ReSound Alera: The Little Black Dress of Hearing Aids

Buck has been driving us toward North Carolina for the last three hours. We just made the big turn north on I-85 at Montgomery, Alabama toward Atlanta. Pensacola had a near-record 13.11 inch rainfall last night with more falling today. A persistent, heavy rain has been with us since we picked up our soggy Sunday newspaper at the gate and linked up with I-65 to Montgomery.

It’s not so bad for me, since I am in the passenger seat. Our laptop is a great knee warmer, and I’ve got it tethered to my Droid phone for high-speed internet.

Buck is road-testing a brand new pair of hearing aids on this trip. His old pair of Phonak BTE’s (behind the ear) are still working reasonably well, but hearing aids reputedly have a “life” of five to six years. Buck’s Phonaks are six now, and so when his audiologist let him know about a special 60-day trial promotion on new hearing aids, he decided to take advantage of it.

Dr. Jennifer Reeves LaBorde, Audiologist at The Hearing Center, Pensacola, Florida

Buck has seen Jennifer for about 12 years. She is Dr. LaBorde, a Ph. D. Audiologist, but to us, she’s also our trusted good friend, Jennifer. Buck promised her that he would check out all the bells and whistles on his new ReSound Alera BTE hearing aids on our trip to Maggie Valley. We’ll be in a variety of situations involving road noise, restaurants, and visits with friends that should provide all the elements for a good test.

Buck left Jennifer’s office with a chic black shopping bag full of gee-whiz gizmos. The hearing aids themselves are sleek matte black and silver units. The accessories are where things have the potential to get fun. These hearing aids are blue-tooth equipped, which opens up a world of potential enhancements. One is a phone clip, a unit that wirelessly pairs with Buck’s cell phone and then allows him to hear cell phone calls directly into both ears via the hearing aids. We haven’t tried that one yet. The other accessory is called a mini-mic. It’s a chic little black and silver number that I can wear clipped on to my t-shirt or blouse. When wirelessly paired with Buck’s hearing aids, my voice goes directly into his ears. What spouse wouldn’t love that?

We tried the mini-mic at home first, and then at a noisy restaurant. The mini-mic is fantastic. Buck could hear background sound all around our table at the restaurant, but when I spoke in a very soft voice, that is the sound he heard intimately and clear. It dampened and took precedence over all the other sounds. Buck had to remind me a time or two not to speak so loudly. Amazing. We were able to enjoy a relaxed meal and conversation in that noisy space without resorting to lip and/or mind reading.

And so, we have the black “Hearing Center” bag full of goodies and battery chargers to play with in Maggie Valley.

Buck says that so far he doesn’t feel like he is hearing any better with these new aids, however he notes that the TV volume on his small office set has come all the way down to 20, from a setting of 32, so something is clearly going on. Jennifer explained that brains need a period of adjustment to get used to a new assistive device.

Another cool thing is that the hearing aids make a record when Buck adjusts the volume up or down so that when he goes back for a follow-up with Jennifer, her computer can communicate with them and see how and when the units have been adjusted. This will give valuable feedback as she  fine-tunes the units.

Far out, don’t you think?

National Bladder Cancer Awareness Day July 17

This time last year, bladder cancer was not a phrase that had ever crossed my lips. I knew it existed, but thought it was one of those rare cancers that few people get. I couldn't have been more wrong. Bladder cancer is the fifth most commonly diagnosed cancer in the United States. Surprised? So was I.

According to the Bladder Cancer Advocacy Network, more than 70,000 people in the United States were diagnosed with bladder cancer last year, and more than 14,000 died from it. Because bladder cancer has a recurrence rate of 50-80%, it requires life-long surveillance. The cost of keeping this disease at bay makes it the most expensive cancer to treat on a per patient basis. Nearly $3 billion is spent in the US alone each year on treatment of bladder cancer.

By the time my younger brother, Steve, was diagnosed late last year, he had been having symptoms for months: blood in his urine, frequent urinary tract infections, frequent urination, painful urination, back aches, abdominal pain and weight loss. If you or someone you know has any of these symptoms, call your doctor for referral to a urologist immediately.

As with most cancers, early detection may save not only your life, but preserve your quality of life.  Mayo Clinic is a trustworthy website for health information. Click here to see their page on bladder cancer symptoms.

