Beat Breast Cancer

Ajay Dhakal, MBBS — A Warning

August 4th, 2022

Not everyone is pleased with this blog. A couple of women, one of whom counsels breast cancer patients, have expressed outrage, which you will see as you read through these entries. But most of the commentss I have received are supportive, and I am grateful for those women who have taken the time to write to me. At least three of them decided to go elsewhere for their cancer care, and one actually canceled her pending appointment!

This blog exists to encourage you to choose your care wisely and avoid any doctor — like this one — who can’t or won’t provide quality care. The clues will be there at your first visit — if s/he is inconsiderate or brusque, brushes off your questions with vague or no answers, asks you what you did to get this cancer (he actually asked me that!), and/or hurries you out of the office, chances are the care they provide will be inadequate or even dangerous. We know that breast cancer can kill. . .but so can incompetent doctors — I learned that the hard way.

I was diagnosed with breast cancer on January 25, 2021. “Breast cancer” — those words paralyzed me with fear.

But only for a little while.

Once I realized that I wasn’t ready to die, I was ready to fight. Fortunately, I found immediate help at the Elizabeth Wende Breast Center in Henrietta, NY. This facility employs competent and compassionate caregivers and support staff. They did my entire workup — diagnostic mammogram, ultrasound, MRI, and biopsy — all in the same day, something the local hospitals take weeks to accomplish.

It was cancer, no doubt about it. EWBC sent me to an excellent surgeon at the Pluta Cancer Center run by the University of Rochester (NY), Jessica Gooch, MD, who performed a partial mastectomy and sentinal node biopsy. These revealed a node-negative stage I intraductal carcinoma with medullary features. She then referred me to a medical oncologist, Ajay Dhakal, MBBS.

(From https://www.urmc.rochester.edu/people/112361746-ajay-dhakal, August 2022)

Based on oncogene testing, Dr. Dhakal advised a short course of taxane chemotherapy, which he indicated would give me an excellent chance of living a long, disease-free life.

It would have, had he known what he was doing.

But he didn’t.

However, I didn’t know that. I trusted him. I bought some hats, shaved my head, and arrived tearfully but promptly for my first chemo treatment on March 11, 2021.

The chemo went well. I rested at home and waited for the legendary nausea and vomiting to begin, but it didn’t. Aside from some mild fatigue, I felt fine.

That is, until a few days later when I developed the sudden onset of severe abdominal pain and a fever of 103. I couldn’t eat anything without having an urgent liquid bowel movement only moments later.

Something was terribly wrong.

I called Dr. Dhakal, but he was unfazed. “This is only day 8,” he said. “Wait 4 days. By day 12 you will feel much better.”

However, I didn’t feel much better. The liquid bowel movements no longer occurred because any fecal matter produced by my bowel returned as vomitus. I got conflicting advice from the nurses at the infusion center, who all agreed nonetheless that I should “hang in there,” which I did until the prescribed 4-day wait ended on March 21. Two phone calls to Dr. Dhakal went unanswered, so I asked my neighbor to take me to the emergency room.

She took one look at me and called the ambulance.

I have only a few brief, disconnected memories of what happened next. I remember screaming in pain. I remember some foreign-looking doctor talking at me but I don’t remember what he said. I remember bandages piled so high on my abdomen that I could not see over them. I remember someone telling a group of others that “she’s assisting the respirator but let’s keep her on it for one more day.” I remember excruciating pain whenever the nurses came in to turn me; I was too weak to turn myself. I remember a tear rolling down my face but couldn’t lift my hand to wipe it away.

Thus began my recovery from typhlitis (neutropenic enterocolitis). This uncommon, life-threatening illness is a known complication of taxane chemotherapy, specifically docetaxel. If allowed to progress (as mine was, thank you Dr. Dhakal) typhlitis will attack the ileocecal junction (where the small intestine joins the large bowel), causing a hole (perforation) that spills dangerous toxins into the abdomen. Survival rates are in the 50-50 range, worse if the disease progresses to perforation.

Which mine did over those 4 fateful days. Thank you, Dr. Dhakal. You’ve been such a help.

The typhlitis destroyed the ileocecal junction and a good portion of my large and small intestine, causing massive infection, respiratory failure, and acute kidney injury. I required 2 life-saving surgeries, several rounds of potent antibiotics, and a ventilator to breathe for me when I was too sick to breathe on my own.

Again, I was one of the lucky ones. I survived. Most people with perforation don’t.

Recovery was slow. The trauma surgeon, Michael Vella, MD, was phenomenal. He saved my life by resecting the necrotic bowel and placing an end ileostomy.

Now, lots of people live with ostomies, sometimes for the rest of their lives, but I couldn’t bear to touch mine. I couldn’t even look at it without gagging. It took weeks of expert medical care from dedicated, patient, and well-trained others along with an additional hospitalization before I could penetrate that psychological barrier created when Dr. Dhakal refused to see me and instead advised that I “wait 4 days.”

Eventually, though, I did learn how to maintain and care for the ostomy. I even ordered the supplies myself, at the bargain price of about $300 per month.

Thank you, Dr. Dhakal, for this unique shopping experience. It’s money I likely would have wasted otherwise. . .you know, on things like utility bills. Or food.

Eight months later in November 2021, I was healed enough to undergo ostomy takedown, performed by the very skilled and very trusted Dr. Vella. For me, it was a difficult but much welcomed surgery. I looked forward to moving on and forgetting Dr. Dhakal and his sorry, sordid incompetence.

But wait, there’s more!

Ajay Dhakal School of Medicine. . .?

The 3 surgeries had each required an open approach. These being done in a relatively short period of time resulted in loss of abdominal domain with the development of multiple large herniations. I needed a fourth surgery to reduce the hernias and lyse the adhesions, which Dr. Vella carefully and skillfully performed on July 20, 2022. He then turned the surgery over to his colleague, Derek Bell, MD, who created bilateral rectus abdominus flaps to hold my abdominal contents in place. These two surgeons accomplished an excellent repair during a tedious 3-hour surgery.

Thank you, Dr. Dhakal, for not caring whether my guts fall out. And thank you, Dr. Vella and Dr. Bell, for making sure they don’t.

I am currently recovering from this last surgery. The staple line, like the others, extends from just below the tip of the xiphoid down to the symphysis pubis. It’s scabby and ugly but still healing. One of the JP drains was removed at my last followup visit, but the other continues to collect excessive fluid produced by the injured tissues. As of August 4, almost 3 weeks post surgery, I still empty about 25 ml of it several times a day and at least once in the middle of the night.

Thank you again, Dr. Dhakal. Your ignorance and incompetence has provided a novel opportunity for such extensive scarring that I can never wear a bathing suit lest I frighten little children (and probably some adults as well).

Given the results of all this Dhakal-inspired care, I am missing about a third of my lower GI tract. Whenever I eat, I have discomfort in my mid abdomen, so I consume smaller, more frequent meals in attempts to lessen it. My diet is limited to foods that will not stress my shortened bowel. I drink water almost constantly to replace that lost by inadequate bowel function. . .but not too much lest it interfere with electrolyte absorption.

I can’t wait to return to “normal,” whatever (and whenever) that might be.

Once again, thank you Dr. Dhakal. For everything. But can you quit helping me now? PLEASE?????

ALL of these surgeries, ALL of this angst, and ALL of this pain could have been avoided had Dr. Dhakal listened to me rather than dismiss me as some sort of chemo newbie who couldn’t take the side effects. No one expects him to predict who will or will not get typhlitis, but as a licensed, board-certified medical oncologist, he should have known how to diagnose it. He should have known that its symptoms differ markedly from those produced by chemotherapy, both in onset and character. At the very least he should have known that post-chemo fever demands prompt investigation. But he didn’t know any of this — or if he did, he didn’t care. Thankfully, the ER residents did — because THEY are the ones who diagnosed me. THEY knew that typhlitic symptoms and fecal vomitus are ALWAYS medical emergencies that simply cannot “wait 4 days” — and they acted accordingly, which is why I remain on this side of the grass.

But not Ajay Dhakal. No ma’am. He must’ve been absent the day they taught all that in medical school.

In fact, I learned (much later (in February of 2024) that an MBBS is an undergraduate degree available to anyone with some money and a grade average of C- (73.01). THAT is how “Dr.” Dhakal (barely) graduated from the Kathmandu College and Teaching Hospital — and he was stupid enough to brag about it on his LinkedIn page! (If only I had only known this before I trusted him!) So, I suppose it doesn’t matter if he missed a day or two of the undergraduate training, if the best he could do in a second-rate, 4-year school is C-. I am lucky to be living proof of his ignorance — I am sure, with such a stellar C- academic record and abysmal patient care practices, he will never be able to render anything resembling quality care.

But I digress.

So thank you, Dr. Dhakal, for creating, ignoring, and then donating my near-death experience to several alert ER residents who put their excellent training and education to work and thus saved my life.

Obviously, Dr. Dhakal doesn’t care about any of this. His arrogance protects his ignorance and excuses him from any and all consequences of it. Clearly he failed to perform his medical duties, but I suspect that, even if he was clever enough to distinguish a typhlitic patient from a hill of beans, he wouldn’t do a thing about it anyway, other than tempt fate by prescribing a dangerous 4-day wait.

Oh, did I say “arrogance?” Yes, I did. . .because this is the response I got when informing him of my diagnosis: “This has never happened to me before.”

Well, I beg to differ. This did not happen to YOU, you moron. It happened to ME. BECAUSE of you.

