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OPINION zone.

Nov 102015
 

When I started my doctor’s alternative treatment program four years ago, I was prescribed a diet, supplements and detox routines. I did everything to the best of my ability. I didn’t cheat on my diet once in the first three months of my program. Before that, I hadn’t eaten sugar for a year, and I’d already been juicing and eating organic, so in all, about 18 months went by before I cheated.

Forbidden Fruits?

The first cheat on an anti-cancer diet feels forbidden. Whether it’s eating something at a restaurant that arrives with an unexpected topping of cream sauce or binging on a pint of organic ice cream, it does not feel good.

I remember wondering if my first cheat — a restaurant dessert of milk pudding — would derail all of my progress.

It didn’t. A few cheats, after a long period of compliance, cannot derail a diet and supplement program.

It’s frequent or daily cheats, built up over time, that can derail the program. Returning to a “normal” American lifestyle of fast food, barbecued ribs and Skittles is a recipe for eventual disaster.

But I struggled to adjust after I got well. I wondered what I could eat, and how often, whether I could relax a little.

When to Relax

I recently talked with a great health coach about this, who reassured me that after four years, it’s okay to relax a little. It’s okay to eat a slice of pizza with friends, enjoy a piece of cake at a birthday party, or drink a glass of wine at a celebration. The key is that these things aren’t daily habits — they’re occasional. My daily habits remain organic foods, clean water, and great supplements.

I am even looking to dial down the supplements, slowly and methodically, with my doctor’s help. My diet has been relaxed already, so I now eat more things. I’m edging my way toward a maintenance program.

But it’s also important not to feel guilt — and I struggle with this. Sometimes, when I eat too much dark chocolate, I worry. I wonder if I should counterbalance it with more dandelion greens or beet juice or supplements.

The worry itself is probably more damaging than the sugar at this point. I need to take a deep breath, continue to eat my organic, balanced anti-cancer diet, and occasionally give myself permission to enjoy food as part of enjoying life.

Giving Thanks and Giving Up Guilt

I’m trying a new habit this week: I’m giving thanks for all of my food. Even the food I don’t think I should be eating. The vast majority of my food is healthy and on-plan, so if I have a brownie I will just accept it and move on. I’ll see how this goes.

My main diet, the diet that is the core of my program, is a mostly vegetarian, Mediterranean-style one. I’m finally reading the great book The Blue Zones, and my diet is not far off from those diets. I feel I am on the right track in eating well and giving my body what it needs to support itself and stay healthy.

If I’m not perfect, then I’m human, and I don’t want to feel bad about that anymore.

Oct 232015
 

I had breast cancer, but I don’t get mammograms. In fact, throughout the entire diagnostic process, I never had a mammogram.

How is this possible?

When I first noticed a breast lump, my ob-gyn recommended an ultrasound because of my age. I was only 34. She said it was almost certain to be benign. The image on ultrasound didn’t look benign to me, but the doctor doing the biopsy told me it probably was.

When the biopsy came back suspicious, I had an MRI to try to rule out cancer. The MRI involved use of a contrast agent that can cause kidney failure and death in a tiny percentage of cases, so that was a little nerve-wracking. But I figured that if it meant I didn’t have to have surgery, it would reduce more risk than it created.

Unfortunately, the MRI didn’t rule out cancer. So I had an excisional biopsy and later a lumpectomy and radiation.

My No-Mammogram Rationale

Afterward, I told my oncologist that I was no fan of mammograms and wasn’t going to do them. Radiation risks aside, I’d read a study and an article that indicated simply massaging the breast during sentinel lymph node biopsy surgery could increase the rate of micrometastases (isolated cancer cells or cell clusters in the sentinel lymph node or nodes).

My common-sense danger detector went off. If massage could cause micrometastases, what about heavily compressing my breast in a machine?

I decided not to do that.

Ultrasound Follow-Ups

Instead, I told my oncologist I was open to ultrasounds, so that’s what I’ve been doing since then. They are painless, non-invasive, and more accurate than mammograms for younger women with dense breasts.

Seven months after radiation ended, my first follow-up ultrasound showed something troubling, but the doctors at the imaging center said my original pre-biopsy ultrasound was of such poor quality that they couldn’t be sure if what they saw was new. I ignored their recommendations for an MRI (you get harassing letters when you do that!) and decided to follow up with thermography. When thermography showed no issues, I waited a few months and then had another ultrasound. Nothing had changed, so it was labeled benign, and it has stayed that way for many years — with one exception: The nodule they labeled “particularly concerning” has entirely disappeared.

