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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" ;)



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 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.


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.


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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