Good Doctors Listen

As I sat in my oncologists office last week a young first year resident entered the exam room. I was not warned by my oncologist’s nurse – very unusual. Yet I was not worried to see him either, since my oncologist certainly wouldn’t put someone in a room with me who wasn’t capable of good quality care.

The resident began his questioning and went through all my medications asking why I took certain things and who my primary care doctor is. Yet each time I would begin to give him an answer, within 3 to 6 seconds he would interrupt me and put in his $.02-$.10 worth of self important opinion-based advice. After about the seventh question I got kind of annoyed. He clearly hadn’t read my chart before he came into the room. He had never seen me before and didn’t know anything about me as a human being or my condition – I was just another generic cancer patient to him. Just another face In an exam room. Just another woman with metastatic breast cancer. And then immediately without really knowing the extent of my relationship with my oncologist he began questioning my current protocol – and making treatment suggestions.

He then pulled up the films of my last CT scan with contrast. Why he thought this was even appropriate is beyond my understanding. But I think it was also to clarify his understanding of where I was at before my doctor came in because again, it was obvious he had not reviewed my chart, which is something I can’t stand. Just as he was starting to review my last films, “okay I’m going to pull up your scan and show you what you look like inside.” (Had I accidentally gone to the children’s cancer center?) My discomfort grew. He had nothing to compare this scan with and no history with me at all. the following occurred making me not just uncomfortable but slightly angry.

Sometimes the filter between my brain and my mouth goes on holiday. It took a brief trip at that moment.

Clearly he knew nothing of what kind of patient I am and he didn’t understand the style of relationship beteen my oncologist and I. Just as I said the following sentence, “you know statistically most physicians wait an entire 13 seconds before they interrupt the patient. You’re waiting merely three seconds. I suggest you at least give me the full 13 seconds of listening while distracted by the computer before you interrupt me.” His mouth was agape with the audacity of my comment. Don’t you just despise when someone asks you a question and then doesn’t even listen for or to your answer and then begins talking over you?

The moment I said that Dr. B walked into the room and started laughing. He’d heard the comment that I made and proceeded to correct this young resident and told him that I was an unusually well informed patient: the kind of patient who understands their illness and that he and I both worked on my treatment, not just him. And that interrupting your patients is not a good protocol at all. The resident continued to bring up my films and Dr. B said please shut the screen and let’s ask Ms. Kaminsky if she would like to review the results before we just pull those films out. It might not be a good time for her and we should find out if she wants to talk about that or not.

Of course I wanted to talk about it and he knew that. We had already had a conversation via email reviewing what the appointment would entail – we were going to talk about the films and what the next steps were going to be because apparently things were not looking as good as we’d hoped. The resident sat quietly after that and he listened to our conversation. He did as Dr. B instructed, pulling up things on the computer screen when asked to and was quiet for the rest of the rather long 90 minute appointment.

The rest of the conversation when something like this. I asked Dr. B weather xgeva was the right medication for me to be on for so long because it was taking a toll on my bones. He said that was something we should definitely look at and I asked about a new substitute medication that’s also delivers bone support I had read about in a study. He had read about the same study although neither one of us could recall the name of the medication and I still haven’t looked it up because he’s going to do all that legwork for me or at least have the resident do the work. He will get back to me on that one.

Next we talked about what the CT scan showed and it turns out that I have a growth (can’t we just call it a tumor, which is what is) on my L4 vertebrae that is going to require something different. And we were both certain what that would be. I said “Dr. B I think it’s probably time we look at some radiation.” He retorted: “why do you always jump right to the end of the conversation and spoil all the fun?”

We laughed again. The resident didn’t laugh – he cocked his head like a dog who hears his name from his master.

Now that’s funny.

But indeed I had a hunch for that day’s outcome, since my lower back had hurt more than usual. It’s always given me trouble in the past, but this time it’s different and the pain is different.

