Poll Results and Mental Health Update

So I am sure you are all dying to know the results of the poll. Eleven of you voted and the vote was unanimous that the Tufts response was unsatisfactory. You win. I will tell Tufts that I am not satisfied with their proposed "solution" to my complaint in a letter that I have copied below. I give Tufts further credit in the meantime for posting a comment in response to my post entitled, "A Lesson in Health Insurance." Now, that's astute social networking.

All continues to go smoothly with my treatment. The side effects of the chemo are tolerable, although becoming tiresome. I have four more infusions of the current cocktail and then a break before radiation starts. Did I tell you that during that break I am traveling with my family on a National Geographic Expedition to the Galapogos? We are celebrating the end of chemo, my mother's birthday and a 25th wedding anniversary. We're in a kind of carpe diem phase lately.

As the end of treatment approaches I feel increasing trepidation about my future health. My primary care provider has been haranguing me about the blood pressure readings I am getting before each infusion. She knows about these readings by tracking them through her secret, back door access to my cancer medical records. I think she's jealous about all the cancer drama and wants a piece of the action. As long as I can remember, or at least since the days I thought I had AIDS, my blood pressure is elevated at the doctor's office. "White coat hypertension" they call it. Wouldn't I be dead by now if I really had a serious, 30-year-old, untreated problem with my blood pressure?

Many times I have been instructed to take my blood pressure at home to prove that it is lower there than in the medical office, and year after year the readings prove the point. But my PCP doesn't seem convinced or she's concerned about a negligence lawsuit. The oncology nurse practitioner told me recently that she once participated in a workshop during which the facilitator instructed the attendees to be guided every day of  their practice by imagining what the patient might say in the witness box should she file a medical malpractice complaint. So much for medicine as art.

So the PCP called the oncologist and told the oncologist to tell me to set up an appointment with her to discuss my blood pressure readings. (She must have thought that the oncologist would have more sway with me than she would. Kind of like 7th grade romancing - Jenny, you tell Joey to tell Harry that Penelope likes you...) Meanwhile, the oncologist says, "I never pay any attention to the blood pressure readings that are collected in this office. You'd have to be dead not to have elevated blood pressure while receiving cancer treatments."

So all of this serves to remind me that once this breast cancer stuff is done, it's not like I can pretend I am healthy and happy and never have to worry about illness again. First, there is the 10% chance of recurrence. Second, my risks for getting other diseases is probably elevated. Third, I could get a whole new cancer and have to go through all this again, and worse. (Lately I've been focusing on melanoma and colon cancer.) I met a lady recently who while recovering from breast cancer treatment learned that she had colon cancer. This is why carpe diem works for me. I feel pretty good and pretty safe today. Time to go for a walk in the rain.

Have a happy week, everyone. xoxoxox
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Response to Tufts

Dear Ms. Jacobson,

Thank you for your letter dated May 19. I have considered your response and the proposed "resolution" of my complaint and have decided that it is not satisfactory, in part because I do not understand what the resolution is. Although you acknowledge that Tufts personnel did not follow proper procedures, you do not offer any suggestions for how to ensure that future patients do not suffer similar problems filling their prescriptions. You merely state that  "Your concerns have been documented and are now on file with Tufts Health Plan."   I do not see how this action resolves my complaint.

You discuss how personnel receive regular training on customer service but customer service wasn't really the issue. The issue was a conflict between two policies: one which required that the drug be provided through a mail order system and one that restricted dispensing of the drug to once every 14 days. My physician instructed me to take the drug every fourteen days following each chemotherapy appointment. The Tufts policy prohibited CuraScript from sending out the drug earlier than the 14^th day of the cycle thereby making it impossible for me to receive the drug in time to take it as prescribed. As a consequence of these conflicting policies, I was obliged to spend hours making phone calls to Tufts and CuraScript to obtain a waiver of the policy that would allow me to pick up the medicine at my local pharmacy. Moreover, Tufts and CuraScript personnel were obliged to deal with an anxious and increasingly frustrated patient for many hours that could have been spent more productively. In other words the conflicting policies result in more waste, increased overhead and lost productivity. It seems to me that the only appropriate "resolution" would be to change the policies to either extend the dispensing period to accommodate mailing time or to do away with the mail order requirement.

