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Thursday, May 9, 2019

My undiagnosed chronic facial pain finally has a diagnosis

After waiting 11 months for a second opinion consultation I saw a neurologist at University of Michigan's medical center last week. He was worth the 11 month wait. Not only did he give me a diagnosis, he also gave me more insight into the condition and future testing options. But equally meaningful? He gave me honesty, empathy, and appreciation for how much work I had to do on my own since most of the medical professionals I'd sought help from for over 7 years had been kind but unhelpful at best, and condescending and dismissive at worst.

To be clear I have four unrelated (three are considered rare) conditions all currently going on at the same time and all "in my head." Literally, not figuratively. LOL. I'm listing them in order of their significance during this consultation:
  1. Undiagnosed, chronic, facial pain that began in Nov. 2010 following a dental procedure.
  2. An undiagnosed, soft tissue mass on my upper, right gum located directly between the two areas of excruciating chronic facial pain. Three medical professionals all gave me only one option a year ago when it formed to excise (cut it out) of my gum. I was afraid such a procedure could further injure my already damaged trigeminal, facial, nerve more (if it was entangled with or beside it) worsening the level and/or frequency of pain I already deal with.
  3. The discovery in February during a subsequent MRI that I have a congenital brain variant (in layman's terms: variant = defect) called a "Segment A1 Anterior Hypoplasia."
  4. The inoperable, grade 2, deep thalamic and mid brain gliomas (aka lesions and tumors) that at this point are not a concrete diagnosis because no biopsy will be done due to their locations but two radiologists, a neurosurgeon, and two neuro oncologists all concur that is what they most likely are. They showed up on the first cranial MRI that was done to try to determine a cause for the chronic facial pain in April of 2018.


1. A Diagnosis for the Chronic Facial Pain


After many long years, (even longer than this sentence LOL) including a visit to a different neurologist a year ago who was unable to make a diagnosis even after an endodontist suggested he thought it could be trigeminal neuralgia, the neurologist at UofM gave me a diagnosis of trigeminal neuralgia. (If you're curious you can Google the name of the condition or read a previous post where I described the condition in great detail with diagrams.)

When it was first suggested last April it was a devastating proposal. In brief it's an excruciatingly painful chronic condition that can worsen over time and has no effective long term treatments (pharmaceutical or surgical). Mine is short of classic symptoms in that most people develop sensitivity to the outside of their face, meaning their cheek(s), that can trigger an attack. I had pain both in my gumline and inside my right nostril, up in my sinus. I also discovered last year that the weight of my reading glasses on the bridge of my nose, pressure on a particular molar on the upper right side, as well as food, both content and hardness, were also triggers that could all set off an attack that lasted several days, several times a month. Sometimes the pain covered larger areas and lasted weeks. During this time it was almost impossible to chew or brush my teeth. But I'd still do both because they are necessary.

He also said if I have trigeminal neuralgia I have the best kind. Translated he meant that I have a very uncommon type, and the where with all, to have found a way to alleviate most of my pain through my diet and eating only soft foods since I began practicing the macrobiotics 13 months ago. He said most patients aren’t able to find their own solution. It's wonderful the macrobiotics helped give me the upper hand on the pain, but I know the condition is still there. It's as if it's lying in wait, ready to pounce if I eat the wrong thing or get so stressed I clench my jaw when awake, or grind my teeth at night.

Between the medications and/or surgery, used to treat trigeminal neuralgia, neither are a sure thing for effective or lasting pain relief. Because it is a rare condition, there are no medications made for it. Epilepsy anti-seizure medications and antidepressants are used off-label because there are no other options. But instead of treating the trigeminal nerve, they impact your entire brain. From what I researched they often only work for a short period of time and/or can cause debilitating side effects. The surgeries and physical treatments to the nerve itself are also often short lived results with pain returning and/or damage can be done that either causes the pain to worsen, or can cause permanent numbness in the face, which makes things like chewing difficult.

He said trigeminal neuralgia is rare but not that rare. That all of these doctors and dentists should have been willing to consider it as an obvious cause of my facial pain. He was genuinely surprised no one had referred me to a neurologist for over 7 years, and that once I saw one I got no further than where I'd been before I walked through his door. He also shook his head that some didn't believe there was anything serious causing my pain. He seemed as incredulous as I still am that no other doctor had helped me by giving me a referral to a neurologist for so many years while I suffered. The burning, searing, stabbing pain in my face I'd described to all of them were classic nerve damage symptoms. I didn't realize that but as medical professionals (imo) they should have.

Like I said, he was worth the wait and the 4+ hour drive to Ann Arbor. I was so happy driving home. I finally felt like I'd been heard. I've read it takes most people 10 years or more to receive a diagnosis of trigeminal neuralgia so I'm actually ahead of the curve. It only took me 8.5 years.

I told him I didn't need a diagnosis to have a label... I wanted it to know what to learn about to make sure I'm not doing things inadvertently that could make the situation worse as well as learn what can I do to make it better?

He told me I'd done a really great job getting as far as I have.

After not being believed or taken seriously for so long just hearing him say that made me feel great.

He is also making recommendations to the neuro-oncologist I'm seeing in Grand Rapids to add some other tests to the next MRI I have, if I ever have another MRI, that he feels might be helpful in gaining more insight into my situation.



2. Oral Mass


The undiagnosed mass in my mouth was another reason I wanted to see this Doctor. The mass appeared in February of 2018.

My Dentist was convinced it was an abscess as the result of a nerve dying, in a tooth that hadn't caused me any pain or senstivity, and case closed, I needed a root canal and I'd be fine. Completely dismissing I'd been in pain in that area for over 7 years. Additionally he said I could have the "abscess" removed (cut) out of my gum or treated with antibiotics if needed. He wasn't willing to consider any other possible alternative and didn't seem to believe I had been living with chronic pain for so long. He went so far as to tell met that even though my dentist in California who triggered the condition said it was possible he'd accidentally damaged a nerve giving me a novocaine injection, my new dentist in Michigan said that was so unlikely he wasn't willing to consider it. He then went on to do everything in his power to not release my dental records to me before my first neurology appointment last spring.

