This Witch Has Cancer: Ch 4 - Bad Doctors

Oct 21, 2023

I’ve never really been able to gauge my stress, I never put any time into thinking about my stress, until something triggers a release, and it hits me in the face. You’re stressed to the max, baby girl. Today though I’m back in the shit. There I was all set to get with the ‘Watch and Wait’ program and take my chemo and radiation like a good girl, and now I’m like wait a minute, Katie Lou. You have more research to do. I know exactly why people follow doctors’ recommendations, because when I first got my diagnosis. In my panic I would have done anything the doctor told me, even with all I know. The relief over watch and wait, rather than surgery, had the same effect.

The effects of radiation on the nether regions are god-awful. Burns, and daily sit-downs, 1 or 2, is like expelling acid or shards of glass. There’s numerous clinical research claiming the radiation is no longer necessary for colorectal cancer, out of Sloan-Kettering of all places. What predicated the study is the fact that so many young women and men are being diagnosed and radiation destroys their chances of having a baby. For men, kiss your sperm count goodbye. Women radiated in the nether regions go into early menopause and your vagina will never be the same. Not because of the early menopause, but because of the tissue changes that are a result of the radiation. So rather than radiation they double up on the chemo. Clearly, I’m not of baby bearing age but I’d still like to have a working vagina pleasurably engaged again before I die.

People are getting impatient with me. You need to move and do this now! On top of that I can hear my mother telling me I always make things so difficult. Just be quiet and get with the program. But I cannot shake the fact that chemo is a derivative of mustard gas; any more than I shake what I’ve seen chemo do to my clients’ bodies over the last 20 years.

The people whose work I respect the most took several months deciding how to handle their cancer, even those diagnosed stage 4. There are safer ways to take chemo, low dose chemo for one, and they found oncologists and functional medical doctors, who would work with them. At the same time, I really don’t want to do chemo and from the beginning, NO CHEMO has been screaming in my brain. As I have explained repeatedly to the well-meaning-you-need-to-hurry-up folks, I am not in control of the timing of this process. I had the colonoscopy. 2 weeks later I was told I had colorectal cancer. The surgeon who did the colonoscopy set me up with the cancer surgeon, he set me up with the chemo and radiation guy. Before meeting with them I had to have bloodwork, a CAT Scan, and an MRI to determine a treatment plan.

I like the wait and watch protocol, but I’m getting a 2^nd and 3^rd opinion, and you can’t get a 2^nd and 3^rd opinion unless you know the 1^st protocol. In order to get a  referral for a 2^nd and 3^rd opinion I have to call the surgeon who did the colonoscopy. I’ve had all the standard tests done that any cancer doctor needs to see. 

Well, maybe you should have seen another doctor in the first place? My brain says. Maybe you should have hit this harder and faster? I have no answer for that question. I do know I’m doing the best I can and my instinct and intuition, tells me to hold to what I know to be true. I am absolutely terrified. Most days I have it at bay, but not today, I’m avoiding human contact right now, I’m feeling bitter and I know I’ll lash out. There’s quite a bit written about how angry cancer patients get. The writings assure you that it’s perfectly normal to be angry and scared. Oh, whoopee! But the writings do not touch on the true source of my fear, and that’s the treatment. I know how sensitive my system and I’m pretty sure if I don’t have input into this I will die, not from cancer but from treatment.

What is even more infuriating is it doesn’t have to be this way. The studies are there; sound waves work, low pulse frequency works. Both destroy the tumor with no side effects.

I am powerless over the fact that I have cancer. I am not powerless over the choice of my treatment. As I wrote in Genesis 2: That Passion of Emma Ray Earle - right use of power is love made visible.

---

Oct 24^th 2023 Tuesday

Still reeling from yesterday’s visit with radiation and chemo guy and beyond grateful my beloved Sarah was there so I have a witness.

The interior of Fox Cancer Care has the feel of a small mall, arranged as a series of old-fashioned shops, with striped awnings over paned windows. Think Xmas without the decorations; dancing munchins, elves, and oompa loompas would not be out of place. In the windows of the shops, you’d expect to see canisters of butterscotch drops, peppermints, tumbling stuffed animals, and brightly colored childrens’ books, but the shops are departments. Radiology, hematology, etc. The psychology behind the design of this place is not lost on me.

After check-in, the first person who greets you for any type of cancer appointment is the doctor’s nurse and right hand.  Dr V’s nurse was Russian, and I wasn’t wild for her, not because she was Russian. but because she told me supplements were rarely pure, which offended me because I know that and like I’d buy un-pure supplements. But she was clearly competent and intelligent and that’s always reassuring. She took my temperature, my blood pressure, and pulse.  Dr V entered the room, introduced himself, and we shook hands. He had a slight accent. I think it was Greek.