You also mention that CuraScript sent the prescription for four doses of Neulasta to CVS and "as such, CuraScript no longer held a valid prescription on file to accommodate future fills." This process is almost impossible to imagine in an era when most correspondence is conducted electronically ensuring that a "copy" of the prescription would still be available to CuraScript. If CuraScript actually conducts business in the manner you describe such that it does not retain copies of the prescriptions it sends to the pharmacy, I think another possible "resolution" to my complaint would be for Tufts to cancel its contract with CuraScript.

My chief objective is to prevent future incidents of this kind. Filing this paperwork will not achieve that result.

Thank you again for your efforts to seriously consider the issues I have raised.

Sincerely,

Prescription Perspectives

So. Big news.  Some of you might remember the blog post about the insurance nightmare of getting the drug Neulasta. Well, I sent copies of that post to the CEOs of Tufts Health Plan, CuraScript and Amgen. I recently received a four-page response from Tufts. The letter said stuff like:

•  "In order to address your concerns, we aligned your narrative with the documentation and records available from Tufts Health Plan, CuraScript and CVS..." (I guess these guys don't adhere to the view that the customer is always right. That must have something to do with ObamaCare.)
•  "A careful analysis of where the narratives blend and diverge provides us with an opportunity to thoughtfully acknowledge and appreciate your frustration." (I'm pretty sure it's just the "diverging" that provides this opportunity.)
• "In addition, our assessment illuminates the lattice of roles, responsibilities, and regulations inherent in the arrangement for and the delivery of healthcare." (Perhaps this illumination exercise might have been more beneficial had it been conducted prior to going into the mail-order drug business.)
• "The discrepancies among the narratives and in the results are indicative of an unfortunate misalignment of perspectives and responsibilities." (They got that right. My perspective was, I should take the medicine that the doctor prescribes. Theirs was, make her beg for it.)
• "...the manager evaluated the coordinator's focus to address your immediate needs..." (I wonder how this worked. Did the coordinator have to undergo an eye exam? I'm not sure the coordinator's "focus" was really relevant to the problem, but perhaps my confusion on this point has something to do with "misaligned perspectives.")

But, you've got to give them credit. It's not as if I received a word from any of the other companies...

So the letter attempted to explain the "misalignment" of how the process for filling the prescription should have occurred, and Tufts' "perspective" on how it did occur. The letter began its review of the prescription filling events on the day that I received my first dose. I guess they did not feel that the insane number of telephone calls that were necessary to convince them to supply the first dose were strictly on point. The letter did acknowledge, however, that my "telephone conversations with Member Specialists Michael (remember poor Michael?) and Nick (the supervisor with whom I never spoke because he was "not able to answer phone calls"(?)), are not available at this time to review and assess their content, tone, and sense of urgency..."  (Seems like their telephone logging system has a few glitches. Anyway, you'd think I had given them enough information about the "sense of urgency").

The true revelation of the letter was this amazing tidbit: "...however, what was missing was the recognition that the entire prescription for a total of four dosages was transferred to CVS and as such, CuraScript no longer held a valid prescription on file to accommodate future fills."

Ok. Let's consider that statement for a minute. Apparently, despite the astronomical sums they charge for drugs, and the existence of such cutting edge tools as computers, fax machines, the internet, and photocopy machines, once it sent the prescription to CVS, CuraScript no longer had a copy of it???!!!!  I mean seriously. CuraScripts receives a prescription from my doctor (which I imagine arrives as a fax, email, tweet...something other than in the form of a Hallmark card, which, admittedly, might be awkward to forward electronically) and then what do they do with it?  Do these people mean to tell me that they received a hard copy of the prescription, put it in an envelope, (forgetting to make a photocopy of it), addressed the envelope with a fountain pen, licked and sealed the envelope, stuck a stamp on it and dropped it in the nearest mailbox? Because that would be the only way that they would no longer have a copy of the prescription. Call me a cynic, but I ain't buying it.

