriate candidate for radiation because my particular disease profile didn't quite meet all of the criteria that ordinarily justifies it. However, after the radiation oncologist and his resident explained all of the reasons why radiation was justified in my case, I was ready to double the chemo schedule, add in simultaneous radiation treatments and then jump off a cliff. The conversation was a frightening reminder of the aggressive nature of my enemy.
I've wondered a couple of times in this place at my relative optimism about the likelihood of my surviving this disease. On closer analysis, I've decided that I feel optimistic, but think pessimistic. I can't stop imagining that future conversation with my oncologist when he says, "it's back." It will be hard to feel optimistic after that.
In other news, last week I was bitten by a tick. This is at least the fourth time I have battled with our thriving tick community. You cannot walk to the edge of our yard without picking up at least 2 or 3 ticks. If I had a penny for every tick my husband and I have picked off ourselves, each other and our dogs, I would probably spend less time monitoring my "monetization" (Blogger's word, not mine) of this blog. (I've earned $5.46.)
Not all of our bugs are deer ticks, but many of them are. Twice I've been diagnosed with Lyme disease. After this week's bite, I was very discouraged by the prospect of adding another nuclear powered drug (the antibiotic they usually give to prevent Lyme) to the chemo cocktail. Fortunately, it turned out I was spared the antibiotic. That made me happy. Other stuff is making me happy this week. I feel pretty good. Our kitchen shelves are filled with gorgeous jars of golden honey recently harvested by my husband from his bee hives. Our daffodils are in full bloom. The blue birds are darting about their houses. And, no matter how pessimistically I think, I know I will be around next year to enjoy it all again.
It occurred to me me that I haven't provided much news lately about my treatment plan or progress. I will do that today since I know many of you are kind enough to be interested.
Every two weeks I receive an infusion of two chemotherapy drugs called Adriamycin and Cytoxan (AC). I have completed three rounds of this therapy. My last is this Monday. Two weeks later I begin a weekly schedule of infusions of two different drugs, Taxol and Herceptin (TH). I will follow this regimen for twelve weeks. That will bring me to mid-July. About two or three weeks later I will start a six-week, daily schedule of radiation treatments. That will take me through mid-September. I will continue to receive an infusion of Herceptin once every three weeks for the rest of the year. Add PT twice a week, and that's a lot of freakin' medical appointments. No wonder cancer patients are exhausted.
As I have mentioned, the side effects of the AC have been pretty tolerable. Two or three days of the first week following the AC infusion I feel kind of queasy and head achy. The rest of the time I feel pretty close to normal. I am told that the TH drill is even a bit easier. I hope that my relative tolerance for this poison isn't an indication that it isn't working. I am so afraid of those evil little cancer cells that are lurking behind my vital organs waiting to attack as soon as the exterminators stop flooding my system with poison.
The radiation component of the treatment plan was just decided this week. It was uncertain whether I was an appropriate candidate for radiation because my particular disease profile didn't quite meet all of the criteria that ordinarily justifies it. However, after the radiation oncologist and his resident explained all of the reasons why radiation was justified in my case, I was ready to double the chemo schedule, add in simultaneous radiation treatments and then jump off a cliff. The conversation was a frightening reminder of the aggressive nature of my enemy.
I've wondered a couple of times in this place at my relative optimism about the likelihood of my surviving this disease. On closer analysis, I've decided that I feel optimistic, but think pessimistic. I can't stop imagining that future conversation with my oncologist when he says, "it's back." It will be hard to feel optimistic after that.
In other news, last week I was bitten by a tick. This is at least the fourth time I have battled with our thriving tick community. You cannot walk to the edge of our yard without picking up at least 2 or 3 ticks. If I had a penny for every tick my husband and I have picked off ourselves, each other and our dogs, I would probably spend less time monitoring my "monetization" (Blogger's word, not mine) of this blog. (I've earned $5.46.)
Not all of our bugs are deer ticks, but many of them are. Twice I've been diagnosed with Lyme disease. After this week's bite, I was very discouraged by the prospect of adding another nuclear powered drug (the antibiotic they usually give to prevent Lyme) to the chemo cocktail. Fortunately, it turned out I was spared the antibiotic. That made me happy. Other stuff is making me happy this week. I feel pretty good. Our kitchen shelves are filled with gorgeous jars of golden honey recently harvested by my husband from his bee hives. Our daffodils are in full bloom. The blue birds are darting about their houses. And, no matter how pessimistically I think, I know I will be around next year to enjoy it all again.