What do you think about low-dose chemo Dr. V?

You must speak to other doctor about that.

Do you think chemo impacts the metabolic paths of cancer turmors?

You must ask other doctor about that.

Are you not the chemo guy?

I am radiation.

I spoke about my issues with radiation, quoting the most recent studies. He knew exactly what studies I was talking about and told me more about targeted radiation. At which point I looked at him and said, I like you, and we were off and running. He said ‘wait and see,’ as per Dr. O was a misnomer. What they’re doing is trying to shrink the tumor into nothingness so they can pop the last piece out with surgery. I said yes, hopefully with the TM-TRE surgery. He smiled.

I love research, I said.

You missed your calling, he said. Doctors, we research and research.

I’m a reiki therapist, I’ve worked with cancer patients for over 20 years.

He cut eyes at me, and in that moment I got that he got I knew the drill. Cancer’s a fucking crap shoot.

Sarah’s taking notes and wants to know the side effects of targeted radiation. Fatigue, skin changes, irritation at the site of radiation. I don’t ask him about my vagina. Dr. V was all for supplements and acupuncture. We got onto Chinese herbs as adjunctive therapy. He spoke of the open heart surgery done in China without anesthesia, but with acupuncture needles. I saw that one, I said. He knew about reiki, his patients loved reiki. Dr. V has been in his field for 30 years and clearly having seen what he’s seen he’s open. That happens to the good ones when they’ve been in the field that long.

I told him I wanted to avoid radiation and was thinking of going with low dose chemo.

No problem, he said. When you speak with other doctor, ask him what kind of chemo and how many cycles. You have any questions, you want to talk, you call me. We meet every Wed here, to discuss tumors, I will pay attention to your progress. Visualize the cancer gone.

It was a wonderfully informative meeting and I thanked him treating me like I was an intelligent human being.

How could I not? You are intelligent woman.

Sarah and I left punchy with happiness.

—

The chemo guy’s name is Dr M. His nurse is very young, asks me the same questions Dr V’s nurse asked. Name, birthdate, and she took temp, my blood pressure and pulse. The nurse is in front of the computer. She tells us the oncologist we are about to see is new; the other oncologist left abruptly and he’s stepped in last minute to take over the man’s patients.

Ok, I say.

Have you has a pneumococcal vaccine? The nurse asks.

I don’t even know what that is.

Sarah says, Henry had one. Oh no, Henry had streptococcus vaccine. Wrong coccus.

We started laughing. The nurse not so much.

It says you had one today at 3: 13. She checked the time. It was 3. I’m thinking this does not bode well. She leaves the room.

A few minutes later, a very skinny 30-something man walks in. Concave chest, shoulders hunched, big glasses that are wider than his face. Greasy hair, very unpleasant vibes.

Miss Tupman, he says, without looking at me.

Katherine, I say.

He takes a seat in front of the computer. He does not tell me his name.

I have to find Regina, he says, jumping up from his chair and rushing out of the room. Why is he looking for my nurse navigator?

Sarah and I eye ball each other.

Dr M stalks back into the room a few minutes later, I can’t find Regina, he mutters. Extremely put-out he takes his seat in front of the computer.

So how did this happen? He asks, still not looking at me but at the computer.

I had a colonoscopy, the biopsy said it was cancer. I met with the surgeon, and he set me up with you and Dr V.

Who’s the surgeon?

Dr. O.

When did you have the colonoscopy?

I’m not sure of the exact date.

Well, how many months? He’s impatient; like he can’t do anything if he doesn’t know the answer.

Maybe 4.

He’s still looking at the computer and the grilling continues. Questions re: every bit of information that is already in my chart, which he clearly has not read and can’t find in the computer.

Do you drink?

Clean and sober almost 38 years.

How much do you drink a week?

Clean and sober almost 38 years, I repeat.

Sarah’s eyes narrow. The kid is flat-out rude.

Have you had all the tests?

Yes, I’ve had the bloodwork, the CAT Scan, and the MRI.

I can’t find a record of any of that. Oh, here it is. Did you have an MRI?

Yes.

I can’t find a copy of your MRI.

Maybe Dr V. has it, I say helpfully.

I can’t find a copy of your MRI, he bleets, banging away at the computer because he can’t find the copy.

I am beyond glad Sarah’s here. I have a witness because who would fucking believe this?

It was clear, I tell him. The MRI.

How do you know that?

Dr. O told me last week.

Sarah volunteers to run across the hall to Dr. V’s office and see if he has a copy of the MRI report. I shake my head.

Regina my nurse navigator arrives. I’m not sure why she’s here.

