Monday, April 25, 2016


When one is dealing with a severe blow to executive function, the ability to multi-task, has a To-Do list that never seems to get shorter,  the last thing needed is a group of people who should know, but don't know, resulting in the wasting of an entire afternoon. Four precious hours in which I could have accomplished, oh, I don't know, perhaps a task that in a pre-cancer body, would have taken 20 minutes. Or less.

So what exactly does that all mean??

Quite simply, this.

I am entering my doctor season. Follow up appointments with my plastic surgeon, my medical oncologist and the dermatologist. I'm down to three and the med onc isn't even a visit with the doctor. It's his PA.

Yes, it's unnerving. My balance seems to be off again and I had this back pain thing first on the left side of my back, then on the right. I went to my PCP over the weekend. Low-ish blood pressure, not dangerous low, just low-ish. No lower than in the past. He identified the pain in my back within a minute. It was a muscle strain but when that was preventing me from taking a deep breath, I already diagnosed myself with brain mets, lung mets and bone mets. My stomach was acting up too so I tossed the liver in just because, well, I KNOW you hear me.

I also know I have none of those things. Or, I'm reasonably certain at the moment, I have none of those things. Since it takes one billion cells to cluster together in order for a "thing" to be visible on an imaging test, can we ever really know what's happening? Cue the resounding, "NO!" Or at least, "Not yet."

But this isn't about that.

It's about the fact that I spoke with the doctor and his staff when I was in there on Saturday about getting my referrals for my follow up care. I was told and according to the policy, one referral to MSKCC was the only thing that was necessary. It is specialty care at a specialty facility. One referral. And they can bounce me around like a volleyball.

The PCP's office wasn't certain how to do that. They refer using physician ID numbers. I left the office on Saturday with a promise that I would call on Monday with the answers.

And that's how I wasted an entire afternoon.

First, I contacted my health insurance company. The initial response to my query was, "Hmmmmm, can I place you on a brief hold while I contact the department that handles this." I uttered my approval before insisting she take my phone number should we get disconnected. Instant eye roll on my part, along with the proverbial kicking oneself.

She DID get back on the phone. "I didn't get the answer I wanted, I'm going to try another department." Before she put me on hold, I did make sure she had my number to call me back just in case. When just in case happened, and the line went dead, I waited for about ten minutes before realizing I was an absolute idiot if I actually believed anyone would be calling me back.

Call number two was made to MSKCC. They deal with this all the time. However, they are on the receiving end of those referrals so I can't fault them for not having an answer that made me any too warm and fuzzy. They told me one referral to any doctor would suffice and cover all doctors. It wasn't sitting well with me so I tried my insurance company a second time. I followed all of the proper prompts, don't even get me started. My "representative" request was duly ignored. My backup, to put incorrect numbers in just to get to a person didn't work and somehow, I find myself lost in telephone prompt hell with the computer thinking I am a provider. And, the computer threatening to hang up unless I entered a number it could identify. And the computer giving me its rendition of See Ya, Loser.

I'm sure I said many horrible things to the phone. And then, I realized enough is enough and took my act to the place I like to go when I need to attract the attention of a company that is not being very helpful. I turned right to twitter. I found the parent company, a very large conglomerate that, for what it's worth, announced last week they will not be writing any more ACA policies once 2016 comes to an end. Yay, ACA (insert sarcasm emoji-I'd like one properly designed to be dripping with sarcasm). Don't even get me started. And no political commentary. Please. This isn't about that. That was an aside.

As expected, I received a message to please send them my phone number in a private message. I did and they called within two minutes. Score one for twitter and the customer service team that is monitoring their social media. Social media team transfers me to real customer care people who proceed to tell me, "Oh, that division in NY? We can't access those records. Unfortunately, they don't have a social media team. I'll reach out to them and someone will get back to you within -- wait for it -- Two.Business.Days."

I never got nasty, my tone was more in the incredulous zone. I explained that my first appointment was in 48 hours and I needed this resolved today. That I was tired of phone prompt hell and equally tired of being disconnected. When she said that was all she could offer and in typical robotic form enraged me with, "I'm happy to be of assistance, is there anything else I can do for you today?" I lost my shit. I simply said, "Thanks for nothing." In moments like these, I'd love to have an old fashioned phone because nothing says you suck with the same dramatic ending as the slamming of the phone.

I hung up the phone and yes, you may have guessed it. Right back to twitter. I sent a few tweets that were less than kind in their content but they were completely true of my experience. I was pretty irritated. I got back on the phone with the NY division of the insurance company. I specifically asked her to check about this MSK one referral thing. Then I directed her to the page in my policy that refers to specialty hospital care. "No. No. No. You need referrals for every doctor." She was urgent and persistent. whatEVER.....

