Sanae’s Story

My oncologist, Dr. Mead, said I am doing well after the chemotherapy, so she suggested that I meet with a liver specialist for hepatitis C, which was most likely the cause of the primary non-Hodgkin lymphoma of liver stage IV that I was diagnosed with last year.
Read more detail about it on my blog “Only Weeks to Live.”

The hepatitis C came from a blood transfusion when I had a near-fatal car crash in 2001 and was in a coma for three days. Since I had ovarian cancer in 1993, I have learned to live carefully and practice macrobiotics and exercise. Still, I got hepatitis C, and that led to lymphoma.

I was so shocked and disappointed when I was diagnosed. I really wanted to use holistic treatments and get better as I was able to do with ovarian cancer in 1993.
But this lymphoma got so big so fast and took over 90% of my liver. I knew I was dying if I did not do something quickly.

In order to save my life, I had no choice but to have chemotherapy this time.
I felt it was a long and painful experience, but I committed to taking care of my health one day at a time (many times, one moment at time) and continue a macrobiotic diet with the lifestyle and holistic modalities of moxibustion, reiki, acupuncture, shiatsu massage, meditation, aromatherapy, Bach Flower Remedy, etc.
I was able to complete chemotherapy without most of the side effects and am doing much better.

I have been off chemotherapy for 10 months, and I am even able to go hiking again.

Read my blog “Hiking With Dogs.”

Hiking with dogs including my Lumi & Nalu!

I went to meet a liver specialist, Dr. Han. He explained how hepatitis C could lead to lymphoma, and he highly recommended taking hepatitis C medication, which has a 97% success rate.

Another medication in my body and soul?
I had to think…

Hepatitis C medications sound very intense.
Also, when I heard how expensive it was, I could not believe it.
A 90-day supply is about $95,000. Including tests and doctor visits, the cost would be $100,000—and Medicare would not cover it all. They said I have to apply for Part D (Prescription Drug Coverage), but there is no guarantee they would accept me for coverage.

I had to make so many phone calls to the Medicare office,
UCLA Hospital’s patient assistance office, Dr. Han’s office, and more.
I called and called and talked to many people so I could take care of this matter.

This was before *Mercury’s retrograde (July 26), but I really felt that it was in the middle of it.
I felt that nobody understood my accent or that my English was not good enough for anybody to understand.
Frustrated, I struggled and even cried over this Medicare system.

There is a site I checkd What To Do If You Can’t Afford Hep C Treatment?

Photo from https://www.findyourfate.com/planets/mercuryretrograde-july2018.html You can find about Mercury’s retrograde!

From Everything You Need to Know About Mercury Retrograde: Mercury retrograde periods would not be good times to do anything involving communications, such as launch a magazine, website, or an advertising or publicity campaign.

I checked hepatitis C medication costs all over the world.
They are so expensive everywhere—even Canada, Japan, and Mexico.

I made my own decision, and I told my husband Eric that I probably do not need this medication.

He said, “It’s up to you.” What a guy!
He knows I am a very optimistic person, so I was not going to worry over this medication.
I am so grateful that I did not get so attached to this issue and let go so I was not stressed out about it anymore.

A few days later, I got a phone call from a woman at UCLA hospital.
She told me there are pharmaceutical company programs to assist patients who can’t get the hepatitis C medication.
It usually takes three to six months to get an answer, but I can apply and find out if I am eligible or not.

Well, I believe in miracles, so I decided to apply; I had nothing to lose.
I requested an application form, which came in a few days.
I put together all my information and sent it to UCLA by email.
Two days later, someone from Gilead (the pharmaceutical company that produces hepatitis C medications Harvoni and Socaldi) called me and said, “Congratulations! You are approved to receive hepatitis C medication.”
I was so surprised that it was only two days after I’d applied.
What was going on?

She said I was going to receive Harvoni, which I’d heard was the most expensive.
She said, “It is prescribed by Dr. Han.” I asked why he chose it.
She replied, “Because of your DNA.”
What? What did she say?
My DNA?
When did they take a DNA test?
I could not believe what I’d heard.
She said, “You are lucky to get this free medication.”

