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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.

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.


Thursday, August 2, 2018

Strange bruising and great lab results

Even though the macrobiotics have already done wonders putting an end to my trigeminal nerve damage (aka chronic facial pain of 7+ years), I decided to do more to help my body heal.

Back when I lived in California my friend Holly Tse wrote a book titled "Sole Guidance" Chinese foot reflexology. I remember reading a blog post titled: 5 Simple Habits to Improve Eyesight Naturally and her Facebook posts about how practicing these habits and reflexology had allowed her to recover her vision and not need glasses any longer.

As someone who had better than 20/20 vision most of my life I was tempted to follow her lead but didn't think I had the discipline to do all that is required. After living a macrobiotic lifestyle and diet the past three months I realized I do have the discipline it takes, nothing is more important than my health, and reflexology might help what is going on in my brain. So, I ordered her book.


Upon first reading it I focused on the pressure points in the order she suggests them in beginning with the kidney, bladder, and lymphatic drainage points. The next chapter focused on the brain, temporal (including the trigeminal nerve), and heart points.

So here was my big surprise. After the very first night? I woke up in the morning to discover that for the first time in years, some mild lower back pain that only bothered me at night when sleeping on my stomach hadn't woken me up that night. The following night was the same. I immediately realized that the pain that had been there for at least the past 5-6 years was seemingly gone. That was back on July 7th. It's now August and still no more pain.

The other morning I woke up at 5:00 but didn't want to get out of bed. I wanted to let my body rest even if my mind was done sleeping. So I laid on my stomach to see how long it would take for my back to ache. It never did.

But here's the really weird part. After the second day of no lower back pain as I slept... I noticed my back in the bathroom mirror. It was bruised. Not a little tiny bruise. It was a huge bruise that encompassed my entire lower back. The skin felt slightly thickened along my spine and the entire area looked sunken in. Like this...


It was more than a little alarming. I called my Primary Care Physician on July 9th but the earliest they could see me was July 24th. I scheduled the appointment but by the time it came the bruising was all gone. I went anyway because I'd taken a picture that I could bring with me and a friend had suggested that the bruising might be related to my diet.

I went online to research if that was possible but it didn't make a lot of sense that every nutrient deficiency I could find that related to bruising all recommended eating more leafy greens and vegetables. LOL. I eat leafy greens and vegetables three times a day, often two different kinds at each meal. I've never eaten so many leafy greens and vegetables in my life! But I went and the doctor ordered blood tests just to make sure that wasn't part of the problem.

I wouldn't have been surprised if I had begun to become nutrient deficient, three months into my new macrobiotic lifestyle and diet (no sugar, dairy, yeast, and meat except for an occasional serving of wild caught, white meat fish). My PCP ran a Complete Blood Count, a Comprehensive Metabolic Panel, and these additional tests to look for specific nutrient deficiencies. The tests showed I wasn't nutrient deficient at all.


Because it was going to take so long to get in to see my PCP I sent the photograph of the bruising to my Macrobiotic Counselor, Denny Waxman. He said he thought it looked like an elimination process and that it was a good sign. Upon reflection I do think it's possible that my body was pushing out toxins it had probably held onto and stored for decades. After a few days the bruising cleared up and hasn't come back.

I'll add that I had begun doing evening, salt, foot soaks around the same time as part of my macrobiotic program. So perhaps it was the combination of both modalities that brought about this strange result?

I am taking this all as a good sign that my body wants to heal itself. I just need to figure out how to allow it to do so without hampering its process. My diet and avoiding as much new stress as possible continue to be my top priority. Processing a lot of stress I've held onto for years is also a big part of my solution. It's not easy. In fact it's damn hard. But, it's what is necessary not just because of the spots in my brain but for my own emotional well being.

I am hoping by sharing this journey I will indirectly help others find their own path to better health, a higher quality of life and contentment.


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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.


Monday, July 30, 2018

Feeling empowered


So today I got some news that could have felt bad but instead meant nothing (to me). My appointment at U of M Neurosurgery (for a second opinion) next week has been canceled and rescheduled with their Neuro-oncology department for three weeks from now. The reason given: "It looks like the Neurosurgeon looked at your MRI and determined that the gliomas are inoperable." Translation: No need for a surgeon and an assumption I most likely have brain cancer.

I had already been told they were inoperable by the neurologist and neuro-oncologist in Grand Rapids. And had been told they may be gliomas (aka a type of tumor which are really bad news) by the radiologist and neurologist after my first MRI in April. I was also told they could be scar tissue by the neuro-oncologist.

Either way my faith in the macrobiotics and in myself to reverse whatever is going on is all I need to deal with them. Which is fortunate because they may be all I have. While chemo/radiation might be an option everything I've read is that they aren't highly effective in treating thalamic (deep brain) lesions (tumors). So it's up to me.

And thankfully I've been listening to the HEAL documentary online summit all week and know I am already on the right track, and have been for several years, to take control of my own health <3 healdocumentary="" https:="" ref="br_rs<br" www.facebook.com="">
I'm feeling great (emotionally and physically) and very hopeful that things are turning around. I'll soon be blogging about a book I purchased and have begun using written by my friend Holly See. Literally the day I began incorporating Chinese reflexology into my daily life I saw an immediate improvement in a very unexpected way.

Also, even though I've lost 18 lbs recent blood tests by my Primary Care Physcian showed that I am not suffering from any nutritional deficiencies. My new diet and lifestyle are working wonders. My chronic facial pain has become a distant memory, gone 5 days after I started living my new macrobiotic life. This new selfie is to reassure anyone who has been worried about me that I am more than fine. Am feeling confident, healthy, and happy once again after shaking off the shock of the MRI results back in April.

And for the curious Denny Waxman is the professional Macrobiotic Counselor I am working with.



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Friday, July 13, 2018

My new mantra: I can heal

I want to tell you about a movie that is empowering, inspiring, and helping me to find my way through my current situation. It's called "HEAL."

Before some of you dismiss it at first glance I want to be clear there is something for everyone in this film. It's about how the science of medicine combined with food choices, positivity, emotions, and spirituality can change the outcomes of terminal, inoperable, incurable, and chronic diagnosis'.

My takeaway from the movie is that modern medicine saves lives... But sometimes, more often than we realize, if the conditions are right we can also heal and save ourselves.


From the website:

"Director Kelly Noonan Gores' documentary takes us on a scientific and spiritual journey where we discover that our thoughts, beliefs, and emotions have a huge impact on our health and ability to heal. The latest science reveals that we are not victims of unchangeable genes, nor should we buy into a scary prognosis. The fact is we have more control over our health and life than we have been taught to believe. This film will empower you with a new understanding of the miraculous nature of the human body and the extraordinary healer within us all."