And then there was this line, so filled with pathos and regret: "What should have been a seamless and contiguous process carried out according to protocol based on thoughtful and prudent planning, delegation of responsibilities, and integration of human and technical accountability--was not." While I appreciate this lofty aspiration, I don't think it is absolutely necessary for the Tufts HMO staff to figure out how to integrate "human and technical accountability." All they need to do is add two sentences to their procedures manual: "When you receive a prescription for multiple doses of a medicine that should not be dispensed all at once, be sure to keep a copy of it on file before sending the original to the drug store. Please note: Your job is to ensure that the patient receives the medicine by the time he or she is required to take it."

The letter concludes "Your concerns have been documented and are now on file with Tufts Health Plan. If you are not satisfied with this resolution, you have the right to request a reconsideration from Tufts Health Plan..."

I'm not convinced that the filing of the documentation will ensure that this "misalignment of perspectives" won't occur again, but I may have lost interest in further communication with these people. I am interested, however, to learn your thoughts. Check out the little poll at the top right-hand of this screen and let me know if you are "satisfied with this resolution." Together we will reform health insurance policy, assuming we can align our perspectives.

When the Oncologist Leaves a Message

The other day I noticed I had missed a call on my Blackberry. The missed call came up on the screen as "Private Number." I knew what that meant. A doctor. Doctors are reluctant to give their patients a heads up on who's calling them. Moreover, they would never want a patient to know the actual telephone number where they could be reached without going through several layers of telephone call fielders. Can you imagine making a phone call that is answered by your doctor? It doesn't happen. I think it is an image thing. Doctors need to project an image of inaccessible, highly prized dispenser of life saving wisdom. Such beings should not waste their time answering phone calls from lowly patients.

I checked my messages and heard the following:  "Hi Amy. I was calling to ask a quick question. Well, 'favor.' Please call me back at your convenience." It was my oncologist. The message made my heart race slightly, but I calmed myself with the comforting thought that I was not awaiting test results or any other information that could turn out to be bad news concerning new threats to my life. But I was very curious. What kind of a favor could I do for my oncologist? I immediately called the office number he gave me. I got the outside-office-hours recording at 4:30 in the afternoon when it shouldn't have come on until 5:00. (The medical staff skipping out early? Now that is scary.) I left a detailed message that was intended to convey my fervent wish to hear back from the doctor promptly.

No call back that evening.

By the next morning, curiosity had morphed into high anxiety. Perhaps the doctor had spent some time analyzing my latest blood counts (after all, what do doctors do when they are not meeting with patients or playing golf?), and discovered new problems. I called the doctor's office as soon as I sat down at my desk. I told the operator that I hoped to hear from the doctor directly since he had left a message for me and I was eager to know what it concerned given that I was a cancer patient. (Once again, I found it helpful to play the BC card.) "Oh sure, sure!" she answered empathically.

I then began a day of watching the clock and reviewing all of the possible interpretations of the cryptic message. A "favor." I suppose if he was calling to tell me that my blood counts indicated extreme anemia or immunity system failure, it would be a "favor" to him if I were to do something about it. A dead patient, after all, could have a negative impact on his reputation. On the other hand, if my blood counts indicated that the cancer had spread to my liver, the "favor" could be to consider discontinuing treatment so as to save precious resources for patients who might benefit from them. A more optimistic interpretation I considered briefly was that he wanted me to speak to one of his other patients because I was a model cancer patient who could offer invaluable advice and encouragement to less experienced, more frightened cancer patients. I dismissed that possibility at about the time I chewed off my last fingernail. I considered the possibility that he simply wanted to change an appointment time. That one too I had to dismiss since it was unlikely the famous doctor would waste his time making such a call. Perhaps he heard that I was planning more exotic travel this summer and he wanted me to do him the "favor" of not going. I killed three hours this way. I made sure not to use my cell phone for outgoing calls.

I decided I needed a change of scenery. I connected my cell phone to my clothes and went outside to do some yard chores.I jumped with every beep my phone made, and each time the phone would fall in the dirt. At this rate I would break the stinkin' phone and never find out why the doctor called...until it was too late. I drove around in the car to do made up errands. I continued to watch the time. I considered the possible times when a busy doctor might be free to place a call to one of his patients. During his lunch break? After normal business hours? At the approximate time of the message that he left me the day before?