Ok. I'm done fighting for the day. I had her look up all three doctors (actually four, I wanted the oncologist and his PA). I asked her to please give me their provider ID's as I was not going to check the website where there might be outdated information. Armed with four provider ID's I finally called the PCP's office. They are lovely. Jennifer was with a patient, "would you mind waiting?" Of course not. These people are the only ones doing anything helpful.

When Jennifer got on the line, she began to issue the electronic referrals one by one. This takes a little time. While this was going on, my call waiting was beeping incessantly. I saw it was the health insurance company but I was so over it, I was NOT putting Jennifer on hold. What? They wanted to make the social media thing go away? It took about 20 minutes for Jennifer to electronically submit the referrals. She printed copies just to make sure there would be no problem and then asked me for phone numbers in case I had any other problems. She would handle it from there.

I surrendered. They won. There are four referrals for six visits with each of the doctors which are good for the next six months. Stellar. Unless, of course I actually need all of those appointments. Then, not so much.

And upon hanging up the phone, there it was again. The insurance company. "HELLO?" I barked into the phone. How can you not love caller ID? On the other end of the phone was a kind male voice that seemed to be a bit remorseful. Yes, I could hear that in his tone when he asked if he could speak to me.

Turns out after the less than happy tweets, they bypassed the social media team and someone contacted the head of the resolution team. I told him I heard the beeps, but I was too busy collecting provider numbers and then having the referrals sent to be bothered to interrupt the process. I told him I had been at this situation for almost four hours and I wasn't about to interrupt any of it, not in the home stretch.

There was an awkward pause. Silence between people in real life can be a good thing. On a telephone with a stranger, definitely awkward. "I don't even know how to tell you this and I want to apologize first."

I had no idea what to expect. I thought it was going to be an apology for the dropped calls, the inconvenience ... I was confused. The voice was sincere without being patronizing.

"I can't get you back the amount of time you spent trying to get this organized but......." immediately followed by,  "When I saw the problem, I groaned...."    He groaned??!!      ".... because none of this should have happened at all."


I see your groan and I'll raise you a dagger glare, a shrill shriek and a slammed phone receiver.

And he continued, "MSKCC has special exemption status. NO REFERRALS are needed for any policyholder of ours as long as MSK is an in-network provider." And MSK is in my network.

He apologized again, assured me he would be speaking with the people I spoke to, no one is in trouble, but everyone needs to know this. He kept apologizing for the time I lost. He promised this would never happen again with a guarantee. He sent me his contact information should I ever encounter a problem with anything in the future. I'm appreciative.

Ultimately, I realized this was an opportunity for me to share information. I asked him to please stop apologizing, "You know what, if my time is going to help others not have to go through this, then it was worth it."

And that's how I spent a day that I should have been working on a To-Do list that now has a few more things added, nothing subtracted but someone (hopefully a few someones) learned something, and I think that's really what matters most.

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Friday, April 15, 2016


Yesterday, I sat in my therapist's office, someone I just began to see over these past couple of months, and I realized something. I miss writing.

I was telling her about this great blogging adventure and how it changed my life. Completely, totally and unexpectedly, it changed the direction of my life. I became, in the words of George Eliot, the person I might have been when indeed, I did think it was too late. I'm sure I wrote about that. I remember mentioning an eye roll I gave my daughter when she suggested I Nike my life. Those things make for great quotes. They aren't the actions of people with real world responsibilities like caring for a family. Plus, George Eliot was actually Mary Ann Evans and I suppose circa early 1800's, women didn't know what they were talking about. Thus, Mary Ann became George, turned out some pretty impressive quotes and I Nike'd it.

And the therapist? I love her. I have come to realize I am living with cPTSD. I'm sure I mentioned this somewhere, too. Have I mentioned recently that my brain isn't what it once was. And have I EVER mentioned that my beloved grandmothers lived to the ages of 87 and 94 and each of them was sharp as a tack. Mom's mom, who lived to 87, was more genteel and very wise. Dad's mom was 94 pulled no punches and was also very wise. At 94, she had quite an arsenal of phrases. The best ones are not suitable for print. Seriously. Not suitable. Dad's mom's mom died one month shy of her 100 birthday. She too, was sharp as a tack.

Despite living in this country for more 80-ish years, she never learned to speak English. She was a widow at 30-ish (possibly 29?), pregnant with her youngest child, her SIXTH child, when my great grandfather was killed in a construction accident in NYC. I have the paperwork, his death certificate, her name on the ship manifest but please, I can't distract myself with minutiae to get the exact numbers at the moment. Her children always served as the interpreters. Over the last fifteen years (or more) of her life, an investigator from Royal Globe insurance would show up at her door at random times. I suppose someone would pick up a file and see how long this worker's comp claim was open and think, "NO Way."