I have seen a radical remission happen by playing a very small role in it. I mentioned in an earlier blog post the reason I chose to start the macrobiotics following the discovery of my brain tumors/scarring/tbd was because I personally know someone who reversed a terminal cancer diagnosis by changing her lifestyle and diet 180ยบ on a dime. The doctors told her there was nothing more they could do for her and were basically sending her home to die telling her she had a handful of weeks left. But one mentioned she could look into macrobiotics. I loaned her some macrobiotic books I'd collected, went and talked to her, she hired a professional counselor, and is still alive over 20 years later.

When my friend Carl learned of my situation he reached out and told me about HEAL. I immediately ordered a DVD. It's cheaper on iTunes and Vimeo but I can't stream out here in the woods where my high speed (LOL) internet speed is a whopping .4 to 1.33 mbps at any given time. So anyway, the movie... It was exactly the reassurance I needed to see and hear right now. It wasn't so much much news to me but more confirmation of what I already knew and suspected: That a prognosis is a likelihood but not a sure thing. People defy terminal and chronic diagnosis' all of the time.

But how?

Researcher Kelly Turner, PH. D. says in the film that she studied 250 patients who had received terminal diagnosis' and experienced "radical remissions." There were 75 things these patients did to try to reverse their cancers and restore their health but the nine they all had in common were:


As I scanned the list I thought to myself, check, check, check, check, check, check, check, check, check! Some, like my diet I just started recently. Others I've been working on for years. It was comforting to know I am on a track that is both healthful and makes more sense now that I've seen this movie. There were so many instances during the movie where I would say to myself "yes" or "Yes" or "YES!"

It's worth mentioning you can view HEAL online through July 16th for 99¢ on Vimeo by clicking here.

So if you are in a similar situation to mine and are in trying times at this moment, I would recommend this movie if you are open to the possibility that you have more control over your health than you might realize. To radically change one's diet is as simple as it is difficult. But few worthwhile things in life ever come easily. I've found, for me, the most important things in my life have come with a lot of emotional investment and tenacity.

I am doing my best to get back on track. I allowed myself some time to be derailed by the news I received in April but now that the reality that my scheduling marathon is over, for now, I'm realizing even more so that I must stay on track. I want to keep being creative and productive. I want to keep working on getting better, and now that the second MRI is scheduled it will hopefully confirm everything else I'm doing is making positive changes and the spots will either be gone or smaller if they are lesions/tumors/gliomas. They may not be. If they are lesions/tumors/gliomas my macrobiotic counselor told me it can take 4 months for things to stop progressing and begin reversing. Or, if they are scars they may still be there but won't have gotten any worse. Because they can get worse if I continue to have migraines. The Neuro Oncologist told me migraines can also cause brain scarring. So no more migraines even more so means I must reduce my stress. That's my plan and I'm sticking to it :)

In other good news U of M contacted me to let me know my request for a neurosurgery consult had been scheduled. The relief was huge. So huge it took me by surprise. The moment it sank in I was literally so exhausted I laid down and fell asleep. I don't normally take naps so it was strange and unexpected. I think my mind and body were finally able to truly relax and the next thing I knew I was out like a light.

Thanks for checking back in on me!



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Saturday, June 30, 2018

A six minute phone call became a six week nightmare

I was having problems getting the second MRI in August scheduled.

First off I want to say this post is not about bashing the hospital. People make mistakes. But I decided to share what had been going on to raise awareness about how errors are made and what their impact can be like and why it is important to advocate for yourself or a loved one when something isn't being handled the way you intuitively know it should be. I've come to realize there is a fine line between "Was an error made?" or "Is this just how the hospital system works?" Pretty much everyone from friends to the medical professionals I talked to were all shocked at how my case was being handled. Sometimes jaw droppingly so. But I heard over and over it was just how the system works. If there is a next time, I'll now know to be more direct in questioning if a mistake has been made.

To those who work in medical scheduling I implore you to realize that when you schedule appointments you are wielding power that can literally make or break someone's spirit. You can cause (or erase) an enormous amount of stress an already stressed person is dealing with. Because of this mistake my already upended life was put on hold in all of the wrong ways. I don't know if it was the intention of the person who made the mistake, or the scheduler who didn't know or care enough to help me fix it the first time I called (or if they are both the same person) but I can tell you it left me feeling less than, insignificant, and frustrated beyond belief because my situation wasn't important enough to warrant help or even the promised call back.


It seems like if you might have inoperable, bilateral, deep brain tumors because there were spots that shouldn't be in your thalamus on an MRI, hospitals would make your case a bit of a priority. But, as it's turned out, and as many of you are I'm sure well aware, one's personal medical concerns and needs do not always equal speed when it comes to scheduling.

I was doing my best to be patient and to advocate for myself but I'll admit things had become extraordinarily trying lately. It all felt like a nightmare. The kind where something bad is trying to get you and you hit, punch, scream, and lash out at it... But you never make contact and you don't even know what you're aiming for :(

I always knew I would get the MRI, I just wasn't sure where, when, or how much it would cost as I explored the possibility of having to pay out of pocket for something that should have been covered by my health insurance. And because the wait time for procedures can be long, I was getting more stressed with each passing week that by the time someone was going to be willing to schedule my test it would be beyond the recommended timeline the Oncologist had ordered it for.

Two days ago I learned that the reason I had been having such an awful time of it the past six weeks was because someone had made an error in how my case had been protocoled. Meaning instead of being given the tests when my Doctor requested them on or around August 8th, I had been told I'd have to wait until the second week of September...

When I asked should I call my Oncologist? I was told no, the hospital would call them and ask if they would like to order a different test. WHAT? Um, NO. I told the scheduler I wasn't comfortable with that option at all. I literally said "These aren't bunions (in my feet), these are possible brain tumors in my deep brain" and that my Oncologist had clearly explained why she was ordering the specific tests she was ordering. I was assured a supervisor would be consulted the next day to see if and how I could be fit in on time. I was also assured I would be called back the next day. That was six weeks ago. The person who finally did call back was a different person who called by chance with no idea I had been put aside.

I know I could have called back but due to two other incidences I had lost too much faith in this hospital system. So rather than waste my breath I'd decided to try to go elsewhere for diagnosis and treatment.

That hasn't gone well or easily either.

First off my request to my insurance company to go out of state was denied out of state coverage authorization. It doesn't mean I can't go out of state, but it does mean I would have to pay for everything out of pocket. It took over two weeks to find out my insurance company would not grant that referral request.

