Sunday, April 8, 2018

Battle ax vs. Mass General



(A sweet image of me and my son before I ruined his life)

I got 11 inches of hair cut off on Sunday.  Brittany at the Hair Cuttery, outdid herself.  My son greeted me with, "You've ruined my life."  Tim pretended he liked it and overdid wondering out loud what JP's problem was.  In the 70's Tim's mom returned from the salon with a perm.  I've heard the traumatized retelling of this atrocity multiple times at family functions by Tim and all three of his brothers.  I reminded Tim of the perm.  He was unable to squelch the tsunami of empathy that welled up towards his son at that moment.  My girls were thrilled with the new doo, but couldn't help throwing in some snide comments about how dire my hair had been.  My brother in law looked at me and said, "Wow! you look really cool!" Without taking a breath, he turned to his wife and said, "Promise me you'll never do that!"



"Moms just can't win for trying" was my chiropractor's reaction to my mom-hair travails. Can't win for trying is a Charles M. Schulz-esque way of putting it, but he's right.  I was often embarrassed by the flamboyance of my beautiful mom.  She was not the understated Yankee mom that my friends had.  She wore Chanel No.5 and mini skirts.  Her lipstick color was an electric Revlon shade called, "Naked Pink." She always matched her eye shadow to her shoes.  I cringed when she laughed loudly and was mortified when she flew into a rage over something I deemed trivial.  My mom recently CRUSHED breast cancer.  It's as if she had a referee's whistle, and she blew it at every step of the process.  This formerly eye-rolling daughter is clear that our health system needs more Susie Kinders.


Mom took a month to tell us.  I'd detected something wasn't right for that month, but I'm a self-absorbed daughter, so I thought I was doing something to annoy her.  I remember musing to my silent, introverted employee that my mom didn't seem to like me anymore.  Perhaps I was going on and on about my life and kids, and I wasn't asking enough about her life?  It was the beginning of December when she told me.  I was trying to pin her down about holiday plans.

Scheduling her surgery had been difficult.  She wanted to get it done in time to see my kids sing the Evensong during Advent, but she'd fired her first doctor.  He made the mistake of telling her she was "really lucky."  My mom did not enjoy hearing how lucky she was to have breast cancer from a man who was essentially congratulating himself for catching it early.  She was also unimpressed to hear he was planning the same butchering she'd gone through in 1989 for a lumpectomy.  Had no progress had been made in 30 years to improve that procedure???

Doctor #2 was female and had a less-invasive method for the lumpectomy.  She assured mom that she would call me after her two procedures were complete.  When my mom arrived with her empty stomach for the early-morning anaesthesia and lumpectomy, she was told that the first part of her surgery would happen in the morning but that her part 2 had been moved to 3 pm.  That left my mother on a gurney, behind a curtain for 6 hours 1. starving 2. nervous and 3. LIVID.   I don't know if she was somewhere in a ball weeping with all of the other people who had dealt with Susie that day, but the surgeon did not call me when she had finished.  All I know is that the hospital's human resources department had to get involved, and Susie's third doctor was young, attractive, male and above all, obsequious.

Mom did make it to Philly to hear my kids sing Evensong.  After her Tuesday surgery, she'd planned to hop into the car and drive from Massachusetts to Philly on Thursday or Friday.  Because I'm a self-absorbed daughter, that seemed AOK to me.  My husband, who is not a self-absorbed daughter, bought me a plane ticket up to mom so I could drive her back to Philly.  I had an enormously pleasant time at the airport. "My mom always tells me how tired I look when I see her in the winter." was my opening line to the woman at the MAC counter after I'd had a few wine tastings.  With multiple brushes, swabs and sponges, and an almost-flight-missing amount of time, I emerged feeling very sticky.  I thought people would be staring at me when I boarded the plane because I looked like some kind of a freak in a mask.  Nothing happened.  As I hopped into my mom's car at Logan Airport, she looked at me and said, "You look nice!"


My mom loved Evensong, but she was pretty grumpy all weekend.  After the service when we were celebrating my birthday, Mom didn't come eat with us. Instead she sat in the dining room, drinking her rum and limeade, playing solitaire on her computer, and shushing my post-singing, euphoric children.  This birthday girl got annoyed and snapped at her mom.  Susie apologized after I'd put the kids down.  She said, "I've not been feeling well.  I've had an awful case of hemorrhoids since the surgery."  Happy Birthday to bratty, insensitive, wretched me.


