Post Chemo Milestones

I have reached a new milestone in my post-chemo recovery. I am back to running 3+ miles most mornings. I have been a "runner" since I was a sophomore in college (a very, very long time ago.) I use quotation marks for this word, "runner," since by an actual runner's standards, I am a walker. Before my diagnosis, I was "running" about 10 minute miles. I am now "running" something close to 12 minute miles. If you were driving by and saw me from the rear, you would see a short, lumpy woman shuffling like a duck in a hurry, while shifting the weight of her upper body in a sort of regular rhythm, thereby creating the illusion of a forward momentum that is faster than a walk, but it isn't.

My route includes one very long, very steep hill. Yesterday was the first day that I completed the "run," including the hill, without slowing to a walk (which might be closer to a crawl?) This feels like progress to me.  Another step back to my old self.

In other news, I shaved my legs! Yes, my friends, chemotherapy is like Nair for the whole body. But it's marching back in force. Even my head has a bit of fur on it.

Almost time to ditch the bandannas, hats, and wigs (which I never wore)...I can hardly wait.

Rare and precious animals

So one reason that I have not been posting lately is that I've been struggling with computer challenges, and before that I had the privilege to be traveling. I want to share a little of our adventures with you.

In July we we went to the Galapagos. Not surprisingly, it was a unique and wonderful experience. As advertised, what makes the Galapagos truly amazing is the fearlessness of the animals.

For example, you can lie on the beach and cuddle up to a sea lion...

You can just about trip over a 150 year old, 1000 pound tortoise.

You can peer at the underside of an albatross and see its newborn.

You can hang out with the Christmas Iguanas...

You can eat lunch with sea lions and pelicans...

Please sir, may I have some more?

As a breast cancer patient you can amuse yourself with silly jokes about the blue-footed boobies.

Or the red-footed ones...

Or the multi-colored ones...

Or even the barefooted ones....

You can coo at a fluffy, baby albatross...

Or take pride in completing a steep hike with your mom...

You can admire the scenery and figure out better ways of disguising your baldness.

You can wonder at the unfathomable depths of the Pacific ocean and worry about how you might rescue your mother should she fall in it and get caught under a diving porpoise and a zodiac motor.

You can boast to your friends about having snorkeled with penguins...if you did...

And occasionally, if you are really lucky, and quiet and savy about approaching the rarest and wildest of the earth's creatures, you can experience exceptional joy and beauty.

Making it Look Easy

Man! It's been a month since my last post. I have lost all ability to manage my time. It's been a busy month, however, so I hope you'll cut me a little slack. Here is the first in a series of updates. This entry was started about three weeks ago.

On July 20 I had my last, regular chemo infusion. I will continue to receive an infusion of a single "maintenance" drug, they call it, that has no obvious side effects (other than heart failure), every three weeks for another 8 months or so. So we are now on official hair re-growth watch. It will be several weeks before I start to see or feel any improvements. I am looking forward to touching things without feeling an irritating and chafing tingle that sends bristly shivers up my spine. I look forward to losing the yellow color and fungal appearance of my fingers and toes. I imagine having a reduced appetite and increased metabolism off steroids. Oh...and I'm hoping for a cure for my cancer.

My doctors like to tell me that I'm making BC treatment look easy. This comment makes me glow with pride, as if I had done something really remarkable and accomplished. It also makes me feel that every complaint I might feel like expressing would contribute to a lower grade on my cancer report card so I stifle them. This stoicism has its pros and cons. On the pro side, my doctors, my family and my friends tell each other in my hearing how well I am doing, which, of course, makes me feel very well. On the con side, my kids don't clean the dishes.

The logic here is that if I were to act sicker, maybe my kids would do more chores around the house, or treat me with sympathy and kindness.

As it is, my son makes fun of me just like he always has, especially when I try to grab a piece of him for a snuggle.  He says things like, "stay away from me you freak," "you look like a mental patient," "you're ugly and you disgust me." Now I know that some of you are appalled by such rudeness and disrespect, but for some reason I find this outrageous rudeness funny. So I laugh and that encourages him to further abuse. But now and then I think I should take some offense as an overweight, bald and bosomless woman about being called ugly and disgusting. I should defend bald, bosomless women the world over against prejudicial outbursts such as these.

My daughter ignores me as usual and continues to have no inhibition about letting me know how idiotic and useless I am as a parent and adviser.

Sometimes I worry that I should be reprimanding my children for their disrespect, and that I should be teaching them humility and empathy. But then I think there is very little I can do anymore to shape the behavior and values of my 19 and 20 year old children, so I sigh, and then one or the other will ask with alarm,  "what's wrong? "do you feel okay?" Best to be jocular and make it look easy.

Summer Celebrations and My remains

Dear Bloggees,

It's been a while since I wrote a letter to you, which was the original idea for this blog, you might recall. We had a very fun July 4th weekend in Maine with my family. Eighteen of us jammed in my mom's, not very large, summer home on an island off the mid-coast of Maine. Utter chaos. The group includes many growing boys and an average size refrigerator. Grocery shopping, cooking, kitchen cleaning, trash removal and dealing with the plumbing take up the greater portion of our "vacation" time as a family.

The sleeping arrangements usually offer opportunities for adventure and diplomacy. The results this year were that two of the party slept in a tent and two or three in boats. The husband and I scored a bedroom. Yet another perk of BC.

It's a beautiful place. The house sits on a hill overlooking Penobscot bay. The yard is fringed with lilies, rosa rugosa, raspberry bushes and wild phlox. The husband and I like to pull our Adirondack chairs to the far edge of the lawn and watch the field mice and sparrows darting about. Sometimes we read there. But since there is usually a fierce game of badminton or an aggressive gossip session going on behind us, it's hard to get too immersed in nature or literature.