Wednesday, April 6, 2011
A Lesson in Health Insurance
Not surprisingly I have been learning first hand some reasons for why we need health care reform. Chronicled here is a long, truthful, hopefully somewhat humorous record of my efforts to obtain 4 doses of a drug I must take following each chemotherapy infusion. The drug is called Neulasta which prevents infections that could arise from having low white blood cell counts. My health insurance provider, TUFTS HEALTH PLAN (I am feeling angry with them. To vent this anger, I will hereafter try to remember to refer to them in ALL CAPS), is very reluctant to fill this prescription because it is very expensive. Actually, I see their point. Each syringe costs $8000.00! One wonders how .6 milliliter of anything could be worth so much. For that kind of money it ought to be curing the cancer.
The manufacturer of this precious substance is AMGEN (not feeling too affectionately towards this company either.) A very brief google search produced the following answer:
"Amgen Inc., the world’s largest biotechnology company, said fourth-quarter profit rose 9.8 percent on rising sales of its top two drugs, Neulasta and Enbrel, and lowered expenses for research and taxes. Net income rose to $1.02 billion, or $1.08 a share, from $931 million, or 92 cents a share, a year ago, the Thousand Oaks, California-based company said in a statement. Excluding certain costs, earnings of $1.17 per share beat the $1.11 average estimate of 23 analysts surveyed by Bloomberg."
So the Neulasta quest goes like this.
Monday, February 28:
Nurse: so your insurance company (TUFTS!) requires that you order your Neulasta from a mail order pharmacy called CURASCRIPTS (another bad guy in this saga). So we will send the prescription to CURASCRIPTSs and they will send it to you in time for your injection.
Amy: (still naive to the potential challenges of filling a prescription): Okay. So all I do is wait to receive the prescription.
Nurse: Right. You may receive it a couple of days before you need to take it. Keep it in the refrigerator during that time.
Amy: Right
Thursday, March 3 (5 days before I have to take the Neulasta)
Amy calls Nurse: I haven't received the drug.
Nurse: (After checking her files.) Well, we sent the prescription to them last week. I will follow up with CURASCRIPTS. Maybe you should check with your insurance company to make sure there are no issues on their end.
Amy calls TUFTS: Can you tell me the status of approval for a drug I need called Neulasta. I was supposed to receive it in the mail through CURASCRIPTS but I haven't received it yet, and I need it by Tuesday at the latest and what with the weekend coming up, I am concerned.
TUFTS: Let's see. I don't think we have received any prescription. You might want to check with your doctor.
Amy: I just got off the phone with my doctor and they told me they had sent the prescription to TUFTS and that I should call you. (The weaknesses of the American Health Care System are beginning to dawn on me.) I will tell them to send it again. Please confirm the fax number.
TUFTS: Very good. I will call CURASCRIPTS as soon as we receive the prescription. Don't you worry, Maam, we'll sort it out.
Amy: (Much relieved and feeling very grateful to this woman who, after all, had no responsibility for the problem.) Thank you so much. What is your name so that I can contact you if I have any further problems since you have been so helpful. Thank you again.
TUFTS: My name is Sue. Please feel free to call me any time.
Amy calls NP: TUFTS is telling me that they haven't received the prescription. I hate to bother you, but could you resend it to the fax number that you already sent it to?
Friday, March 4, 3:00 PM (4 days before I need the shot, 1 business day.)
No sign of a package from CURASCRIPTS. Who to call now. Lets try CURASCRIPTS.
Amy: Can you tell me the status of my prescription...
CURASCRIPTS: (After 10 minutes on hold.) Hmmmmm. I do not see any record of a pending prescription for you.
Amy: (Losing patience. I am ordinarily a very patient person.) The doctor sent the prescriptions out twice. The first time was early last week, the second time a couple of days ago. I'm not sure what else I can do. I have to have this medicine by Tuesday. It's kind of a life or death sort of situation. (By this time I felt entitled to ramp up the personal drama a notch or two. Tears would come next.) I will try calling TUFTS again.
CURASCRIPTS: Don't worry Maam. We will sort this out. Worst case, we will have to implement a one-time override that will allow you to pick up your prescription at your local pharmacy.
Amy: (Overly grateful). Thank you so much for your help. Would you mind telling me your name so I can contact you again should I run into any further problems?
CURASCRIPS: Of course, it's Chanel. Here is my extension number. Please call me anytime time. Best of luck to you.
Amy calls TUFTS: Can I speak with Sue?
TUFTS: Sue? We have no Sue at this number.
Amy: (Repeats her sad story for the 10th time to new stranger.)
TUFTS: Hmmm. Seems we have the prescription. The only problem is that there is not enough time for CURASCRIPTS to mail out the medicine so that you receive it in time to administer it. I'll call CURASCRIPTS and get back to you.