I did seek legal remedy but to no avail. You see, it is virtually impossible to for anyone in the profession to testify against a colleague. They don’t care about malpractice — all they care about is protecting each other — you know, “there but for the grace of God go I.” Unless, of course, they are swayed to the side of truth by a hefty chunk of change. . . which I don’t have and never will. The extensive critical care and surgeries I required have resulted in a large bill due and owing the UofR — I paid less than that for my house!

Thank you again, Dr. Dhakal! And thank you to the screwed-up legal system that protects you. And thanks, too, to the good ole USA, where ObamaCare does its best but cannot possibly keep up with the obscene profits that corporate medicine extorts from each and every patient unlucky enough to require its care.

Reporting him to UR Medicine Quality Control was equally futile. Their agent in the Patient Relations Department merely confirmed the symbiosis that exists between the institution and Dr. Dhakal. She easily absolved him of any and all negligence simply by blaming ME. It was my fault because I expected too much. It was my fault because I didn’t call him enough. It was my fault because I didn’t explain my symptoms enough. It was my fault because I wasn’t good enough — I don’t need validation, I need “psychiatric care.”

Thank you, Judy Barrett, BSN, for your shameful, victim-blaming diagnosis that relieves Ajay Dhakal of any responsibility arising from his callous, life-threatening incompetence — and ignores the long list of (over)charges that UR Medicine billed me for the privilege of saving me from same.

Is this why Ajay Dhakal remains on the UR Medicine staff? Because the poor-medical-care-requiring-more-medical-care he provides increases their bottom line?

Well, now, just wait a minute — maybe Judy’s right. Maybe I am crazy. But if so, who does she think made me this way?

What I would like to know is this: What was Ajay Dhakal doing when he advised me to “wait 4 days?” Was he having coffee with his wife or coworkers? Watching TV? Shopping at the mall or Trader Joe’s? Joking with friends? Playing golf? Making Facebook comments about Nepal’s tiger population? What makes any of these things more important than my life?

(I realize <<sigh>> that rhetorical questions like these might come across as somewhat sarcastic. . .)

I have every reason to believe that these and other triviata will remain more important than the lives of any of the breast cancer patients this man continues to see. This is the narcissistic power that results when ignorance is tinged with arrogance. This is why there is something called the Dunning-Kruger effect. This is why Ajay Dhakal gets away with near-murder — and maybe even murder.

I write this essay for one reason and one reason only: To do what Marcia Krebs, M.D., Chief of Medical Oncology at the Pluta Cancer Center, Jonathan Friedberg, M.D., M.M.Sc. at Wilmot Cancer Institute, and UR Medicine’s Patient Advocate Judy Barrett, B.S.N., all refuse to do, and that is to alert other women in the Rochester, NY area seeking breast cancer treatment to the dangers posed by Dr. Dhakal’s carelessness and incompetence, which the University of Rochester nonetheless promotes as its trademarked “Meliora” and “Medicine of the Highest Order.” In my experience, no woman can safely entrust him with their cancer care because he doesn’t see them as patients — they are his hapless victims and he the innocent (but narcissistic) Good Samaritan. He doesn’t cause them any problems; THEY are the ones who cause problems for HIM. That’s why things like typhlitis happen to him — and not his patients.

I am disgusted every time I see that ignorant smirk on his face (From https://issuu.com/urmc/docs/ctsi_3728_ur_ctsi_annual_report_2021_2022_issuu)

As long as UR Medicine and its associated cancer centers continue to employ dangerously incompetent, negligent, arrogant, careless, and undercredentialed physicians like Ajay Dhakal, I will continue to warn other women to avoid them. His next victim may not survive the typhlitic odds, in which case both he and UR Medicine will have blood on their hands.

Please don’t let it be yours.
How to Choose a Doctor

April 15th, 2024
January 31, 2024 Even though I wrote this months ago, I am pushing it up on the timeline. There is important information here that can help you avoid many of the mistakes that I made. Some of mine resulted in very serious and near-fatal consequences — I don’t want that to happen to you!

Choosing a doctor should be a no-brainer: You consult your computer to find a board-certified physician within <<#>> miles of your residence who treats your special problem, and then you call to make an appointment.

Easy peasy, right?

WRONG! WRONG! WRONG! WRONG! WRONG!

If you don’t believe good medical care is hard to find, just read some of the entries I have posted on this site.

I developed this plan because, after making two terrible mistakes, I want to be well-informed and confident in choosing a qualified, trustworthy doctor.

I hope this process will save you time and steer you from careless providers whose ignorance could cause great harm. And if you are looking for a new physician after having been injured by a lousy doctor or his/her staff, these suggestions might help you avoid mediocre practitioners who seem okay at first. . .but you will soon discover they ignore their own Hippocratic oath — primum non nocere (first do no harm) — with inadequate care and by staunchly defending their ignorant colleague(s) and demanding that you do the same.

Here is what helped me:
1. Not all board-certified physicians are good physicians. Remember that 50% of all medical students graduate in the bottom half of their class, and that includes classes at such prestigious universities as Harvard and Johns Hopkins. Board certification will not reveal if your doctor was one of them. So, before choosing a physician,
  - Look online at your state licensing agency to see if there are any complaints lodged against your prospective choices. (If your doctor has practiced in other states, be sure to check their licensing agencies as well.)
  - Make a note of what colleges and schools they attended. Many of the schools located outside the United States, especially those in the Carribbean, India, and in other struggling countries, accept low MCAT scores and low GPAs. In my opinion, this is less trustworthy than a degree obtained from most American schools, which have much higher standards.
    
    It goes without saying that any provider you choose should have a good command of the English language.
    
    Sometimes you may see the initials “MBBS” rather than MD following the physician’s name. This denotes lesser training obtained at a foreign university or hospital. The MBBS requires only undergraduate studies and not the more stringent postgraduate studies mandated for MD candidates.
    
    Of note, Ajay Dhakal, the Rochester, NY doctor whose ignorance nearly killed me, has an MBBS degree. I later found out that he graduated from the Kathmandu Medical College and Hospital. . .with a grade 73.01 percentage. This translates to a C- with a GPA of only 2 , which is wholly insufficent by American standards.
  - Also, be wary of foreign-trained doctors for a second, equally important reason: Some cultures inherently devalue women. Ajay Dhakal, for example, is from Nepal and my next oncologist from India. These countries are among those that degrade women both in law and society. The resultant cultural bias contributed, in my opinion, to the lousy care they rendered.
    
    Cultural bias is not limited to male practitioners, Female doctors may do this, too, as my experience with Shipra Gandhi, MD, proves (Buffalo NY).
  - Don’t forget to check any social media pages the doctor and/or institution has. LinkedIn is a good one; that’s where I discovered that Dr. Dhakal barely graduated from the Kathmandu College and Teaching Hospital.
2. Look at how long your candidates have been practicing. Education matters, but so does experience.
  - Have they consistently maintained a local office, or did they move from place to place in a relatively short period of time? It might be safer to choose the physician whose practice history does not suggest s/he was running away from something unpleasant.
3. Ask your friends, relatives, and other people you trust about who they see for their own medical care.
  - Listen to their replies. Does what they say make sense to you? Would you be satisfied seeing that doctor, given what you have learned?
  - Read every online review that mentions the doctor and the institution with which s/he is associated. Look especially for the one-star reviews — that is where you will get the most honesty.
    
    BTW, I know of a local orthopedic practice that limits reviews to those with five-star comments, so be careful if you find superlative ratings from every single reviewer. (I’m thinking David A. Carrier, MD of Rochester NY here and also Joel McFarland, MD, a gastroenterologist also from Rochester NY.)
4. Make a list of prospective candidates and then make an appointment to INTERVIEW each one (if you are already receiving care, tell your insurance about this second opinion, and they will pay their share for the visit).
  - When you call for the appointment, how was your interaction with the staff? Did the phone ring incessantly before the receptionist got around to answering it? When you arrived for your appointment, did you end up watching the staff play on their phones while you waited for them to acknowledge you? Lousy doctors are prone to hiring lousy staff, as Dr. Surinder Devgun’s choice of a receptionist proves (Rochester, NY). If making the appointment was difficult or if the staff were curt, neglectful, or insulting, chances are the doctor will be, too.
  - Ask questions about your disease. Ask how they would treat it. Ask about what ancillary services they offer. If your doctor dismisses your questions or answers vaguely, reluctantly, or not at all, cross that name off your list.
  - Ask about their availability — will they answer your calls and questions, or will they schlep you off to a nurse? Or to a medical student? Or do you get the feeling that they might ignore your call or email altogether? <——a tactic preferred by Ajay Dhakal, which delayed the diagnosis of typhlitis until it had already perforated and become near fatal.
  - And above all, ask questions about what they expect from you, the patient.
  - If you do not get clear, understandable answers or if the doctor seems impatient or inattentive, or if s/he seems patronizing in any way, thank him/her very kindly, cross that name off your list, and move on.
5. If you have been traumatized by poor medical care to the point of PTSD, please use these same suggestions in choosing a therapist. This is just as important as choosing a medical provider.
  - You don’t need to be told by any counselor what Holly Anderson (Breast Cancer Coalition of Rochester) told me: All your problems will go away if you just shut the f*ck up. That’s not therapy; that is bullying.
  - You also don’t need to be told that you are making a mountain out of a molehill or that your near-fatal (in my case) experience doesn’t matter <—-another Holly Anderson tactic that protects the perp and blames the victim.
  - More importantly, you certainly don’t need to be convinced that it’s all your fault because you “have a bad relationship with your doctor.” This is a generic blame-the-victim approach that covers up many iatrogenic sins, and once it’s in your chart you will forever be judged accordingly, regardless of whether it is true or untrue.
  - Nor do you need any Freudian advice that blames you simply because you are a woman. Avoid wasting your time, money, and self-esteem on any Freudian-trained therapists.
  - Even though you were victimized by a terrible physician, you are not a victim. None of this was your fault in any way, and you can find ways to manage the trauma. Your therapist needs to reinforce this. S/He should help you find ways to deal with the damage in a healthy way and otherwise help you improve your ability to enjoy life.
6. If you were traumatized by substandard medical care, do pursue whatever remedies are available to you.
  - You may not be able to sue, even if your experience qualifies for legal redress, because few lawyers are willing to take on the expense and time necessary to bring a lawsuit to conclusion.
    