Do you know where the result of her MRI is? Dr M demands.

I can find it, she says, but she doesn’t leave the room.

Tell me about yourself. Dr. M turns away from the computer to look at me. First eye contact, hostile, defensive.

I just had an appointment with the radiologist, I say soothingly, and now I’m having an appointment with you to find out what stage of cancer I have and to determine my course of treatment. What kind of chemo, how many cycles?

Platinum etoposide.

I think…..As per the NIH…..“The side effects of platinum chemo seriously limit clinical application because of a lack of selectivity, high systemic toxicity, and drug resistance… common side effects include anaphylaxis, cytopenias (including leukopenia and neutropenia, thrombocytopenia, and anaemia), hepato- toxicity, ototoxicity, cardiotoxicity, nausea and vomiting, diarrhea, mucositis, stomatitis, pain, alopecia, anorexia, cachexia, and asthenia

Do you do the Greek test? I ask.

What’s that?

It’s a blood test that determines your sensitivity to chemo. Some blood types reject certain chemo’s, so you have to use a chemo it doesn’t reject.

Never heard of it, but I don’t know everything. I need an MRI of your brain.

What are the side effects of this chemo? I ask, like I don’t already know.

You’ll lose your all your hair, you’ll throw up, neuropathy, some organ damage, mental confusion. He’s throwing the words at me like you throw meat to wild dogs.

Do you do low-dose chemo?

Low dose chemo?

Low dose chemo. It’s less toxic.

It won’t kill the cancer. You have a small cell, fast-growing tumor. You have to use a lot. That’s what the studies say.

You’re speaking of Standard of Care, I said.

Regina jumps in, both of them talking about the benefits of Standard of Care. It’s like listening to first year medical students.

I do not say small cell tumors in the lung are fast growing, not where it is in my body. I do not tell them that the current studies are now saying low dose chemo works just as well and is not as destructive to the body. What I do say is, Chemo doesn’t cure cancer, it retards the growth of the cell.

He leans back in his chair crosses his arms, glaring at me, openly antagonistic.

Like I said, I don’t know everything.

Sarah is about to explode, and surely wondering why I am continuing to treat the little shit with courtesy and respect.

I think I have all we need here, I said, closing my notebook.

I don’t think we’re getting along, he says.

Sarah’s jaw drops.

We’re clearly not on the same page, I said.

I don’t claim to know everything, he repeats.

I understand you’re in a very difficult position having to step in and take over the cases of the previous oncologist.

My conciliatory words have no effect.

Do you want to see another oncologist? He demands. I can set you up with another oncologist. I don’t know everything, I told you I don’t know everything.

I’m thinking you don’t shit asshole. What I say is, I can’t make that decision right now

I need to know if I should set up another appointment for you!  

I can’t make that decision right now, I repeat.

Sarah and I stand to leave.

Regina, who’s witnessed the whole thing, pops up with, you’re getting other opinions, right. I said yes, and she had me sign the medical release form for 2nd opinions then and there.

Sarah and I exit. She is about to explode and does just that when we get outside. I love her anger, she’s talking fast. Words that perfectly describe the little shit, are pouring out of her mouth: bully, aggressive, antagonistic, rude, hostile. And how graciously I handled him, which was not on me to do. The great thing about being 70 is I really do have a choice about what I engage with and what I skip over. I completely skipped over his horrific behavior in that meeting because I wasn’t surprised. After all the years of working with cancer patients nothing an oncologist does or says surprises me. What bothered me most was the fact he hadn’t read my chart and knew so little about cancer treatment and the current studies. The Greek test is medicine 101 A, platinum based chemo is old school, and the cancer establishment is moving to low dose chemo because more and more patients are point blank refusing chemo, and arguing for choice of treatment.

My darling Sarah was so mad, after dropping me home, on her way back to Ghent, she pulled off the road and called her father. Her father is a retired ER doctor. He was even angrier than Sarah, which is saying a lot.

She is the patient! She has final say on her treatment! You have to register a a complaint!

—

I’m too hyper to sleep so I start researching targeted radiation. Targeted radiation not only shrinks the tumor, which as per Dr O is the point of treatment, but the side effects are way more manageable and nowhere near a horrific as past radiation therapy. I haven’t wanted chemo from the beginning. Chemotherapy-induced metastasis is a fact of treatment. Most every cancer patient I’ve ever worked with have died, not from cancer, but from the side effects of treatment. I’m a 70-year-old woman, I live alone, and am not in the least bit interested in spending my last chapter on the planet dealing with the side effects of chemo, probable metastasis as a result of said chemo, and no quality of life whatsoever. Radiation induced metastasis is also quite real. Neither radiation nor chemo kill cancer stem cells. But there are herbs and supplements that do and the science behind their efficacy is solid.