Amy: (Not as grateful. Beginning to feel more vengeful.) Great. Can you please give me your name and extension number. Are you planning to quit your job in the next week or so, or will I be able to reach you at this number. I would prefer not to have to retell this whole boring story for the 15th time to another stranger.
TUFTS: Certainly. My name is Michael. And we will fix this. Don't you worry Maam.
Friday, March 4, 4:30 PM
Amy calls CURASCRIPTS. Dials Chanel's extension.
CURASCRIPTS: Recorded message: This extension is no longer active. Please dial blah, blah, blah to speak with an operator.
Amy dials blah, blah, blah. Wades through 7 different electronic steps to reach a live operator. Tells the sad tale for the 15th time.
CURASCRIPTS: Well, it looks like we will need to implement a one-time override. Tell me the name of your pharmacy...
Friday, March 4, 6:00 PM:
Amy calls CVS. Can you tell me the status of my prescription.
CVS: What prescription. We don't have any prescription.
Amy: I give up. I suppose I would rather die of pneumonia than cancer.
CVS: Don't worry maam. We'll figure this out.
Amy: I doubt it.
Saturday, March 5, 9:00 AM (at least CVS works on the weekends.)
CVS: Your prescription is ready for pick up.
No major infections this week.
Tuesday, March 15, (8 days before I need the shot)
I thought it might help the process to initiate the dialogue earlier with the trio of brain surgeons that collectively have been so helpful in making sure I have nothing to worry about this round. Might as well stop bugging the actual physicians since to alienate them could also be life threatening. I'll start with my buddies at TUFTS who, after all promise, "No one does more to keep you healthy." If only they had a similar ambition for keeping you alive.
Amy: Is Michael there? (Hoping for a miracle)
TUFTS: Hello, this is Michael.
Amy (recovering from the shock of a logical beginning to the day's work.): Hi Michael. I haven't heard anything about my next Neulasta prescription which I need before the weekend.
Michael: Let me review the notes on this. (Twenty minutes later.) Hmmm. looks like Tufts has a 14-day limit on refills for this drug.
Amy: Well that makes sense. I only need it every 14 days.
Michael: Let me see what's going on. I will call you later.
Thursday, March17 (4 business days before I will need the next shot)
No word from Michael. Just for fun I decide to call CURASCRIPTS To learn what they have to contribute to this comedy.
Amy: Can you tell me the status of my prescription?
CURASCRIPTS: We just filled that prescription.
Amy: I know. I am calling about the next one. The one that should already be in the mail so that I have it by next Monday.
CURASCRIPTS: Hmmmmmm. Let me review the records. (Twenty-five minutes later.) It looks like we have the prescription, but it isn't signed by your physician. That may be a problem.
Amy: You're kidding me. Should I call the doctor?
CURASCRIPTS: Oh no. Don't worry Maam. We will handle it from our end. You should be all set before the end of the week.
Amy: I think about asking for this guy's name, but then decide it makes no difference. Okay. Thank you very much. Please keep in mind that this prescription isn't for cosmetic purposes. If I don't take it, my health is severely compromised...(couple of fake sobs.)
CURASCRIPTS: Never you mind; we will make sure you have it. You take care now.
Friday, March 18, 4:00 PM - 2 business days prior to when I need to take the drug
No sign of the drug. First call of the day will be TUFTS! Haven't spoken to them in a while. Might be nice to catch up.
Amy: Is Michael there?
TUFTS: Hi Amy. Michael here. How's it going? The kids and the hubby doing well? You feeling good I trust?. Nice to have a little spring in the air!
Amy: (Hearing his officious, high-pitched voice, I think...shut up you idiot. You are not my friend. You are my enemy who wants me to die from some horrible infection as quickly as possible to eliminate the expensive threat to your quarterly financial reports.) Hello. Can you tell me why I have not received the next Neulasta shot that I have to take on Tuesday?
Michael: Hmmmmmmmm. Let me just review the notes. (Thirty minutes later.) (Sounding very worried.) Well... it appears that Tufts has a 14-day refill limit on this drug which does not provide Curascripts with enough time to mail it to you. Looks like we will have to implement a second, one-time override.
Amy: (Thinking, what a brilliant system with terrific, and well-named safety nets built in.) (Patience gone.)
Okay, so what you're telling me is this: Tufts has a policy to ensure the careful distribution of this very expensive drug. Its rules for filling a prescription for this drug are as follows: (1)The drug may only be provided through a mail order company. (2) The refill period for this drug may not exceed 14 days. I've got news for you, reality has rules too: (1) Sending something through the mail may require several days. (2) 14 days - several days = a number less then 14 days. While I grant that Tufts rules are very well suited to the purpose of achieving the policy objective of controlling distribution of the drug, they effectively eliminate the actual distribution of the drug which may fly in the face of your mission to keep your members healthy. Listen, (a bit louder now as the absurdity lodges itself in my mind) I don't really care what you have to do. I need the drug by Tuesday. It might also be helpful if you could tell me what I should do to get the next two refills that I will need for this drug. Or does the system rely on a week filled with hundreds of phone calls, thousands of pages of documentation and pints of tears so that I can receive the third, one-time override that will allow me to pick up the drug at my local pharmacy???!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!.