The Bladder Cancer Advocacy Network is sponsoring the first National Bladder Cancer Awareness Day on July 17 to heighten public awareness of this disease. Research dollars have been disproportionately lacking for this cancer, which has surely contributed to the relatively slow progress of treatment alternatives over the past twenty years.

National Bladder Cancer Awareness Day events are being held all over the country not only to raise awareness, but to celebrate with survivors, their families and friends, to remember the lost, and to share inspiration and encouragement. 

To find a National Bladder Cancer Awareness Day event near you, contact BCAN at or 888-901-BCAN.

Personal update:  As many of you know, Steve was diagnosed with Stage 2 invasive bladder cancer and had surgery to remove his bladder on February 23.  The neobladder that was crafted for him developed a rare complication which caused an enteric fistula. Steve has spent most of the last 3 1/2 months in the hospital because of this.  Yesterday, June 14, he underwent successful surgery to remove the neobladder, repair the fistula, and craft an ileal conduit. We are hopeful and guardedly optimistic that Steve will be able to recover now, to regain some of the 35 pounds he has lost in the last few months, and to once again hike, garden, eat (real food, not TPN), and enjoy sunsets on the beach.

Together we're better Our whole family is enormously grateful to readers of my blog, other friends, and especially the BCAN  On-Line Support Community for your prayers, resources, visits (thank you, Al), and other expressions of support. The BCAN On-Line Support Community has been there to help me in trying to learn about this awful disease and to offer support to Steve since the first day I went to the site looking for information. You can read my journals and the community's responses on the BCAN web site. My "handle" is Pinewoodswriter.

Non Sequitur

There are all kinds of big deals on the table from the minute we are born. Two of the trickiest are the urge to merge and the desire for immortal life. Our separate bodies preclude actual merger, but oh, we try, how we try. As for immortality, we learn,usually as children, that we won't live forever. But that doesn't stop us from trying, inventing subterfuges or taking great huge leaps-before-we-look of faith.

The bongo drum of the beat poet begins to play in earnest when we hit our mid-fifties and watch as our older friends and relatives begin to drop like marionettes whose strings have been unexpectedly cut. The merry-go-round plays herky-jerky music, and we try our best to waltz gracefully despite the stutter-step accompaniment that distracts and dismays.

It's been a hell of a week with a heaven of an outcome.

I'm too tired and wrung out from a week of travel and fret to go on with an explanation, plus there are privacy issues involved. Suffice it to say the person I love most in the world and I had a scare. Turned out to be a non-issue. He is well and oh-so-fine. And when I get one more full night's sleep, I'll be fine, too.

Bluetooth Rocks!

Like most long-married folks, Buck and I have little jokes together. One of ours is that since I can't see and he can't hear, it's a good thing we found each other. Actually, I can see up close okay, but you wouldn't want to be on the same highway with me if I was driving without my glasses. I'm quite near-sighted, plus I have this weird astigmatism that makes it difficult for me to tell which lane oncoming vehicles are in.  Just imagine if you saw a driver lower their window, cover up one eye and inch slowly into the road. . . . yep. Other drivers get out of my way.

Buck's hearing impairment has worsened steadily over the years. He's a scary-good lip reader, but we are always on the look-out for new technologies that will give him bionic ears. He wears high-tech silver and black behind-the-ear digital hearing aids made by Phonac. We have a conference-style phone at home that makes it possible for him to have a comfortable conversation, but cell phones continue to be frustrating. Most cell phones these days are  "hearing aid compatible," but in our experience, that hasn't meant much.

The newest, "bleeding edge," hearing aids can now be bought with built-in Bluetooth capabilities that can enable wearers to connect to cell phones, IPods, televisions, and other wireless devices. Hearing aids are very expensive, however, and so we were hopeful of finding a device to improve Buck's cell phone experience and "bridge" him over for another year or so while the latest greatest technology gets even better. As the huge baby boomer cohort enters the age of diminished natural hearing. . . well, you can assume the problem is going to get solved a lot faster. Suddenly, hearing aids aren't just for Granddad anymore. Plus, these days, almost everyone is wearing something on their ears. Hearing aids come in sexy colors now, too, just like Bluetooth headsets.