For over a month I requested them in person, over the phone, and by email. I received call backs but always as another hurdle I was supposed to jump to be able to receive my records. In the end I had to make an hour long, roundtrip drive, the day before my neurology appointment only to be told they didn't even have my records from California. WHAT? When I'd first called the California office they told me they didn't have them either. Ugh. When I called California back that day I was told they did have my records, they were just in a different part of the computer system. I cannot tell you how much stress this situation created. I even consulted with an attorney not to sue my MI dentist but just to ask if I had a legal right to my medical records because I was beginning to doubt I did based on his refusal to give them to me.

So my Dentist, an ENT, and the Endodontist I'd seen all wanted to cut into my gum to remove it the mass and send it to pathology only if it looked suspicious. None were willing to do a needle aspiration to see if it was the infection they all thought it was. But the Endodontist and ENT both commented it wasn’t a typical abscess because it didn't look like one. At the time there was no redness or obvious swelling but I could feel a mass approximately 1/2 in height, and 1/4" in width, beneath the gum line that was causing a prickling, pins and needles sensation in my gum directly between the two areas of chronic facial pain.

The first neurologist I saw in Grand Rapids listened empathetically, looked at my gum line, and felt the mass with a gloved finger. Then made no recommendations about what it was or how to treat it after the discovery of the gliomas upstaged it.

Still fearing that removing it might cause more damage to the already damaged trigeminal nerve I chose to not allow them to excise it and waited almost a year for the second opinion consultation with a different neurologist.

It wasn't painful but I did, and still do, feel its presence as it feels like pressure in my face even when I don't touch it and has a pins and needles sensation if I do press on it either inside my mouth or through the skin on the outside of my face.

The neurologist I saw last week is not an expert in oral masses but in his opinion it looked like a granuloma. My next question was: "What is a granuloma?" He told me a granuloma is a small, foreign particle that somehow got below the skin and caused tissue to build up around it. It could happen during a dental procedure like having your teeth cleaned, or simply eating, or I read online even a bacteria that enters a break in the skin can trigger your body to create one. The body tries to wall off the foreign matter by creating layers of tissue to surround it, then tries to push it out of the body. Which is exactly what mine has done over the course of the past 14 months.

In the past year the mass changed. It went from being below the surface of my gum to becoming a protrusion on the surface of the gum. It's also much smaller (around 2mm in diameter) than it was before having shrunk significantly in size when I started practicing the macrobiotics. It has broken open and bled a few times but hasn't gone away. A common symptom of granulomas.

It's worth noting the second Neurologist thinks the reason I was able to feel the mass developing (far earlier than most people would be aware of it) was because of the trigeminal neuralgia making that area of my face extra sensitive. That explains why the Endodontist and ENT both said they'd never seen an abscess like it before but it wasn't yet a visible granuloma they might have recognized as such.

He suggested I may want to go back to the endodontist and ask him to remove it by cutting it off with a scalpel. Since it now protrudes (and is no longer beneath the skin) there’s no longer a danger of damaging the trigeminal nerve more.

I've since read that they often go away on their own within two years. At this point I've decided to wait and see if it will and will talk to my macrobiotic counselor at our next session to see if there is a holistic way to help reverse it.

This Neurologist also suggested if it gets worse the best type of doctor for me to consult with might be an Oral Maxillofacial Surgeon. They would do appropriate vascular scans of the trigeminal nerve to make sure they wouldn't damage it more while removing the granuloma. So I am placing no blame or fault on my former Dentist, the Endodontist, or the ENT for not recognizing what it was. I only wish one of them had been willing to either do a needle aspiration which would have shown it wasn't an infection, or made a referral to an oral maxillofacial surgeon who would have been in a better position to help me figure out what was going on.

How to be Your Own Health Advocate:

What I'm about to say excludes prompt and/or necessary emergency treatments or surgeries for both acute and chronic conditions. I am not suggesting you enter a state of denial or procrastination. But if you have something like a granuloma, you can afford to take the time if you're willing to dig deep and do the research, to try to figure out exactly what is going on.

In this instance I had the luxury of time, and refused to allow multiple medical professionals to proceed with a treatment my gut was telling me not to do.

  • Had I proceeded the way my former Dentist wanted to I would have ended up with an unnecessary root canal and possibly additional damage to my trigeminal nerve.
  • Had I allowed the Endodontist or ENT to remove the mass I may have ended up with additional damage to my trigeminal nerve.
I am not a health professional but I did my own research. I turned over every rock I could find. I kept reading, looking, and asking questions until something made sense and I found the correct path to take. Despite facing a lot of pressure and dismissiveness from my Dentist last year I did not yield and took the 12+ months that were necessary to finally receive an answer, from a medical professional, that made sense to me.



3. Segment A1 Anterior Hypoplasia

About the new brain issue they found in the last MRI the Neurologist said he said he’s never heard of a Segment A1 (first segment), anterior (front of the brain), hypoplasia (malformed artery in the front of my skull) being found using a standard MRI. That a different MRI with angiographic resonance is needed to see them.

How to be Your Own Health Advocate:

When I called UofM the day before the appointment to make sure the neurology department could see the same records the neuro-oncology department was able to view last summer, they could see all of my MRI results from 2018 via a shared network the hospitals use. But, not the results from my MRI in February 2019 when this variant was found. So, I requested a CD then drove the almost 1.5 hour round trip drive to GR the day before to pick it up in case the Neurologist wanted to see the scans. He did. I could have asked that the information be placed in the file but didn't want to have to risk it wouldn't be there during my appointment the following day.


Apparently the hypoplaysia does increase my risk of an ischemic stroke and a worse outcome if I ever have one. So I'm planning not to ever have one since there isn't anything that can be done to correct it. So that’s that.