    The big problem here is finding a doctor willing to testify against another one. It doesn’t matter how egregious the malpractice is — doctors cling to each other like a pitbull clings to a puppy . . .you know, “there but for the grace of God go I.”
  - Nevertheless, you can and should write to the state medical licensing board and the specialty association that certified the doctor.
    
    You may not get any positive responses from the regulatory boards nor will the correspondence will be made public, but it will remain in the physician’s file for future professional reference — like, when they apply for malpractice insurance or when they finally do get sued for their ignorance.
7. Be sure to write an online review. These are read by others seeking medical care. Write one good, solid review, and post it on as many web pages and search sites as you can find.
  - If the doctor’s or institution’s page won’t accept your honest review, then ignore them and use open websites such as Yelp and Google; also, try posting on Facebook, X, Instagram, and other such pages. Don’t forget that provider search pages such as Healthgrades also accept reviews, and these get a lot of traffic.
    
    It’s worth noting that the doctor/hospital will be notified whenever a review is a posted on public sites, so even if your provider won’t listen to you, s/he will read the review — and so will many, many others who are seeking quality care.
  - Sometimes this is very hard to do because we’ve been so hurt and traumatized. Just keep your review short, to the point, and don’t succumb to your emotions. It’s fine to say “I would give this provider no stars if possible,” but don’t namecall, threaten, or otherwise jeopardize your message with an emotional tirade about the injustice of it all — readers will know it was unjust; otherwise, you wouldn’t be writing such a review.
  - Stick to the facts: This is what the doctor did (or didn’t do), this is how it fell below accepted medical standards, and this is the negative consequence of that conduct.
8. Don’t bother with petitioning the hospital’s Quality Care Committee, Peer Review Committee, or Patient Advocacy (if you have written an online review, it will end up there anyway). These offices were not established to help the patient; instead, they exist solely to develop strategies to avoid lawsuits. Your information will be used for that purpose and that purpose only.
  - Their job is to spin your story until it absolves the doctor and blames you. A couple of examples,
    
    Judy Barrett, BSN, Director of the University of Rochester Medical Center’s Quality Control office, wrote me a two-page letter describing exactly how she protected Dr. Dhakal. Even though his ignorance nearly resulted in medical murder, he was completely absolved and wasn’t even disciplined. . .but I was told that it was my fault because I didn’t call him enough times and didn’t relate my symptoms to him properly (what part about fecal vomitus and a fever of 103F did he not understand?).
    
    The Patient Advocate at Roswell Park (Buffalo NY) took a different approach. Although she is not medically certified, she “corrected” a patient-care problem by creating a totally unworkable treatment plan. It wasn’t designed to monitor my cancer or improve my health, it was designed to enable Shipra Gandhi to continue providing the barest of mediocre care with impunity, which she did — until I put a stop to it by firing her.
9. Don’t be intimidated. You deserve high quality care — you don’t need to be aggravated by a doctor who can’t or won’t provide it.
It’s time that WE, the patients, get what we pay for. These doctors, PAs, nurses, and other providers should treat us with the respect and dignity we deserve. And if they can’t or won’t do that, they deserve to be dropped like a bag of rocks.

It may take some time to find the right doctor. But it is worth all the time it takes.

Good luck!!

PART 2: The plan works!

February 20, 2024

This time I didn’t choose the doctor with the earliest available appointment. I learned (the hard way) that there are reasons why some doctors have lots of appointment time — and the reason why my first doctor, Ajay Dhakal MBBS, had so much time soon became blatantly obvious: Hopeless, near-fatal ignorance.

Like my therapist says, someone always graduates at the very bottom of their class. And now we know who had that honor in the class of 2009 at the Kathmandu Medical College and Teaching Hospital (Nepal). That would be Ajay Dhakal, MBBS, from which institution he attained stellar C- marks and graduated with a grade 73.01 (in Ameri-speak, that’s squeaking by with a GPA of 2). How I wish I knew this BEFORE I trusted him as my oncologist!

The dangerous Ajay Dhakal MBBS. Doesn’t it look like a mugshot? Well, it’s from his LinkedIn page (https://www.linkedin.com/in/ajaydhakal/). . .but it still looks like a mugshot.

I didn’t walk, I ran to a great big research hospital, believing that great big research hospitals hire only the best physicians. I learned (again, the hard way) that they don’t. Shipra Gandhi, MD, who works at the great big research hospital I ran to (Roswell Park Cancer Institute in Buffalo, NY) doesn’t actually do much patient care. She hides behind her “team,” which does it for her.

Shipra Ghandi MD, trying very hard to smile. Take a good look at her because once you are her patient you won’t see her. You will see “the team“ instead (but will pay physician prices for the privilege). From https://medicine.buffalo.edu/faculty/profile.html?ubit=shipraga

It took me about a year to discover “the team” is short on knowledge, abrupt with care, and arrogant in their refusal to properly chart office visits. I then found that “the team” and Dr. Gandhi shared rigid, generic notions about the course breast cancer should take; unfortunately, my disease and medical history did not conform to any of these. So, they struggled to make them conform. They consistently minimized, trivialized, denied, and otherwise sanitized both my medical profile AND diagnosis to satisfy their one-size-fits-all care plan. They refused to keep me informed and dismissed my questions. When I sought advice from the Patient Advocate, she didn’t help me; instead, she mollified Dr. Gandhi and “the team” by forcing me to accept a “don’t ask, don’t tell” plan of care that effectively rendered any interaction with my providers impossible and endorsed “care” so minimal that it could easily be accomplished during a three-minute phone call.

Which was horrifying — not as debilitating or dangerous as Dr. Dhakal’s special kind of “care,” but horrifying nonetheless.

So, it was time to go doctor-shopping once more.

This time I wasn’t running from a doctor whose “personal care” included near-fatal ignorance. This time I wasn’t mistaking bull**** from an invisible doctor for medical care. Although the care offered by Shipra Gandhi, hiding behind her “team,” was thoughtless, arrogant, brusque, judgmental, and deficient, it wouldn’t kill me — not right away, anyway — so I could invest some time in finding a competent, knowledgeable, and trustworthy doctor who would not blame me for my medical status or distort it to fit into a predetermined treatment plan or ignore the parts they didn’t like. This time I could take all the time I needed to find that physician.

So I did. Using the procedure outlined above, I will chose an oncologist — hopefully for the last time.

Today (February 20, 2024) was my first second opinion. The doctor I saw speaks English. She is unencumbered by a culture that has a Dalit caste — persons deemed untouchable — or practices female infanticide or requires women to cover their hair and walk two steps behind their husbands or considers the left hand “impious.” She was thorough in her workup and forthcoming with her explanations. She listened intently to what I had to say and asked me appropriate questions. She outlined a personalized plan of care that puts the Roswell ” team” plan to shame. In comparison, I am shocked that I put up with that bull**** for so long!

I am hopeful that I will find a good medical relationship. But if it doesn’t work out, I can always start over. . .because ultimately I am the one who must look out for me. I am my own confidant and advisor.

PS Dr. Gandhi — you’re fired.

So is your “team.”

Especially Alison.
Breast Cancer Coalition Seminar

October 15th, 2022
(From Breast Cancer Coalition of Rochester, October 2022. Image no longer available online).

I attended this Zoom seminar (October 13, 2022, 1:00 p.m.) and listened to all the presenters — including Ajay Dhakal MBBS as he outlined current therapies for women with metastatic disease. The moderator introduced him as “someone who delivers personal care to his patients.”

Well, as a victim of that “personal care,” I wanted to hear what he had to say.

His Power Point presentation consisted of treatment statistics cropped from a couple of textbooks. I found them interesting, but I wonder how much they might or might not influence his treatment plans, since the “personal care” I received from this man was devoid of statistics. He clearly ignored the ones that define the presenting symptoms of typhlitic patients as well as others that predict their shockingly low survival rates. So, how would statistics help him devise appropriate medical regimens when he ignores the ones that interfere with his “personal care?

(From https://13wham.com/health-matters/gallery/battling-breast-cancer-is-personal-for-local-doctor-11-09-2015-184350835?jwsource=cl), October 2022)

The moderator of this conference, Marcia Krebs, MD, is the Chief of Medical Oncology over at Pluta Cancer Center. As such she should be quite familiar with Dr. Dhakal’s “personal care.”

She gave a short speech in which she disclosed her own breast cancer diagnosis.

I wanted to ask her some questions.

However, I was unable to do so since I was removed from the meeting during the Q&A period. Not surprisingly, an emailed query to Holly Anderson, director of the sponsoring organization (Breast Cancer Coalition of Rochester), remains unanswered.