When that didn't work my Primary Care Physician sent in an in-state referral to a different hospital system. Three weeks later I found out that I would be able to schedule a neurology appointment for my trigeminal nerve damage that had caused the chronic pain in my face for over seven years. This is good because there are doctors on staff there who specialize in trigeminal nerve damage.

The first Neurologist I saw (in the first hospital system) told me upfront he had never dealt with a case of trigeminal neuralgia and when the MRI didn't show a conclusive cause for my pain he basically left me hanging with a "running diagnosis" that is a symptom: Atypical facial pain. This might not seem like a big deal but I researched and learned that it can be problematic. Depending on which hospital system you are dealing with it can be translated as physical damage to a nerve that causes chronic pain, or it can be viewed as psychosomatic and all in one's head. This means an insurance can (and they sometimes do) withhold all future coverage for tests and treatments except for psychiatric care. So I can't just let things sit where he left them since I know my pain was caused by a dental procedure injury and was triggered by physical damage to the nerve.

I also need to know if my facial nerve damage has anything to do with the pressure sensitive mass still inside of my mouth. The one I mentioned in an earlier blog post. The one three doctors recommended I have cut out of my gum without first exploring what it is comprised of or determining if it is entangled in the peripheral trigeminal nerves.

So the new hospital will see me, but, here's the kicker: Their next available appointment isn't until May in 2019. I can call every day to see if there's a cancelation and should start doing it now but am going to take a few days before I begin because I really need to decompress from the scheduling nightmare of the past six weeks.

It was on that same phone call I learned that while neurology could help me with the facial pain issue a different department would have to diagnose and treat the non-specific spots (lesions/tumors/scar tissue) in my brain. But they weren't sure which department. After hearing what I had already been put through the woman I spoke to was wonderful and promised to call me back within three days, gave me her name and direct phone number, and said if she didn't call me back to please call her to follow up. She called back two days later and told me to contact the neurosurgery department.

Finally! I felt like all the waiting had been worth it and I was getting closer to getting the MRI scheduled. When I called neurosurgery the first thing I was told was that their protocol was different than other departments and while neurology had the referral, my doctors notes, and the MRI results in the hospital's patient database, their department could only accept the same information by fax. Sigh. So the referral and waiting process began again 9 days ago with a call to my Primary Care Physician's office asking them to now fax all of the information to that hospital's neurosurgery department.

I have to admit I truly began to give up hope at that point and began looking into paying out of pocket at Mayo Clinic to ensure the test was done on schedule. I researched online and learned cranial mris typically cost between $1,500 and $5,000 dollars. I figured with the perfusion and spectroscopy I was at the high end of those estimates or even higher and hoped it wouldn't cost over $10,000. I also had to hope they would be willing to only do the MRI and wouldn't require I have other numerous tests done that I wouldn't be able to afford.

When I called Mayo I was told there is a $5,000 deposit that needs to be paid upfront. A consultation is billed at $650 and if the deposit it not used up on tests any balance is refunded to you. If tests cost more you are required to pay the additional costs (I believe) also upfront. The person I spoke to at Mayo also suggested that some states have hospitals that are part of the Mayo care network, which means local doctors can consult with the Mayo doctors at no additional charge to me. There is one such hospital in Michigan. Unfortunately it isn't either that I am already in the process of dealing with. So, I put that idea on hold until and unless it was really necessary if the second hospital declines taking my neurosurgery case.

At this point I vented my frustrations to a friend in the medical field who then told me about insurance patient advocates. I had no idea such people existed. They are there to help you receive the treatment(s) you need. I called my insurance company and requested one. I was told a registered nurse would call within two days to help me. She called the next day and said "Tell me what's going on." An hour and a half later she basically told me there wasn't anything she could do for me. "Your on top of it" she said. Apparently I had already done everything she could suggest or offer except to call and ask the May 2019 appointment be moved up. But she followed that offer with that she had never been successful in having an appointment moved up in that particular hospital system.

So while she felt she couldn't help me, just knowing that in her professional opinion I had already advocated everything I could do for myself on my own did make me feel a little better even though the entire ordeal had been taking a terrible toll on my emotional well being.

I decided to continue to patiently wait to see if the second hospital would take my neurosurgery case and if they will, on what timeline?

Two days later (and three days ago) the phone rang. It was the first hospital's central scheduling department doing a standard follow up to see if I wanted to schedule my still unscheduled second mri.

When I explained to the woman who called what happened the first time I called six weeks earlier and what had transpired with no help and no call back she was shocked and I could sense quite upset at how I had been treated (and dismissed). She understood the immense amount of stress the diagnoses alone would have caused and felt really bad it had been compounded by my inability to have my case handled with the consideration it deserved. I also filled her in on my attempts to go to Mayo and the second hospital.

Knowing bilateral deep thalamic lesions were a red flag condition she quickly caught the error that had caused all of the problems. My order had been incorrectly protocoled so instead of being in their system as a higher priority patient, I was basically listed as less than that which is why the computer would only show appointments available in September and beyond. Once that was fixed it opened up the calendar for appointments in the beginning of August as my Oncologist had requested.

She took two hours out of her day and made many interactions with radiology on my behalf to clarify one of the really important questions that hadn't been clarified for me through the Oncologist's office regarding one of the tests, and to ensure the tests would be done on the day the Oncologist requested. She read aloud each message exchange to ensure I knew she was handling things for me. She literally offered to stay on the phone with me for as long as it took to get the tests scheduled. I cannot tell you how much I appreciated the gesture. I told her it was fine to call me back when things were settled. Ultimately (just over two hours after she first called me) my tests were scheduled for August but on two different days, two days apart.

I thanked her. When she said she hoped she was able to give me just a little relief I told her she had impacted far more people than me. My mom and auntie for starters, and my friends who had been checking in on me and supporting me through this nightmare would all be equally if not even more relieved than I was. She is my hero.

Shortly after we hung up I received a second phone call from the radiology department. Once they understood the scope of what I had been through they tried harder and were able to move the second appointment to the same day, an hour earlier than my first appointment. This means instead of three, two hour, round trip drives on three different days, I'll only have to drive to the city once for tests and then again 5 days later for the follow up consultation on the test results.

I'm doing my best to shake it all off now that it's settled and simply be grateful that I have my appointments, have gained experience, and am wiser as to the ways of self advocacy. I haven't once asked "Why me?" But will admit I have wondered why everything has to be so damn hard. I remind myself that's just life. There are even more things that go right than wrong but the wrong ones are the ones that stand out.

Because I do recognize that stress not only doesn't help my health but actually damages it, for now, I am focusing on being more positive and trying to get my somewhat derailed life back on track again :)



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Friday, June 8, 2018

If you are considering suicide or someone confides they are to you...

