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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.