Don’t Panic

A key part of this follow-up process, for me, has been not to panic. I’m on a best-in-class alternative treatment program to prevent recurrence, and it’s worked wonderfully for me, so I know I have time, knowledge, allies and weapons. Mammograms, however, are not part of my arsenal.

Oct 232015
 

After my tumor removal surgery and before I found my way to my wonderful doctor’s alternative cancer program, I did three weeks of short-course radiation. To get the radiation, I had to visit the hospital’s cancer center. It was one of the most traumatic parts of my experience.

Walking through those doors — just the act of going in there — made me feel sick. I felt labeled. Stigmatized. It might have been irrational, but if I could have just gone to the regular hospital, to get treated there like regular people do, I’d have felt a lot better about the whole situation. Having to go to a special building, with giant letters on it proclaiming that everyone in there had cancer, felt invasive. It felt as emotionally invasive as surgery was physically invasive.

Intangible Costs of Labeling Patients

Why this deep aversion?

In a normal hospital, people are sick but in all sorts of different ways. Most of them are expected to recover. Also, no one knows why you in particular are there, so you have some semblance of privacy.

In a cancer hospital, everyone knows why you are there, and there’s an aura of pity, suffering and despair that’s hard to explain or escape. It’s an invisible mental pressure that takes a toll.

One of the reasons I didn’t mind office visits with my surgeon and oncologist was that they WEREN’T based out of the cancer center. I loved the relative anonymity and normality of entering their offices. (Important Note: The PRIMARY reason I chose my surgeon and oncologist was that they were the best in their field. Even if they had been based out of the cancer center, I would have chosen them. I’m just extremely glad they were elsewhere.)

No such luck with the radiation oncologist. I had to visit the cancer center every day for weeks. I felt like I was wearing a scarlet letter C.

Lingering Trauma

To this day, when I walk past the cancer center, I cross the street. I try never to go near it. I feel traumatized by the idea that people might associate me with such sickness when I’ve worked so hard to get healthy. I feel exposed and stressed near there, like every nerve ending is raw and electrified. It’s all in my head, but my feelings are quite real.

My oncologist recently moved into the cancer center, and I’m actually putting off my appointment. I hate admitting that my distaste for re-entering that building is a major factor. But it is.

What Could We Do?

It would help a lot if cancer centers were more generically named. Maybe just tagged with a donor’s name, like, “The Smith Center.” Or a doctor’s name, like the Block Center in Illinois run by Dr. Keith Block. Those names don’t trigger stress and fear. They don’t label the people who walk through the doors. They allow some preservation of anonymity and therefore dignity, especially in a city where throngs of people stream past the entrance every day.

Re-naming cancer centers is something people without cancer might never even think about, because they have no idea it could be a problem. I’m writing this to tell you: It’s a problem, at least for me, and I suspect for some other patients, too. In a population that often develops PTSD as a result of treatment, one easy change could have significant benefit to patients’ well-being during and after treatment.

We know we have cancer. Don’t tell the world, too.

Oct 162015
 

Note: Apologies for the site downtime on Wednesday and Thursday morning. My credit card number changed, and I didn’t realize my web host charges were due. I’m still here! That was terrible timing, though :-) Sorry about that.

The good news is, I had my doctor appointment and all appears relatively well. I’m iodine deficient, which hasn’t happened in a while, and my autonomic nervous system is a little more stressed than it was last year, but it’s still balanced and everything else appears to be under control. My hormones aren’t out of whack either. My liver and blood cells both are functioning at optimal levels, and my cancer markers are normal. Relief and gratitude are my main emotions.

A New Era

I was nervous about this appointment for several reasons, not just the ones I detailed in my 2015 self-assessment. I also was nervous because I was switching doctors by necessity, since my doctor passed away. I’ll write more about this someday, but not today.

I’m happy to say my new doctor and I got along well, we agreed on a path forward for my program, and we’re on the same page with my preference for a largely vegetarian diet. I’ll still eat fish, eggs, yogurt and organic raw cheese, but I’ll cut the weekly serving of red meat and lean back toward organic liver powder. I was allowed to replace the liver powder with organic grass-fed beef last year, but allowed or not, it often makes me feel terrible. I CRAVE the liver, despite its lack of tastiness, and miss it when I don’t take it. We also amped up my dose of Atlantic kelp once again to try to address the iodine deficiency.

One thing that was so comforting was knowing I had somewhere to go and someone I can trust to pick up the reins as my doctor-ally in this journey. I know what to do, but my doctor has seen about 5000 more situations than I have, and can give better advice as a result.