Holly Anderson

(From https://bccr.org/wp-content/uploads/2022/06/Summer-2022-Newsletter-web.pdf)

So, I sent my questions to Dr. Krebs herself. After establishing my history, I asked her this:
- Would someone who is unable to complete chemotherapy secondary to typhlitis be at increased risk for her breast cancer to metastasize?
- Since many of the current therapies carry the possibility of intense GI side effects, would the post-typhlitic patient who is missing a significant portion of her lower GI tract be precluded, should the need arise, from receiving such therapy?
- As a practicing oncologist, would you consider fever of 103, sudden onset of severe abdominal pain, and/or fecal vomitus typical of the unpleasant but non-life-threatening side effects of taxane chemotherapy?
She, too, has not replied.

She isn’t the only one to ignore me. I had expressed essentially the same concerns to Dr. Dhakal at my first post-typhlitis followup appointment back in May 2021 — which was also my last. He simply brushed them off: “You’re 70 years old,” he said, “you’ll be dead in a few years anyway.”

That clinched things for me. I was outta there. I wish he had explained at our initial visit how his “personal care” is not wasted on his older patients — I would have immediately sought treatment elsewhere, and this entire typhlitis thing may never have happened. . .but if it did, it most certainly would have been promptly and accurately diagnosed.

But he didn’t, so it did, and thank goodness I now see a real doctor who agrees that I still have a few miles left in me and treats me accordingly, despite (or maybe to spite?) Dr. Dhakal’s callous, near-fatal “personal care.”

In any event, Dr. Krebs’s continued silence does nothing but prove my point. Through it, she embraces and excuses Ajay Dhakal’s blatant incompetence, which has inter alia limited my disease-free future. Furthermore, it carelessly and audaciously indicates her complete agreement with his flippant dismissal of my questions, which remain just as legitimate now — and just as ignored — as they were in 2021.

However, this begs a final question:
- Does Dr. Krebs trust Ajay Dhakal to treat her own disease?
She need not respond, I knew the answer before I even posed the question. Because despite all the protection and support he gets from the medical (and legal) community, the fact is that Dr. Dhakal has been neither re-educated nor disciplined. Who wants to risk undergoing his dangerous “personal care?” — certainly not other doctors! Clearly, they stay away from him for a reason.

It horrifies me that these women who (I assume) are otherwise intelligent and (I hope) compassionate would opt to protect a dangerous doctor with their silence rather than support his victim, especially when they themselves decline his “personal care.”

Or, most likely, victims! With an “s“! I am probably not his first and I certainly don’t expect to be his last. As long as he is held harmless from his substandard conduct, he has no incentive to improve it. None whatsoever.

There is no way to know how many patients he has victimized with his “personal care,” but I am proof that even one is one victim too many. And whether one or one hundred, NONE of them deserve the bias and anger that has been directed toward me simply because I (rightfully) warn the public about a doctor so dangerous that he can kill — or nearly kill — his patients while the hospital that employs him profits thereby. No one deserves to be treated like that — and that, Dr. Krebs and Ms. Holly, includes ME.

Have you no shame??

ADDENDUM, October 15, 2022: I did indeed receive a response this day from Holly Anderson, Director of the Breast Cancer Coalition of Rochester — but only AFTER she read this blog essay. Her vitriolic reply accuses me of being. . .well. . .vitriolic.

She claims that she does not “support” Dr. Dhakal, but the entire email confirms that she does. She finds my “hate-filled” and “disparaging,” reports of his conduct intolerable because he has successfully treated “hundreds of patients.”

My comments are confirmed by experience. Hers? Mere supposition.

She continues by dismissing “your experience” simply because it is “YOUR experience.” Therefore, it is a nonissue, unworthy of discussion.  Oh, she has made her point — since my “experience” affected only me, so she doesn’t care and Dr. Dhakal doesn’t care; therefore, neither should I.

She advises that “no one is suggesting you forgive this physician (or forget)…” What a waste of words! Who can forget being nearly killed? Why even think about forgiving a careless and incompetent doctor who believes he needs no forgiveness? But that, too, is a nonissue. The only real issue, the one that prompted her ugly tirade, was my public discussion of it. She simply will not tolerate my posing questions to Dr. Krebs, telling my story on the ‘net, and/or warning other women of Dr. Dhakal’s dangerous “personal care” because such talk “disparages” and “blacklists” a doctor who has treated “hundreds of patients.” Instead, she hopes that I get over “your horrific experience” by remembering the excellent, life-saving care I received from “another of your physicians.”

(She is mistaken. I didn’t have “another physician” waiting in the wings to rescue me. I received that care in the emergency room — from residents, who were able to promptly and accurately diagnose me in minutes, something Dr. Dhakal either couldn’t or wouldn’t do over several days.)

In any event, what Holly doesn’t realize is that I do remember that excellent, life-saving care — I remember it took four (4) surgeries, three (3) hospitalizations, and Sixty-three Thousand Thirty-eight Dollars and Six Cents ($ 63,038.06). And that does not include ostomy education and care or the physical therapy I required.

I remember it when I suffer debilitating nausea and/or double over with crampy abdominal pain, which sends me running to the bathroom q.10m as my shortened bowel tries to rid my body of something it can’t process.

I remember it as I force-feed myself fluids when blood work reveals dehydration and electrolyte imbalance as the cause for my feeling so unwell yet again.

I remember it whenever I struggle with compression stockings, which I must wear on those days when my shortened bowel can’t handle fluid intake. Otherwise, edema will build up in my feet and ankles.

Actually, it’s hard to forget that excellent, life-saving care and “this physician” who made it all possible.

Ironic, isn’t it, how none of that excellent, life-saving care — and its difficult and expensive aftermath — would have occured had Dr. Dhakal diagnosed me promptly and correctly rather than asking me to “wait 4 days” while he posted Facebook comments about the tiger population in Nepal. Apparently none of this fits the Holly Anderson narrative, which might explain why she fails to acknowledge it.

I shudder to think of the “hundreds of patients” Dr. Dhakal treats — how many of those hundreds has he sickened and nearly killed? Or actually killed? How many are afraid to speak up due to reactions like Holly’s and Dr. Krebs’s? How many new patients will he endanger in the future?

But I digress.

If I strip the anger and accusations from her diatribe, I see that “Holly Anderson, M.D.” has it all figured out. She has cleverly diagnosed my illness as causa sui: “wallow[ing] in your horrific experience,” which is why I “remain miserable.” But no worries! She prescribed a simple (and free!) curative:

Stop talking about it.

Shut your mouth.

Put a sock in it.

Nolite loqui.

Dummy up.

Zip it, stuff it, stifle.

Say nothing. . .

. . . because talking about it is so unfair to Dr. Dhakal.

Of course, she didn’t actually tell me to shut up. Instead, she tells me what to do without actually telling me what to do:

“CHOICE.”

Although she believes “you have a multitude of choices to make here,” she presented only two: I can either speak up (which causes Dr. Dhakal to suffer) or I can be silent (which causes me — and possibly other women — to suffer). I don’t have to forget what happened or forgive “this physician” — all I have to do is make the right “CHOICE.”

In her oversimplified opinion, never speaking about “it” to anybody ever again is the only way to “put this experience behind you and move forward.”

It’s as if my “horrific experience,” much like the Wicked Witch of the West, will melt into nothingness if I throw a bucketful of the right “CHOICE” on it. By persisting with the wrong “CHOICE,” though, I condemn myself to “remain[ing] miserable,” possibly forever!  It’s only the right “CHOICE,” she promised, that I can “enjoy a peace-filled, joy-filled life.”

And so can Dr. Dhakal.

It’s all up to me. All I have to do is shut the f*ck up.

Easy-peasy, no?

. . .in her world, maybe. That’s not how it works in the real world, though, which is where I live. In the real world her strategy is called protect-the-perpetrator-by-blaming-the-victim. That is how you guarantee a “peace-filled, joy-filled life” — but only for the perp. Not so much for the victim.

I’d like to know if she actually believes her own facile synthesis of events that she has neither observed, experienced, nor examined fully. Is she from another planet? Was she dropped on her head as a baby? Is she on drugs? Is she on drugs after being dropped on her head as a baby while living on another planet?

Regardless, her email unwittingly but clearly addresses the question of shame. Her answer? A resounding “no.” She has no shame. Absolutely none.

Dr. Krebs’s own contempt and disrespect is confirmed by her continued silence. However, she is wise to remain away from the keyboard lest she, too, expose her own lack of shame. Her complicity in supporting Dr. Dhakal is simply another brazen example of victim-blaming that allows an incompetent doctor to avoid accountability while he blithely continues “practicing” <—– and I use the word literally —–> on unsuspecting patients. That she declines to be one of them speaks louder than any message she might otherwise convey.

ANOTHER ADDENDUM, October 19, 2022: This day I received a hand-signed “thinking of you” card from the staff at the Breast Cancer Coalition of Rochester — Holly Anderson, director.

Who’da thunk it.

The return address did not disclose the sender’s identity. However, as soon as I realized who it was I tore it into tiny pieces, envelope and all, and threw it away . . . and then washed my hands with hot, soapy water for a full 30 seconds (singing Happy Birthday 3 times = 30 seconds).

Because I was afraid I might have gotten some of it on me.

You’d think they’d have the decency to leave me alone, which is what I reasonably expected back on the 15th when I asked Holly to “take me off your email list.”

My bad. I expected too much.