The tumor is growing, I can feel it, and I’m praying I can get the targeted radiation without the chemo. I trust Dr V., not as savior, but as partner in my recovery.

***

October 24^th, 2023 Tuesday

Spoke with Regina this AM. Told her where and to whom to send records for second opinions.

She said, I’ll send them right out.

You need to get a referral first.

No, I can just send them out.

As per the doctor’s offices I’ve spoken with, they need a referral from the doctor who did the colonoscopy. Dr. Griffin.

Oh, ok, I’ll get it.

Dr. M was absolutely awful, Regina.

She didn’t say anything.

I loved Dr V and would like to see him again. ASAP. I’m hoping for targeted radiation and no chemo.

Regina is clearly not pleased that I’m pulling away from chemo. They never are.

Do you still want me to send your records out?

Yes, I do.

—

You absolutely have to file a complaint, Sheila says.

She filed a complaint re: her oncologist when she had her cancer, He wanted to take her lymph nodes (there was no cancer in her lymph nodes) just to be safe. She said, no you’re not taking my lymph nodes and he was going to do it anyway. She got him fired. I’m letting Sarah file the complaint for me. She’s gung-ho to do it, and she has a master’s in clinical social work, and a father who’s a retired doctor, so she has the best language.

—

What I’m hoping for is targeted radiation which I will supplement with COC protocol. Jane Mclellan -  hands down the cancer survivor and researcher, whose work (at this point) makes the most sense to me at this point - was the first to uncover this protocol using herself as guinea pig. She’d had the chemo, the cancer came back, she was diagnosed 4^th stage and told she had 12 weeks to live.

She started researching. She was young, early 30’s and after 12 weeks surprise, surprise, she was still alive and kept on researching. She researched nutrition and changed her diet dramatically. She was drawn to the metabolic pathways that feed the cancer tumor. How to block those pathways to prevent metastasis and reoccurrence? She researched using off-label drugs – meaning drugs that aren’t prescribed for cancer, but for something else. For instance, cancer loves glucose, so if she took metformin would that inhibit the flow of glucose to the tumor? Cancer cells also rely on glutamine to survive and multiply. What inhibits the flow glutamine? Can nutrition, off label drugs and supplements work synergistically to support traditional cancer treatment? There’s a whole lot of science here, backed up with cutting edge studies, but I’m not going to go into all the science right now because it fries my brain.

One of Jane’s dear friends, let’s call her Mildred, was diagnosed with cancer. Jane helped her to map out the metabolic pathways of her cancer and the diet, supplements and off-label drugs that would work synergistically with conventional treatment.

Come with me to see the oncologist, Mildred begged, and Jane did, along with a few of Mildred’s relatives.

So, there they all are, sitting in the oncologist’s office, and Jane begins to present her theories. She has it all written down and she’s laying the papers on the doctor’s desk, explaining this that and the other, backing up findings with science. The oncologist hits the ceiling, ‘Who do you think you are!’ that kind of thing and yells for everyone to get out of the office, except for Mildred. Jane ran out of the room, her friend’s relatives on her heels attacking her like the birds in Hitchcock’s The Birds – You stay away from our sister! One of the men was so angry she was afraid he was going to hit her. PS: Mildred got the chemo and was dead in a matter of months. 

Fast forward a few years. Jane is on the porch drinking green tea and reading the paper; an article about a new cancer facility that has recently opened. The person who founded it is the same oncologist who threw her out of the office so many years ago, and the new facility, CareOncology, is doing everything she recommended in her papers. Now it’s called the COC protocol. What’s interesting is, Jane wasn’t in the least bit angry. She was just so happy she’d been right all along, and the information was out there and being used.

I watched a video of Jane and she’s very clear she wants to upend the Cancer Industrial Complex. I’m with her. It enrages me that people get stuck with the Dr. M’s of the world and don’t have the wherewithal, through no fault of their own, to fight back. It’s enraging that all this information about the benefits of alternative treatment is out there and study after study shows it’s a vitally important adjunct to treatment. It’s enraging that the Cancer establishment continues to block sound and electrical pulse therapy because there’s no profit in it. Standard of Care is all about profit.

I found CareOnocology in England, and there’s one in the United States too, but I don’t know yet if they’re affiliated. They both will hear from me tomorrow. That I can even consider COC protocol is solely due to Tom A, a man among men, Leo to the max, heart of gold, brilliant writer, funny, and smarter and wilier than just about anybody on the planet. He has my eternal gratitude, as do all of y’all reading this, subscribing, and sending prayers, spells, and energies.

Live loud, love fierce, and suffer no fools, Kat x0x0x0

Art by Herman Peckel