No call. After 8:00 PM, I relaxed. He wasn't going to call that late. I needn't worry about receiving bad news that day. I slept soundly that night, the anxiety having wiped me out.

The next morning I prepared to wait again to hear the "favor". I tried hard not to spend more time analyzing the message. This was difficult when every half hour my husband would inquire whether I had heard from the doctor. His curiosity was morphing into anger and frustration, which did nothing to reduce my anxiety.

At 2:00 pm I decided I had to call the vet to ask a question about some medication my dog is taking. (It's comforting to have another family member dealing with medical issues even if she is about 105 years old in people years.) I had to make the phone call from my Blackberry because that was where I could most easily access the number. I said to myself, "this is the exact moment he will try to call." I placed the call. Veterinarians are not so different from oncologists. You don't just dial numbers and talk to them. No sooner had I connected with the not-so-easy-to-reach vet, that I heard the beep that indicated I had another call on the line. I immediately hung up on the vet to connect with the incoming call. Sure enough, it was the doctor on the other line. Why do things like that happen?

He said "Hi Amy. I wanted to ask you whether it would be alright to give your name to a colleague of mine who is writing an article about breast cancer screening..."  Feelings of well-being and relief swept through me. I told the doctor I would be delighted to participate. I also told the doctor that receiving a cryptic message from one's oncologist can be anxiety provoking for a cancer patient, and could he in future messages, leave more information about why he is calling so I don't have to go through two days of excruciating anxiety. I didn't get the sense he really absorbed my meaning.

I hurried outside to find my husband to tell him the good news. I suddenly felt the gorgeous warmth of the summer day, smelled the delicious floral scents of the yard, delighted in the green of the lawn and the new leaves on the trees. Everything was perfect and beautiful again. Except, I still have cancer.

That telephone message seemed to trigger all of the anxiety I used to feel during my pre-cancer diagnosis days when I anxiously awaited screening results. Ironically, I haven't felt that level of anxiety since I finally received my cancer diagnosis.

This feeling of waiting for scary news reminds me of a recurring dream I used to have when I was little. I was alone in my house when I suddenly realized that there were bad guys on my roof waiting to pounce on anyone who tried to escape. I had to decide whether to hide inside the house or make a break for my neighbors' house. My instinct was always that it would be better to confront the bad guys in open space than wait for them to find my hiding place inside the house. So I'd pick my exit and run like hell towards the neighbors. Sometimes the bad guys would catch me. I would quickly transform from frightened escapee to charming new collaborator. The idea was to get them to like me so much that they change their minds about hurting me.

I think the analogy here is that I have made the break from the house, have been caught by the cancer villain and am now working on charming  him so that he will change his mind about killing me. (And if that works, I'll have to try it on the vet.)

Down on the Farm

Dear Bloggees,

I am delighted to report that spring has sprung in our yard, in spite of cancer.

The top photo shows off a couple of our apple trees in full bloom. They are absolutely ostentatious this year. We are lucky to have a lot of fragrant and lush spring blossoms in our yard at this time of year including, apple, cherry, lilac, viburnum, and lily of the valley. You walk outside and nearly swoon with the intoxicating mix of fragrances in the air. Unfortunately, it has been so cold and wet, I have not been much inclined to go outside.

http://www.youtube.com/watch?v=hGi55XgJ0xA&feature=related

The second photo is of our newest family members, the chicks. We (my husband mostly) are getting into the chick-raising, egg-laying business. These little birds are pretty cute. My husband had the idea to name them after flowers like petunia, marigold, rose, lily, etc,. but they are not easily distinguishable from one another, so what's the point. I just call them all Chickee. Frustratingly, I am not supposed to handle them too much as one of those people with compromised immune systems.