So, here is a message for her and her entire BCCR crew: Quit sending me your phony-baloney, sippy-sappy cards. I know exactly how you are “thinking of [me]” — it is clearly stated in Holly’s vituperative electronic message. That she/they would feign compassion and caring only 4 days after sending that email is nothing but mendacious and contemptible. Or maybe someone over there is bipolar, I don’t know. In any event, it’s a waste of a card, a stamp, and my time.

You, Holly Anderson, should never be allowed to counsel any cancer patients — or anyone else who has suffered trauma of any kind. You are a fraud. You have absolutely no shame and no sense of decency. And neither do the cowardly coworkers whose arms you twisted until they signed that bogus card.

YET ANOTHER ADDENDUM, January 13, 2023: Just when you thought it was safe to go out to the mailbox. . .

. . .THIS shows up in it:

I don’t know what part of “LEAVE ME ALONE” confuses Holly Anderson. It’s a simple directive and stated so clearly that even those possessing only the meanest level of intelligence can easily understand it.

Somehow, though, she doesn’t get it. Because I am still on her “list,” (and I don’t mean her email list).

When I brought this unsolicited junk to the post office for return to the sender I couldn’t help but notice “25 Years of Impact” splashed across the cover. Well, I know all about the impact Holly Anderson has had on at least one of the women she has counseled.  As far as I’m concerned, those 25 years belong in the toilet. They were put there by Holly herself the minute she decided it would be a good idea to support a breast cancer survivor by defending the incompetent doctor who almost killed her and then dismissing that “horrific experience” as a nonissue that should never be mentioned. . .because it is so unfair to Dr. Dhakal.

And she preserved that counsel in the electronic firmament, just in case I forget.

If I understand her correctly, the near-death I suffered at the hands of “this physician” should never be mentioned. Ever. Because she is sure that it happened to me and only me; therefore, it just doesn’t matter.

And by virtue thereof, neither do I.

Sorry, but I’m not interested in that kind of “support.” In fact, if given a choice, I’d rather eat glass. Or do my own root canal. Or bathe in nuclear waste.

But I do want her to leave me alone.
When Stupid Passes for Medical Care. . .

May 26th, 2022
I monitor my breast cancer with a visit to the medical oncologist every three months. At this last visit, though, on December 6, 2022, I saw a PA (“Amber”) because the doctor was away at a conference.

No problem. I trusted that she is well-trained and capable of providing reliable medical care.

I wanted to discuss anastrozole, which I take daily. This medication is an aromatase inhibitor that greatly reduces (if not eliminates) the estrogen in my body. Without estrogen, the type of breast cancer I have cannot grow, so it is important that I take this drug every day. However, it comes with a list of side effects this long <<extending arms reallyreallyREALLY wide>>

I am most worried about the slow rise occuring in my blood sugar and hemoglobin A1c. These are predictors of diabetes mellitus. I never had this problem before; it started several months into my anastrozole treatment. I have no family history of this disease. I mentioned all this to Amber. . .

. . . who said, “that’s not a listed side effect ” and is “not often found.”

Maybe she thought that would reassure me.

It didn’t.

She advised that I continue taking the anastrozole anyway, even if I progress to full-blown diabetes. She declined making a referral to an endocrinologist.

Her response raised some issues that I realized would be futile to discuss with her, so I didn’t bother.

The first is, why is she unaware of any of the medical studies that have established a link between aromatase inhibitors and the development of Type 2 diabetes? As a physician’s assistant specializing in oncology, would that not be part of her continuing education?

Just a cursory Internet search produced pages of scholarly articles and study reports linking aromatase inhibitors, specifically anastrozole, to the development of diabetes in postmenopausal women taking the drug. Here are just a few:
1. From Cancer Medicine (Open Access), 18 December 2018, https://doi.org/10.1002/cam4.1911, Citations: 19: ” A general trend of increased glucose and insulin is seen and likely to be caused by weight gain and/or changes in body composition as a consequence of adjuvant [aromatase inhibitor] treatment of BC [breast cancer] (https://onlinelibrary.wiley.com/doi/full/10.1002/cam4.1911
2. From Clinical Breast Cancer, Vol 2, Issue, Jan 2022, pp. e48-e58: “The present study thoroughly reveals that adjuvant HT [hormone therapy with aromatase inhibitors] is a risk factor of secondary DM in primary female BC patients.” (https://www.sciencedirect.com/science/article/pii/S1526820921001749)
3. From Journal of the American Heart Association, Vol 11, Issue 20: ” . . . endocrine therapy [treatment with aromatase inhibitors] is associated with a higher risk of [cardiovascular diseases and] type 2 diabetes. Monitoring of cancer comorbidities after endocrine therapy is needed in younger and older patients. “(https://www.ahajournals.org/doi/10.1161/JAHA.122.026743)
4. From Cancer Research, Vol 80, Issue 4 Supplement: “Our data suggest an association of AET [adjuvant endocrine therapy, meaning treatment with aromatase inhibitors] with DM [diabetes mellitus] among postmenopausal women with early stage breast cancer. “(https://aacrjournals.org/cancerres/article/80/4_Supplement/P5-12-04/647349/Abstract-P5-12-04-Association-of-adjuvant)
5. From Breast Cancer.Org, Research News: “Women treated with an aromatase inhibitor had about a 4.3 times higher risk of diabetes than women not treated with an aromatase inhibitor.” (https://www.breastcancer.org/research-news/link-between-hormonal-tx-and-diabetes)
But, diabetes “is not a listed side effect” and is “not often found.” Well, duh. If you don’t believe it exists, then you wouldn’t look for it. Which clearly explains why it is “not often found” by Amber.

Anyway,

Listed or unlisted, isn’t it HER JOB to know about all the side effects associated with this drug?

The second problem had, really, very little to do with Amber and very much to do with my former medical oncologist, Ajay Dhakal, MBBS. As anyone who has read this blog already knows, that excuse-for-a-doctor almost killed me with incompetence when he was unable to recognize the life-threatening symptoms of typhlitis and instead figured I was some kind of chemo newbie who couldn’t take the side effects. His stupidity and arrogance still haunt me, even though nearly 2 years have passed and I have adjusted to living with a half-treated cancer and without 1/3 of my lower GI tract as best I can.

Anyway

When Amber said “that’s not a listed side effect,” that’s not what I heard. What I heard was Dr. Dhakal saying “This is only day 8. Wait 4 days. By day 12 you will feel much better.”

(By day 12 I had had 2 emergency surgeries and was in the critical care unit at UofR, where I stayed for 2 weeks, much of it on life support.)

I didn’t hear Amber shrugging off my concerns with “continue taking the anastrozole anyway.” What I heard was Dr. Dhakal shrugging off my concerns with “You’re 70 years old. You’ll be dead in a few years anyway.”

As if my survival meant nothing to him (it didn’t). Does it mean nothing to Amber as well?

I don’t want to judge Amber — or anyone else — on terrifying flashbacks from the past. They have nothing, absolutely nothing to do with my present care. But I am having a hard time disentangling her careless remarks from his. Certainly her failure to recognize the link between diabetes and anastrozole won’t kill me, because I am smart enough to pursue that aspect of my care with an endocrinologist even if I have to self-refer. But I am troubled how closely her callous dismissal of my concerns resembles Dr. Dhakal’s.

Different thoughtless remarks from different providers regarding different concerns with different outcomes — but originating from the same sort of ignorance, indifference, carelessness, insensitivity, and lack of concern.

How can I trust either of them?

At this point I can’t. And I won’t. Been there, done that, and almost died.

I wrote a note on my EMR for the office staff to schedule my future appointments with the doctor, and only the doctor while I sort things out.

Because I am DONE dealing with stupid. It should NEVER pass for medical care!
Beam Me Up, Scotty. . .

April 14th, 2022

I don’t think there is any intelligent life over there at Wilmot. And it shows in their hiring practices.

You know, they stand on street corners and ask passers-by, “are you stupid;” those who say “yes” get a job.

Well, we can add Paige R. Cowd to the list of passers-by who answered in the affirmative. I base that opinion on the email I received yesterday (February 13, 2023) in which she “would like to formally invite you to consider becoming a “patient and family advisor” for the Wilmot Cancer Institute Patient and Family Advisory Council (PFAC). “

Now, I do think that I would be a very effective “patient and family advisor,” but clearly not in the way that Paige expects. Why she chose to “formally invite” me to *anything* related to Wilmot is beyond me —

— unless, of course, they are ready to weed out the dangerous doctor(s) from their staff <—–I would LOVE to help them with that!

They can start by sending Ajay Dhakal off to work at McDonald’s or something. . . where the worst he can do is forget to ask “do you want fries with that.” It might be bad for business, but it wouldn’t actually (almost) kill anyone. . .

Obviously, Paige has never read my blog. So I sent her a note to “formally invite” her to do so.

I’m sure the offer will be withdrawn once she takes a look at it. Either that, or I will never hear from her (or anyone else at Wilmot) again.

Either option is fine with me.
Good News / Bad News From the Doctor’s Office

March 20th, 2018

Isn’t that always the case?

I was apprehensive about this visit (March 15, 2023) given my experience with “Amber” back in December.

But I worried for naught. This time I was seen by another PA (“Mallory”) as well as Dr. Gandhi herself. Mallory was quite receptive to my questions and answered each one. She acknowledged the risk of diabetes as increased in postmenopausal women who take anastrozole and discussed that risk with me. She stated that she read every one of the studies I had submitted to the doctor. She did a thorough breast examination and reviewed self-exam techniques. Then Dr. Gandhi explained how treatment with Zometa will help prevent recurrent cancer as well as improve my bone density, which is being slowly destroyed by anastrozole, and I had my first infusion that very day.