4. Thalamic and Midbrain Gliomas (brain lesions/tumors)

This appointment had nothing to do with the discovery of the gliomas. Though the Doctor did share an insight with me on why he felt the chances of the suspected gliomas were most likely not scarring because there are no bones in proximity to the thalamus that could cause damage that would produce scarring. Which doesn't mean the first neuro-oncologist was wrong to suggest it. I've read enough information online to believe and know that the migraines I suffered from for years could have caused scarring to occur. So, basically, it was confirmed that the diagnosis of the spots as gliomas can't be confirmed since a biopsy isn't recommended due to their locations.


Additionally, the Neurologist said he would try to help me find a dentist experienced at working with people with trigeminal neuralgia. He doesn’t know of one personally but would ask around the Neurology, UofM Dental School, and the oral and maxillofacial departments to try to find someone who could help me by find a dentist aware of the issues associated with trigeminal neuralgia. In most instances it is inconsequential. But if I ever need injections or when having work done, I will feel more at ease knowing my dentist will be as careful as possible to not exacerbate the damage that's already occurred.

I've also decided I am going to write a letter and send it to the 9 doctors and dentists who didn't suggest I needed to see a neurologist. Just a short, sweet, single page that explains the diagnosis and how I don't need a response or apology, I just wanted all of them to know so that if in the future they have another patient like me they'll show more compassion, consideration, AND give a recommendation or referral to a neurologist so the person can get the help they need.

It shouldn't be this hard for anyone but I know it is for many dealing with unusual or rare conditions.

Thursday, February 21, 2019

Third MRI results for thalamic gliomas


The carp (koi) is a symbol of perseverance in Japan. So it felt fitting to fold them while I waited for the oncologist to come in and go over my third, Valentine's Day (so romantic,  MRI test results earlier this week. Thank you to my friend Kathryn for going with me. We went out to lunch after at one of the few places I feel comfortable eating out at with my macrobiotics and made a fun afternoon of it.


The good news. The gliomas have not increased in size or quantity since the second MRI in August.

The not so great news? The third MRI found another bizarre thing in my brain. It's a fetal defect called a Segment A Anterior Hypoplasia. Translated, a major artery on the right side of my brain never developed fully when I was a fetus. There's nothing to be done and the doctor suggested there's also nothing to worry about. That this isn't an uncommon occurrence though mine being in the front of the brain instead of the back of the brain makes it more unusual from what I read online. I also read it is most problematic if you have a stroke. I'm not planning on having a stroke so I've decided it's not something for me to be concerned about.

Then came a discussion about what's next?

I shared with her my thoughts and feelings that I didn't want to do a lot of MRI's in the future after having three in the past ten months. I opened with: "From what I've learned on the internet... I paused for laughter. We both LOL'ed... it appears that there really isn't an effective treatment for thalamic gliomas that progress past stage 2 (what I have)."

If they progress to stage 3 or 4 things are pretty much over. If and when that happens they typically become astrocytomas or glioblastomas, the two most aggressive forms of brain cancer. A small portion of people do recover from stage 3 or 4 but I haven't found a single documented case of that happening when the cancer is in the deep, inoperable part of the thalamus. It's usually in an area where the tumor can be removed surgically and supportive treatment whether that's chemo, radiation, or a holistic path are the post-surgical course that turned things around towards remission.

At my first consultation she had mentioned that if that happened I could try chemo. But from what little I was able to glean online chemo isn't a cure and usually doesn't lead to remission. It buys you a handful of months and can also cause cognitive damage that can impair one's quality of life. Her reply was: "That's correct."

 It was a frank discussion because I've already made the decision I would choose quality over quantity of life, therefore I don't see the point of having more tests done. If the news were to ever come back they are worse, I'd waste some of the time I have left waiting for them to get bad enough to begin causing symptoms. That isn't how to maintain quality of life either.

I told her learning they were worse wouldn't change anything else about my life but to cause more stress. There isn't anything I want to do, nowhere I want to go, I'm exactly where I want to be doing what I want to do with the person I want to be with. In a strange way it's still a happily ever after kind of place to be.

She agreed that if I wouldn't want to pursue treatment it was fine with her to not monitor them so closely. We left it at I would come back in a year for a follow up MRI.

I also decided against the spinal tap she had recommended, based on the radiologist's suggestion I should be tested for MS. Neither neuro-oncologist in Grand Rapids or Ann Arbor (where I went for a second opinion) believe I have MS but said it had to be suggested because of the radiologists recommendation.

If the test came back that I did have MS the only treatment option would be lifelong medications. I'm not interested in pursuing that course either and since I have no symptoms, again, why find out now?

So now I'm going to focus on carrying on, moving forward, and not giving the gliomas any seat at my table. If they get worse then that's that. But there's also the chance they will never become more than what they are and won't impact my health or life except for the better by making me take better care of myself and appreciate each precious moment while I'm here.

__________

I still have a neurology appointment at U of M (scheduled last June) for May of this year. That's how long the wait is. This is for the trigeminal nerve damage that caused severe pain in my face for almost 8 years and from time to time still flares up but nowhere near the intensity of pain that it did before I started the macrobiotics.

Thursday, January 10, 2019

A video update :)


Personally:

The good news is I am working with a wonderful team of professionals (each of whom I mention in the video) who have helped me to let go of the fear of the discovery of the tumors and to realize that my prognosis is very much in my hands. That what happens next isn't necessarily a random, pre-determined thing that I have to sit around and wait for to happen to me. I can, have, and continue to make changes to give myself the best chance at a best outcome by making the brain tumors reverse and go away.

I continue to recommend the HEAL documentary movie to anyone who is interested in learning more about the mind + body + spiritual connections and how they can facilitate healing. It combines Western medicine with Eastern medicine and many holistic modalities of healing along with spirituality all rolled into a single movie that has helped me to move forward in the most positive possible way.

The video also contains a very heartfelt thank you to all of you who have offered your prayers, good energy, thoughts, love, support to me since I published the last video in May of 2018. Thank you also for the cards and gifts. I'm still working my way through responding personally to each and every person who has mailed me something. I'm sorry it's taking so long but I will get to you. Hopefully in the near future.

Medically:

My next MRI is in February 2019. You can look for an update here on my blog towards the end of the month.