I can tell you from a personal perspective it has been jarring to read about the two celebrity suicides in the news this past week.

It isn't that the death of a celebrity means more or less than any other person's death. For me, and perhaps others who suffer from severe depression, when I see people who literally have the means to afford the best treatments (medications/therapy) but they still aren't able to overcome this awful condition it makes me wonder what hope is there for people like me? Or maybe you? All I can tell myself, and you, is that we are each unique. There is no one size fits all life experience or treatment plan. What may be too much for one person to bear may not be for another. I focus on that and tell myself that their pain cannot determine how I deal with my own.

I've suffered from severe depression since I was around 14 years old. Most of it in silence. When I wrote a blog post years ago I thought I had left depression behind. In recent years I've been tested several times over and with the help of my therapist, many of my very incredible and loving friends, and unconditional love and support from some family members I have weathered through each episode. I suspect one is never "cured" of depression, or its companion, anxiety. They seem to be like cancers that can go into remission for years or even decades but then reappear for seemingly no reason or come crashing down upon you when you've suffered a traumatic loss or event.


I wrote a blog post back in 2010 because I felt the urge to speak out on behalf of others who might have been struggling after a friend took his life. I didn't know he was depressed. You can read it here:  Feeling Suicidal? It Gets Better. In the past three years I've lost several friends to what I suspect was suicide. I say suspect because the cause of their deaths wasn't ever shared publicly.

So why post about this today? I wanted to share two perspectives. One is new since my original blog post about depression and is for people who may not even realize they are depressed because they simply feel the way they feel. I was in that situation for years. I just wanted to say that:
  • If you have researched best ways or least painful ways to commit suicide
  • If you actively think about taking your own life
  • If you have already decided how you would do it
  • If you think nobody will care or miss that you are gone
  • If you think the world would be better off without you
  • If you think you will never feel better
These are all signs that you are very likely depressed and are in jeopardy. You may say to yourself you're only being curious or pragmatic. Perhaps. But you are also very likely depressed which skews the logic you are using to consider such a serious thing and I hope you'll consider reaching out for help to overcome it.

One of my favorite people in the world, Jenny Lawson who is aka The Bloggess and is author of a very different kind of book on depression titled "Furiously Happy," openly shares her battles with mental illness on her blog. She is brutally honest, irreverent, and quite often very funny as she keeps her readers updated with what is going on with her mental health. Years ago Jenny did a post that resonated deeply with me. It included a picture of a wrist tattoo, not of a semi colon, but with two simple words that could save lives... "Depression Lies." 


It is so true. It does lie. The little voice inside some of our heads tells us that we aren't worthy to be here, and we listen to it. It doesn't matter who you are, your age, marital status, class, gender, ethnicity, or where you live. Some groups run higher risks of suicide but the point is depression can strike anyone. If you don't suffer from it it may be hard to imagine what it is like. If you do know its darkness you may not be able to imagine ever escaping it completely.

I have struggled with it for over half of my life and can honestly say that I'm glad I didn't let it take me. Everything that has happened, every person I have known, every place I have visited past the age of 19 has always felt like a gift. That was the first time I was truly at risk, had a plan, and was thwarted when a friend's mom (a psychologist) offered to counsel me (for free) and saved me.

Which leads me to my other point that I shared in my blog 8 years ago. Out of genuine concern many encourage people to seek help, to tell someone if they're depressed. But sometimes the outcome of such revelations are less than ideal. Not because people are unkind, but simply because they literally don't know what to say.

I am not a mental health expert but as someone who has been suicidally depressed several times in the past I have been told these things by people who love me and only wanted to help. Though said with love many of the most common responses I have been told were not helpful.

Here's why:
  • That contemplating suicide is selfish or stupid. This only confirms every negative, self hating emotion the person is already experiencing and does not help. 
  • Others are worse off. While normally someone might agree, when depressed, this comment can feel dismissive of the pain they are suffering from. The pain a person from depression suffers from isn't rational or relative to any other suffering. It is what it is and the intensity of it can be unbearable.
  • That God doesn't give people more than they can bear. For many, God (or life for the non-religious) does give some people more than they can bear. Others who have committed suicide and mental illness can be viewed as proof that some of us have limitations on how much we are able to bear. To a person of devout faith they may agree with this commonly accepted interpretation of Corinthians (1 Cor 10:13, from which the quote originates) when they are in a clear frame of mind. But when suicidally depressed their faith may slip from their grasp. I don't mean this in a blasphemous way nor do I want to start a theological debate. I'm just offering a perspective of how this statement may not help someone who is clinically depressed and may cause them to feel more despair, over their inability to bear or cope with what they are going through (because now they are failing both God's expectations and yours), rather than give the comfort the statement was intended to create.
  • "Snap out of it" or to "get over it." That's not how depression works so these suggestions aren't helpful at all no matter how well intended. You would't tell someone with any other potentially fatal medical condition to snap it away or to just get over it, yet many people truly believe that overcoming depression is that easy.
One thing you can say:

"I don't know what is the right thing to say but please know that I love you, care about you, and want you to feel better."

Then, if you're up to it, try to help them figure out how to help themselves by providing  phone numbers or links to organizations that can help them.

Also from my original blog post I would like to reshare:

"If you do open up to someone and they respond negatively or are judgmental, open up to someone else and don't be upset with the person who didn't know what to say or how to help. While some may know intuitively and others may have learned, most of us weren't raised or trained to know what the "right things" to say are in the face of suicide. It isn't that we (myself included) don't care, we simply don't always know how to help or the right thing to say."

To close, please be kind to yourself. Know you have every right to be here. Know you deserve to know moments of happiness. You deserve these things. We all deserve these things. To hope for them isn't hoping for too much. There will always be highs and lows, because that's how life is but have faith in whatever works for you and please keep trying to find your way out of the darkness.



If you ever feel that suicide is your only option please call the suicide hot line and talk to a counselor before taking your own life. I'm telling you that you do have another choice. Asking for help is the other choice to suicide.

Their national numbers are

National Suicide Hotlines USA
United States of America
Toll-Free / 24 hours a day / 7 days a week

1-800-784-2433

Suicide Prevention Hotline
1-800-273-8255

Crisis Text Hotline
1-800-273-8255

Deaf Hotline: Suicide Prevention Lifeline
1-800-799-4889

Worldwide Suicide Helplines can be found at Befrienders Wordlwide.


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, Doctor, Psychiatrist or Psychologist for help regarding depression and/or suicide.