My mom returned home to an uplifting call from ex-doctor #2 that the lumpectomy had been successful.  After a biopsy the cancer was determined to be gone and have been slow-growing in the first place.  Susie opted to get two weeks of radiation to completely nail down the lid of her cancer coffin.  The day she went in for her radiation run-through, I'd had a challenging morning.  My godson had called me the night before from Nepal to ask that I accompany his 16-year-old sister on a mission to extricate their dad from a bad situation and put him on a bus back to Montana, where he is from.  It was not a fun morning.  I'd treated myself to a second cup of coffee before arriving at my studio.  My shaky self dumped the entire cup on my computer.  It was ruined.  A call to my irate mom was a welcome distraction from my own misery.

Apparently the nurse casually informed my mom that it was time for her tattoo.  Susie responded, "Tattoo?? How long will that last?"  "It's a permanent tattoo." was the concise, unapologetic response.  At that point my mom morphed into a combination of Cruella deVil and the ice princess from Frozen.  I have a clear mental picture of her intense blue eyes narrowing for a second before swirls form in her pupils and silver lightening bolts shoot out and shatter on the walls of the room.  A punk rock virtual version of "Let it go" came on while the woman endured the following tirade: DO YOU THINK I WANT TO LOOK AT MY BREAST FOR THE REST OF MY LIFE AND THINK THAT I HAD CANCER???? WHAT IS WRONG WITH YOU PEOPLE???? WHY THE HELL CAN'T YOU USE A GODDAMNED SHARPIE????  ARE YOU INSANE, INCOMPETENT OR JUST STUPID??? I got so much pleasure picturing all of this at the expense of this poor nurse who made a futile attempt to proceed with a platitude about "our procedures."  Taking on Susie at that point was as bright as trying to rationalize with a tantrumming toddler or making a preemptive strike on Kim Jong Un.  Never-to-be-fired, obsequious Doctor #3 came sailing in to smooth things over and assure Susie that a Sharpie would suffice.

Kidding aside, I've since talked to multiple breast cancer survivors who despise the black dots tattooed onto their breasts.  Some of them incorporate the dots into a prettier tattoo to celebrate their triumph over cancer.  Many of them wish they'd not numbly agreed to a permanent tattoo on their bodies to help a hospital avoid a lawsuit.  I'm sure that doctor and that nurse will continue to tattoo radiation-bound women.  Perhaps, though, their tones might have a post-Susie, Pavlovian wobble when they deliver this information so a patient will detect some room for discussion.

For the radiation, they'd told Susie to put on a "hospital johnny" as she calls it.  She despises those things and refused, opting instead, for her own front-opening shirt.  Neither the lumpectomy nor the burning radiation had worried her.  The wrenching of her arthritic shoulders was her main concern.  She stopped the radiation and demanded props, padding and pillows to make the process manageable.  Her demands were met with resignation.  She had a conversation with a fellow patient with similar shoulder issues in the waiting room.  My mom told her that she has the right to ask for padding, and the woman looked at her incredulously and said, "You can DO that???"  "Yes you can, and you SHOULD!", said Susie.  (At this point in the mental film I've got going on, my mom, played by Judy Dench, fist bumps the other woman, played by Helen Mirren)


Susie was late to her final day of radiation.  Hurdling down 128 in her Audi probably going 92 mph, She was pulled over. 
"Mrs. Kinder, do you know why I've stopped you today?"
"Yes, of course I know, I was speeding because I'm late to my final day of radiation!"
"Mrs. Kinder, do you know that your license is expired?"
"That's impossible.  I'm sure I renewed it."
"No you didn't."
"Yes I did.  I put it in the mail."
"You know you can do it online with your smart phone, Mrs. Kinder."
"I most certainly can't.  Why don't YOU do it for me???"

It took the officer 3 tries.  Perhaps the Boston-bound traffic zooming by him as he leaned on my mother's car fiddling with her iPhone was distracting.  I know she inadvertently gave him an expired credit card number at one point, so he had to start over.  He sent her off with a warning for the speeding and a renewed driver's license.

I'm sure the teenage daughter version of me would shrink with humiliation at the tumult my mom created.  The life-ruining, short-haired mom version of me is so proud.  The way our healthcare system treats people, especially women, is appalling.  Maybe with a few more Susie Kinders, this will change.  And maybe at my next visit to the Hair Cuttery I won't go quite so Joan Jett in my desire to avoid mom hair.

