Tag Archives: CA 125

Dreaming in Ten Day Allocations

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A Brief Update from Marcy

Phew…..my 2015 roller coaster ride continues. In early April intensifying pain turned into non-stop vomiting indicating a bowel obstruction. I was admitted to OHSU, a teaching hospital where courageous bedside manner was being tested as I was informed on the severity of my status. One option presented, being “sent home to starve”, sent my support circle and I into an advanced stage of grief. The hospital advised waiting to see if my body could self-heal through fasting and no liquids to aid bowel recovery.  (Please Note: I have since come to understand that being “sent home to starve” is harsh language for a common way to die. As the organs begin to shut down due to cancer, the body no longer wants or needs food and then water leading, in fact, to what can be a very peaceful death.)

You Need Your Bowel - outer pink.

You Need Your Bowel – outer pink.

As my blog reported on April 7th (With Love and Luck) I did recover from this bowel obstruction but I remain at higher risk for more. As has been true for all of 2015, I continue a downward slide. It hurts to walk, so I don’t walk. I feel my cancer despite my opiate patch.

When first diagnosed I was informed that I needed to learn to live in three month increments. I did. I feel like my new mandate is to live with ten-day increments (the time it would take for a bowel obstruction not to self-resolve) and this feels hard. I need to think about every thing that I put in my mouth. Is it low fiber? My farmer husband is aghast that all that he grows and prepares for me as organic and full grain is now condemned.

White bread only!

White bread only!

I continue to find some amusement in the ironies of life.

Palliative care is now an active team member. They are great. They also advise me against hospice since in hospice I can have no chemo treatment and I would die fast. I am still opting for life.

I had a few days in the hospital where I had NO PAIN. I felt stable for the first time in 2015. I work towards that stability and then rebuilding all the strength I have lost.

This optimism is eased by my latest ca 125 showing a startling drop from 173 to 117. For days I refused to open any other messages from OHSU fearing they would retract the numbers.

Who knows….?  My body, my cancer and modern science rules.

Given my current weak status and high need for sleep, I am NOT keeping up with email. If you email me, hold your queries (please!) and instead just give me YOUR update. My blog will do its best to keep you posted.

If you live in the Portland metro area and want to help with daytime transportation or food support, let me know – again most of these helpers will get low contact with me – just talking tires me more than I can afford right now. I am officially dull but eager for your monologues.

Much love, marcy

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Brava!

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She may make everything look easy and glamorous but she is doing it publicly, with intention and saving far more lives than we will ever be able to count. Brava!  xo marcy

This was originally posted March 24, 2015 in the New York Times:http://www.nytimes.com/2015/03/24/opinion/angelina-jolie-pitt-diary-of-a-surgery.html

Diary of a Surgery by Angelina Jolie Pitt

LOS ANGELES — TWO years ago I wrote about my choice to have a preventive double mastectomy. A simple blood test had revealed that I carried a mutation in the BRCA1 gene. It gave me an estimated 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer. I lost my mother, grandmother and aunt to cancer.

I wanted other women at risk to know about the options. I promised to follow up with any information that could be useful, including about my next preventive surgery, the removal of my ovaries and fallopian tubes.

I had been planning this for some time. It is a less complex surgery than the mastectomy, but its effects are more severe. It puts a woman into forced menopause. So I was readying myself physically and emotionally, discussing options with doctors, researching alternative medicine, and mapping my hormones for estrogen or progesterone replacement. But I felt I still had months to make the date.

Then two weeks ago I got a call from my doctor with blood-test results. “Your CA-125 is normal,” he said. I breathed a sigh of relief. That test measures the amount of the protein CA-125 in the blood, and is used to monitor ovarian cancer. I have it every year because of my family history.

But that wasn’t all. He went on. “There are a number of inflammatory markers that are elevated, and taken together they could be a sign of early cancer.” I took a pause. “CA-125 has a 50 to 75 percent chance of missing ovarian cancer at early stages,” he said. He wanted me to see the surgeon immediately to check my ovaries.

I went through what I imagine thousands of other women have felt. I told myself to stay calm, to be strong, and that I had no reason to think I wouldn’t live to see my children grow up and to meet my grandchildren.

I called my husband in France, who was on a plane within hours. The beautiful thing about such moments in life is that there is so much clarity. You know what you live for and what matters. It is polarizing, and it is peaceful.

That same day I went to see the surgeon, who had treated my mother. I last saw her the day my mother passed away, and she teared up when she saw me: “You look just like her.” I broke down. But we smiled at each other and agreed we were there to deal with any problem, so “let’s get on with it.”

Nothing in the examination or ultrasound was concerning. I was relieved that if it was cancer, it was most likely in the early stages. If it was somewhere else in my body, I would know in five days. I passed those five days in a haze, attending my children’s soccer game, and working to stay calm and focused.

