Napili Bay, Maui July 18, 2019

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This is the view from the tiny balcony of our tiny studio apartment. That’s Lanai in the background. It’s a great view, but what I really love is the sound of the surf, which breaks about 25 feet from the balcony. The great variety of surf music is so calming, from the waterfall roar of large breakers, to the soft whoosh of the smallest waves. A watery lullaby better than any sleeping pill.

It has been a bit of a rough year for me, healthwise, and my request to come here, mainly to veg-out was agreed to by Roger, who has had to put up with a lot this year. I had intended to swim in the ocean every day, but they had something called a southern swell, and the surf was just too rough for me. We were able to go Tuesday and Wednesday, and will today, but on Sunday and Monday, when I tried, it was just too rough, mainly because of the medication, Afinitor, to fight my cancer, has side effects of extreme fatigue and muscle weakness.

Yes, once again I am contributing to the delinquency of pharmaceutical companies. The Afinitor costs about $12K a month. It will cost me about $11K this year. Yes, you read that correctly—you the taxpayers through my Medicare are paying at least $10K an (almost) month for my 28 pills of Afinitor. It is an obscene price, and the drug companies have no price regulation, thanks to their prostitutes in Congress. It has caused me to wonder what possible motivation these companies would have for finding a cure for cancer when they can make so much money selling these palliative drugs. After all, if you cure someone, they won’t be buying the palliatives.

It’s been two months and counting since I last attempted to write anything. Why? Not because there’s nothing to write about. No. I’ve not written because I’ve had little energy, drive or ambition.

I’ve made no secret of the fact that I have metastatic breast cancer. I was diagnosed shortly after the 2016 election, and was much more upset by the election of the orange menace than the news my cancer was back.

Since, for the past two months, my cancer has been the major focus of my life, I have decided to write about it—so if this is not your cup of tea, this would be a good place to stop reading.

My doctors were very optimistic, saying that there were many treatments available, and at this point I think I’ve been through at least half of the repertoire.

My first bout with breast cancer was in 2005. I had a lumpectomy and radiation treatment. It came back in 2014, under my arm. I was one of the 5% who had a false negative sentinel lymph node biopsy in 2005. This time I had a complete lymph node dissection, radiation treatment, and chemo. I knew that once cancer gets in the lymphatic system there’s a good possibility it will come back, and it did.

My 2016 diagnoses indicated I had two very small lesions, one in my liver and one in my T8 (eighth thoracic vertebral disk.) As I said, I was much more upset about having an ex- reality TV star, who was obviously racist, sexist, ignorant and incompetent as president.

Always before when I was diagnosed, I did as much research as possible about the stage, type, treatments available for my cancer. This time I did not. I pretty much just followed whatever instructions I was given. My old oncologist retired in December, but both she and my new oncologist recommended treatment with Tamoxifen and a new drug called Ibrance.

That was the first time I contributed to the delinquency of the drug companies. Ibrance costs about $12K for 21 tablets. (After taking the 21 pills, you take a week off.) My share after going through the $4K (approximately) donut hole was about $670 per month. Ibrance brags that it will, on average, prolong the period of disease progression free periods by two years and actually shrink tumors. And my PET scan in March of 2017 showed no evidence of the liver lesion. And all was well until my December scans. That showed a new, very small lesion, in my liver, as well as more activity in my T8, as well as some activity in my T12. The radiologist who had analyzed the scan referred to my cancer as indolent. Probably a good thing for a cancer to be. My oncologist recommended that I stop taking Ibrance and begin a new hormone blocker called Faslodex, which is given by injection. I was just fine with that, since the Ibrance side effects included extreme fatigue I was glad to give up.

This change in my diagnosis caused me to do what I usually do at the beginning of any new health problem, research. I read a lot of journal articles, and discovered that people like me, with less than five lesions in fewer than three areas of the body were considered to be oligometastatic,  and the best treatment was to aggressively go after the lesions as they show up in conjunction with the hormone blocking therapy. I shared my information with my oncologist, and asked her how the lesions could be so treated. Radiation was her answer. So soon, I had stereotactic radiation therapy for my lesions, as well as taking the Faslodex. 2018 was a pretty good year.

Then in December, a new lesion was found under my arm. My radiologist felt the best way to treat it was by surgery, which I had in January. Leaving time to heal for our wonderful trip through the Panama Canal and Costa Rica’s National Parks in February. When I returned, my oncologist recommended a new treatment, Afinitor, which I began, along with another hormone blocker.