Buck's audiologist, Dr. Jennifer Reeves Sylvester, did some research for us. Enter the Artone Bluetooth Loopset, made by Westone. It's a nifty looking black and silver Bluetooth pendant on a black cord that can be worn over or under a person's shirt. It pairs with a cell phone, and the audio goes straight into the hearing aid wearer's ears, in stereo. And, at $167, it's a real bargain.

We were skeptical, but it works! So, today, we went out to Best Buy and bought a Plantronics Voyager Pro headset for me. I've never used a Bluetooth ear piece with my cell phone before. I am surprised how much I like it. Best of all, my voice is delivered via Bluetooth through Buck's hearing aids with perfect clarity. It's exhilarating to whisper to each other into the air and have the endearments arrive clear as pillow talk.

We hung out for awhile at Best Buy looking at gizmos. Now that we have the Bluetooth loopset template, we are looking at all sorts of wireless devices in a new way, with an eye toward using them to extend and enhance quality of life and independence. We even began to "blue sky" ideas for a new, smaller house that is truly a gee-whiz electronic cottage, with acoustics, lighting and computer design tailored to keep us plugged into this remarkable world until the day we matriculate to some other form of energy.

Bladder Cancer Advocacy Network and The Hero’s Quest

Until my brother was diagnosed with bladder cancer late last year, I didn't know much about it. When you set out to learn about this disease, it doesn't take long for you to find the Bladder Cancer Advocacy Network support community. It's an online place where folks can share their own experiences and information. I thought I would probably check it out, read a little, and then move on to other research. But that didn't happen. I stayed. These folks are great. I have learned a lot and been comforted by their kindness. It is much more than an emotional warm blanket or a group hug. The participants share detailed information about treatments, resources, their surgeries, pathology reports and how to interpret them, and much, much more.

Together we're better - Bladder Cancer Advocacy Network Support Community

There are support groups like this one for other diseases, conditions, transformational life experiences, and just about anything you can think of. Most of them are probably terrific, too. I can only speak of this one: the sense of respect for one another, honesty, and caring is the absolute best in "high tech/high touch."

Click on the badge and you'll find that I've started a journal over there. "Pinewoodswriter" is my totally unsurprising handle!

Steve's options for treatment have widened considerably now, and he has selected Dr. Charles Rosser at the M. D. Anderson Cancer Center in Orlando. (I might note that Dr. Rosser has very kindly selected Steve, too.)  He saw Dr. Rosser for the first time today, and will see him again on February 2 for another cystoscopy. Our brother and one of our sisters were with him today, and that's a big dose of warm fuzzies for me sitting at home on the other side of the state and our other sister out in Phoenix, Arizona.

When I started writing here about Steve's diagnosis, I started a category called "Steve's Cancer Trip." Awkward? Uh huh. I began hearing Joseph Campbell's voice as he described the mythological hero's journey and it occurred to me how many of the experiences Steve has already had and will go through in the weeks and months to come fit into the matrix of the classic hero's quest. And so, you'll see that that  category has now changed to "Steve: hero's quest."


What A Difference A Day Made

I've got good news and bad news. How about I give you the bad news first? Yesterday. Now, that was a doozie of a bad news day. Feel free to skip to the bottom of the page for today. Today was a good news day. Big time.

I spent two hours on the phone with a very nice person, Cindy, with the American Cancer Society. She told me that Florida is one of the worst states in the union to live in if you are uninsured. She reminded me, not that I needed reminding, how hard Florida has been hit by the deep recession, and how many new applicants there are for health care and other services. She told me about Cover Florida, an initiative passed by the Florida legislature last year to attempt to provide health insurance coverage for uninsured folks between the ages of 19 and 64. She advised me to read the small print carefully. Steve has been uninsured for more than ten years, so his recent cancer diagnosis is not covered by any sort of prior condition forgiveness, which makes the Cover Florida program "remarkably unhelpful," to use a favorite press conference phrase of former Secretary of Defense Donald Rumsfeld.

Cindy could not know that with each sentence, her gentle voice was pounding, pounding, pounding me, until I was no longer at my desk, but under it. She advised that even if Steve is approved for Social Security Disability, the Medicare component of it will not begin for an additional two years. Meanwhile, if he is approved for Medicaid health care coverage, that will stop if he begins to draw Social Security Disability because he will be receiving too much money and no longer be eligible.