(To celebrate the 100th day of school, Toby dressed up as a 100 year old.  Who knows who modeled this sweet, meek old lady for her.  It's not based on either of her grandmothers)

UPDATE: My mom had a HORRIBLE hip surgery after her bout with breast cancer.  As she had previously sailed through a double knee surgery and the other hip surgury, I blame her problematic 3rd joint replacement on the fact that she was told to get radiation (which she did not need) and her body was not ready to get a hip replaced 3 months later.  She ended up infecting, and when I say "infecting," I mean that her hip EXPLODED 10 feet-all over her hospital room.  She had 2 subsequent cleaning out surgeries bringing her total to 3 surgeries in a month.  She then had to deal with 9 months of antibiotics that stripped her energy, appetite and will to live.  The phrase, "the beginning of the end" kept floating through my head, and I was ENRAGED.  I still feel that she has a major case against the hospital.  She may be a battle ax, but she is not a litigious one.  I'm frustrated by this, but I'm also extremely proud of her.

And now this....She sent me this e-mail last week.  I was on the edge of my seat reading it.  It's such a testament to our TERRIBLE health care system and to my mom's maintaining her Battle ax status:
About a month ago, I noticed a bony lump on the top of my left shoulder. I thought it was probably a bone spur, but since I wanted to be sure, I made an appointment with someone in the office of my primary care physician, because she was booked up until September. I saw a pleasant male doctor who looked at my shoulder lump, called it a "mass," and told me that I needed to see a surgeon for a biopsy. The office suggested a local general surgeon, whom I had seen last year about my inguinal hernia, and made an appointment with Dr. Jhr (pronounced "Jar"). He too looked at my "mass" and declared that he wouldn't take his knife to it until I had an MRI.  We made an appointment for an MRI at Lahey Danvers, a local institution which does so many MRI's that they have a separate entrance for folks having the test. Three days before the MRI, Dr. Jhr's office called to request that I get blood work done asap because they wanted to do the MRI with and without contrast.  I did so that afternoon at Addison Gilbert, the medical facility in Gloucester where I was having lunch with part of my mystery book group.  The MRI came and went the following Monday, and I waited to hear the results. The 4th of July festivities intervened, so I didn't call Dr. Jhr's office until Monday. He was operating, so I asked that he call me back asap and that his office make a hard copy of both the MRI results and the blood work and drop it in the mail for me.  These arrived in sufficient time for me to make a copy to give to my "crew" Eric, a retired physician, who can decipher these sorts of things. He agreed with me that the radiologist's write up was confusing, since it seemed to be talking about the left shoulder and also the right one, which had not been included in the imaging.  The following day I called Dr. Jhr's office again to discuss the write-up only to find that he was on vacation until the end of July. His assistant tried to decipher the radiologist's write up for me without much success, and we concluded that the doctor really wanted me to see on Orthopedic surgeon about the "mass." I made an appointment with the shoulder specialist who had successfully replaced both shoulder joints for a fellow member of my church choir, Dr. Fehnal, at Sports Medicine North. Yesterday I had that appointment, which consumed about two hours of my time, and learned that my "mass" is a fairly common bone spur which often develops in a shoulder which does not have sufficient cartilage. Dr. Fehnal wanted to know if I was experiencing any pain in the joint and seemed surprised when I reported that I had none.  That's when he showed me a hard copy of a image from the MRI and pointed out the area where I should have cartilage and the space where most of the rotator cuff is missing in my left shoulder. Both he and his Physician's Assistant seemed amazed that when I held my left arm parallel to the floor and was told not to let him push it down, I had quite a bit of strength and no pain.  "Most people with torn rotator cuffs cannot do this," he remarked.  

Dr. Fehnal agreed with my opinion that if it isn't giving me any pain or trouble, we should leave my left shoulder alone for now, and that I can continue using the bone spur to help keep my purse where it belongs on the top of my left shoulder. 

I was so relieved that her story didn't end up in some oncology office.  The word, "mass" had me on tenterhooks.  I can hear her multi-tasking Virgo body talking up the limb it sprouted: "Not only does it help her use her arm; but also it's a handy purse hook!"
Susie recently cut her hair off too.  Although now I'm growing mine out.  It turns out that short hair needs to be maintained.  That's never going to happen for me.