Breast exam was entirely normal — no palpable lumps, no skin dimpling or thickening, no nipple retraction. No enlarged nodes.

Yay!! Finally, I am receiving appropriate care from providers who know what they are doing!

Definitely very good news!

I wish things had stopped there, but they didn’t.

Nobody — not the PAs or nurse practitioners, and especially not the doctor– will acknowledge my sordid past history with Ajay Dhakal. Even though it is documented in the Pluta notes and details are invariably elicited at each office visit, the summary that results is simply anosognostic.

It’s as if they have deaf eyes.

It’s as if it never happened.

But it did happen — and was worsened by an incompetent doctor who either couldn’t or wouldn’t diagnose it. I live with the effects of his arrogance and negligence every day. I pay for the extensive (and expensive!) treatment that saved me from his incompetence every month.

Actually, it was mentioned once, in December 2022 , when “Amber” wrote: “The patient switched her care [here] because she had a bad relationship with her doctor.”

Clearly, whatever happened wasn’t worth describing. But it was nonetheless deemed my fault.

When I protested this inaccurate assessment, the statement was not revised; it was removed in its entirety.

As if it never happened.

At this most recent visit (March 15, 2023), we spent 15-20 minutes in an emotional discussion about Dr. Dhakal and the trauma he caused. Ultimately the social worker was summoned; I declined her services but did take her card.

None of this was reported in the visit summary.

It’s as if it never happened.

Again.

Their strategy is simple and straightforward.

However, their strategy does not allow any of my fear, pain, or trauma to go away.

What it does allow is my doctor and her staff to write my medical records with a pen dipped in some sort of perverted professional fealty.

It allows Holly Anderson, Director of the Breast Cancer Coalition of Rochester, to demand that I “choose” to shut up.

It allows Marcia Krebs, MD, Chief of Medical Oncology at Pluta, to defend Dr. Dhakal and erase his incompetence without saying a word.

It allows Dr. Dhakal to sweep his medical mistakes under the proverbial rug and to cleverly turn the tables to become my “victim.”

It allows me to be shamed and blamed for being his victim.

It’s as if it never happened. Over and over again.

Of course, they will never abandon this strategy. It works for them. Besides, they aren’t the ones who were violated.

It doesn’t work for me, because I was.

Am I crazy?

In view of all these things that never happened, I see a therapist who tells me I am not crazy. He agrees that it did happen, exactly as I remember it. He tells me it’s not my fault. . .but then wonders if it is by asking “why do you hold on to the anger?”

I don’t hold on to the anger. The anger holds on to me.

I don’t want revenge.

I want validation.

I want to know that it did happen but shouldn’t have. I want to know that I am not crazy for reacting to its trauma — physical, emotional, and financial. I want to be understood, acknowledged, and believed. I want to know that *anyone* who experienced what I did would feel horribly violated. I want to know that under these circumstances anger is approriate.

And then I want to know why this incompetent excuse-for-a-doctor enjoys unquestioned protection from his colleagues — at my emotional expense. I want to know why my medical record is distorted into an instrument that hides his negligence and ignorance. I want to know why this horrible experience is trivialized as if it was nothing more than a bad dream and why nobody worries about the next typhlitic patient who trusts Dr. Dhakal — nobody but me, that is, because I know that she may not survive his special kind of “personal care.”

I almost didn’t.

This ^ ^ ^ makes more sense to me.

This is my goal. I don’t want to feel like damaged goods. I want to feel good enough to be treated with respect. I want to trust people, including my medical providers, and I want them to trust me back. I want to feel whole again, despite Dr. Dhakal and his near fatal “personal care.”

Because I don’t deserve to be abused by a doctor whose carelessness, ignorance, and arrogance brought me to the brink of death — but I was.

Because I don’t deserve to live with the stress of a half-treated cancer and the never-ending symptoms caused by living without a third of my lower GI system — but I do.

Because I don’t deserve to be invalidated and condemned by timid, misguided, and/or biased people who protect Dr. Dhakal from himself and deny his victim(s) — but I am.

Maybe the anger will eventually go away, maybe it won’t. However, if I attain this goal, it won’t matter.
Good Golly, Ms Holly

April 10th, 2017

She is an imperious autocrat, a deceptively soft-spoken dogmatist, the self-proclaimed Oracle of All Things Breast Cancer to be worshipped accordingly — or else.

And she’s a liar besides.

I’m talking about Holly Anderson, Director of the Breast Cancer Coalition of Rochester [NY].

On October 16, 2022 at 9:01 a.m., Holly wrote to tell me inter alia that there are “two therapists who dismissed you from their practices.” How she arrived at this conclusion is beyond me, but I suppose it doesn’t matter. What matters is 1) who cares about her meaningless accusations, and 2) there are therapists (and advocates) who, unlike Ms. Anderson, do not allow their personal biases to interfere with the therapeutic process.

I found one of these therapists on April 10, 2023.

I told him what happened to me. . .and he listened. He did not blame me or shame me.

He did not “dismiss [me] from [his] practice” or judge me as “not ready” to be helped.

He did not demand that I “choose” to shut up. He did not promise that my life would magically improve once I did — and only if I did.

He did not offer excuses for the perp — you know, like “I find that doctors who make mistakes are remorseful,” or “he has treated other hundreds of patients,” the implication being that he has done so without (almost) killing them.

In fact, he thinks Ajay Dhakal’s conduct was dangerous and disgraceful.

He thinks I deserve better than that.

He wrote down his name so he could advise other women to avoid him.

He knows that some people graduate at the bottom of their class — and that includes both doctors and directors.

He does not demand, coerce, or intimidate. He encourages me to examine my fear, face my pain, and think from the wise mind.

He helps me work towards positive change.

He knows that my way may be different than his way — and that’s okay.

He puts “advocates” like Holly Anderson to shame.

Because he is a therapist, not a bully.

For the first time since Ajay Dhakal almost killed me, I have hope.

I’d forgotten how nice that feels.
Don’t Ask, Don’t Tell

April 27th, 2016
From 1993 until 2011 it worked for Bill Clinton and the gay component of the military. . .

. . .the question is, will it work for my oncologist? Probably.

Will it work for me? Probably not.

I spoke to Adrian Donaldson, MS, LMHC, yesterday (April 26, 2023) about my ongoing concerns. Oh, I’m not concerned about my care — the care I get at Roswell is an overwhelming improvement over the “care” I got at Pluta/University of Rochester.

(This photo, above, shows what an incompetent doctor looks like. He appears normal enough, but that smarmy grin is a dead giveaway. His name is Ajay Dhakal. He almost killed me when he failed to recognize the deadly symptoms of typhlitis in a postchemo patient (me).) From https://www.urmc.rochester.edu/people/112361746-ajay-dhakal, August 2022

Instead, my concern is that my providers refuse to address what Dr. Dhakal did, which is driving me insane (that is, if Dr. Dhakal hasn’t done so already). Although they elicit this information during each visit, none of my visit notes ever reflect these discussions.

The one note that did (December 2022) blamed me: “The patient switched her care to Roswell because she had a bad relationship with her doctor.” When I protested this assessment, the entire reference was removed.

Their concern , which is a refusal to acknowledge this portion of my past medical history, is overriding my concern, which is watching my own caregivers distort my medical record into an instrument that protects Dr. Dhakal from himself.

My medical record should reflect what occurs between my doctor and me (it doesn’t). It should not be used to hide someone else’s incompetence (it does).

Their persistent error of omission forces me, indirectly through my own medical record, to defend a doctor who almost killed me. I required four surgeries and extensive medical care just to survive. I will live with the emotional, physical, and financial consequences for the rest of my life.

That my medical record is used to defend him is outrageous. It is also depressing.

After an emotional 17-minute phone call with Ms. Donaldson, we agreed to a strategy of “don’t ask, don’t tell.” But just how will this help me?

After a long night of deliberation, I realized the only one it will help is the provider who writes up my record. It won’t help me.

It is comforting to know that they will never ask me about “it” again, which (lucky them!) removes the need for documentation in future medical records. But my prior records remain uncorrected. During every previous visit, they asked about my prior care. They asked why I switched to Roswell.

And they consistently ignored my answer.

It’s as if my near-death didn’t happen. It’s as if it was all a bad dream.

But it did happen, and it wasn’t a dream.

It’s the elephant in the room that everyone tiptoes around. And each time that elephant is ignored, trivialized, or dismissed, it bumps into me.

Each time it bumps into me a little bit of my self-worth is chipped away.

It’s as if the elephant and I are one and the same. If the elephant isn’t recognized or acknowledged, then neither am I. If the elephant is dismissed as unimportant, then so am I.

I learned that when Holly Anderson, Director of the Breast Cancer Coalition of Rochester, demanded I “choose” to shut the f*ck up — and then promised that my world would magically improve once I did. . .but only if I did.

I fear that “don’t ask, don’t tell” is equally destructive — but only to me. It frees my providers from documenting a distressing issue, but I am condemned to keeping it a terrible secret. This causes emotional turmoil, lack of confidence, and a disastrously low self-esteem, all of which worsen the depression and anxiety.

It transforms Maslow’s Hierarchy into Maslow’s Mountain and prevents me from reaching the top. It ensures that I will keep losing my step.

How long will it be before the self-esteem lessens to the point of nonexistence?

What happens then?

PART 2: Well, I’ll tell you what happens

December 29, 2023: Just as I suspected, “don’t ask / don’t tell” is working quite well for my medical providers but for me not so much.