The next thing I was shocked to hear was that the medication would be delivered next week by UPS.
I said, “Hmm?
Am I receiving $30,000 worth of expensive medication by UPS?”
She said that since it is expensive, the hospital does not keep it in their pharmacy.

Wow. They do not trust a hospital, but they trust UPS.
I am really puzzled by this system.

She said someone would call me before they shipped the medication the following week.
I waited about three weeks, but nobody called, and nothing came.
I thought maybe I had dreamed it all.

Meanwhile, so many things happened from the end of June to the end of August.
Eric got injured and was in pain for about seven weeks, so I had to go through emails from 60 different people who were interested in moving into the unit next to us.
The unit used to be my cooking studio and the office of Seed Kitchen, so it was the first time in 10 years we’d rent it out to someone we did not know.
I showed the unit to at least 30 people.
I was exhausted and forgot all about the medication.

Finally, we found the right people to move into the unit, and all of sudden I remembered that nobody had called me about the Harvoni medication.
I made a phone call to Gilead and had to talk to two different people to find out what happened.
They said they had a wrong phone number, so they never sent the medication.
What?
Wait a minute—they were the ones who’d called to tell me I got approved.
What did they do with my phone number?

On top of what had happened, getting the Harvoni by UPS was crazy.
They said someone would have to sign for it because it is so expensive.
So, I was home all day and did not even going to the back of my house,
so I could hear when the delivery person came to the gate.
Many times, delivery people and postal workers do not come inside the gate because of the “Beware of Dog” sign we have.

I waited about seven hours, and it was almost 4 pm.
I was getting tired of waiting, so I called Gilead and got the tracking number to check the status online.

Guess what?

It showed it was delivered at 12:29 pm and signed by Kari.
What?
Who is Kari?
I went to the front gate I found that $30,000 worth of mediation was left on the ground by the gate.

Harvoni of Hepatitis C Med. was delivered at my front gate

I could not believe it.
But am I glad that I received it?
Yes!

It was one day before Mercury retrograde came, but it sure felt like it had come way ahead of time.

I concluded why I got this free medication so quickly:
because I was a perfect candidate, who’d had lymphoma cancer and was getting better, with an application that was all together.
I know since I was accepted for this medication that I am supposed to take it.
I have been taking it everyday.
There are no side effects that I’ve noticed, even though I was told the following might happen:

• Fatigue
• Headache
• Nausea
• Diarrhea
• Insomnia
• Weakness

Thanks to my healthy macrobiotic life with remedy drinks that I drink every morning to detox this medication, no side effects!
Brava!!! ( The female form of “bravo”)

I look forward to seeing the results in November and let you know.

Love, Sanae💖

I wrote this blog last September.
It took time for me to be ready to share.
Now I am ready to post.
You will know why it took time for me to be ready after you read.

Before I announced that I was diagnosed with Primary Liver Non-Hodgkin of Diffuse Large B-Cell Lymphoma (DLBCL) I was concerned what other people would think of me.

When I was really sick from ovarian cancer 25 years ago and started macrobiotic and holistic approaches and nobody really wanted to talk to me about how I was trying to get better.

At that time macrobiotics and holistic healing were not so well known to most people, so my decision to not to have chemotherapy and follow only the holistic way was frightening to many people around me.

But after a year or so when I started to heal myself and look healthier, people started to ask me how I did it. I did not realize how much I was able to help other people with my story and I learned a lot about sharing it too. I did not plan to be a macrobiotic counselor, cooking teacher or educator, but it just came to me as I shared my story. Of course, I decided to go to school to learn more macrobiotic, natural healing and alternative medicine and went on to receive certificates and to practice everyday and it became my life.
Through practicing macrobiotics and living a natural life, it became my career naturally.