This conversation came at the tail end of a difficult day, which had started with a woman advising me that the appointment Steve thought he had next week with one of the best urological oncologists in the country was only penciled-in, and tentative, and had, in fact, been canceled. Steve was fully aware that this was only a discounted-fee, cash upfront second opinion and review of his records only, with no "procedures," designed to give him some clue about what sort of treatment he should seek. I won't go into the whole sorry mess here, except to say having to call Steve and tell him there was no longer an appointment was the toughest call I've ever made.

The distance between five and fifty-five is not so far as we might think. I am sure our mother thought this out-take of little Steve's official kinder garden photo was cute. It is. But it is also the one that got pasted into the old green photo album with the black pages. It made Steve look hapless, and helpless somehow there with his shoes sticking out and a dungarees cuff showing. He's growing everyday now, in that lovely way of blooming adults; a beautiful picture, a disease defying picture.


Steve learned that his "perfect" big sister is capable of swearing a blue streak. We cursed together, and then went back to work. Mary Lou called. She is a terrific woman in New York with the Bladder Cancer Advocacy Network clinical trials matching program. We had talked mid-December, shortly after Steve had gotten the pathology results. She was just making a follow-up call to see how he is getting along and if we had any more information for her to feed into her computer to see if the specs of his cancer matched up with any studies looking for subjects.

I shared my tale of woe about the canceled appointment with Mary Lou. She suggested I call the organization's patient advocate. "They all have one," she said. "And here's a number for the Patient Advocate Foundation. Call them, too." 

I called the patient advocate for the organization that had canceled Steve's appointment.  She is a soft-spoken good listener, well-suited to her job.  She said she would speak to the new patient folks and also to the doctor, that she couldn't make any promises that they would reinstate and honor the appointment, but she would pursue it and get back to me.

The afternoon was wearing on by then, but I made one more call to a different hospital's oncology line. I left a detailed message, made a cup of tea, and sat back down for the call to the American Cancer Society (an impressive group, by the way). "We're here 24/7, and if there is any sentence that has the word 'cancer' in it, then we might be able to help." They might be able to help, for example, with a little gas money to get a person to their treatments,  or help with a repair to a patient's home, or with transportation to chemo. All sorts of things. I liked these people. No BS. Straightforward and forthcoming.

I stood at the fireplace last night and talked to Buck. My misery quotient was high. I went to bed last night deeply worried that no one would treat Steve's cancer; that he would fall through the cracks right before my eyes.

This morning, I resolved to attack the problem from a different angle: to pursue teaching hospitals, even Hill-Burton Act facilities around the country if that didn't work.

The phone rang mid-morning. It was the patient advocate. Steve's appointment was reinstated. I whooped, hollered and did a dance of joy as though his cancer had been cured.

A little later, I was astonished when a woman whose delightful title is RN-Patient Navigator (Beam Me Up) called me from the fine regional hospital whose oncology line I had called and left a recorded message on yesterday.  They will take Steve's case and provide treatment. They have no problem following treatment guidelines from the eminent oncologist Steve will see next week for the second opinion/review of records. 

They will take Steve's case.

Don’t Bring Me No Bad News

 Stage 2 is always better than Stage 3, and I’m not talking about live concerts. Cancer, baby. Is there any scarier word? Any word that scares the bejesus out of me more than that? My brother’s walk on the wild side has just begun, yet he has already picked up a substantial new vocabulary: bladder cancer, rare type, squamous cell, aggressive, nonbilharzial, suspicious, holistic, second opinion, M. D. Anderson Center, work the process, one day at a time.

Some among us have fought the monster and won. Kudos, Kathleen. And to your partner-in-health, Denny.

I Google, refine my searches, drill deep. The medical journal jargon grows more arcane by the inch. This is stupid. I only have partial information, and besides, the cheap comfort of data doesn’t add up to a hill of beans, or was that a bucket of warm spit? Whatever. By mid-afternoon, I feel like my brain has been chopped up into little pieces and fed to sharks, like my heart was thrown whole and beating into a trash compactor. 

Around 4 o’clock, I turn to Buck. “Yesterday, we said we were going to treadmill at 10:30 this morning,” I said.

“Yeah. But you were too wrought up at 10:30 this morning to do it.”

“That’s true. But I can do it now. Let’s go get on the damned things.”