Friday, December 28, 2018

Advance Your Art Podcast Interview with Artist Stacie Tamaki

A few weeks ago I was interviewed by Yuri Cataldo, host of the Advance Your Art Podcast. I first learned of Yuri's podcast when Ross Symons, one of my most favorite origami artists, was interviewed by Yuri a year and a half ago. I left a comment on Ross's Instagram post which I believe is how Yuri discovered my miniature tinygamis.

Yuri is a renaissance man who is passionate about helping people advance their art and lives both trough his podcast and business. His resume includes being a founder-creator, strategist, podcast host, and more. You can read all about what he does, what he's done here: http://www.yuricataldo.com/

We chatted about when I learned origami, how it progressed from a hidden hobby to my full time profession, briefly about the diagnosis of the brain tumors that were discovered this spring and how they've impacted my art, why do I create, and what is my art's purpose in my own life and the lives of those who view it.

For the curious you can find the interview at this link: http://www.advanceyourart.com/stacie-tamaki/


Wednesday, October 31, 2018

Eating, cooking, and shopping macrobioticly

My third macrobiotic counseling session in August went well.

My counselor Denny Waxman and I conduct the sessions over Facetime which always feels like the universe is pulling for me as my success with Facetime usually ranges from not available at all to only available for a minute before the screen lags, freezes, and/or goes black. But for my macrobiotic consultations I've been able to conduct a 90 minute consultation in April followed by a 60 minute consultation in June and August with no disruptions whatsoever. Miracles. LOL

Udon noodles with toasted brown rice mochi, vegetables, and wakame seaweed

Each time we begin with my updating Denny on what is going on in my life/health. I share with him how my doctor's visits have gone, how I'm feeling, if I have any new particular health concerns, and how well I've been adhering to the recommendations he's already given me. He then tailors my diet and lifestyle suggestions off of all of the new information recommending new foods to eat, foods to discontinue using for now, how to best prepare everything for my condition, and using particular holistic therapies like body rubs, soaks, and/or compresses.


Right now my body is moving from a state of detoxifying to healing itself through the food I eat. Whenever possible I use organic. Worth noting is that even foods that may sound familiar (i.e. miso, pickles, and sauerkraut) are of macrobiotic quality with no sugar, pasteurization, or artificial preservatives added.

Because I've lost so much weight (over 25 pounds to date with my current AM weight at 94 lbs) and have seen some health concerns correct themselves, one of the most frequently asked questions I receive is: "What do you eat?" Here is a basic guideline of most of what I've been eating and how I prepare everything:

FOOD CHOICES (Some regularly and some occasionally)

Polenta with kim chi

Grains: Pearled Barley, hato mugi barley, medium grain brown rice, farro, millet, polenta, teff, wheat bulgur

Beans: Azuki, black beans, black soy beans, cannellini, chick peas, green lentils, kidney, navy, pinto, tofu

Pan Toasted Nuts: almonds, hazelnuts, peanuts, pecans, walnuts (raw)

Cruciferous Vegetables: Broccoli, Brussels sprouts, cauliflower

Leafy Greens: Bok choy, cabbage (green, napa, red, savoy), kale (all varieties), Swiss chard, watercress

Root Vegetables: burdock, carrots, parsnips, onions (green, leeks, yellow, white), radish (red and daikon), sweet potatoes, turnips


Vegetables: Celery, corn, cucumber, green beans, squash, Hokkaido pumpkin

Sea Vegetables: Dulse, konbu, nori, wakame

Mushrooms
: Maitake, oyster, shiitake

Fruit: Apples, berries (wild blueberries, wild black raspberries, raspberries, blackberries), cherries, nectarines, pears, plums, oranges, lemon

Whole wheat ramen with toasted black sesame seeds

Pastas: Brown rice and whole wheat udon, ramen, somen, whole wheat Italian pastas

Fermented Foods: Kim chi, miso, overnight lightly salted vegetables, sauerkraut, takuan, umeboshi plums

Hosomaki sushi with umeboshi plum paste and pickled cabbage

Seasonings and Condiments: garlic, ginger, lemon juice, sesame seeds (brown and black both toasted and ground), shoyu, Si brand sea salt, ume-shiso powder, vinegars (ume and brown rice)

Cooking Oils: Expeller pressed sesame oil kept in the fridge brushed onto my cast iron pans for sauteing

Sweeteners: I use brown rice syrup and mirin sweet rice cooking wine rarely to occasionally

Beverages: Kukicha tea and water

Homemade black bean hummus and corn tortillas

Snacks: Brown rice mochi, hummus with soft corn tortillas, nuts, dried fruit

PREPERATION/COOKING STYLES

Most of my food is steamed, blanched, boiled, or sautéed, and pickled/fermented. I eat a small amount of raw vegetables occasionally.

COOKWARE
I now only cook in clay pots, cast iron, or stainless steel cookware.

FOODS I NO LONGER EAT

Processed Foods including those that sound like health foods and meat and dairy substitute products.

Meat: Beef, pork, poultry, all fish except occasionally (once a month) wild caught, white meat fish, usually, cod in small portions

Dairy: Butter, eggs, milk, yogurt, etc.

Hard Foods: Crackers, cookies, popcorn, or sourdough bread that hasn't been steamed to soften it first

Ice: Anything frozen

Sugar and Sweetners: Agave, artificial sweeteners, sugar (cane, coconut, date, palm), high fructose corn syrup, honey, or maple syrup

Vegetables: beets, tomato, potatoes, zucchini, spinach

Fruits: All tropical and temperate fruits like pineapple, mango, banana, etc.

Yeast: All products with the exception of sourdough bread that uses starter made from natural airborne yeasts and not active dry yeast

PREPERATION/COOKING STYLES I NO LONGER USE

Baking, deep frying, grilling, roasting, smoking are not on my menu these days

COOKWARE I NO LONGER USE
Every type of nonstick, aluminum, tinned copper

OTHER FAQ QUESTIONS I'VE RECEIVED

Q: How long does it take to prepare macrobiotic meals?
A: Not too long. When pressed I can make a meal in 15 minutes as I usually have some things batch cooked ahead like grains and beans and sometimes even vegetables already steamed.