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Sunday, June 3, 2018

First denial of coverage and good news too

It's been just over a week since I published the blog post about my medical issues. Here is what I can update at this time:

SECOND OPINION
As expected my health insurance company denied my request to seek a second opinion out of state at Mayo Clinic in MN. While my primary care physician could appeal the denial I have instead opted to simply move on and have now had a second referral request sent to a medical center here in Michigan. This avoids the entire out of state authorization issue. I will admit it's frustrating, I mean why does the insurance company care if you are treated in or out of state if you're the one covering all of your own transportation costs to go there? Maybe you know? It's beyond me.

MACROBIOTICS
My new macrobiotic journey is going well. I've begun experimenting with the food I'm making to make it not only healthy, but delicious too!


I’m going to make another blog post video about the macrobiotic food and lifestyle changes I’ve made so far. If anyone has any specific questions (FAQ’s so far: Is Fred eating your food too? What is/are macrobiotics? Is it helping?) please let me know and I’ll answer them in the written post or in the video.

We have a tiny health store in Greenville and two large ones almost an hour away in Grand Rapids. I’m grateful we have any at all in proximity. The rest I order online. This is my second mail order shipment of ingredients and food. Thank goodness for UPS! This would have been so much more convenient in CA where Whole Foods and health stores abound.

ART EXHIBIT
On the bright side... In the video I mentioned that I was given the opportunity to display 12 of my miniature origami mobiles all in one place at one time. I installed them over two days last week and they're ready for the big Grand Rapids Asian-Pacific Festival launch night festivities on Monday June 4th from 5:00-7:00 pm at the Devos Place Convention Center on the Skywalk Level. I'll be there doing a folding demonstration for the duration of the event as well as on Saturday the 9th in conjunction with the Asian Festival taking place down the street at Rosa Parks Circle. Click Here for more details on the DevosPlace.org website.


When I stood back and looked at them I'll admit I felt a bit overwhelmed. While they each represent different customs, traditions, and icons of Japan, they also represent my life as an artist since moving to Michigan <3

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Thursday, May 24, 2018

Inoperable brain lesions (tumors), gliomas, or scars

So the post title? Worst multiple choices I've ever been given. I'll tell you right now I'm really rooting for scar tissue.

This is a long post. I tried to anticipate every question you may have and answer them all at once.

On the surface, it appears this all began in the fall of 2010. Good or bad there will be more to come. If you'd like to know how things are progressing you can check back or use the email subscription link near the top of the right sidebar to subscribe and have all future posts land in your inbox. I won't be updating my FB pages, Instagram, Twitter or my websites regularly about my health. I will keep all updates consolidated to this blog.

If you don't have time to read the post but want to understand what's going on here is a video synopsis:



Dental Procedure Trigeminal Nerve Damage


So my ridiculously prolonged and pain-filled saga began years ago... Not weeks, or days, or minutes, but immediately as the novocaine wore off following a dental procedure. I have been living with chronic pain in my face ever since that day in 2010. I even blogged it in the hopes that someone would know what was going on. Eventually my dentist said a nerve may have been damaged by the novocaine injection, but they never said I should see a neurologist, or any other doctor. Instead they focused on the periodontal ligament that runs along the gum under your teeth and said it might have become sensitive to pressure and if that was the case there was nothing that could be done. When the excruciating pain hadn't subsided weeks later I went to my Primary Care Physician. He dismissed the tandem pain as not possible and, like the dentist, told me there is no nerve that runs directly between the gum and nostril that connects the two areas. So I learned to live with it.


It wasn't until I moved to Michigan four years later that I learned about ganglia nerves from my new dentist and an ENT. As it turns out the ganglia nerves do, in fact, connect the two areas and everything in the middle of the face through the maxillary nerve. It is not a direct line between the two but there are branches of nerves that all connect to the same point of origin. But, just like in California, neither doctor offered any help or a referral to a specialist who could help me. The dentist in particular also concurred if the periodontal ligament was the problem there was nothing that could be done. So I continued to live with the pain.

Looking for Answers


This winter I finally decided to get to the bottom of it.

After going to the dentist for a routine cleaning at the end of last year, I set the wheels in motion by seeing an ENT on Feb 8th of this year. Two weeks later I discovered I had a small, pressure sensitive mass on my upper gum exactly in between the two areas of pain that have plagued me for so long. When I would lightly run my finger directly over the mass it felt like pins and needles, electric shocks, like when your foot falls asleep. Not excruciating but not a sensation that should be there. It was pressure sensitive and I could also feel it when I pressed the outside of my face.

My dentist was certain I needed a root canal. He thought the mass was the result of a tooth nerve dying and the necrotic (dead) tissue was "gassing out" into the gum line causing an abscess. I didn't think I needed a root canal but went to the endodontist he referred me to just to have the tooth tested to rule it out. The results of the nerve test? Inconclusive. Atypical. My tooth didn't react clearly enough for the endodontist to be able to tell if one was needed or not. So typical of my body to be atypical.


The First Piece of the Puzzle


The endodontist listened as I told him about the simultaneous pain that would occur several times a month and lasts for several days each time for the past 7.5 years. The pain is always the same and triggered by chewing. It begins with a tooth that has had a root canal aching (as if it hasn't) and stabbing pain (like knives) in my upper right gum line directly above the same molar. At the same time an awful searing and burning sensation occurs in my nose as if someone has poured acid into my right nostril. I also told him a couple of times a year the pain will last a week or more. When that happens it will migrate to encompass my entire upper right gum line. It feels as if all of the skin has been peeled off of my gum, acid is poured over the raw skin, and the end result? Hundreds of excruciatingly painful, constant, sharp, searing, electric shock-like pains will race across the entire gum unrelentingly for a week or more along with the stabbing gum pain and searing pain in my right nostril. The gum looks completely normal but the pain will become so severe I can't brush my teeth on that side for several days by the end of the week.

No over the counter pain relievers have ever helped.

Trigeminal Neuralgia (or Neuropathy)


The endodontist was the first doctor in 7.5 years to take me seriously. He listened, asked questions, then asked if I knew about Trigeminal Neuralgia? I didn't. It is a rare and awful condition. Like you wouldn't wish it on your worst enemy kind of horrible. If you Google it (as I did), you will see that it is also known as “the suicide disease" (because people take their own lives when they can't take the pain anymore), "sciatica of the face," and "the most painful disease known to mankind.”

He said everything I told him were classic symptoms of nerve damage and proceeded to make the suggestion not one of the other 9+ dentists, doctors, and specialists (I had told about the pain) had ever been willing to make: "You should see a neurologist," he said. Just like that. I had no idea I needed to see one. I had trusted that the medical professionals I had seen would have told me if I needed a specialist. But they hadn't. Instead they had all either been baffled, defensive, told me there was nothing that could be done if it was nerve or ligament damage, and worst of all were utterly dismissive of both my pain and concerns.