I pull my hair back into a pony tail, stick ear plugs in my ears, and start walking. Not the time for literary podcasts. I need music. Loud. Full of life. I put the iPod on “shuffle” and every time it starts up with something soft and sweet, I  stab it with a finger to force it to the next song. I listen to the Gypsy Kings, Van Morrison, Nina Simone (ever heard her sing Blues for Mama?), and then — then I hear Patty Griffin, wailing out her song, No Bad News. Turned me right around. Reminded me of what I know, but forgot in the emotional melee. Here it is:

My brother has cancer. He is either going to survive, thrive, or die. And you know what? I don’t have cancer. I am going to survive, thrive and die. We all know this. Once we’re born, it’s too late. We’re in it for the ride. The point is to make it a good one, not just a long one, to figure out how to love each other and then, by God, do it.

Excerpt from Patty Griffin's lyrics to No Bad News

Don't bring me bad news, no bad news
I don't need none of your bad news today. . . 

I'm gonna find me a man, love him so well, love him so strong, love him so slow
We're gonna go way beyond the walls of this fortress
And we won't be afraid, we won't be afraid, and though the darkness may come our way
We won't be afraid to be alive anymore
And we'll grow kindness in our hearts for all the strangers among us
Till there are no strangers anymore

Don't bring me bad news, no bad news
I don't need none of your bad news today
You can't have my fear, I've got nothing to lose, can't have my fear
I'm not getting out of here alive anyway
And I don't need none of these things, I don't need none of these things
I've been handed
And the bird of peace is flying over, she's flying over and
Coming in for a landing

Striped Parasol

No hurricanes. Rather, monsoon season with occasional steam-sucking sunshine so far this verdigris September.

Yesterday afternoon found me reclining on a deep burgundy faux leather examination chair while my young, skinny surfer doc stuck a long needle between the third and fourth metatarsals of my right foot. Dr. E's eyebrows were upside-down v-shaped fuzzy caterpillars, strange counterpoint to gelled-up black hair spiking in modish points.  Not a stud muffin, exactly, but cute. At least, I tried to think so as he delivered the long, slow stick of cortisone  into the top of my tender foot. It wasn't a sharp pain. More what I imagine siphoning bone marrow might feel like.

Unlike me, most of Dr. E's patients are elderly diabetics. Shortly after I arrived, his nurse settled me into an exam room. Walls are thin in such places. I hear well and am an experienced doc-talk translator. Between weather talk and asides to his nurse, Dr. E race-walked in no-sox worn out jogging shoes between patients as he dressed wounds, ordered x-rays, advised patients on the special care needed for their legs and feet due to the diabetes, and — bless his heart — he listened, he comforted. Out in the hall, a nurse called for him as a patient came in trailing blood spots from her shoe as she was led to an examination room. I heard the patient talking to the nurse. "Oh, I'm so sorry to be messing up your floor."

When my turn came, he said my x-ray looked "really very good." Upon seeing the pinkish swollen oval area on my foot, he frowned and spoke to the nurse, who disappeared and reappeared fast as a cartoon superhero, needle and accoutrement in hand. Dr. E was moving too fast for me. I leaned forward. "If there's no fracture, what's wrong?"

"Most likely," (that great equivocating phrase), "the nerves or tendons are inflamed," he said.

"And will that shot of cortisone solve the problem?"

"You'll know within 48 hours."

"And if it doesn't?"

"Then we go to an MRI and keep looking," he said, nodding to the nurse to move into position to spray my foot with an anesthetic before plunging in the needle.

"Doctor," I said, moving closer to hold his attention. "I understand that most of your patients are older folks, many of them quite ill. I am very healthy, and very lucky. But this foot problem is messing with my program, and we've got to find out what's wrong and fix it, so I can continue to stay fit. Diabetes is a wonderful disease not to have."

Dr. E stopped, needle in mid-air, and looked me in the eye. Ah, contact. You know it when you see it. He nodded. Message received. He bent to his work, apologizing all the way for the discomfort he was delivering along with the medicine.

On the way out, he stopped at the door, turned around to look at me again, and spoke softly, "You're right. Diabetes really is a wonderful disease not to have."