We've gathered at this place annually for many years. There is always some family friction to deal with and a lot of frustration in trying to do the stuff you have imagined you were going to do before you got there. But we manage to produce precious memories most of the time, so we always return. This year the memories included the combination of inept badminton played by the adorable 14-year old girls alongside the practically professional badminton played by teenage and 20-something boys; a lobster feast and silly, poetic tributes to my mom whose birthday we were celebrating; a bike ride that included a tire blow out so became a bike walk; a dance party that featured the husband's "gator" and the exotic, athletic moves of the daughter; a slow walk around the point; and cutthroat Pictionary.

The Bay is the focus of a lot of activity up there. My family likes to sail and kayak in it, and eat the lobster and mussels from  it. I only like to spend time in the bay when the temperature is in the 80s and the sky is clear, so almost never. My father loved sailing in the bay. He was a late comer to sailing and was truly a hazard to the other boats that might have the misfortune of sailing too close to him and of course to his unlucky "crew" (usually some of us). After he died, (in a manner unrelated to his lack of sailing skills), we tossed his ashes in the bay thinking that was where his remains belonged. I often wonder about that. The water is so cold, the air is damp and foggy, and the noise of the lobster boats incessant. I wouldn't want my remains floating there.

For the record, I would like my remains in a place where you can't hear motors. I am so tired of the sound of cars, planes, boats, guns (yes, guns - we live near a shooting range), lawn mowers. Plant me on a hill away from the noise, please.

Well, I hadn't meant to get melancholy, but sometimes that 's what this blog is for. I hope you all had happy July 4th breaks and have more summer fun to anticipate.

Be well.

Love,
Amy

A New Nickname

So it is time to concede that Chemo Brain is a real problem and I have it. The husband has taken to calling me CB (which, he reminds me, also stands for chicken brain.) I did a little research on Chemo Brain, and learned about some common symptoms.

• Forgetting things that they usually have no trouble recalling, memory lapses
• Trouble concentrating, can’t focus on what they’re doing, have a short attention span, may “space out”
• Trouble multi-tasking
• Taking longer to finish things, disorganized, slower thinking and processing
• Trouble remembering common words (unable to find the right words to finish a sentence)

So a typical day in the life of CB goes something like this.

Deaf, elderly dog barks. Barks again.  Barks again. Not with any particular rhythm or frequency which makes it even more irritating. Each bark is a grating surprise. CB squints at the clock. 5:30am. CB pulls a pillow over her cold, bald head to muffle the noise. Husband gets up to manage the dogs. 

Two hours later, CB gets out of bed.  Unused to her new cancer corpulence, CB waddles stiffly into the bathroom. Looks at herself in the mirror. Shuffles a bit faster out of the bathroom. CB stands uncertainly in the middle of the bedroom. What to do next? Dress? Wash up? Drink a cup of coffee? Ten minutes pass. CB scratches her mosquito bites. CB's feet start to hurt. CB returns to bed. CB thinks to herself, today is going to be a productive day. No wasting time. No distractions. Just pure productivity from morning to night. And then CB will have a good night's sleep. A good night's sleep sounds good. Maybe last night's sleep isn't over yet. CB pulls pillow back over her head. 

Oblivion fails to return. CB gets up. Shuffles back to the bathroom and washes up without looking at herself in the mirror. Opens shirt drawer. What shirt should she select today to cover her mangled torso. That one is too tight. That one is too skimpy. That one is too bright. That one is too transparent. Might as well wear this one...again. Now what pants to wear. Too tight all of them. Sweatpants...again.

CB waddles downstairs to make breakfast. Feeling good. Ready to really bustle about. With great efficiency and sense of purpose, CB pulls out the eggs, the butter, the toast. Wondering whether all this activity might count as her exercise for the day, CB energetically drops a couple of pieces of bread into the toaster. 

The phone rings. CB answers. No one responds. CB hangs up. Suddenly CB remembers that she needs to transfer the laundry to the dryer. Back upstairs. While transferring the laundry, CB notices that she hadn't made the bed. CB makes the bed. She finds herself standing in the middle of the bedroom again. A bit confused. Now what is CB doing up here? CB sniffs the air. Something's burning. Damn. Fast waddle back down. The toast.

Back to the kitchen. The toast is burnt. CB extracts the toast and makes a big mess of crumbs. She cleans the crumbs. She does a really good job of this, and feels a sense of accomplishment. What else needs cleaning. CB notices that the cabinets have some smudges on them. CB vigorously cleans one or two cabinets. She peers into the oven and decides it too needs cleaning. She rinses out her cleaning rag in preparation for the oven cleaning project but sees water spots on the window. It may be time to clean the windows.

The phone rings. CB's sister checking in. They chat for 20 minutes. CB's son comes into the kitchen. "Is breakfast ready yet? Didn't you say you were going to make it about 2 hours ago?"

Time to do some work. CB sits down at her computer. First things first. Check email. Hmmmmm. Pottery Barn is having a sale. Might want to check that out. Huh, those curtains are nice. Now where might CB need some new curtains?

CB heads upstairs to consider this question. Once upstairs, CB can't remember what she's doing up there. Walking past the laundry machines reminds CB to fold the clothes in the dryer. Forty five minutes later CB returns to her desk.

CB continues to review her email. Then CB decides it is time to get serious. She opens up a work folder. She sits up straight, cleans her fingernails and writes the title of the paper she is working on. That feels good. She's on a roll now.

CB realizes she needs to do a little research first. She opens Google. Oh what a funny little video is posted on her home page. CB wonders what other funny videos she might find on You Tube. Lots. Back to the research. CB finds some information that might be relevant to her paper. She begins to read an article. She suddenly feels a bit peckish. Whoa! Time for lunch already.

So it goes...

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.