March 18:00, 6:00 PM
CVS: Your prescription is ready for pick up. (Thank God for CVS.)
March 23: (13 Days before I need the shot.)
Having had a few vacation days from my new vocation of obtaining prescription drugs, I decide I can handle another conversation with the most recently abused member of my all-star team of providers. Michael at Tufts.
Amy: Just wondering what the week holds for fighting with you guys to get my prescription that I will need following my next two infusions.
TUFTS (Michael): Oh hello, Amy. I hope you received your prescription with no trouble. (No joke. He said that.)
Amy: (suppressing the desire to guffaw and curse.) I am wondering what the status is for the next injection which I will need by April 4.
Michael: Hmmmmm. Let me check the notes. (You guessed it...35 minutes later). It looks like we just filled this prescription.
Amy (prepared for this latest display of efficiency and efficacy on the part of her insurance provider.) Yeeessss, (I say slowly, patience quota restored) I knoooow that. I am interested in FUTURE injections as opposed to the ones that are already inside of me.
Michael: Aahhh, I see. I will have to discuss this with my supervisor.
Amy: Lovely. You do that. What is your supervisor's name?
Michael: Nick
Monday, March 28 (8 days before I need the shot.)
No word from Michael or Nick at Tufts. Decide to reconnect with them.
Amy: Is Nick or Michael available?
Michael: O hello Amy (with notably less enthusiasm than in weeks past.) I bet you are calling about your Neulasta prescription.
Amy: (Amazed at this guy's ability to connect the dots.) Yes. Last I heard you were going to check with your supervisor, Nick, about getting me the prescriptions in time. I asked to speak with either you or Nick.
Michael: Yea, Nick can't really answer the phone. (!?) Now, let me review the notes...(okay, I'm done with that joke, which really isn't a joke). Well it looks like Nick is calling Curascripts and Jane (whoever that is) is working with Cecelia (whoever that is) at Curascripts , but Jane is out of the office. They are working on resetting the dispensing limit so it should work out fine this time. You should receive the prescription in the mail before the weekend.
Amy: (Having difficulty shaking images that might explain Nick's inability to answer the telephone.) When will Jane be back.
Michael: Oh, don't worry about Jane. She'll be back in plenty of time.
Amy: Great. If I don't receive anything by Friday, I will call again.
Thursday, March 31, 2:00 PM
Phone rings!
Amy: Hello
CURASCRIPTS: Hello this is Curascripts I am calling to confirm your receipt of your prescription.
Amy: I have not received my prescription.
CURACRIPTS: Well you should get it in the mail by tomorrow.
Amy: Thanks. What do I do if I don't get it?
CURASCRIPTS: Call your health insurance provider.
Thursday, March 31, 3:00 PM
Phone rings!
Amy: Hello?
TUFTS: Hi Amy this is Michael. (Triumphantly) Your prescription is ready to be picked up at the pharmacy!
Amy: WHAT?????????????!!!!!!!!!!!!!!!!!!!!!!!!!!! I just received a call from CURASCRIPTS an hour ago telling me that the prescription was in the mail and that I should receive it by tomorrow! (Suspiciouly) Did Jane ever get back?
TUFTS: (Not as long a pause as the notes should merit.) Okay. You are RIGHT! Curascripts will be mailing the prescription. Everything is fine. It will all work out. Don't worry about a thing.
Amy: Well, in truth, I am a bit worried since you seem to think I should pick up the prescription while CURASCRIPTS is telling me it is in the mail. Who do I believe?
TUFTS: I am sure that the information you have from CURASCRIPTS is correct and that I am wrong! (he says with great cheer.)
Amy: Well, that is good to know(?) Thank you.
TUFTS: My pleasure. Have a very nice day.
Saturday, April 2
The holy grail is obtained through the mail.
[If you know people at TUFTS or CURASCRIPTS, or are planning to testify before Congress in support of health care reform, please feel free to distribute copies of this post!]
The manufacturer of this precious substance is AMGEN (not feeling too affectionately towards this company either.) A very brief google search produced the following answer:
"Amgen Inc., the world’s largest biotechnology company, said fourth-quarter profit rose 9.8 percent on rising sales of its top two drugs, Neulasta and Enbrel, and lowered expenses for research and taxes. Net income rose to $1.02 billion, or $1.08 a share, from $931 million, or 92 cents a share, a year ago, the Thousand Oaks, California-based company said in a statement. Excluding certain costs, earnings of $1.17 per share beat the $1.11 average estimate of 23 analysts surveyed by Bloomberg."