When cooking without fat and oils most vegetables taste good even cold from the fridge such as already steamed leafy greens or some leftover sweet potato that was cooked in a clay donabe pot. 


I reheat grains either in a petite clay pot on the stove top or even put them in a saute pan when I'm done making veggies. The hot pan usually holds just enough heat to warm the rice/grains nicely.

Things like already refrigerated millet and polenta can be mixed with water to turn them back into a porridge or sliced and sauted loaf style.


All grains can also be reheated with water to create a porridge. Sometimes I'll mix in some already cooked adzuki beans to make a heartier porridge.

Noodles take no more than 4 minutes to boil and can also be refrigerated if there are leftovers.

Cooking things like beans and grains take approximately an hour but very little prep time and I can busy myself with other things as it cooks.

Q: Where do I obtain my ingredients?
A: From both local stores in Grand Rapids and the internet.

It would have been much easier to pursue the diet when I lived in California as the number of health food stores within close range was extremely high. Here in West Michigan? It's approximately a 45 minute drive to shop at the two (Harvest Health and Fresh Thyme) closest health food stores to my home.



Online I order many products including Mitoku brand misos, mushrooms, noodles, beans, grains, mochi, condiments, seaweeds and dried vegetables like lotus and burdock from Natural Imports.



I found my clay donabe pots online at Toiro Kitchen and the green rice and grain steamer at Herron Avenue Studios on Etsy. 

CALORIES
And even though my macrobiotic counselor has urged me not to be concerned about calories I'll admit I have been because it's a little scary when you begin to rapidly lose weight. I looked online to find the calorie count of many of the things I'm eating and realized as long as I eat a cup of grains with each meal and eat a single 1 cup serving of both sweet potato and beans each day they would set me up with a default of 1000+ calories per day. As you can see veggies don't add a whole lot more but I've been trying to consume about 1300 calories per day.

I also want to point out that our bodies need carbs. What they don't need are the highly refined and processed carbs that so often fill the standard American diet. Whole grains as complex carbs give our bodied needed nutrients and won't cause weight gain if they are of high quality and eaten in healthy, rather than excessive, amounts.

In the most simple terms I'm now eating nutrient dense foods that are low in calories. I used to eat a standard American diet which is high in calories but low in nutrients. So 1300 calories a day may sound concerning but I'm certain they are enough to help restore my body to a natural state of health.

My natural adult weight of 91 lbs (that I was most of my life) is most likely where I'll end up. That's been a little alarming to many of my friends here in MI. When I arrived in 2014 I weighed 125 lbs. So to see me reduce to a weight significantly less than how they have known me has caused some concern. And my mom too. But it's ok. I've become comfortable with going back down that low as long as I was able to do it more slowly than the process began back in April when I was dropping a pound a day.

So here are the calorie counts I looked up:

GRAINS
1 cup teff 255
1 cup millet 207
1 cup brown rice 200
1 cup farro 200
1 cup pearled barley 193
1 cup whole wheat pasta 174
1 cup bulgur wheat 151

PASTA
Udon 1/5 package 200
Ramen 1/5 package 200
1 cup Whole Wheat Varieties 159-174

VEGGIES
1 cup steamed sweet potato 180
1 cup cooked leeks 161
1 cup parsnip 100
1 cup cooked carrots 82
1/4 cup onions 68
1 cup steamed broccoli 62
1 cup steamed cauliflower 62
1 cup cooked celery 60
1 cup napa cabbage 13
1 cup bok choy 9

BEANS
1 cup Adzuki 294
1 cup Chick Peas 268
1 cup Cannellini 249
1 cup Lentils 230
1 cup Kidney 225
1 cup Black Beans 227
1 cup Black Soy Beans 240
1 cup Black Turtle 240
1 cup Pinto Beans 244
1/4 cup tofu 47

FISH
2.5 oz Cod 71

FRUIT
1 Bartlett pear 100
1 Honey crisp apple small 44
1 Orange 44

SEAWEED
1 Sheet Nori 5
1 TBS Wakame 2

NUTS
1 Almond 7
1 Walnut 13
1 Pecan 20
1 Peanut 6
1 Hazelnut 9

SEASONINGS
1 TBS Brown rice syrup 75
1 TBS Tamari 11
1 tsp Miso 11
1 Shitake mushroom 6


CONDIMENTS
1 tsp sesame seeds 17
1 Nori one sheet 10
1 Umeboshi plum 3
1 TBS sauerkraut 2
Umeboshi vinegar 0

FATS
1 tsp Walnut oil 40 4.5g
1 tsp Sesame oil 40 4.5g

Things are on track and I'm feeling wonderful these days. I'll be doing a post about ArtPrize and a new Dr. I visited this month in IL. It's all part of my life journey and my journey to heal :)

Friday, August 24, 2018

Second opinion at University of Michigan

My second opinion neuro-oncology appointment went well.


The Doctor at UofM concurred with the first Doctor in Grand Rapids on all counts. I wasn’t expecting any significant conflicting opinions.

The limitations of diagnosing tumors that samples/biopsies can’t be taken from due to their locations means there isn’t a definitive diagnostic option for now. The MRI’s and spectroscopy test offer the best opportunity which have led to several possibilities.

This Doctor seemed to feel the elevated choline level from the spectroscopy test also meant the spots in my brain are more likely to be gliomas.

For those keeping score the consensus by a neurologist, two radiologists, a neurosurgeon, and two neuro-oncologists is they are most likely slow growing, Grade 2, deep, bilateral, thalamic gliomas. From what I've researched online Grade 2 gliomas will eventually progress to become Grade 3 or 4 gliomas. Those are really bad causing the most highly aggressive forms of brain cancers: Astrocytomas and Glioblastoma. But that's something to worry about if and when it ever happens.