The possibility trigeminal neuralgia was the source of my pain was a huge shock and something that took some time to adjust to. The worst part about nerve damage? It can worsen over time. So while I'd learned to live with the pain, realizing it could (and most likely would) get worse sent me into a bit of a tailspin since mid-March.

After learning more about trigeminal nerve damage I then realized that I had been experiencing another symptom for years. When I wear my reading glasses, which is a lot, the very light pressure of the glasses resting on the bridge of my nose also triggers a strange facial ache beneath my right eye. If I hold the glasses off the bridge of my  nose with one hand it lessens. If I don't the ache localizes and intensifies beneath my eye until I have to stop what I'm doing and go lie down. Once I realized that it could be related to the same ganglia nerve bundle that was most likely causing my other pain I began wearing my glasses a little lopsided, so that all of the weight on the bridge of my nose is on the left side of my face. As soon as I did this I realized I was having fewer mouth/sinus pain attacks. Finally, just a small amount of welcomed relief.

A Mass in My Mouth


Over the course of 3 months the mass at the top of my upper gum had grown larger until it reached almost from the top of the gum all the way down to the top of the tooth beneath it. The three doctors all recommended cutting it out, without testing it first to see what it was. They all said if it looked suspicious it would be sent to pathology. I refused to allow them to remove it because it is literally located exactly in between my two areas of chronic pain.

By April I had asked all three (dentist, endodontist, and ENT) to please do a needle aspiration first. If it was an abscess, I could have it treated but I was terrified it was not what they thought it was and could be entangled in a nerve, and cutting the nerve could damage it more and cause my chronic pain to become even worse. None would do a needle aspiration. I was so frustrated. I had told each of them "IF I WAS A DOG WITH A LUMP SOMEONE WOULD HAVE STUCK A NEEDLE IN IT BY NOW, ASPIRATED A SAMPLE, AND SENT IT TO PATHOLOGY!" They all told me that's not how things are done on people. GAH!


The Neurology Consult


The ENT I had seen earlier this year had done a CT Scan that showed no visible cause for my pain. He had told me he didn't know what was wrong but would help me however he could. So he sent in the request for the neurology referral. It took 3.5 weeks to get in for a consultation. After passing the in-office neurologic exam I was sent for an MRI. The standard next step when X-rays and a CT Scan show nothing is wrong but the pain persists.

Friends warned me they're no fun and can make you feel claustrophobic. I laughed and told them I had had one before and would just pretend I was sleeping in The Glampette (my tiny travel trailer). LOL. It turned out the most traumatic part of the procedure was putting my navel piercing stud back into my navel afterwards. You cannot wear any metal during an MRI as the machine will pull it straight from and/or through your body. To put it back in place? It took close to a half hour. I was ready to give up and go find a piercing studio and pay someone to do it when it finally slipped in. Then I had to screw the tiny ball onto the end of the bar. OMG, I was far more traumatized by that than being in the MRI tube for an hour. LOL

The MRI Results


The MRI was on April 18th. The radiology technicians told me the results would be ready “in a few days.” When the Neurologist called the next morning I thought to myself "Uh oh." The test had been to determine if there was any visible damage or compression to part of the trigeminal nerve on the right side of my face. What I expected? That there would be no visible damage to the nerve because that’s how trigeminal neuralgia that isn't caused by Multiple Sclerosis often works. The damage can be invisible so it’s a clinical diagnosis which means if after having X-rays, a CT scan, and an MRI no cause for the pain is found, and the symptoms match the typical disease symptoms, you can be diagnosed based on the process of eliminating the most obvious cause(s).

“There is no damage to your trigeminal nerve,” he said. But, there was an “incidental” finding. The word is so innocuous. Incidental used to mean (to me) "Oh, by the way..." He went on to explain in diagnostic-speak “Incidental means we found something we weren’t looking for.” Turns out that "something" can be insignificant or the worst thing you can possibly imagine.

That was when he told me the radiology report said I have three lesions in the deep part of my brain. And because of their location they are inoperable. Um, what? I asked what exactly is a lesion? In short, it's a type of tumor and just like a tumor lesions can be benign or malignant.  Great. I have three brain lesions. Maybe not? At one point in the conversation the neurologist referred to them as gliomas... "Can you repeat that and spell it for me please?" I asked him. Gliomas are an overgrowth of brain cells/tissue and, I learned later, are often the kind of cells that cause the worst possible brain cancers.

Through my shock I asked the neruologist: “How concerned should I be at this point?” He told me it was too soon to say. Then he said: “I’d like to refer you to a Neuro-Oncologist.” I said: “Well that sounds like I should be VERY concerned!" He said he just wanted to be cautious.

He said they were "low grade" which I knew meant they were small because they had been found early by accident, and that was good news. But I also knew they shouldn’t be there. If they are malignant that is really bad but even if they are benign and grow or multiply that is really bad too.


He said what they found was “rare.” I literally laughed and told him “Of course it is!” During our consult I had stressed to him that everything about my medical history was “atypical.” I had heard so many doctors tell me over the years (usually while shaking their heads in puzzlement or disbelief) “Hmm, I’ve never seen this before,” or “This isn’t typical,” or “This isn’t what we usually see in someone with this condition,” or "Wow, that sounds awful."
  • There was the time my broken feet were misdiagnosed.
  • The time I survived natural gas poisoning because a spider happened to bite me while I was breathing in gas from a broken furnace.
  • Then there was the time I twisted my ankle that led to crutches and an ankle brace (that I affectionally nicknamed Frankenfoot) for almost two months before a doctor figured out the problem was hidden fluid trapped in my ankle.
  • One time a nurse practitioner at a dermatology office misdiagnosed a bacterial infection as a viral infection. That was one of the most painful episodes of my life. The infection raged for well over a week before it was properly diagnosed.
  • And when I got cat scratch fever but hadn’t been scratched by a cat?
I could go on. But I'm sure you're starting to get the point.

The neurologist said I could definitely add this to my list of atypical things that normally don't happen to people.

Because my facial pain symptoms are atypical to Trigeminal Neuralgia the neurologist wasn't able to give me a diagnosis. He offered to work with me if I wanted to pursue treating the pain of the trigeminal nerve damage but I declined. I had read enough about the two classes of drugs used (off-label) to treat trigeminal neuralgia. Because it's a rare condition very little research has been done on it so the medications used to treat it are anti-convulsants (for epilepsy) that usually make people feel so sick they stop taking them or antidepressants that also make people feel worse than they did before. Even if they don't make people sick, they seem to only work to partially to lessen pain and only for a short period of time (months) before they become ineffective and then you have to start all over again testing different versions of these drugs. My body reacts poorly to medications and I have already learned to live with the pain. I thanked him, declined, and asked if it gets worse to the point it is intolerable can I call you back and pursue finding a medication then?

