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?
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?
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.
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.
It showed it was delivered at 12:29 pm and signed by Kari.
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?
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:
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.