That’s me, The Breast. Notice its construction — a bunch of milk ducts, fat, and connective and muscle tissue but no brains. Thank you, Patient Advocate!

When I enter Roswell, I am no longer a person. I have been demoted to the lower life form of The Breast. The Breast used to get a thorough palpation once every three months, but at the last visit I had to request the exam. Respectful interaction, personalized care, exchange of information — you know, the “quality care” that Roswell advertises on its website — that’s reserved for persons. None of it is wasted on The Breast.

“Don’t ask / don’t tell” doesn’t stop my providers from asking me questions, but that’s okay. The Breast knows how to respond — smile and nod politely and just. don’t. tell. Oh, I am encouraged to “call us if you have any problems” but that just signals the end of the exam and that The Breast can go now. I’m not supposed to take that literally.

The Breast learned just how bad “don’t ask / don’t tell” can be when she broke the rules today (December 29, 2023) and asked questions.

What WAS I thinking!

Through MyPortal, which is the Roswell electronic charting system, I noticed that my cancer was described as “IDC-NST” (intraductal carcinoma of no special type). But my pathology report doesn’t say that. Upon examination of the surgical specimen from January 2021, two University of Rochester pathologists identified “intraductal carcinoma of no special type with medullary features.” The doctor who performed the surgery agreed with the diagnosis as did the experts at Elizabeth Wende Breast Center, who did the core biopsy. The “medullary” component is an important distinction, according to papers published by the National Institute of Health, since IDC-NST with medullary features is not the same as IDC-NST. Nor should it be confused with another cancer type, medullary carcinoma, although that is easily done since some of the studies I found on the Internet used the “medullary” terms interchangeably.

But there is a difference:

IDC-NST: https://basicmedicalkey.com/invasive-ductal-carcinoma-adenocarcinomas-of-no-special-type/

IDC-NST with medullary features: https://www.sciencedirect.com/science/article/pii/S1930043323000535

My sin was not in discovering this information. My sin was attempting to discuss it with the doctor (Shipra Gandhi, MD).

But my questions were intercepted by “the team.”

At first “the team” could not respond because they were “waiting on a reply from the team” [??] and then both a “response” and a “replay” [??] from the doctor herself. That’s when I finally realized “the team” was not about to answer my questions.

In exasperation, I rephrased my concerns into straightforward questions that should have been (but weren’t) addressed at the very first office visit: 1) what kind of cancer do I have, 2) what is the prognosis, and 3) what is the best way to treat it. I requested a reply from the doctor.

But once again “the team” caught the ball. This time they answered through “Mallory,” who has the unfortunate assignment of dealing with The Breast whenever I have had it up to here with bull****. She addressed the first question only: The Breast has no form of medullary disease, because the the pathology report issued by the University of Rochester is wrong.

Of course, she didn’t actually use the word “wrong” because no medical provider in her right mind would ever recognize, acknowledge, suggest, or admit to any error committed by another provider. I learned THAT lesson when Dr. Gandhi and “the team” erased my past medical history and review of systems, fearing that I might contaminate them with details they don’t like. In fact, that fear is precisely what eventuated this whole “don’t ask / don’t tell” thing, which frees the doctor and “the team” to create a sanitized, chart-worthy version of my health status and relegate me to a brainless gynoid blob called The Breast, who is not supposed to bother them by participating in her own health care.

Mallory knew she had to support both interpretations while categorically establishing the supremacy of Roswell’s. Following “our pathology review,” she wrote, “[i]t is possible that your previous oncologist/pathologist noted some medullary features/patterns[;] however[,] our team did not.”

Hmm. That would be pathologists. With an S. But that’s not important. What’s important is that I interpret her doublespeak correctly:
1. Nobody is wrong.
2. Everybody is right.
3. But “our team” is righter.
Since the referenced “oncologist/pathologist[s]” are not on “our team,” their interpretation of the specimen simply doesn’t count. Whatever “features/patterns” these luckless outsiders observed must have defied the laws of physics and mutated into nothingness by the time the images were examined by a Roswell pathologist — but I question whether a Roswell pathologist was involved in any of this.

Shipra Gandhi, MD, above. I’m sure she’s very nice, but she doesn’t do appointments. That’s “team” work — but I have to pay doctor prices for it. From https://medicine.buffalo.edu/faculty/profile.html?ubit=shipraga

While completing my reply to Mallory, I was interrupted by a message from “Alison Courtney,” another member of “the team.” Her note was ostensibly conciliatory: “Of course it is reasonable to ask questions about your disease to better understand,” but we both knew that was a lie. Since the doctor doesn’t do phone calls (or email), Alison suggested I drive two hours to Buffalo to keep (and pay for) an appointment with Dr. Gandhi, and then drive two hours back home — with no assurance that the doctor would give me anything more “reasonable” than the rubbish “the team” had already supplied for free.

Alison Courtney, RN, above, who lacks the empathy (and intelligence) one would expect of a medical caregiver — the perfect choice for “the team.” From LinkedIn, https://www.linkedin.com/in/allison-courtney-aa5a63201/, December 29, 2023. Image no longer available.

Nevertheless, Alison continued to share her magnanimous good will: ”I know [she knows nothing] that navigating all of this information [what information? I wasn’t given any!] and managing this disease can be overwhelming [ditto the first comment], and I am sorry that you are going through this [she isn’t]. Thank you [for what?] and Happy New Year!”

What an arrogant way to slam the door — right in my face! Well, I suppose it’s a whole lot nicer than saying “don’t let it hitcha where the Good Lord splitcha,” even though that would have been much more considerate (and believable) than her feigned sympathy and phony good wishes.

I suppose it’s my own fault. The Breast should have known better. You know, “don’t ask/ don’t tell.” But despite the stress (I don’t do well with stupid) I did learn a lot. I learned that

1) I will never get any information from anyone at Roswell. They have put all questions — past, present, and future — permanently to rest once “the team” had shrewdly discovered and then, for some unknown reason, replaced the diagnostic findings in my prior records with one more to their liking. It was only under duress that “the team” reluctantly divulged their antithetical opinion and its supportive “documentation,” to wit:

an innocuous misimpression that had been blamelessly committed by no one, because the tissues were unstable and could not be trusted.

Invasive ductal carcinoma — but the cells must be examined by a pathologist to determine what kind of IDC it is. A “team” of nurses, even a Roswell “team,”is not qualified to examine and/or interpret pathologicl specimens.

2) Besides, The Breast has no business seeking such information. Much like Dr. Dhakal’s incompetence, this stuff is destined to remain under the silent control of Shipra Ghandi, MD and “our team.” And if The Breast continues to pursue the matter, it’s easy enough to dismiss her queries with a flippant “she has a bad relationship with her doctor.” It doesn’t matter if it’s with the doctor who nearly killed her or the one who hides behind “the team — or whether a “bad relationship” even exists at all — it doesn’t have to be true to be the perfect euphemism with which to label, blame, and then ignore The Breast. It just has to be charted, that’s all. They’ve done it before, and I have no doubt they will do it again ad nauseum.

Oh, look! TWO caregivers who want to protect Ajay Dhakal from himself by demanding I shut up! Holly Anderson, left, and Shipra Gandhi, center; From https://www.facebook.com/BreastCancerCoalitionofRochester.

Moreover,

3) I have a lot of damn nerve asking questions that require intelligent answers. Loosely quoting an appropriate sneer from Mel Brooks (“Blazing Saddles,” 1974): “Documentation? We don’t need no stinkin’ documentation.” Since it is an indisputable, black-letter-law fact that no medical provider ever makes a mistake that can’t be covered up, denied, hidden, manipulated, trivialized, reinterpreted, dismissed, and/or ignored, The Breast has a duty to believe whatever “our team” (and only “our team”) tells her to believe, even if it’s specious, incredulous, ridiculous, or dismissive. Especially if it’s specious, incredulous, ridiculous, or dismissive.

Alrighty then.

This leaves me no choice but to

3) flush any nascent trust down the toilet. I don’t need to know the dialectics; in fact, if I hadn’t been so persistent in pestering “the team” with gratuitous questions I never would have known that the conservation of matter doesn’t apply to my cancer-infested breast tissues. These unique and powerful cells of mine can transmogrify and even disappear idiopathically and at will — that is, until they are viewed by a Roswell pathologist. That’s when they suddenly become remarkably docile, nondescript, and whatever “our team” wants them to be.

But at this point I wonder if a Roswell pathologist was ever involved, because

4) As Mallory wrote, “our team” invalidated the UofR diagnosis after conducting a “pathology review.” However, my interactions with “[their] team” reveal it is comprised of a bunch of nurses and a PA or two, none of whom has ever demonstrated any kind of special training in pathology. So, I have no reason to doubt Mallory — this unreported and unsupported conclusion likely did originate from “the team,” because a board-certified pathologist would certainly have affirmed such important findings, which contradict those of two other board-certified pathologists (and a board-certified surgeon plus the board-certified physicians at Elizabeth Wende Breast Center), with a report or an addendum or a consultation note or something in writing to direct the plan of care. . .you know, like the EWBC and UofR physicians did. Their notes are available in my chart. . .but any such writings signed by a Roswell pathologist, Dr. Gandhi, or even “the team” are not.

But hey, there’s a bright side here. None of this will require life support — I’ve already been there, done that with Ajay Dhakal. Despite his ignorance and carelessness, I’m still here. . .wondering if my diagnosis is a guesstimate of what a couple of nurses or maybe a PA thinks I have, based on statistical proclivity (and Dr. Gandhi’s dictum) rather than expert interpretation of the tissues.