The Neuro-Oncology Consult


It's worth noting that the neuro-oncologist told me I have two lesions, not three, even though the neurologist had described them as three. The one on the left is in two distinct areas of my brain with each area connected by a strand of tissue. She also decided non-specific spots was a better description for now since we don't know for certain they are lesions, gliomas, or scars. Scars? During my meeting with her the neuro-oncologist said the spots could be scar tissue that can form from head trauma or migraines of which I've suffered from both. Repeatedly.

Head trauma incidences:
  1. Was in a rear end car accident waiting for a pedestrian to clear a crosswalk so I could make a righthand turn on a green light when a car approached from behind and ran straight into the back of my stopped car. The impact was so great it killed my engine and I felt as if I'd been cracked over the back of my skull with a baseball bat. (Whiplash 1994)
  2. Less than three months later I was rear ended again in traffic that had stopped. As I stopped I looked in my rearview mirror to see the driver of the monster pickup truck behind me looking out of his passenger window, oblivious that all four lanes of traffic had come to a halt. He noticed with seconds to spare, slammed on his brakes, and plowed into the rear of my car, totaling it. (Whiplash 1994)
  3. Approximately 7 months later I was in a tour vehicle in Colorado that slid on black ice and plunged straight off a 30' cliff. You can read all about it here. (1995)
  4. Around a year later I was thrown from a horse. It bucked and reared eventually pitching me over its head. My friend said I landed flat as a pancake on my back and back of my head on the dirt road and literally bounced. I was knocked out for just a few seconds. (1996)
  5. Years later I almost knocked myself out getting into my car one evening when I misjudged, well, everything and whacked the right side of my head so hard against the top of the door frame that I literally saw white stars and gave myself a concussion.
Following these incidences I started having migraines. I've suffered from them beginning in 1996 or 1997. They were frequent until 2014. After moving to Michigan they happened less frequently. In the past couple of years I haven't had any at all. I now suspect the migraines may be related to one or several of the head trauma incidences but my former doctor in California never made a connection between them.


My wonderful neighbor went with me to the consult to be my extra set of ears. And she drove. When we got there I found a penny in the parking lot. I kept it and have not yet decided if it is lucky or not. There was the good news (the lesions may be scars) and bad news (she graded them as Grade 2 instead of the Grade 1 the radiologist had given them).

There isn't a huge rush to do a needle biopsy to see what the spots are comprised of. The problem is to do a biopsy a needle will have to be inserted all the way through to the center of my brain. In more than one location. Ugh. It's the only way to take the necessary tissue samples which I’m certain can cause a certain amount of damage and comes with all of the usual risks associated with any surgical procedure that requires general anesthesia, drilling through bone, and breaks the skin opening one to the risk of infections.

My first followup MRI will be in August. It will be performed with perfusion to see if there is any vascular activity in the spots and spectroscopy to see what the chemical composition of the spots are. If there is vascular activity that will mean they are lesions or I read, even worse they could be gliomas as gliomas often create their own vascular systems. If there isn't any activity they may be scar tissue.

A Second Opinion


Because there was no facial pain diagnosis following the MRI I am also pursuing a second opinion regarding my facial pain, the mass inside my mouth, and am wondering if all of my issues are related? Wish me luck! I had to go to my new (my old one was transferred to a different clinic) primary care physician to request the second opinion referral.

I went expecting to have to plead my case and wasn't sure I would be given one. She was not only empathetic, she had even take the time to research options for me noting that University of Michigan's Medical Center has several neurologists who specialize in trigeminal neuralgia. It was such an incredible relief to finally be believed. I didn't have to convince her of anything.

I'd like to go to Mayo Clinic because of their thoroughness and the collaborative way their specialists work. If Mayo Clinic is willing to take my case, then I have to go to my health insurance company to ask for authorization for out of state treatment the process can take up to 6 weeks. Most plans only cover ER/trauma care if you are injured or become sick while traveling. If I am not able to obtain authorization my PCP offered to write a new referral to University of Michigan's medical center. They their specialized neurologists (and a brain tumor program) I am sure they can also help me.

Carrying On


My first instinct was to stop my life. Just shut everything down and crawl into bed and never come out again. It took a couple of days to realize that would be the worst thing I could do. Instead I forced myself to go to the April West Michigan Origami Folding Club meetup a few days later and have done my best to carry on since then. I have stopped adding products back into my Etsy shop as they sell out or the listings expire. I have a list of custom requests I plan to focus on as well as continue to take small orders through Etsy. I decided just the other day to cancel the popup markets I was going to participate in this  year and focus on my health and learning how to not be anxious or stressed. I'm also seeing my therapist again. He's great and I always feel more centered after a visit with him.

Some days are harder than others. Heck, some moments are harder than others. There's been a lot of up and down emotions and surprisingly (to me) a lot of frustration and anger at all of the doctors and dentists who never took my pain seriously enough to try to help me figure out what was wrong. To be clear, I am not upset that they didn't know what was wrong. Trigeminal neuralgia and neuropathy are rare. The spots in my head? Even more rare. What I'm upset about is that none of them ever offered to refer me to someone who might have been able to help me. I always assumed that doctors cared and were there to help people. But now I realize that some are only capable of caring as far as the reach of their own knowledge base or egos allow them to. It's been a prolonged and painful lesson to learn the hard way.

Sometimes I don't feel like myself, not because of the spots... Though it does cross my mind... But from the stress. Like the day I rolled down my window and yelled at a guy who swooped in and stole a gas pump from me even though I entered the parking lot first. When I told my friend Judy she thought that was a good thing and that I should express my anger because it can be therapeutic. I told her I think there may be a fine line between therapeutic and lunatic. LOL

Other times it's stressful because if I stumble on a word, drop something, trip, can't remember something, etc I wonder is this a symptom that the spots are getting bigger and are impacting my senses, motor skills, or memory? Or am I just clumsy and distracted? The wondering is like a cloud that hangs over me. I tell myself not to worry until I know I really have something to worry about. I remind myself every day that these could be scars or benign lesions that will never become worse than they are at this moment but it's really hard to not wonder about the what ifs and go to dark places.

For now I am focusing on four things the rest of this year:
  1. My health = Reduce stress
  2. Officially launch my Patreon page
  3. An exhibit of 12 of my miniature origami mobiles all on display in one place at the same time. This will happen next month in Downtown Grand Rapids as part of the Grand Rapids Asian Festival. They will be displayed on the second floor at the DeVos Place Convention Center during the month of June.
  4. Completing my fifth ArtPrize entry so I can be at the Grand Central Market and Deli this fall.