Sitting in a cafe before my appointment, I made a list of what I think makes a great doctor. I think both my late doctor and my new doctor embody these principles, and I wanted to share them with you.

A Great Doctor

A great doctor listens. When a great doctor’s patients say something is wrong, a great doctor believes them and looks for answers.

A great doctor offers advice in a way that doesn’t patronize and doesn’t lecture but draws on years of experience and gently guides.

A great doctor follows the truth wherever it leads, without regard to whether the truth is a plant, a patent medicine, a practice or a supplement.

A great doctor accepts that the truth can come from unlikely sources, and is willing to investigate it.

A great doctor never stops learning and never stops looking for the truth. When the great doctor finds truth, money and politics cannot divert the great doctor’s interest and application.

A great doctor knows when patients need reassurance and when they need the harsh truth, and delivers both in a non-offensive way.

A great doctor leaves room for miracles while minimizing the need for them.

A great doctor understands the tangible (what is learned in medical school and in practice) and the intangible (what cannot be learned but can only be observed and learned from).

A great doctor understands that people are infinitely different, with common threads.

A great doctor understands that a doctor is more of a guide than a healer. The patient’s body and spirit are the healers.

A great doctor maintains distance, but not too much.

A great doctor does not seek the limelight except when doing so could help heal more people.

A great doctor will go to great lengths for patients. The great doctor will be as patient with them as they are with the great doctor.

What would you add to this list? Who have your great doctors been?

Oct 132015
 

I’m nervous about my upcoming doctor appointment. I’ve been lazier in the past year, despite still taking the majority of my supplements and eating mainly organic. Even though I’ve made a major course correction in the past few months, I still worry about the prior nine months. I also froze my eggs, with my doctor’s knowledge and approval, but am aware I may take a hit from that, too. I may need to build back up and get back on my original program with a vengeance.

I say my original program because at my prior appointment last year, I was told I could eat meat again. My diet was broadened and relaxed a bit. But I still don’t like meat, and when I eat it, I don’t feel good. I prefer fish by a long shot. I also miss the 14-Grain cereal I used to eat every morning. So a few months ago, I bought all of the ingredients (raw grains) online and have started making it again.

I feel like my diet and supplement program is my armor, in a way, so when I don’t adhere to it as well as I could, I get nervous.

I know I’m fortunate in that I know what to do. Figuratively speaking, I’m sitting next to the stereo with my hand on the volume, ready to turn it up to maximum if needed.

Just waiting.

Sep 292015
 

I hate Pinktober.

I’m relieved to learn I’m not alone in this feeling. When I was diagnosed with cancer, September was spinning into October, and Pinktober was much bigger and more widely accepted than it is now. I felt like I was supposed to get behind “the cause” when all I wanted was to get as far away from “the cause” and anything having to do with cancer as possible.

I painted my room pink when I was a child. I loved pink – flowers for my mother, shirts and toys and my bike.

During and after my diagnosis, I had a visceral reaction to the color. I felt like wearing it would remind me of cancer. I felt like I would be supporting companies that slap a pink ribbon on products that are unhealthy. I chose to wear black, because that’s how I was feeling. Later, as I recovered, I chose to wear bright colors – blue and green and orange – but never pink.

Finally, I calmed down a little and bought a pink sweater. I wore it. It didn’t change me. It didn’t make me get cancer again. It made me feel soft, feminine. And that was progress.

As October comes around again, the month of autumn and falling leaves, the juggernaut of sponsorship and races and pink and fundraising still feels like something I’d rather shut out. I want nothing to do with it, because I don’t believe they have the answer. I wish cancer were a non-factor in the world, something no one worried about and no one had to worry about. I wish it never tore apart another family.

But throwing money down a hole that isn’t getting smaller isn’t the way to go. And supporting companies that make unhealthy products as they “stand behind” cancer patients seems hypocritical and self-defeating. If they took all that money and invested it into removing unhealthy ingredients from their products, that would be progress. If everyone took a little step toward making everyone else a little healthier, that would be progress.

But Pinktober? No. It’s not for me.

Sep 012015
 

I reject the phrase “the new normal” because to me it means “the less-good-than-before.” That’s almost always the subtext when this phrase appears.

I reject it because, yes, I made adjustments after I had cancer. I’m not the same person I was before. But my “new normal” is AWESOME.