So the Neulasta quest goes like this.
Monday, February 28:
Nurse: so your insurance company (TUFTS!) requires that you order your Neulasta from a mail order pharmacy called CURASCRIPTS (another bad guy in this saga). So we will send the prescription to CURASCRIPTSs and they will send it to you in time for your injection.
Amy: (still naive to the potential challenges of filling a prescription): Okay. So all I do is wait to receive the prescription.
Nurse: Right. You may receive it a couple of days before you need to take it. Keep it in the refrigerator during that time.
Amy: Right
Thursday, March 3 (5 days before I have to take the Neulasta)
Amy calls Nurse: I haven't received the drug.
Nurse: (After checking her files.) Well, we sent the prescription to them last week. I will follow up with CURASCRIPTS. Maybe you should check with your insurance company to make sure there are no issues on their end.
Amy calls TUFTS: Can you tell me the status of approval for a drug I need called Neulasta. I was supposed to receive it in the mail through CURASCRIPTS but I haven't received it yet, and I need it by Tuesday at the latest and what with the weekend coming up, I am concerned.
TUFTS: Let's see. I don't think we have received any prescription. You might want to check with your doctor.
Amy: I just got off the phone with my doctor and they told me they had sent the prescription to TUFTS and that I should call you. (The weaknesses of the American Health Care System are beginning to dawn on me.) I will tell them to send it again. Please confirm the fax number.
TUFTS: Very good. I will call CURASCRIPTS as soon as we receive the prescription. Don't you worry, Maam, we'll sort it out.
Amy: (Much relieved and feeling very grateful to this woman who, after all, had no responsibility for the problem.) Thank you so much. What is your name so that I can contact you if I have any further problems since you have been so helpful. Thank you again.
TUFTS: My name is Sue. Please feel free to call me any time.
Amy calls NP: TUFTS is telling me that they haven't received the prescription. I hate to bother you, but could you resend it to the fax number that you already sent it to?
Friday, March 4, 3:00 PM (4 days before I need the shot, 1 business day.)
No sign of a package from CURASCRIPTS. Who to call now. Lets try CURASCRIPTS.
Amy: Can you tell me the status of my prescription...
CURASCRIPTS: (After 10 minutes on hold.) Hmmmmm. I do not see any record of a pending prescription for you.
Amy: (Losing patience. I am ordinarily a very patient person.) The doctor sent the prescriptions out twice. The first time was early last week, the second time a couple of days ago. I'm not sure what else I can do. I have to have this medicine by Tuesday. It's kind of a life or death sort of situation. (By this time I felt entitled to ramp up the personal drama a notch or two. Tears would come next.) I will try calling TUFTS again.
CURASCRIPTS: Don't worry Maam. We will sort this out. Worst case, we will have to implement a one-time override that will allow you to pick up your prescription at your local pharmacy.
Amy: (Overly grateful). Thank you so much for your help. Would you mind telling me your name so I can contact you again should I run into any further problems?
CURASCRIPS: Of course, it's Chanel. Here is my extension number. Please call me anytime time. Best of luck to you.
Amy calls TUFTS: Can I speak with Sue?
TUFTS: Sue? We have no Sue at this number.
Amy: (Repeats her sad story for the 10th time to new stranger.)
TUFTS: Hmmm. Seems we have the prescription. The only problem is that there is not enough time for CURASCRIPTS to mail out the medicine so that you receive it in time to administer it. I'll call CURASCRIPTS and get back to you.
Amy: (Not as grateful. Beginning to feel more vengeful.) Great. Can you please give me your name and extension number. Are you planning to quit your job in the next week or so, or will I be able to reach you at this number. I would prefer not to have to retell this whole boring story for the 15th time to another stranger.
TUFTS: Certainly. My name is Michael. And we will fix this. Don't you worry Maam.
Friday, March 4, 4:30 PM
Amy calls CURASCRIPTS. Dials Chanel's extension.
CURASCRIPTS: Recorded message: This extension is no longer active. Please dial blah, blah, blah to speak with an operator.
Amy dials blah, blah, blah. Wades through 7 different electronic steps to reach a live operator. Tells the sad tale for the 15th time.
CURASCRIPTS: Well, it looks like we will need to implement a one-time override. Tell me the name of your pharmacy...
Friday, March 4, 6:00 PM:
Amy calls CVS. Can you tell me the status of my prescription.
CVS: What prescription. We don't have any prescription.