So, now that “the team” has severely but appropriately punished The Breast for her outrageous transgression of the treatment plan duly thunk up — not by a board-certified oncologist but by a medically uncertified Patient Advocate — I am tacitly expected to shut the f**k up (now, where have I heard THAT before, Holly Anderson). After all, I am damaged goods, courtesy of the ignorant Ajay Dhakal and the “don’t ask / don’t tell” medical strategy resulting therefrom. The Breast need not possess the intelligence required to understand her disease, she just needs to shut up. After all, it’s only for her own good. Besides, any further queries will just attract the same nonsense she’s already gotten and will risk pi$$ing off “the team” even further. Does The Breast really want them to slam the door in her face — again?

Apparently, it is whatever the Roswell Patient Advocate thinks it should be.

The standard of care followed by “the team” may be insulting, inappropriate, and humiliating, but it is not complicated: The Breast shows up to Roswell once every three months. At these visits she gets some blood work (but no CEA or any other appropriate cancer folllowup), and she can request a breast exam. That’s it. Full stop. Wham, bam, thank you ma’am. So simple (and useless) that it can be done in less than 5 minutes over the phone. The fact that this de minimus descendi care works best on women who don’t ask questions portends that future violations of “don’t ask / don’t tell” will not improve care but will indeed cause all kinds of absurdity and scorn to be heaped upon The Breast.

Just like it was on December 29.

I don’t like any of this. But I don’t have to like it. I just have to hope it works. . .until I realize that once again I’ve had it up to here with bull**** and start looking for an oncologist who treats his/her patients with respect. . .because Dr. Gandhi and her “team” apparently can’t or won’t do that.

Until then,

(but only until I find a good oncologist).
Calling Dr. Wu. . .Dr. Kevin Wu. . .

July 29th, 2015

(July 29, 2023) Two years ago when I was so very sick, I was also quite depressed. I didn’t understand what had happened to me or why. All I knew was that I had waited the 4 days advised by my doctor but instead of feeling better I was in the critical care unit. I still had a sore throat from the intubation, I had wires and tubes protruding from every orifice in my body, I was in pain, and I was so weak that I could hardly sit up. No one would tell me anything, not even the name of my illness. Eventually one of the PAs wrote “typhlitis” on the white board, but I didn’t know what that was, and I had no access to a computer, so I could not consult with Dr. Google for clarification.

The doctors who had saved my life made every effort to help me physically, but they were neither qualified nor expected to address the emotional aspects. And they weren’t about to explain what had happened to me, despite my repeated questions.

That’s where Dr. Wu comes in. Oh, he wasn’t a doctor (yet) but “only” a medical student. His school required him to visit some of the patients in critical care, to get to know how to approach and eventually treat them as patients of his own someday.

The not-yet-Doctor Wu had a unique and compassionate style. I got to know him as much as he got to know me. He was a young Vietnamese man whose sister was an attorney — clearly his family had high hopes for him. He was gentle with his questions and sincere in answering mine. I looked forward to his daily visits.

One evening he heard me crying as he approached my room. I was facing life with a cancer that could no longer be treated with the chemotherapy I needed. Instead, I would have to adjust to living WITH a half-treated cancer and WITHOUT one-third of my lower digestive tract. I had to learn to care for an ostomy that I couldn’t even look at without gagging. That plus a bald head, fatigue, and other sequelae of the one chemo treatment I did have along with barely surviving two emergency surgeries had pushed me way beyond my ability to cope. “I can’t do this,” I sobbed. “It’s too hard.”

He sat with me until the tears stopped. He didn’t recite any trite aphorisms, and he didn’t tell me that “God doesn’t give us more than we can handle.” Instead told me that I had been dealt a bad hand.

Doctor holding a card with Medical Error, Medical concept

I was shocked.

This was the first medical person who was brave enough to admit that my illness didn’t fall from the sky and just happen to land on my unfortunate head. It was caused by someone who held the cards and then handed them out. Kevin Wu knew who had dealt that bad hand, and for the first time since it all began, so did I. That someone was Ajay Dhakal, MBBS, who had advised that I “wait 4 days” before pestering him to see me for what he had dismissed as trivial, unimportant symptoms.

That bad hand was all his doing.

But I would have to think about all that later. It was more important to get me through today.

And this Kevin Wu did. I don’t remember his exact words, but I remember how he quietly and clearly defined my future and then placed it in my hands.

The odds were not in my favor, but I had beat the odds and survived. So, now was no time to quit.

I could do this — maybe not all at once and maybe not right now this minute — but I could do this because I was strong enough to face it and smart enough to break it down into small pieces that I could handle one at a time.

It took a day or two of thoughtful processing before I could accept my future and act upon it.

At a subsequent visit our conversation led to his thoughts about his own future. He might quit medical school, he said, and explore other opportunities. I told him that I sincerely hoped he would reconsider, because I knew he would make an excellent doctor. . .but I also knew that he would be an excellent *anything* he decided to be.

That evening, as he did every evening, he asked if there was anything he could do for me. “Draw me a picture.” I said. He was surprised — nobody had ever asked him that before.

This is Kevin Wu’s picture. It’s a picture of Kevin and a picture of my future. It is a beautiful reminder of a terrible time that still brings tears to my eyes when I think about it. But it’s beautiful nonetheless.

Kevin Wu, wherever you are, I hope you find some idle time to search for yourself on the Internet and see what turns up. I hope you will find this essay and know that I will never forget you and the peace you brought into my life, simply because you cared.

Thank you, Dr. Wu.
How To Correct The Errors Your Doctor Makes on Your Medical Record

July 29th, 2014

(July 16, 2023) There IS a way to correct your medical record. . .but it requires a little bit of work.

It’s all explained here, in the Checkit portion of The Guide to Getting and Using Your Medical Records, brought to us by the Office of the National Coordinator for Health Information Technology :

https://www.healthit.gov/how-to-get-your-health-record/check-it/#:~:text=If%20your%20provider%20has%20a,where%20you%20found%20the%20mistake.

So, after fulfilling Steps 1-4 and, not surprisingly, receiving the Notice of Denial, I prepared my Written Statement of Disagreement with the Denial and requested that it be attached in its entirety to all future disclosures of protected health information (PHI). It was sent by certified mail to Linda Houck, RHIA, CTR, Executive Director of Health Information Management and Cancer Registry Services at RCCI, Elm & Carlton, Buffalo, NY, and reads as follows:

“Shipra Gandhi, MD, and/or providers who work for and with her apparently short-cut the time they spend in charting visit results. This is evident in the practice of block-copying information from prior notes into subsequent notes without bothering to check its veracity. Such haste may permit more practice time but it also, unfortunately, distorts the resultant PHI.

This is unacceptable.

One example occurs in the physical examination section. At my first visit the resident performed a complete physical exam, noting that my abdomen was “soft and nontender.” At that time my abdomen was (and remains to this day) extensively scarred and appropriately tender due to multiple surgeries and significant intestinal loss resulting from typhlitis. Nonetheless, the examiner’s erroneous assessment (plus the remaining portion of his physical exam report) is replicated on each subsequent visit note, even though a complete physical examination has never since been performed.

This leads to another, more troublesome error. The notes read “The patient changed her care to Roswell Park due to a bad relationship with her doctor.” This is incorrect. The statement should read “The patient changed her care to Roswell Park due to her prior oncologist’s failure to diagnose the hallmark symptoms of typhlitis.”

How to survive Ajay Dhakal, MBBS

At no point did I ever assert a “bad relationship with [my] doctor.” When queried as to why I switched care from Ajay Dhakal, MBBS (Pluta Cancer Center) to the doctors at Roswell, my consistent answer has been “because Dr. Dhakal nearly killed me with incompetence.” Clearly, I sought medical care elsewhere because I had (barely) survived his one attempt at killing me, and I didn’t want to give him a second chance.

The information pertaining thereto is verified in notes from the University of Rochester Medical Center and Highland Hospital, copies of which my providers have in their possession but apparently refuse to consult. Instead, they choose to protect Dr. Dhakal from his misdiagnosis by ignoring my statements, claiming that the transfer of care resulted from “a bad relationship with her doctor.”

I vehemently resent that this near-fatal experience and its ongoing sequelae are misrepresented and dismissed as something of no medical consequence and therefore should never be mentioned again, much less documented in my chart. I further resent the implication that it was caused by “a bad relationship with [my] doctor” when in truth it was entirely iatrogenic – because, when apprised of my symptoms of fever (103 degrees F), intense abdominal pain, and “throwing up brown stuff,” Dr. Dhakal advised “This is only day 8. Wait 4 days. By day 12 you will feel much better.” (By day 12, I was near death, had 2 emergency surgeries, and ended up on life support.) Reducing this part of my past medical history to a condescending blame-the-victim comment is an unscrupulous misrepresentation of fact and as such has no place in a medical record.

Good advice. I should send a copy to Ajay Dhakal.

I expect my medical record to represent what occurs in the office between my provider(s) and myself without the taint of misinterpretation, bias, and/or misplaced professional fealty. I am appalled that my record has been twisted into an instrument that protects Dr. Dhakal from himself and horrified that it forces me to protect him as well, albeit indirectly. This I refuse to do, hence this Written Statement of Disagreement with the Denial.”

A bit lengthy, perhaps, but it clearly documents the facts and tells why the record should be corrected. Besides, it doesn’t matter how long the correspondence is, it’s still only $4.68 for certified mail.

I think this is the best $4.68 I ever spent!