She also suggested that tissue in my brain simply isn’t like the rest of the tissue around it. That that might be normal, for me. Like a mole on your skin. "So I might have brain moles?" I asked. We all laughed. LOL

Her advice? Try not to worry about them. They may never become more than they are at this moment. If it weren't for the incidental finding in the April MRI you wouldn't even know they are there.

To date I continue to not have any symptoms.

She also agreed I should do the spinal tap the first Doctor recommended to rule out Multiple Sclerosis. Neither of them think the imaging strongly indicates MS but because the radiologist suggested the possibility of demyelination (damage to protective nerve sheaths that can cause all kinds of problems) it should be investigated and ruled out.

After much thought I've decided to wait until February to decide if I will have the Spinal Tap. My reasons being:

1. Both Doctors don't think I have MS

2. I am most concerned that I may have heightened nerve sensitivity. That would mean there is a chance that a needle could nick a nerve and cause more nerve damage like the dental procedure that triggered the treigeminal nerve damage which caused the chronic pain I suffered from for almost 8 years until the macrobiotics made it go away. So needles going deeply anywhere into my body are something I am wary of.

So after much consideration I've decided I want to wait until after the third MRI in February. If the macrobiotics have reversed the spots in even the slightest way I will hold off on the spinal tap. If they haven't reduced at all or have gotten even slightly larger I will proceed with the spinal tap.

Part of the process of a spinal tap (aka lumbar puncture) is a series of lidocaine injections administered in a ring around the spine to numb the area before the needle used to draw out the sample of cerebral spinal fluid is inserted deeper into one's back. Again, many opportunities for a needle to nick an overly sensitized nerve and trigger new and ongoing back pain.

I spoke with the doctor two days ago about foregoing the local anesthetic. I have had lidocaine injections, twice, when I needed stitches and can easily say the lidocaine hurt far worse than the injuries themselves. Having lived with the pain of the trieminal nerve damage for years and other miscellaneous painful incidences in my life, I think I could handle the procedure without it.

She winced a bit when I suggested it, said she would want anesthetic if it were her, but also said she knows medical professional who had opted out of anesthetic when they have had the procedure performed. So that's good enough for me.

And don't forget when I turned 50 I had that unsedated colonoscopy... And blogged about it. LOL. Yes, there were moments of pain. About 4 of them that lasted for a few seconds each. IMO they wouldn't have been worth having the sedation for since I often have negative reactions to chemicals both in and outside of my body. Not only did it make the procedure cost less, it also meant I was able to chat and ask questions in real time and watch the entire procedure on a video monitor.

SHOPPING IN ANN ARBOR

To make the day less stressful and more fun my friends Angela and Anette offered to go with and drive me to my appointment. Even though the appointment wasn't until mid-afternoon we got to Ann Arbor bright and early stopping by all of my favorite places to shop.


At Downtown Home & Garden I found tiny dishes and ceramic fermenting weights so I can make my own sauerkraut and kimchi from scratch.


At Hollanders paper store I found some paper to incorporate into my this year's mixed media, ArtPrize entry and some hilarious greeting cards. I got several to frame. This is my favorite one. Insert "Travel the Country in a 4'x6' RV," or "Move to Michigan" or "Be a Full Time Origami Artist" at the beginning and it's SO ME! LOL. We were laughing loudly and hysterically which is great medicine for anything that ails you.


I also revisited "Found Gallery" and found a cute friend for the tiny, floating, porcelain, fantail goldfish I bought on Etsy last year. It sits on my work table in the studio. I'd often felt it looked a little lonely.

But then this happened too...


Someone really should have stopped me. LOL. Now I need a bigger bowl!


After lunch we walked upstairs to SPUN. I found a beautiful yarn I'm going to try to incorporate into my ArtPrize entry this year. If I lived there I'd be taking every class they offer.

Because we spent the day there and my appointment didn't end until after 6:00 PM and it's a two hour drive back to Greenville I packed both my lunch and dinner to bring with me so I could stick with my macrobiotic food on the road.

I made onigirazu rice balls. They're like onigiri but you use an entire sheet of nori seaweed, fill it, fold the seaweed over the rice and fillings, let it sit until the nori clings to the rice, then slice it in half and eat it like a sandwich.


This one was filled with red azuki beans, a little yellow sweet potato cooked with the beans, and brown rice. I layered half of the rice down first, spread some salty, umeboshi plum paste across the rice, added more rice, the folded the onigirazu up. It was delicious, easy to eat in the car, and a great energy boost containing both healthy complex carbs in the rice and protein in the beans. I also made sure to bring side dishes that would be easy to eat while sitting in a moving car.

So it was a good day. No new bad news and endless laughter with Anette and Angela. That's how we roll whenever we're together. Had the doctor had contrary opinions to the first I would have sought a third opinion. For now I'll hold tight and wait for February to roll around and we'll see what happens then.

My macrobiotic counselor told me that it can take four months of practicing macrobiotics full time to begin reversing a condition. So I'm just getting there tomorrow. If they are gliomas and not scar tissue or brain moles (lol), six months from now it wouldn't be unheard of to notice improvement in the next MRI.

Thanks again for checking in and for the kind words of support so many of you have left on social media and sent me by private message and email. They always brighten my day and lift my spirits <3



CLICK HERE to Send a Question or to Comment



The information and suggestions in this post are given from a personal perspective and should not be interpreted as professional medical advice. Please consult a professional Counselor or Doctor to help you find your way to better health.




Thursday, August 16, 2018

Second MRI results and what I've been up to

For those who saw the update I posted on Instagram two days ago after the follow-up consult for my second MRI I'd like to thank you for your kind comments and private messages. I appreciate all of the good energy, positive vibes, prayers, and love you all sent to me.

When I saw the early morning mist out in the back meadow when I woke up a few days ago I didn't hesitate to run barefoot across the yard to snap this picture before it dissipated. It conveys the beauty of where I live and the calmness and serenity I am always striving to create in my life. Especially now.

Some days it's harder to do that than others but it's been becoming easier as this whole possible brain tumor situation has helped me to speed up making realizations about who I am, who I want to be, why I'm here, my true purpose in life, and what truly matters to me.