At the moment the chicks are living in an old grocery storage box that we keep in the barn. Each day I dare to stick my hand in the box and pet them a little. They are funny little creatures. They like to peck at spots of any kind whether the spots are bits of feed, insects or freckles on a hand. They also like to slide around on the thermometer. The funniest thing about them is that their little, bitty cheeps do not seem to come from their mouths. You hear the tiny noises get louder as you enter their world, but they seem to be coming from elsewhere in the barn. Teensy chicken ventriloquists.

In a few weeks after their chick fuzz has turned to feathers, we will move them to our chicken coop. We have been using this sturdy little building as a garden shed until now. For years the little shed has been tempting us to convert it to its original use, so here we go.

All continues to go well with me. I am pretty much on medical autopilot and don't have much news to report. Weekly chemo, weekly physical therapy, continued flow of family and friends wishing me well. My medical appointments provide the only structure to my weeks. In between, I do errands, house chores, gardening, a little bit of work, and research on how to enhance my blog. I feel good.

Both kids are home from school at the moment. That adds to the chores, mostly those associated with  cleaning. I can't figure out the parenting trick that will result in their cleaning up after themselves. I often try to remember how it was that my own parents were so successful in getting me to make my bed every morning, clean the kitchen, do the laundry... I can't remember. The sad truth is that I am pretty much done parenting and it is probably too late to make my kids better people than they are. I suppose I could always pull the BC card..."Listen kids, I am very tired and weak and feeble. You must clean up after yourselves because I need to preserve my energy to survive another day." But that seems a bit thick.

Happy spring, everyone.

Not Being Busy

Have you ever heard the expression, "You want to get something done, give it to a busy person"? My father used to say that. It pissed me off when he did because in it was the jab that he hadn't given the thing to me...I was not busy enough. Not that I wanted to do it, whatever it was. I just wanted him to think I could. I remember him describing a person he admired..."That boy can juggle more balls than anyone I know."  (Jab, jab, you can't juggle at all...) So once again I have revealed another unattractive scar left by the chip whittled off my shoulder by a hypercritical and occasionally mean father. He died in 1997, and oddly enough I frequently miss him.

The point of this is that I have never been more unproductive in my life. Now that I am not working I fill my day doing all of the things I used to do before and after work: laundry, grocery shopping, tidying, bills, making doctors' appointments, parenting, exercising, personal email, facebook stalking...I feel like a slug. I wonder if my father would cut me any slack when he considered how much time and energy chemo and physical therapy consumed. Probably not. He would notice that the 55 hours I used to spend working and commuting in a week were not entirely filled by those things, and he would ask why I was wasting away the little bit of life I had left. (Well, maybe he wouldn't have been that mean.)

So I have had two treatments of the new chemotherapy regime (Taxol and Herceptin). As promised, it is easier. No queasiness. I have a few other minor symptoms including a constantly runny (and by runny, I don't mean drippy, I mean marathon runny) nose, continued baldness and achy fingers that are losing strength and dexterity, serving as an excellent, additional excuse for less juggling.

Mothers' Day

My first mothers' day without bosoms. I guess that's not much of a milestone. Mothers' day without a mom would be sadder. I still have one of those. She is a freak of nature. I won't talk about her age because that would be rude. (She was very diligent about teaching her children good manners. It took better with some of us than others.) So, I am 53 years old, she had children on the late side, had four of them scattered over 13 years. I am the third. You do the math.

My mother hasn't spent a night in a hospital since her last daughter was born. (I won't tell you how old she is either because she feels as strongly about good manners as my mother does - but she was born a couple of years after I was so you know what to do...a long freakin' time ago.)

My mom is not interested in illness. She doesn't want to talk to doctors or anyone else about it. Maybe that is what she's doing right. Instead of spending time in doctors' offices, she writes books. She is eager to put on a pair of skis, get on a chair lift and slide down a hill. She swims or walks every day. She plays a mean game of bridge. She socializes with her buddies 2 or 3 times a week. She travels at least monthly to visit daughters. She drinks a Manhattan every night. She lives alone in the house I grew up in. I like to think my mom's good life bodes well for my sisters and me.

Thanks to my mom. my husband's mom, and to all your moms for the good lives they gave us.

Tipperary, County Cork, County Kerry...Too-ra-loo-ra-loo-ral

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.