I know the only real course of action is radiation therapy. It’s pretty standard procedure for these kinds of tumors. There will be a tattoo of a few dots on my back. My mind races to the reward of another tattoo after the treatments are finished. There’s one waiting for the scar on my right 1/2 a breast of a bird on barbed wire across the scar.

Any ideas for the dots on my lower back I’m taking suggestions. Snag a permanent place on my body with the best answer – and it cannot be a tramp stamp or a follow the numbers dot puzzle.

No paint by numbers either. Get creative and you’ll also receive a free copy of my book whenever I finish it. Gogs Gagnon’s book re-inspired me to hit the pages again.

Thanks to you, my readers and my friends for suffering through yet another day in the life of a metastatic breast cancer endurer (borrowed from Rudy Fischman who’s VLog The Brain Cancer Diaries which is worth any of your limited time. Start wherever in his series you’d like it’s non linear in a way since he interviews people with all kinds of cancer and doesn’t just hack on about himself. I think found him on YouTube around episode 10 and went back to the beginning – he’s at https://www.youtube.com/channel/UC1_GCferA7W2dr5WVP2rq_w)

I like endurer better than survivor. We aren’t going to survive our cancers but we do endure.

Indeed we do endure a lot.



Crossing Lines: writing eases the loneliness of disease

It’s time to take it up a notch here on the Cancerbus. I’m now four solid years into blogging and my fifth cancerversary since my metastatic breast cancer diagnosis in March, 2015. Naturally for my personality in order to write this blog with more rigor, I’ve turned to educating myself.

One educational direction is through other people’s personal essays. I’m also reading up on how to touch more people through engaging with the cancer and poetry community. As a result, I’m commenting more often other blogs I read. It’s a risk to be certain, and as such, I step on my proverbial tongue at times.

When I write up a post, my somewhat warped sense of humor percolates up, and any self importance sinks down in the word stream. It’s the part of the art, the crafting of the essay about a weighty topic as cancer is, to create a tone that’s conversational feels right to me. The tone of my blog probably appeals to some and not to others because of the no-bullshit, non-pinkified, lack of “let’s all sing Kumbaya .”

It’s authentic and it’s my story without flowery effluvium, little self pity, and I hope no need for sympathy. Words either flow or they don’t. Blogging isn’t easy. Responsible for my truth, it’s also not for the purpose of emotionally abusing my readers. If it’s purple and persimmon pretty sunsets you want, you arrived at the wrong web address.

Perhaps too late and impervious to the needs of other bloggers I’ve committed a faux pas or two by commenting much in my same voice. To write otherwise would feel disingenuous. The endangered species of the personal narrative co-exists awash a sea of me-too.

Comments bubble up from the dark waters of “atta girl” and “you got this” and “how beautiful (sad, unfortunate, wonderful) your situation.” The depth of commentary reveals the time a reader takes to try and comprehend even my more lachrymose posts without turning away. My goal never included becoming the most popular or beloved. Instead my decision seemed right to me: to cobble together the rough stones down in a path to the truth of grief, death, side effects, the pain and it’s remedies, loss of love, family and friends, arising from a disease and it’s discontents.

Sometimes it’s a very difficult path to lay. Even the photos can become hard to look at but harder to turn from looking away as in my post: Bone Deep: the painful reality of metastatic cancer.

Context for content(ment)

Recently after commenting on that post, of which no background for what despair this person had come to at the end of their treatment options. I felt near obligation given the missing history of the persons metastatic cancer and what treatments they’d previously endured. My heart sank as I felt them giving up hope. I could only empathize with the information written with no kind of link to a previous post of their journey. Generally I shy away from using the word “journey” in relation to MBC, the word most used by kinder, gentler blog writers.

My contextualization of metastatic disease co-mingles help in two ways:

  1. Plain, black and white discussions of all the experiences from the ugliest fleur du mal to the most heart felt and touching so there can be a personal connection between us – you and I, subject and object, reader and writer. Whether or not the reader had or has cancer should not matter, since it’s the experience of the human condition in which I strive to participate not only of terminal illness.