I will say I am now pretty much beyond worrying about all of this. I just need time to continue improving my diet, lifestyle, and emotional state so that my body can heal.

On the way to discuss the second MRI results with my neuro-oncologist I listened to Deepak Chopra in my car on the hour long drive. I'd purchased the HEAL (Documentary) Summit (Click to view the most viewed summit talk by Dr. Joe Dispenza for free) and loaded all 18 segments into my iTunes. That was a wise decision. His message was spot on to listen to on my way to find out what the scans had revealed.

His voice is so calm and soothing and his manner of speaking is so elegant that his manner and wisdom helped me to remain centered. As I listened to him speak of equanimity and transcendence (a state of meditation) I realized what he was saying to me, in that moment, was "Girl, calm the heck down. Everything is going to be ok no matter what you're told." LOL

THE GOOD NEWS:
  1. The spots have not increased in size or multiplied.
  2. There was no vascular activity detected, which would have meant tumors.
  3. Instead of the next MRI being scheduled for November it's been moved to February, so six months from now instead of three as long as I don't develop symptoms that they are changing in size or quantity.
  4. The doctor is not ruling out brain scarring even though the radiologist didn't include them as a possibility in the differential.
THE BAD NEWS:
  1. A slightly elevated choline level in the spectroscopy test tips the scale slightly towards tumors.
  2. I'll be having a spinal tap in the near future (along with two blood tests) to rule out Multiple Sclerosis. The Neuro-oncologist doesn't think I have MS but wants to rule it out as the radiologist listed a "demyelination focus" as "difficult to completely exclude." Meaning there is a possibility.
  3. The "indication" of what the radiologist thinks they are is now listed as "low grade glioma." In April they were referred to as "lesions." Though they are also referred to in the report as "low grade neoplasms." Words that are similar in meaning but glioma is the most serious of the options. 
So all in all I think the consultation went well and I'll be going for a second opinion next week at Michigan Medicine (aka University of Michigan).

It's amazing to me how many emotions I've experienced since all of this began in April. I made an appointment with my therapist last week and was telling him how I feel like I have a handle on the health issue itself. I'm in a very good place with accepting and dealing with it. But there are other areas of my life that need more work to truly release some stress and negativity that I have held onto for far too long. It's time. It will empower me and help me to heal whatever is going on and will bring more contentment to my life  moving forward.

So what else have I been up to?


My macrobiotic diet and lifestyle plan continue to go well. I am so happy I started them back in late April. My current weight is now hanging around 99 to 100 lbs. This has made some people concerned I've lost too much weight. It's ok. I weighed 91 lbs most of my adult life so most likely I'll end up around there. It does mean a cushion makes sitting a lot more comfortable on a floor or chair with no padding but so far that's been the only real drawback.

The Swiss chard, kale, and carrots in the food pictures above all came from my neighbor Ron's garden. He is so sweet. He brought me a beautiful bouquet of flowers the other day and all of the vegetables he had grown over the summer that are on my recommended food list of the things I should eat. He also brought a Hokaido pumpkin, some radish, cucumbers, and green beans as well as two books about recovering from cancer, one of which included macrobiotics and my counselor Denny Waxman's most famous client who he helped to recover from stage IV metastatic prostate cancer.


I shared this picture of the flowers he brought me on Instagram the other day with the comment:

"Just my opinion... When something bad happens in your life never focus on the people you thought would care but don’t. Instead focus on the people who do care and make sure you know in a thousand different ways. No one is obligated to care about me, or you. But there will always be those that do. I am grateful and blessed to be loved by many..."


I also went berry picking for the first time. The plan was to pick blueberries with my friend Anette and her friend Diana. We did until I wandered off and switched to...


Black currants! I was quite excited to learn there was also a currant patch with red, white, and black currants. I've never seen currants before so I picked some to dry. The thing is I don't have a dehydrator so after some experimenting and searching Google for a DIY tutorial I figured out to wash them, poke a hole in each one with a pin, then improvised a solar oven by setting them in my car to dry them. LOL

BTW they may have lots of nutrients in them but they taste pretty awful. Like so bad even ants and flies wanted nothing to do with them. For real. At first I covered them with mesh but then noticed no bugs of any kind were going near them. Even when an ant walked across the dining table while the tray was sitting there it never went near it. And when a fly got in the house it didn't either.


I hosted the August West Michigan Origami folding club meetup. There were only five us but we had a great time. We made renzuru cranes where both cranes were connected by their wingtips, folded from a single sheet of paper, box turtles, and carp/koi. We also hosted our first paper swap which was quite fun bringing along papers we haven't used and trading them for papers we will.


And went back and picked up where I left off in my studio in April when the discovery of the spots in my brain came in. I had to literally relearn the way I had modified the traditional dragonfly fold. It took a few hours but I did it and made a step by step tutorial this time. LOL


I also went out to vote in the Michigan primary election.

I vote to honor the sacrifices of all veterans but especially those of my dad and the men he served with. I am fortunate to be Facebook friends with Lt. William Funchess, who wrote a book titled “A Thousand Days of Torment.” It describes the time he, my dad, and their unit spent in a North Korean POW camp. To this day I don’t understand how any of our soldiers survived.

For them and all veterans who have fought for freedom and democracy I vote in every primary and general election. It’s the least I can do.

If you are interested in reading their story you can order a copy of the book from:

SC Military History Foundation
1 National Guard Road,
Columbia, SC 29201

Lt. Funchess told me they are $15 each--and they pay the postage.

I'm also working on my ArtPrize entry. You can read more about it here on the ArtPrize website and see the first photo I've shared of it. I'll be adding more pictures as it progresses in the coming weeks.

So that's just a little of what has been going on here. I hope things are good in your corner of the world and thank you for coming back to check in on me.



CLICK HERE to Send a Question or to Comment



The information and suggestions in this post are given from a personal perspective and should not be interpreted as professional medical advice. Please consult a professional Counselor or Doctor to help you find your way to better health.