And the bell would ring. "Oh, you're still alive?" She would barely crack open the door. In her bit of broken English, she would acknowledge that, yes, she was still very much alive. Very much well, except for arthritis which limited her mobility and very much irritated at these unnecessary interruptions to her routine which, for whatever its worth, included a daily glass of red wine, sipped from a coffee cup. "Yes, God Bless Me," was her barely audible response. And what was not visible? The hand gesture. The horn, to be specific. Shout out to CNN for a great video and accompanying article with drawings and some impressive and accurate descriptions. Most Italian Americans know this. You either sit on your hands or your hands are an integral part of the story. In the case of my mamma nona, the horn was to ward off bad luck brought by the idiot at the door, and a derogatory gesture directed at said idiot. I suspect the latter was the more important of the two in her mind. It's the mindset of my family. It's ingrained in me. I have no patience for this kind of stupidity. It's been handed down through the generations.

Aside from my mom, these are the women I look to when I'm in a quandary. I mix all four together and come up with my own appropriate response. Sometimes, it's genteel but if I am to be completely honest, as I've gotten older, I'm more like my father's mom. For that matter, my mom is too. The words fly. They can, no, they DO get quite colorful and yes, downright raunchy. And sometimes, those are the only words that will suffice. Yesterday, as a word flew off my tongue in the therapist's office, she stopped me to tell me that she loved the word. It was perfection. It was the only way to describe what I had just shared with her. That was her opinion about my word choice....perfection and stuff.  Curious? Not today. I'll share at an appropriate time. Despite the zen attitude and her well of wisdom, she's now been added to the mixture of women I look to when I'm seeking direction.

What is cPTSD, which is, after all, the only reason Zen-Wise Sally is now part of my life? It's complex Post Traumatic Stress. It's the accumulation of events rather than that one seismic boom. The accumulation of events over a period of time that elicits a similar traumatic response as a single seismic boom. But this isn't really about that. Besides, the only way one could fully appreciate the depth of the cPTSD I am working through would be for me to invade the privacy of too many lives. Just trust me. It's a hot mess. It's complicated. And I'm trying.

Yesterday, I shared how much I missed writing. How I felt it might be time to rebalance my life to resuscitate my blogging. I shared how I read some of the things I wrote and have a hard time believing they were my words. Writing is a skill. You get rusty and I am worse than the tin man.

Tomorrow, I head for New Orleans for my great adventure at the Annual AACR meeting. I will miss Lori, my always partner in crime at these meetings. I know it will be a transformative experience. I already know many of the participants in the Scientist <--->  Survivor program (SSP). I can't wait to be in the company of the genius minds who are working diligently to change the direction of cancer, to make a real difference to bring us outcomes that will be game-changers, that will matter to patients. As everyone tells me to have a great time in NOLA, they think I'm lying when I say I will see little more than the inside of the convention center. With over 18K people and simultaneous presentations, there's simply too much for me cram into four days, to think about beads or being busted down on Bourbon Street.

This is my third trip to this meeting, each time as a participant in the SSP. Karen hides behind the scenes and since I am going to be responsible for writing a few blog posts, frankly, she can kiss my ass because SHE is going to be featured in one of mine. You simply can't pull off the sheer volume of work that is required to put this program together and expect no one is going to notice. Peter Kuhn is my scientist partner for the small working group of advocates I will mentor, or try to. The man is so brilliant I can't understand one tenth of what he says but still I am blinded by his brilliance. And Dr. Anna Barker who runs the program? Just watching her walk into a room, any room and I am overwhelmed by the feeling of inspiration that simply washes over me. And that's before she opens her mouth.

That people of this stature want to hear from the patient population, that they understand we have much to bring to the table, that they aren't simply doing this to say they are patient centered and then pat us on the head and send us on our way - well, quite simply, that speaks volumes. That is the ship that I want to be on. The SS AACR. hmmmmmmmm? The SSP AACR??

I know that when I return, I hope my writing will be more frequent. I have a tiny voice in my ear, the voice of the person who pushed me to launch this blog, encouraging me to get started on another writing project. I'm at a place mentally, emotionally, physically and geographically that makes sense for me to be writing. So, I'm going to finish packing. I'm going to enjoy NOLA and then go back for a real visit so I can make some trouble on Bourbon Street. I'm going to tie up some loose ends that have been hanging above my head for far too long. And I'm going to let the voice in my gut guide my direction.

I may be re-running a few blog posts over the next couple of days. Some of the things I wrote did make sense. They made a difference, at least to me. It's sad that some of the stuff is years old and still relevant. The idea for the reruns brings me to thank Don Kerr who is putting together a book, and sent me and email to ask if he could include an old post I wrote. He may have pushed that very domino that my dear friend already had her finger on.

I'm not in Kansas anymore. Someone grab the oil can.

(Advance apologies for the comment moderation that may or may not pop up should you wish to leave a note. There was so much spam that got through to many of the older posts, I had to do it. Deleting 50 messages from, likely the same IP address, with the same stupidity finally pushed me to the dark side)

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