My first cooking class was at Erewhon natural foods market in 1995.
I was so happy to share what I had learned through ovarian cancer through my first teacher Cecile Levin and then Michio and Aveline Kushi. I realized that being a macrobiotic teacher required knowledge and commitment, and more importantly teaching by example. I continued to share my story and macrobiotic life with my husband and furry family.

I realized that there was a reputation connected to being a macrobiotic teacher.
I felt that reputation matched my good health and happy lifestyle with my family (Eric, dogs, and cats).

I received a letter from a macrobiotic acquaintance who has been active in the community for a long time. It was painful to read her judgments and misunderstandings about my condition.
She questioned my relationship with macrobiotics and clearly hadn’t read the details on my blog.

I understand her position; whenever a macrobiotic teacher experiences illness, it can send a wave of fear through the community.
It is human to experience that fear (of death, or of one’s own potential suffering), but it’s equally human to not want to feel it, so we throw it back on the person who is sick.
Judgment and projections fly.
Of course, most people don’t respond like this, and I have been met with an extraordinary amount of compassion on this recent journey, but being faced with judgment and a questioning my practice was one of my biggest fears when revealing my condition to the healing community.

For the record, I have never veered from my macrobiotic practice.
If I had, ovarian cancer would not have stayed in remission for 24 years.
I am not strict like I had to be to recover the first time, but I also don’t “play” widely. Eric and I cook almost every single one of the meals that we eat.
We even cook for our dogs!

So it’s not about macrobiotics or forgetting to practice the principles
It’s about life.

I contracted Hepatitis C sixteen years ago from a blood transfusion I needed in order to survive a catastrophic car accident.
I was powerless over that–I received the transfusion while I was in a coma.
We can’t control everything.
Hepatitis C can flip into large B-cell lymphoma in the liver.
The lymphoma in the liver was growing so fast, and the diet and other holistic approaches were not saving my life fast enough.
Receiving the diagnosis to live only weeks.
Stuff happens.

I am grateful to be alive, even to receive difficult letters.
And the lovely food I have the privilege of eating—the whole grains, the vegetables, the beans—give me the energy to send love to my macrobiotic acquaintance.
I wish her well.

The person who wrote me might have disapproved and been disappointed that I did not just do macrobiotics.
But I am living for me, not for this person.
I also know a quite few macrobiotic people and teachers who actually lost their lives because they did not seek and/or believe in western medicine.

As I wrote on my blog “My First Chemotherapy”

I had a conversation with the chemo medicine “I know you can help me, but I am feeling very heavy and dark right now since I do not know you yet. Please help me to heal, but do not destroy my good cells. I know you can do it.”

I learned to believe chemo medicine is there to help me and I wanted to make sure the chemo medicine could hear me so I had to communicate with it.

I know chemotherapy could destroy my healthy tissue and organs, but I am a macrobiotic person so I will not let chemo destroy me and if my healthy tissue and organs get weak or damaged in order for cancer to leave my body I will heal my tissue and organs and overcome it no matter what!

I was upset first when I read this person’s letter, but you know what…
it actually has helped me to thrive and motivated me to move forward to prove that the macrobiotics I have been practicing will work for me and will help many many more people in the future in the way that’s best, and everybody’s best is different.

I have been judgmental too, in the past, but I am learning to let go of it.
By going through the chemo, and all the feelings it kicks up, and having to be dependent on the kindness of others, my judgment has lessened and my compassion has grown. And so has my gratitude.

I am ready to go to the third cycle of chemotherapy to save my life.

Thank you,

Love,
Sanae 💖

P.S. After this letter, I found out some of my students don’t want to talk to me because I took chemotherapy to heal myself.
I was sad…

I have been teaching macrobiotics and holistic modality since 1995 and offering my macrobiotic nutrition counseling, but I never told anyone to not get conventional treatments, including chemotherapy.
Macrobiotics and holistic approach work usually for chronic conditions, not for acute conditions, and I believe meeting in the middle to use both benefits, if necessary.

What did I do?
I have learned when I started to live in the U.S. “What other people think of me is none of my business” so I Prayed for them.