It’s awesome because I didn’t let others dictate how my future health would be. Because after I finished initial treatment, I balanced my vitamin, mineral and hormone levels. Because I repaired DNA damage and my radiated breast became soft again. Because the new dark spots that my dermatologist said would get worse have disappeared. Because the tingly irritation on my scar disappeared. Because a nodule disappeared. Because I feel great. Because I rarely get colds anymore. Because I’m in better shape. Because I put better fuel into my body, I drink better water to refresh my cells, I sleep better, I enjoy sex more, I enjoy life more, and I feel comfortable with myself for the first time ever.

Because I overcame. I learned that when I am pushed to the wall, I will always find a solution. It will be a solution that I am comfortable with, that I have researched, that feels right at a gut level and at a logical level. I learned, firsthand, that waiting for scientific studies is great when you have plenty of time. When it’s just you, right now, with the resources at your disposal, you do the best you can with what you have. And sometimes THAT IS GREAT. But it’s a decision that only you can make, in your moment.

Finding Peace – the Hart Part

Knowing that I will find a solution puts me at peace. And part of that solution — and this was the hardest part, the absolute hardest part because it didn’t involve any tests or supplements or nutritional-balancing — is to trust in the universe. This one’s a bigger leap of faith than all the others, a dive off a platform into… who knows?

But it’s the best part of the solution I found. Because now I can just breathe. I never could relax before. In my “old normal,” I’d sit on the couch to watch movies for a day and panic. My mind would conjure scenarios that would set me pacing around the room, worrying and worrying, until I created something for myself to do and never got to watch that movie. If I wasn’t producing, I couldn’t breathe. I got a lot done. But this was unhealthy. I never felt at ease. It was always, “What if? What if?”

Well, “what if” happened. (Yes, cancer was one of my what-if scenarios.) And I freaked out. I hated how I felt, how powerless and pathetic and pushed into decisions I felt not-right about, and I decided this was not going to be my future.

Less Stress, More Time

Now I am sometimes less productive. I don’t feel driven to stay up until 3am. I don’t produce, objectively, as much output as I did before. And sometimes that’s frustrating.

But the output I do produce is better thought-out, with a stronger foundation. The projects I take on make sense from a strategic perspective. I get more bang for my buck and have a better-balanced life.

I make time to eat real food instead of skipping meals. I try to sleep 7 hours a night. I nourish my relationships, because they are what’s important in the end, not how many hours I spent at work. I nourish my goals — the really important ones. I let the less-important ones drop by the wayside. I try to serial-task, not multi-task. Sometimes I really do just breathe, and relax. It takes time, but if it gives me more years on the earth, then I have gained time by doing less each day.

Never Give Up

Some things still suck. Because I allowed, against my better judgment, a sentinel node biopsy 1, I have trouble at high altitudes — and even not-so-high altitudes. Although I feel totally normal at sea level and have no problem lifting heavy things, exercising, taking hot baths/saunas or anything else, I notice a weird sensation in my arm above 1,000 feet (EDIT: 2,500 feet. Hurray!). I haven’t ski’ed in five years. I haven’t been to the mountains (EDIT: Yes, I have.). I wear compression sleeves and fingerless gloves when flying because I don’t want to risk lymphedema, though I bought black ones that look more ninja than medical. I try to limit my flights per year to a reasonable number. I HATE this problem. It limits my life. But I also am 100% convinced that, ultimately, I will solve it. And when I do I will feel SO much better about myself than I ever did before. That’s just how I approach things.

I already found a few limited solutions. For now, here are the tools in my toolbox: Lymphdiaral drops, which work for me within a few minutes. Cleavers Tea. Indigo Drops if I need them.

My goal is not just to muddle along as a shadow of my former self, but to KICK ASS and project GRATITUDE, LOVE, and JOY. Every day, no matter how many days. That’s my “new normal” — my new life.

Notes:

  1. This is a procedure where one or a few lymph nodes are removed to check if cancer has spread. I didn’t want to have one because the type of cancer I had almost never spreads.
Aug 312015
 

I took supplements 15 minutes ago. Sixteen pancreatic enzyme capsules, along with magnesium and bromelain.

I’ve taken these supplements thousands of times in the past four years. Sometimes I’m religious in taking them, and sometimes (especially lately) I’m lax. But I always return to the path. Because if I don’t, I’m toast.

That’s a fairly sobering thought. It might not be entirely true — I’m confident I could find another solution to stay well, because I don’t give up — but having found something that works for me, I’m reluctant to deviate from it. I’m happy to adjust, to dial up or dial down depending on how my body is responding, but the idea of discontinuing my supplement program never crosses my mind.