Macrobiotics


If you know me at all it won't surprise you that I'm not going to just sit around and hope for the best. I wanted to do everything in my power to create a good outcome so I started practicing macrobiotics on April 25th.

Years ago I dabbled in them out of curiosity and personally met someone when they had been given a terminal cancer diagnosis with only weeks to live back in 1995. I took them a pile of my books and answered what few questions I could. They hired a professional counselor who created a specific diet and lifestyle plan for them and guess what? They are still alive today, over 20 years later.


So a week after the MRI results I found and hired a counselor too, Denny Waxman of the Strengthening Health Institute. He told me that even if I change my diet and lifestyle on a dime it may take several months before my body may begin to reverse its damage. So imagine my shock when just five days later that mass in my mouth? It had shrunk to less than half of its size and the electric shock sensations were completely gone! In the past two weeks it has continued to reduce in size though at a much slower rate. That it is reducing has made me very hopeful that my body is responding well to the changes.

I am actually enjoying the macrobiotic diet and am finding it easier than the lifestyle changes of chewing every mouthful of food 50 times until it liquifies and remaining upright for three hours after dinner. Many of the diet ingredients are traditional Japanese foods so they were already familiar to me. Right now much of it is a little on the bland side because I have reduced my salt intake. I can use a little salt or shoyu (soy sauce) while cooking but not a lot and not at the table. I've found if I plate the food beautifully? Even the bland food tastes better :)


I'm eating lots of whole grains like brown rice, millet, barley, and bulgur. And lots of different kinds of vegetables, beans, sea vegetables, pickled vegetables, a little fruit, and small amounts of wild caught, white meat fish. The main principle behind the diet portion of macrobiotics is balance. Foods cannot be too acidic or alkaline. So it's not a veggie free-for-all and almost all foods are either steamed, sauteed, boiled, or pickled/fermented. I've purchased two small donabe clay pots for cooking and love them! I wish I'd begun using them years ago! I also got a clay pot for making my rice and grains in. They are so much better than when made in a rice cooker or regular kitchen pot.

I have also noticed that the intensity of my facial pain has been dramatically reduced in the trigeminal nerve attacks I've suffered since beginning the new diet and lifestyle changes. That is amazing! For the first time in years the pain is subsiding! What was stabbing pain now feels like a pulse in my gum and the excruciating sinus pain now feels more like discomfort instead of searing pain.


The one area of concern I have about macrobiotics is that it is a nutrient-rich but low caloric way to eat. Having accidentally malnourished myself years ago when practicing vegetarianism I am being very careful to make sure I am getting all of the calories, vitamins, and minerals I need through my food. I read that when practicing the diet and lifestyle fully one can expect to return to their "natural weight" which is what you weighed at 21 years of age. Um. I think I was around 80'ish pounds back then. Most of my adult life I weighed 91 lbs. Which was on the underweight side of the BMI index but no matter how much I ate that's where the scale stuck. My parents used to joke I had a tapeworm and I've been accused more than once of having a hollow leg. LOL. Three weeks ago I weighed 120 lbs. I have now lost 12 lbs. and am guessing I will still lose another 18.

To be clear: I have every faith macrobiotics can reverse the damage if the spots are lesions or gliomas. There are plenty of documented cases where this has happened with various terminal cancer diagnosis'. The harder part seems to be staying on the diet the rest of one's life after you are healthy again. I will not have that problem. Living macrobiotically is a lifetime decision for me.

How You Can Help Me Through This


So now I have a favor to ask... Please send good thoughts, prayers, positive energy, mojo, and virtual hugs. I am open to any positivity, hope, and love you would like to send my way. It will all be very appreciated.

But as far as messaging me, please leave all questions as comments here on the blog. I learned after the 60 Second Doc went viral that I cannot answer every message across the internet and all of the social media platforms. When the video came out in early February I was inundated with messages on Facebook through my personal account, the FB Tinygami page, the FB West Michigan Origami folding club page, on Instagram, through my website contact pages, even on Twitter... It was too much. I still have not replied to all of them. You are welcome to send me messages on any of the above platforms but I will tell you now I will not be able to reply to them. If you post questions here on the blog I will do my best to reply to them here in subsequent FAQ posts.

When people ask me "What can I do?" I only ask this: Whatever our friendship has been the past few years since I moved to Michigan, please, let's keep it exactly the same. If we normally private message on Facebook every day, let's keep doing that. If we PM every few months, let's keep doing that. If we comment on each other's walls but don't message, please continue to do that. If we've talked on the phone from time to time, let's keep doing that. If we had already discussed your coming out for a visit this year, you are still welcome to come. See where I'm going here? More than anything I just want normalcy. After all, if the spots are scar tissue, or the macrobiotics make them go away, then nothing has really changed except for my awareness they are there. I'm not sick now.

Everything will be as it is meant to be...


It was while talking to my friend Judy, back when I was under the impression I had lesions or gliomas and I didn't yet know about the scar tissue possibility, that I gained some clarity on how I felt about all of this. If the news is ultimately bad I will literally fight for my life but am also a realist and know that none of us live forever. As we spoke I told her it would be ok either way. I realized that I was not like the guy in Tim McGraw’s song “Live Like You Were Dying.” I didn’t need to go sky diving, Rocky Mountain climbing, or ride 2.7 seconds on a bull named Fu Man Chu. I told her there is nothing I want to do and nowhere for me to go. I have no bucket list. In that moment I realized I am already living in exactly the place I want to be living: Out in nature, in the beautiful countryside, here in Michigan. I’m doing what I had always hoped and dreamt of doing: Being a working, full-time artist. And I am with the person I most want to be with, someone who I didn't ever expect to find: Fred. If my days are numbered I want to spend whatever time I have left just being here, doing exactly what I'm doing, with him. I don't want or need anything more that that. I have already received far more than I had ever hoped for.

“Life is difficult. This is a great truth, one of the greatest truths. It is a great truth because once we truly see this truth, we transcend it. Once we truly know that life is difficult-once we truly understand and accept it-then life is no longer difficult. Because once it is accepted, the fact that life is difficult no longer matters.”
― M. Scott Peck
The Road Less Traveled



These are some great links if you'd like to learn more about macrobiotics:

The Macrobiotic Diet: What You Should Know

Macrobiotic Diet: Balancing The Yin and Yang

Macrobiotics: A Principle, Not a Diet

Denny Waxman is the counselor I am working with. This is his explanation: A Macrobiotic Definition That Actually Explains Macrobiotics




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