Amy: I give up. I suppose I would rather die of pneumonia than cancer.
CVS: Don't worry maam. We'll figure this out.
Amy: I doubt it.
Saturday, March 5, 9:00 AM (at least CVS works on the weekends.)
CVS: Your prescription is ready for pick up.
No major infections this week.
Tuesday, March 15, (8 days before I need the shot)
I thought it might help the process to initiate the dialogue earlier with the trio of brain surgeons that collectively have been so helpful in making sure I have nothing to worry about this round. Might as well stop bugging the actual physicians since to alienate them could also be life threatening. I'll start with my buddies at TUFTS who, after all promise, "No one does more to keep you healthy." If only they had a similar ambition for keeping you alive.
Amy: Is Michael there? (Hoping for a miracle)
TUFTS: Hello, this is Michael.
Amy (recovering from the shock of a logical beginning to the day's work.): Hi Michael. I haven't heard anything about my next Neulasta prescription which I need before the weekend.
Michael: Let me review the notes on this. (Twenty minutes later.) Hmmm. looks like Tufts has a 14-day limit on refills for this drug.
Amy: Well that makes sense. I only need it every 14 days.
Michael: Let me see what's going on. I will call you later.
Thursday, March17 (4 business days before I will need the next shot)
No word from Michael. Just for fun I decide to call CURASCRIPTS To learn what they have to contribute to this comedy.
Amy: Can you tell me the status of my prescription?
CURASCRIPTS: We just filled that prescription.
Amy: I know. I am calling about the next one. The one that should already be in the mail so that I have it by next Monday.
CURASCRIPTS: Hmmmmmm. Let me review the records. (Twenty-five minutes later.) It looks like we have the prescription, but it isn't signed by your physician. That may be a problem.
Amy: You're kidding me. Should I call the doctor?
CURASCRIPTS: Oh no. Don't worry Maam. We will handle it from our end. You should be all set before the end of the week.
Amy: I think about asking for this guy's name, but then decide it makes no difference. Okay. Thank you very much. Please keep in mind that this prescription isn't for cosmetic purposes. If I don't take it, my health is severely compromised...(couple of fake sobs.)
CURASCRIPTS: Never you mind; we will make sure you have it. You take care now.
Friday, March 18, 4:00 PM - 2 business days prior to when I need to take the drug
No sign of the drug. First call of the day will be TUFTS! Haven't spoken to them in a while. Might be nice to catch up.
Amy: Is Michael there?
TUFTS: Hi Amy. Michael here. How's it going? The kids and the hubby doing well? You feeling good I trust?. Nice to have a little spring in the air!
Amy: (Hearing his officious, high-pitched voice, I think...shut up you idiot. You are not my friend. You are my enemy who wants me to die from some horrible infection as quickly as possible to eliminate the expensive threat to your quarterly financial reports.) Hello. Can you tell me why I have not received the next Neulasta shot that I have to take on Tuesday?
Michael: Hmmmmmmmm. Let me just review the notes. (Thirty minutes later.) (Sounding very worried.) Well... it appears that Tufts has a 14-day refill limit on this drug which does not provide Curascripts with enough time to mail it to you. Looks like we will have to implement a second, one-time override.
Amy: (Thinking, what a brilliant system with terrific, and well-named safety nets built in.) (Patience gone.)
Okay, so what you're telling me is this: Tufts has a policy to ensure the careful distribution of this very expensive drug. Its rules for filling a prescription for this drug are as follows: (1)The drug may only be provided through a mail order company. (2) The refill period for this drug may not exceed 14 days. I've got news for you, reality has rules too: (1) Sending something through the mail may require several days. (2) 14 days - several days = a number less then 14 days. While I grant that Tufts rules are very well suited to the purpose of achieving the policy objective of controlling distribution of the drug, they effectively eliminate the actual distribution of the drug which may fly in the face of your mission to keep your members healthy. Listen, (a bit louder now as the absurdity lodges itself in my mind) I don't really care what you have to do. I need the drug by Tuesday. It might also be helpful if you could tell me what I should do to get the next two refills that I will need for this drug. Or does the system rely on a week filled with hundreds of phone calls, thousands of pages of documentation and pints of tears so that I can receive the third, one-time override that will allow me to pick up the drug at my local pharmacy???!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!.
March 18:00, 6:00 PM
CVS: Your prescription is ready for pick up. (Thank God for CVS.)
March 23: (13 Days before I need the shot.)
Having had a few vacation days from my new vocation of obtaining prescription drugs, I decide I can handle another conversation with the most recently abused member of my all-star team of providers. Michael at Tufts.
Amy: Just wondering what the week holds for fighting with you guys to get my prescription that I will need following my next two infusions.