Friday, August 10, 2018

Second MRI and a sign that I'm on the right path

My second MRI took place a few days ago and I'm waiting for the results. The post-procedure consultation with the neuro-oncologist in Grand Rapids is scheduled for early next week.

SIZE

I will be ok with the results no matter what they are. The possibilities regarding the size and quantity of the spots in my brain (I currently have two, one in each side of my thalamus with the left spot extending into the midbrain) are:

1. The spots may have become larger or multiplied. This is ok. Not ideal, but ok. My macrobiotic counselor told me back in April that it can take four months to stop the progression of a condition once you begin macrobiotics. So this MRI being performed at three months is a bit early and means I may not see the results from my efforts until the next scheduled MRI in November.

2. The spots may have stayed the same. This could mean they are tumors or scar tissue.

3. The spots may be smaller or might be gone completely.

 VASCULAR ACTIVITY

The extra tests that were performed this time may reveal if there is vascular activity. If there is it means they are tumors. If no vascular activity is detected it may mean they are still tumors with undetectable vascular activity or they are scar tissue.

A RIDE

Because I didn't expect there to be any side effects after the test in April I stopped by the grocery store on the way home. Next thing I knew I was feeling queasy and nauseous. As it turns out this isn't typical. Usually people feel sick the moment the contrast dye is injected into the the catheter they place in your arm. Mine appeared to be a delayed reaction. I'd driven myself and regretted that as it was almost a 45 minute drive home but because no sedation is required they told me I didn't need anyone to drive me.

This time my friend Katherine offered to drive me even though it meant she had to leave her house at 5:30 AM to get to my house, then get us to Grand Rapids by 7:30 AM. I have amazing friends <3 Thank you again Katherine.

THE DRIVE THERE


I had gone to bed with a great plan of making a light breakfast before I left but woke up to my stomach in painful knots and I couldn't eat a thing.

Once on the road Katherine had more questions about macrobiotics than we had miles to drive so we chatted the entire ride there and even while we were waiting once we arrived at the hospital. It completely distracted me and my stomach stopped hurting.

When the nurse came for me I asked if Katherine could come back with me. There was only one chair in the room where they do your info intake and you change but I didn't care. I was thinking she was like the horse that goes to the gate with a race horse, it's buddy that help keeps it calm. She did such a fantastic job of calming me down that I secretly in my head decided she is my ESA (Emotional Support Animal). The good news is if I ever need to I can take her on a plane with me. Unlike the emotional support peacock I read about in the news that was banned from an airline flight a few months ago. LOL

MISO SOUP

Because of the extra tests I was given even more contrast dye than I'd received in April. Knowing it might make me sick again I decided to do something about it. This time was different. After the testing was completed I tried something new. Years ago I'd read about a hospital in Nagasaki Japan where the people in it didn't experience acute radiation poisoning after the atom bomb was dropped. Studies have shown that miso soup with wakame seaweed has an amazing ability to protect us from the effects of radiation. So, on that theory, I made a batch of miso soup with wakame and shiitake mushrooms, the same kind I have each morning, put it in an insulated coffee travel cup and brought it with me. As soon as I was back in the dressing room when the testing was over I began sipping it and sipped it the entire drive home. No side effects this time.

THE DRIVE HOME

The trip home was just as uplifting as the drive there. This time we discussed the HEAL documentary. I was telling Katherine how I'd listened to the HEAL Summit online and ended up purchasing a copy of it. How the movie was a combination of the value of traditional western medicine and a more integrative approach meaning how the mind, body, and spirit all play major roles in determining our health and outcomes from illnesses and injuries. It isn't always just bad luck, genetics, or fate.

We talked in depth about how it was during the summit that I made the startling realization that I have always viewed the world through the lens of quantum physics. Say what? I know. I was shocked. And confused. And amazed. It would be hilariously ironic except for the fact that this perspective is what I would attribute a lot of my depression to over the past several decades because I didn't understanding what I was experiencing.

For as long as I can remember I have always felt a connection to all living things.  Plants, animals, the earth, and people. What I learned in the summit is that all living things are connected by energy. For as long as I can recall I've used the term "connected by fine cosmic threads" even though I know nothing about the cosmos. In the movie, author Gregg Braden used the word "entanglement" to describe the same connection. I have always had an inexplicable connection to people and animals that while unfocused, has nonetheless always been who (and how) I am.

So because I have always felt this connection, it made me feel incredibly lonely and isolated because I hadn't ever known anyone else, or wasn't aware that I had, who viewed the world in the same way that I did. I grew up mostly being told I was oversensitive. Why did I seem to hurt more deeply on an emotional level? Why do I worry about others (both people I know and people I don't know) so much? Why do I worry about nature so much? It's because I have always innately believed they are a part of me and I am a part of them. That we are connected.

As Katherine drove I looked out the window of her car and suddenly saw a flock of sandhill cranes take flight from a field just out my window. There were 11. It happened so fast I had to turn around to count them. I have never seen a flock of sandhill cranes in flight let along take flight just as I am beside them. I was so excited. I exclaimed "They're a sign!" She asked  "Of what?" I replied "I don't know!" LOL

She asked what does the number 11 represent in numerology? I had no idea. I Googled when I got home and found several definitions. All said that there are only three master numbers and 11 is one of them. I have no doubt this is what the cranes symbolized. It is exactly what we were discussing on pretty much the entire drive home:

"The 11 symbolizes the potential to push the limitations of the human experience into the stratosphere of the highest spiritual perception; the link between the mortal and the immortal; between man and spirit; between darkness and light; ignorance and enlightenment. This is the ultimate symbolic power of the 11." (From Numerology.com)

Since visiting and moving to Michigan this is the third times cranes, or a single crane, in flight have given me a sign that I am on the right path. And I have to say that seeing them take wing or soaring in flight is so much better and more beautiful than "the sign" the bird that pooped on Diane Lane's head gave in "Under the Tuscan Sun" ;)



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The information and suggestions in this post are given from a personal perspective and should not be interpreted as professional medical advice. Please consult a professional Counselor or Doctor to help you find your way to better health.