  2. Easing the loneliness among my sisters and brothers with metastatic cancer has always been the goal of starting the cancerbus.com. It may not help all readers. However given some of your encouraging commentary, your words fuel my desire to continue week after week.

Alone or lonely?

There’s a peace in solitude yet an anguish in loneliness. I suppose the imposition of solitude with cancer feels the loneliest of all. At that very moment you need all the support you can find, you find yourself isolated even in large crowds. No one can understand whose life is without disease. Dis-ease. Taken apart the word disease explains exactly what causes our loneliness. It’s not being at ease in our own bodies turned against the souls who resided within.

This is why I write, to ease the loneliness of metastatic cancer. To find kindred spirits out in the ether. And so that said, if I happen to meet you through your words probably written for much the same reason, please take my comments as they’re meant. A way to reach you in your writer’s space from one mind to another and sketch you a hug in the way that I’m lucky enough to find comes easy to me.

I’ll write you a love song to celebrate our lives, together yet apart. We have more than disease in common. We love life and want to hang on as long as possible, with those like ourselves who have death beating down our doors. Perhaps with more strength of numbers it can’t get through quite as fast, since loneliness creates a weaker immunity and allows our disease to win over our minds and not just our bodies.

The Impeachment of a Comic and a Lose for Medicinal Laughter

Louis C.K. as a Sacrificial Ram in a spectacle-crazed narcissistic society

I need laughter. A self-prescribed medicine that does me wonders and there are very few comics who leave me in stitches of the good kind; not unlike having “the good kind of breast cancer.” As I write here in California, my healthcare costs rise with the sun, day after day, along with my pulse rate. The expenses to treat my terminal case of incurable cancer continually rise higher as a result of the current stupid administration run by a pussy grabbing, verbally abusive, somehow illegally elected president of a society looking for sacrificial mutton chop to gnaw on publicly. And without the right to a defense by a legal system in short supply of honest practitioners.

Memory strikes at the strangest of times. Thinking back about a dozen years ago, in a corporate building in the heart of Sunnyvale, sitting in my now gone office and executive technology strategist career, I typed up an opinion piece for our blog on customer experience about Louis C.K.. The piece centered on retaining artistic freedom, one brave person at a time, thus creating room for great experiences. Louie controlled his channels of distribution for recordings of his stand up shows and I was elbow deep into intellectual property rights at the time. The days right before Net Neutrality was enacted by the FCC (recently dying a whimpering, bleat of a death in the same public works department at the bequest of our aforementioned president and deceitful grabber of pussy.)

Louis publicly, though not rudely, turned away from the Machine as the Machine continued churning out cookie cutter emoji shit piles of same sounding jokes. Mr. C.K. killed with his brand of self-deprecating humor for us to feel a bit better about our own shame and small mindedness.

This same man is temporarily finished with a career, since he got the hook off stage for masturbating in front of several women. He didn’t cower and deny it. In fact as the proof of his obscene behavior towards the victims became public, we can recall he allowed all of us to peep through a window into this behavior in nearly all of his stand up routines. Comedians absolutely need attention, or they’d pick another career. But attention to alleviate deep melancholic sadness, some with deep depression, and the loneliness of their lives splayed out for us, well…like a Skype call with a guy crying as he masturbates to porn. Our own loneliness is reflected in their very presence by our own entertainment choices; we need to laugh at someone else’s misery. I think my own mortification lies somewhere between public hypocrisy and the bullshit people believe to have come from the real deal, no questions asked. Lest we forget our “elected” POTUS, who himself is a vagina pinching bag o’ wrinkly combed over Dorito dusted testicles.

Yet my ginger headed comic handled the situation as peacefully and thoughtfully as one could, with regret and a promise to listen, not to talk uncensored, open loop and without a self correcting blue pencil, as he enjoyed doing prior to public humiliation. However, I hear no discussion taking place between the sexes, only silence and one way monologues at the bobble heads reporting the now fake media and news.