The day of the results came. The PET/CT scan looked clear, and the tumor test was negative. I was full of happiness, although the radioactive tracer meant I couldn’t hug my children. There was still a chance of early stage cancer, but that was minor compared with a full-blown tumor. To my relief, I still had the option of removing my ovaries and fallopian tubes and I chose to do it.

I did not do this solely because I carry the BRCA1 gene mutation, and I want other women to hear this. A positive BRCA test does not mean a leap to surgery. I have spoken to many doctors, surgeons and naturopaths. There are other options. Some women take birth control pills or rely on alternative medicines combined with frequent checks. There is more than one way to deal with any health issue. The most important thing is to learn about the options and choose what is right for you personally.

In my case, the Eastern and Western doctors I met agreed that surgery to remove my tubes and ovaries was the best option, because on top of the BRCA gene, three women in my family have died from cancer. My doctors indicated I should have preventive surgery about a decade before the earliest onset of cancer in my female relatives. My mother’s ovarian cancer was diagnosed when she was 49. I’m 39.

Last week, I had the procedure: a laparoscopic bilateral salpingo-oophorectomy. There was a small benign tumor on one ovary, but no signs of cancer in any of the tissues.

I have a little clear patch that contains bio-identical estrogen. A progesterone IUD was inserted in my uterus. It will help me maintain a hormonal balance, but more important it will help prevent uterine cancer. I chose to keep my uterus because cancer in that location is not part of my family history.

It is not possible to remove all risk, and the fact is I remain prone to cancer. I will look for natural ways to strengthen my immune system. I feel feminine, and grounded in the choices I am making for myself and my family. I know my children will never have to say, “Mom died of ovarian cancer.”

Regardless of the hormone replacements I’m taking, I am now in menopause. I will not be able to have any more children, and I expect some physical changes. But I feel at ease with whatever will come, not because I am strong but because this is a part of life. It is nothing to be feared.

I feel deeply for women for whom this moment comes very early in life, before they have had their children. Their situation is far harder than mine. I inquired and found out that there are options for women to remove their fallopian tubes but keep their ovaries, and so retain the ability to bear children and not go into menopause. I hope they can be aware of that.

It is not easy to make these decisions. But it is possible to take control and tackle head-on any health issue. You can seek advice, learn about the options and make choices that are right for you. Knowledge is power.

This was originally posted March 24, 2015 in the New York Times:http://www.nytimes.com/2015/03/24/opinion/angelina-jolie-pitt-diary-of-a-surgery.html

What’s in a Number?

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Many cultures and individuals give power to numbers. Numbers can translate the seasons into a calendar. Numbers allow us to add and divide and track things in a linear manner. Numbers can cast a fortune or let us know if now might be a good time to buy a lottery ticket and they certainly make finding a destination manageable enough that between the street number and zip code we can find almost anywhere our Thanksgiving dinner might be waiting. And the wrong number, well, that leads to trouble.

Many cancer patients live by the numbers even as our doctors caution us to “wait, just wait.” But blood work translated to numbers is the first indicator our cancer might be growing, breaking through treatment, rushing our hopes. Setting that whisper aside is not easy.

Every 3-4 weeks since diagnosis my blood work has been tabulated into a number that I record in a chart. My chart shows helpful patterns since my marker, the ca 125, is a very individualized indicator. If we went by what is considered normal, I wouldn’t have had the recurrence of my cancer that I have been fighting since August 2011, a tough, long recurrence even if the numbers do not even reflect it should be there. So with my very small number range, I can track the relative behavior of my cancer especially between scans.

Seven or below are numbers I like – they allow me to sigh with the knowledge that my cancer is at least stable albeit visible. Now it climbs small baby steps – 8 in October, 9 in November, laughable upward creeps unless you have my tight range where new cancer growth is visible by 12. I feel sadness at what December may show in blood work and a new ct scan of the insides.
People love to count their blessings and I am no different. I will seat myself at the community table this Thanksgiving with so much I feel grateful for – cancer not being on that list. I share a story below about gratitude and being real. It may resonate with some of you and offend others. A friend relayed it to me who is better at attending cancer support groups than I.
One of my friend’s pals was in the end zone of his cancer, his cancer having just jumped the barricades of his last available drug and was now moving fast. He had weeks left and children still needing to be raised. He had enormous physical pain to boot. At this group a newly diagnosed terminal patient arrived in some place of deep gratitude over all the ‘gifts’ her cancer was giving her. The man turned to her and said, “Honey, you might not always feel that way.” The story has kept me chuckling at what some of us grumps choose not to be grateful for.
Happy Holidays!Unknownwarmly, marcy