TUFTS (Michael): Oh hello, Amy. I hope you received your prescription with no trouble. (No joke. He said that.)
Amy: (suppressing the desire to guffaw and curse.) I am wondering what the status is for the next injection which I will need by April 4.
Michael: Hmmmmm. Let me check the notes. (You guessed it...35 minutes later). It looks like we just filled this prescription.
Amy (prepared for this latest display of efficiency and efficacy on the part of her insurance provider.) Yeeessss, (I say slowly, patience quota restored) I knoooow that. I am interested in FUTURE injections as opposed to the ones that are already inside of me.
Michael: Aahhh, I see. I will have to discuss this with my supervisor.
Amy: Lovely. You do that. What is your supervisor's name?
Michael: Nick
Monday, March 28 (8 days before I need the shot.)
No word from Michael or Nick at Tufts. Decide to reconnect with them.
Amy: Is Nick or Michael available?
Michael: O hello Amy (with notably less enthusiasm than in weeks past.) I bet you are calling about your Neulasta prescription.
Amy: (Amazed at this guy's ability to connect the dots.) Yes. Last I heard you were going to check with your supervisor, Nick, about getting me the prescriptions in time. I asked to speak with either you or Nick.
Michael: Yea, Nick can't really answer the phone. (!?) Now, let me review the notes...(okay, I'm done with that joke, which really isn't a joke). Well it looks like Nick is calling Curascripts and Jane (whoever that is) is working with Cecelia (whoever that is) at Curascripts , but Jane is out of the office. They are working on resetting the dispensing limit so it should work out fine this time. You should receive the prescription in the mail before the weekend.
Amy: (Having difficulty shaking images that might explain Nick's inability to answer the telephone.) When will Jane be back.
Michael: Oh, don't worry about Jane. She'll be back in plenty of time.
Amy: Great. If I don't receive anything by Friday, I will call again.
Thursday, March 31, 2:00 PM
Phone rings!
Amy: Hello
CURASCRIPTS: Hello this is Curascripts I am calling to confirm your receipt of your prescription.
Amy: I have not received my prescription.
CURACRIPTS: Well you should get it in the mail by tomorrow.
Amy: Thanks. What do I do if I don't get it?
CURASCRIPTS: Call your health insurance provider.
Thursday, March 31, 3:00 PM
Phone rings!
Amy: Hello?
TUFTS: Hi Amy this is Michael. (Triumphantly) Your prescription is ready to be picked up at the pharmacy!
Amy: WHAT?????????????!!!!!!!!!!!!!!!!!!!!!!!!!!! I just received a call from CURASCRIPTS an hour ago telling me that the prescription was in the mail and that I should receive it by tomorrow! (Suspiciouly) Did Jane ever get back?
TUFTS: (Not as long a pause as the notes should merit.) Okay. You are RIGHT! Curascripts will be mailing the prescription. Everything is fine. It will all work out. Don't worry about a thing.
Amy: Well, in truth, I am a bit worried since you seem to think I should pick up the prescription while CURASCRIPTS is telling me it is in the mail. Who do I believe?
TUFTS: I am sure that the information you have from CURASCRIPTS is correct and that I am wrong! (he says with great cheer.)
Amy: Well, that is good to know(?) Thank you.
TUFTS: My pleasure. Have a very nice day.
Saturday, April 2
The holy grail is obtained through the mail.
[If you know people at TUFTS or CURASCRIPTS, or are planning to testify before Congress in support of health care reform, please feel free to distribute copies of this post!]
Friday, April 1, 2011
Physical Therapy and Pregnancy Possibilites
So sorry Bloggees,
Two posts about the hair thing was overkill. They were a downer. I apologize for having dwelled on it. Happily for all of us, I am over it. Feeling good, getting lots of exercise, socializing, I am WOMAN, more or less.
So yesterday I started physical therapy. The goal here is to increase the range of motion in my arms so that I can more easily reach the food and bowls that sit on the top shelf in the kitchen. I like physical therapy. I've never done it before. I think of PT as something athletes need to heal from injuries earned performing dazzling and hazardous feats of physical prowess. I know some athletes. I ain't no athlete.
Anyway, I like the physcial therapists. I like the office. I like doing something active that makes me feel better. I especially like the process of measuring the progress. It's like getting graded. (I was always a decent student.) They measure my range of motion with strange looking tools and mysterious machines into which you insert body parts. When I first saw one of the machines, I confess that I freaked out. It looked way too much like a mammography machine. If those physical therapists were thinking they were going to stuff my scarred up, tissueless, scrawny chest into a mammography machine, then they were in for an ugly surprise - an hysterical, 50ish, bald, bosomless woman throwing a messy fit. Christ, that was the whole point of the bilateral mastectomy - that I would never again have to stuff my bosoms into machines that must have been designed by male sadists. Fortunately, the machine required no physical contact to register the measurements. I am getting very respectable grades.