To listen after a career spent providing some of the neediest of us with soul saving laughter, Louie C.K., approached this situation without denial of his actions and an apparent understanding of his responsibility for the situation. His responsibility is that of anyone who’s viewed from the bottom of the ladder as part of the desirable star making comedy higher ups. It was in these women’s presence, in the glow of their admiration of his comedic power, to hope that by watching his testicular spectacle, it would launch their careers from the bottom of the ladder from which the man himself once hailed.

So now selfishly I, who needs laughter to heal my aching body each night, am punished for his generally unconcerning, sexually self consensual, and slightly weird actions.

Yet, as a woman, even under the influence of two knockout drugs slipped into a drink by an unnamed investment banker who tried to make off with a little of my CEO poon, I said absolutely not. And he didn’t. He wound up with a thousand dollar hotel bill, a very remorseful call to my then fiancée to tell him personally why I was there, and a very embarrassed early departure.

I say to these women – if raising several million dollars to fund a 2,500 person payroll that week wasn’t worth me allowing a disgusting troll to molest me, then you could have slapped your own douchebag and walked out of the room while blowing a whistle then and there. We are free to go, lucky for us, without a hand on us and tell someone or even get psychological help for the man who tried to jack off in your presence as a way to stop it from happening again. Strength lies with those who have courage to speak up, and even do it privately if there’s concern about the future of your own careers. I hope you all made it on your own talents and did not skate upon the frozen pond of masturbational output of a depressed yet entertaining stand up artist and comedy writer.

So many men of vastly more power than his own live in a state of Denial – I believe it may become the next territory of the United States like Puerto Rico. That’s a state where power and greed align like Venus and Mars, along side sexual abuse and the fossil-fueled decay of western civilization. With the pretense of their rights and without understanding of the depth of pain of the words they shared years later and personal corrosion by public influence upon another very insecure man and his family, including his children. Then and now I say these young women’s desires to become the next of the famous, far outweigh the currency they now feel denied of receiving by rising on the heels of the heavyweight comic. His very sad, but not very deplorable actions showed the tears of the proverbial clown. The accusers’ own greediness sits shelved, some set aside with dreams of winning a Golden Globe, a Grammy, aPalm D’Or…

I pay my attention to victims of Harvey Weinstein, Woody Allen, Bill Cosby. I pray for the broken dreams and hearts of those nameless and faceless women who were used and abused by the studio system in the 40s and 50s long forgotten and hardly acknowledged.

Louie knows his own strength, certainly. I don’t know him personally, yet his raw comedy brings up a certain kind of unknown/ known for me. Stand up comics, actors, writers, especially exceedingly talented ones, still put their pants back on just like us simple folk. They screw up, just like us. They jack off, too. Were all of the same stuff, no one better than another, known or unknown. His victims created another victim in a way, because an accuser’s word in the spectacle of public unconsciousness, wields a broad sword attacking a guilty until proven innocent person, like the popular opinion’s power of influence. Influence that provokes anger and raises the temperature of the our citizenry, sparked and already burning up by the fires of philosophical division.

We must now look for a target somewhere or we might just explode a load of our own sputum all over ourselves, rather than a depressive comedian’s T-shirt. How did the case rest without a conviction and with the sacrificial ram leaving the stage with more guilt and shame than what drove him to propose the naughty-ish script? Would anyone venture to guess or to even take his side of the court of majority rules opinion?

Please be my guest and comment below, as it occurs to me I should at least ask you, the unseen others, if I’m going to continue write such self-pleasuring masturbatory blog posts, what you really think. I think too many people are not going to say what we’ve all thought (admit it) – they could have just gotten up and left the situation. It’s not their fault by any stretch of the imagination, but they were not held down, nor were they his hostage. There I said it and I am a woman, too. Y’all thought it but you didn’t say it. I suppose we can now return to the spectacle that is our current POTUS already in progress. Lord, please help us all.

(And, by God, why can’t we all have a Nielsen presidential ratings “impeach” button on our $200 75” plasma TV sets’ remote controllers?)