Then, about the second week of April, I began to have severe back and ribcage pain. It got worse and worse, finally leading to a visit to the Scripps Torrey Pines Emergency Center. The scan they did only showed the possibility that the scar tissue on my T12 might be pinching the nerves. I was sent home with pain killers.

Calls to doctors, suggestion of a pain specialist, pain specialist insisting on a MRI before looking at me, doing it all through a haze of taking 10 mg of Vicodin every six hours. Doing crosswords, trying to exercise at least half an hour every day, being driven to everything by Roger, it was a very hazy, time. I believe the one thing that kept me from becoming a basket case was the discovery of two, very difficult jigsaw puzzles in our wall unit. It was a completely different challenge than my usual crossword, and the challenge kept me focused on something outside of myself.

Finally, had another PET scan and an MRI. On the PET scan my T9 showed up as having a little activity—barely discernable. On the MRI my T9 showed up being completely enveloped by cancer. My “indolent” slow-growing cancer may have been advancing in the T9 for years. Or?

Once again stereotactic radiation therapy saved the day. My pain diminished almost immediately—it had already been eased by a steroid course. Now my only symptoms are from the Afinitor. I will have a series of scans in August, including MRIs. Until then, I will be optimistic as possible, listen to the surf while I can, and go swimming.

 

 

 

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14 thoughts on “Napili Bay, Maui July 18, 2019

  1. Nik Grant

    Thank you for letting us know your situation. Lots of worry and uncertainty, but happy to see Hawaii is a priority. Take what you can from life! Best wishes.

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  2. karen nelson

    I have really missed you and your comments. I am so happy you are concentrating on YOU and your health. I will keep you in my thoughts for recovery.I know Roger is a wonderful support. Maui will help.Please know that we who value truth and responsible government admire you and respect you.
    Karen Nelson

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  3. Sid colquitt

    Maui is a great place under any circumsrances. Now hat we know why you are there we offer our prayers for your successful recovery.

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  4. Avis Durgan

    As a loving friend of your niece Anne, I’ve followed your blog for several years. I didn’t know that you were dealing with a recurrence of cancer and am very glad that you’re in Maui, which is a truly magical place. Napili Bay is one of my favorite spots for dolphin watching, too! Echoing another comment here, I’ve greatly admired your involvement in local politics and look forward to reading your comments. Hope the healing of Hawai’i stays with you when you return home.

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  5. Robert Hughes

    Thanks for sharing experience. Very helpful.

    On Thu, Jul 18, 2019 at 3:04 PM A Blue View for Escondido wrote:

    > mmliles posted: ” This is the view from the tiny balcony of our tiny > studio apartment. That’s Lanai in the background. It’s a great view, but > what I really love is the sound of the surf, which breaks about 25 feet > from the balcony. The great variety of surf music is so c” >

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    1. Chris Nava

      Thank you for sharing your health journey with us, and for allowing us to be a part of that journey I remind you that many of us are here to be your support, your friend, your cheerleader as you face the many challenges of the “invader”. Keep us in the loop.

      Hugs.
      Chris Nava

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  6. Jan

    It’s the lady with the gold peace sign dependent! Health issues have kept me from the world too. Just a heads up…cCare on Nordahl Rd across from Wal-Mart ….unbelievable cancer care…you are treated with respect and it’s as if you are the only patient. Staff is incredible doctors are the best. Dr. Anthony Julian….treated my son….in an instant her knew what was wrong. My son is a dialysisis patient now. That’s bad enough however ,when your grasping for answers and solutions cCare…..has its own connections…there is no waiting for test,diagnosis etc. it’ s immediate ! I’m so sorry this is happening to you Margaret. I gave up puzzles and play WORD online with a Fire tablet…usually against the compute r.there are a lot of others playing there too.24/7 I have a spinal injury but now deal w Lupus too. So fatigue is my enemy..I use a couple squirts of liquid B-12….from Amazon.and something I thought I’d never do…u see hemp oil from Amazon…pain pills made a zombie…now I just rub in a drop of hemp oil on my skin….instantly no pain..and I don’t smell like Ben gay….I use peppermint flavored…they have orange too…Serenity brand..some put a few drops in their tea…drink it hot. The feeling of no pain for hours n hours…was unbelievable!!! Not addictive…no zombie effect…I wish the best for. Jan

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    1. mmliles Post author

      I have been pretty happy with my care from Scripps. It is the expense of drugs that gives me pause. I intend to buy medical marijuana soon.

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