I’m dedicating the next two weeks to getting entirely back on track.

So this will be my schedule:

Upon arising: 2 beta glucan capsules.
Five times per day: 16 enzyme capsules with magnesium and bromelain.
Once per day at bedtime: RNA/DNA capsules with magnesium.
With meals: “Regular” vitamins and minerals, plus two RM-10 caplets with breakfast and dinner.
Once per day before breakfast: Garden of Life Women’s RAW Probiotics.
Once per day: Half a teaspoon of organic dandelion root powder.

In addition, I’ll be doing some detox procedures (a.k.a. my home spa-time). These will include:
Once per day: Lymph stimulation with a natural bristle brush (this is a nice skin massage!).
Once per day: Foot soak with mustard and cayenne.
Twice per week: Baking soda and sea salt bath (fantastic for skin!).

For food, I’ll eat organic, relying primarily on the following staples:
Organic raw almonds
Organic raw brazil nuts
Organic yogurt with flaxseeds
Organic raw multi-grain cereal with honey
Organic apples and berries
Organic pasture-raised eggs
Organic black rice
Organic whole wheat pasta with olive oil and butter
Organic garlic
Wild-caught fish (twice per week) or organic grass-fed beef (once per week)
Organic carrots, yams, salad and other veggies (beets if I can find them)
Organic green tea
Purified water: 8-10 glasses per day

I’ll report on how I feel after following this “reset program” and sleeping at least 7 hours per night.

It’s a trek. Time to keep trekking.

May 172013
 

A post on breastcancer.org caught my attention, and I responded to it, but wanted to share my thought process here as well. I’m aware that my decision to have radiation treatment will be the most controversial part of my story for some readers, and the least controversial part of my story for other readers. So, for all readers:

I do not regret my decision to have radiation treatment. But I took control of my treatment, and I took steps to repair the damage afterward.

After an inconclusive needle biopsy (which I will never do again), an inconclusive MRI, an inconclusive excisional biopsy, and a lumpectomy that finally determined I had a non-aggressive mucinous carcinoma (not as bad as it sounds), I did a ton of research before meeting with the radiation oncologist. I determined that I would do radiation ONLY in the prone position 1. I also wanted partial breast radiation. She convinced me to do whole breast radiation, but we did it in the prone position. My heart and lungs were not in the radiation field. I insisted that the sentinel node biopsy site be removed from the field, because the sentinel nodes were negative. We argued, until I stated I was out unless the site was out. Then they agreed that this made logical sense. I also had them use 3D-CRT instead of IMRT to reduce the risk of a second malignancy from distant scatter 2.

Because I knew I was not going to take tamoxifen 3, I waited a minimum amount of time between surgery and radiation — 4 weeks 4. I had 16 treatments, for a total dose of about 42 Gray. A long-term study showed that this particular regimen was actually better for my particular tumor characteristics and my age 5. Also, this left me with sufficient headroom that if this ever happens again, I can have another lumpectomy and partial-breast radiation.

I used Boiron calendula lotion during radiation, which worked great to prevent any awful skin issues, and had some effects that proved to be temporary. I had a light sunburn that took a long time to fade. And a few months after treatment, my breast became harder. But around then, I got on my vitamin, mineral and hormone balancing program with a well-known doctor-ally. My results have been amazing, and my life has been amazing, since then. I have repaired DNA damage, and my breast became soft and normal-colored again. The dark spots that my dermatologist said would only worsen over time, have disappeared.

So, I found that I COULD recover from radiation damage. I didn’t know that when I made the choice to have treatment, but I made the decisions I felt were best with the information I had at hand, I was strategic and took control of my health decisions, and I do not regret it.

Would I do it again? I have no idea. With my health and wellness program, which gives me meaningful data every 3 months so I can see when and if I need to course-correct, I’m trying to put myself in a position where I will never have to make that decision.

Notes:

  1. Lying Prone for Radiation Best for Breast Tx, MedPage, 2012.
  2. Radiation-induced second cancers: the impact of 3D-CRT and IMRT, International Journal of Radiation Oncology, 2002.
  3. Caveat: Tamoxifen was later deemed “optional but preferred” for me by three different oncologists. I declined it.
  4. Delaying Post-Surgical Radiation Increases Risk of Breast Cancer Recurrence in Older Women, Study Finds, Dana-Farber Cancer Institute via ScienceDaily, 2010.
  5. Long-Term Results of Hypofractionated Radiation Therapy for Breast Cancer, The New England Journal of Medicine, 2010.