As it turned out, the only negative part of the first appointment was that the physical therapist, when examining me, asked if my distended stomach was normal or the result of chemotherapy. I had to explain that the distended stomach was the direct result of the large quantity of food that it contained. That was an embarrassing moment. I think of myself as a petite person, of normal weight, low BMI, not horribly flabby. But, I love to eat. I know, everyone loves to eat. But I love it more than most people. This is the truth. I love every bite of every thing I put in my mouth. People always tell me, "you look like you are really enjoying that food." (Not the most flattering of remarks.) And, I have a huge appetite; way out of proportion to what is necessary to keep a person of my size alive. I could eat a pound of pasta, a loaf of bread, a head of broccoli, and a pint of ice cream every single day. This is not an exaggeration.
[I just had the most amazing thought! Maybe I am actually pregnant! That would explain everything! The nausea, the chest tingles, the food cravings, the fat belly. Stranger things have happened. Right after this, I'm going straight to CVS to buy one of those adorable, little pregnancy test kits. I love those things. You spend a few dollars to buy this funny contraption that if you pee all over it, could completely change your life. I can't believe that this possibility did not occur to my oncologist. I swear, doctors can be so careless. I'll keep you posted on the pregnancy thing.]
So, (assuming the above theory is disproved) it is time to go on a diet. Dieting in the midst of chemotherapy? That seems a little harsh. Especially since the best medicine for curing the queasiness is eating. But I have to trim the tummy for PT. I cannot be humiliated like that again. Now that I think of it, my new diet might be more effective if I were not able to reach those food items and bowls on the top shelves. So much for physical therapy.
Two posts about the hair thing was overkill. They were a downer. I apologize for having dwelled on it. Happily for all of us, I am over it. Feeling good, getting lots of exercise, socializing, I am WOMAN, more or less.
So yesterday I started physical therapy. The goal here is to increase the range of motion in my arms so that I can more easily reach the food and bowls that sit on the top shelf in the kitchen. I like physical therapy. I've never done it before. I think of PT as something athletes need to heal from injuries earned performing dazzling and hazardous feats of physical prowess. I know some athletes. I ain't no athlete.
Anyway, I like the physcial therapists. I like the office. I like doing something active that makes me feel better. I especially like the process of measuring the progress. It's like getting graded. (I was always a decent student.) They measure my range of motion with strange looking tools and mysterious machines into which you insert body parts. When I first saw one of the machines, I confess that I freaked out. It looked way too much like a mammography machine. If those physical therapists were thinking they were going to stuff my scarred up, tissueless, scrawny chest into a mammography machine, then they were in for an ugly surprise - an hysterical, 50ish, bald, bosomless woman throwing a messy fit. Christ, that was the whole point of the bilateral mastectomy - that I would never again have to stuff my bosoms into machines that must have been designed by male sadists. Fortunately, the machine required no physical contact to register the measurements. I am getting very respectable grades.
As it turned out, the only negative part of the first appointment was that the physical therapist, when examining me, asked if my distended stomach was normal or the result of chemotherapy. I had to explain that the distended stomach was the direct result of the large quantity of food that it contained. That was an embarrassing moment. I think of myself as a petite person, of normal weight, low BMI, not horribly flabby. But, I love to eat. I know, everyone loves to eat. But I love it more than most people. This is the truth. I love every bite of every thing I put in my mouth. People always tell me, "you look like you are really enjoying that food." (Not the most flattering of remarks.) And, I have a huge appetite; way out of proportion to what is necessary to keep a person of my size alive. I could eat a pound of pasta, a loaf of bread, a head of broccoli, and a pint of ice cream every single day. This is not an exaggeration.
[I just had the most amazing thought! Maybe I am actually pregnant! That would explain everything! The nausea, the chest tingles, the food cravings, the fat belly. Stranger things have happened. Right after this, I'm going straight to CVS to buy one of those adorable, little pregnancy test kits. I love those things. You spend a few dollars to buy this funny contraption that if you pee all over it, could completely change your life. I can't believe that this possibility did not occur to my oncologist. I swear, doctors can be so careless. I'll keep you posted on the pregnancy thing.]
So, (assuming the above theory is disproved) it is time to go on a diet. Dieting in the midst of chemotherapy? That seems a little harsh. Especially since the best medicine for curing the queasiness is eating. But I have to trim the tummy for PT. I cannot be humiliated like that again. Now that I think of it, my new diet might be more effective if I were not able to reach those food items and bowls on the top shelves. So much for physical therapy.
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