I rode the elevator alone back to the clinic lobby. It was 3:30 and raining sideways, so I stopped off at the walk-up cafe window for a latte and a chocolate chip cookie, found a comfortable chair and people-watched. Some were in wheelchairs, some on crutches or limping, young women with downy soft hair on their sleek skulls, crying babies and exhausted-looking caregivers, all making their way in and out of the storm. Two men stood on either side of the automated doors with industrial mops. They handed out plastic umbrella bags to everyone trudging in with their dripping bumper-shooters.

My coffee cup was empty. The cookie was gone. I missed Buck and Maggie, dry at home, awaiting my arrival.  My foot was not in good running condition, and I hated the thought of getting soaked to the skin walking to the car. Umbrellas. Ha! I was sitting directly across from the clinic's pharmacy. They had three packable-style umbrellas: one black, one blue, and one a cheerful stripe, more like a parasol.

IMG_2830 The heavy rain stopped had stopped by the time I reached our gate. I pulled into the car port as a copper sun was setting. Maggie and Buck met me at the door.

Joy in the Feet

Have you ever been ill for a time or had a broken bone that prevented you from walking, running, jumping or bounding up and down stairs? Remember the thrill of regaining those abilities?

I put the Air Cast way up on a high shelf a few days ago. I have written "I will not do jumping jacks in the shallow end of the pool ever again"  1,000 times in a black and white composition book.

Buck and Maggie have accompanied me on short, slow walks for several days. This morning, I am walking solo, all the way to the gate. Oh my God, it is lovely out, slightly overcast and cool. Everthing I see, hear or smell is a miracle of sensation to my cabin-fevered senses.

IMG_2729Even the bag worms: they are lovely.

IMG_2734 The mushroom in the edge of the woods: it is lovely.

IMG_2742 The tree in the streambed that looks like a pair of upside-down legs: it is dappled in the morning light, and lovely.

IMG_2740 And the improbably vibrant French mulberries, also known as native American Beautyberries: they are beyond lovely. They are gorgeous.

Buck didn't have to ask. He saw my smile. Healing is a beautiful process.

Fire Lines

Buck talked to the Division of Forestry last week to make arrangements for them to come out and re-plow some of the fire lines around Longleaf. Before Hurricane Ivan knocked us for a loop, back in September of 2004, we could walk a circle of fire lines all around the property. There were circles within circles and connecting lines. It was not quite a labyrinth, but was, for me, the perfect place for a walking meditation.

The forester will come out once the ground has dried enough so his brand new equipment doesn't bog up and run the risk of getting stuck. We're into a pattern of daily thunderstorms and showers right now, and the ground has been too wet to plow.

Hurricane Ivan took about 350 of the old growth Longleaf pines and hardwood trees around here. A good number of them wound up strewn across the fire lines.

Exigencies of life intervened in 2005 and 2006 to put path clearing not only on the back burner, but forgotten for a long time. Our son (my stepson), Darryl, died of a heart attack. He was 45 years old, much loved, and greatly missed. The trauma of his passing has developed scar tissue on our hearts, but as anyone who has experienced loss knows, the open wound never really goes away. His mother, Buck's first wife and the natural grandmother of my grandchildren, had died from complications of a stroke almost exactly 60 days earlier. Darryl's brother and sister lost both mother and brother within two months.

We were smack in the middle of a huge home building project — sort of like being in the center of a bridge with both ends on fire and no where to go but through the fire.  It was an awful time.

The year 2006 brought surgery for me for a strange fibroid outside the uterine wall that no one was sure was a fibroid, rather than something else far more scary, until it was out and examined by pathologists.

I've been sitting here trying to remember what took 2007. Oh, yeah. No wonder I forgot. I put it into the File 13 of my memory bank. Buck's friend of 35 years, a retired two-star Air Force general, died in February of 2007, leaving Buck the personal representative of his estate. He had also made Buck trustee of a trust that Buck didn't know existed. The twisted plot line of the unfolding of this messy situation would make a Southern Gothic novelist drool. I'll leave it at that.

Life is a beautiful, horrific braiding of events. We stand at the mouth of the river and the eye of the storm, that place where rainbows are seen. Difficult days, we tread water. Glorious days, we fly.

When the forester clears the path and the circle is once more unbroken, Buck, Maggie and I will walk it again and again. Maybe we'll find anew the pitcher plant prairie where I took these photographs in May of 2004.

Fly with me. Let's soar above it all for a sweet while.

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