deborahjross: (Deb and Cleo)
I haven't been very active here on LJ for a while, but I haven't been active anywhere in the last few days. Rather than simply being absent and feeling sorry for myself, I think I'll whinge a bit.

I'm prepping for a colonoscopy. If that squicks you out, come back later when it's all over. I haven't even gotten to the gooey bodily-fluids part. Here's a nice LJ Cut for you.
Read more... )
In general, I'm pretty good at doing the screening tests my doc (whom I adore, and vice versa) recommends. I wasn't thrilled about the first colonoscopy, and that experience made me hesitate this time. Yes, it was 10 years ago and nothing showed up. Yes, I eat a ridiculously healthy diet. But the prep was -- well, to say the osmotic laxative tasted vile is to insult the word "vile" by insipidity. Instant, almost overpowering nausea. Barely managed to keep the stuff down (my sister, 5 years my junior, tried and failed on her prep). And that is to say nothing of the er, copious, results. As uncomfortable as the cramping and explosions were, I coped with lots of the softest toilet tissue I could find and a supply of Preparation H wipes (very soothing). To add insult to injury, it didn't work completely.

I remember the procedure, despite being sedated. I remember that it was painful, but not the pain itself. I remember hating the sedative and not being clear-headed for a week afterward. Since then I have had 3 surgeries (knee arthroscopy, cataracts in both eyes) without sedation and I'm willing to argue with any anesthesiologist who thinks it will make me more comfortable. I do just fine with my yoga breathing, thank you, and pass the Fentanyl.

So the deal this time is 2 days of clear liquids instead of 1, to which I added 2 days of a low residue diet before that. I have had a vivid demonstration of how much happier my body is on my normal (high fiber, tons of fresh fruits and veggies, whole grains, fish) eating pattern. Innards got unhappy; blood sugar levels got really unhappy.

Today's the first day of the clear liquids. Apple juice (fortified with vit. C), herb tea, expensive delicious sodas (root beer is a godsend because it's so flavorful and chewy), jello. I haven't eaten jello in 10 years and now I remember why. Broth/bouillon. Aside from the microscopic amount of protein in the jello and broth, all my calories are coming from sugar. This on top of days of white bread, white rice, no fresh veggies or fruit... I'm beginning to understand why folks snarl at one another. It's cold and I feel even colder. My stomach hurts and there's no milk to soothe it.

Whinge, whinge, whinge.

Here's what's keeping me going. I only have to get through another day of this (and then an evening of disgustingness). If the test is clear, this is the last one I will ever have to do. (Unless there are special risk factors or polyps, the test isn't recommended after age 75, which I will be in 10 years.) I keep telling myself, "Just one more hour, just tonight, just tomorrow."

But the biggest thing is imagining [livejournal.com profile] jaylake with his big smile and his immense heart. And all the other friends I've lost to cancer. I feel their love and how they are cheering me through what is, after all, a minor inconvenience for a huge payoff.

Thanks, Jay and Bonnie and everyone. This glass of Virgil Root Beer is for you!
deborahjross: (dolomites)
Just read that Jay Lake died. Stomped around my friend's apartment, cursing silently and not so silently. I knew him in person far less than I would have liked -- an exuberant, funny, loving man. I was privileged to work with him as an editor, and loved reading his work. I have tremendous admiration for his courage and willingness to be open about his journey through cancer. My heart goes out to his family and all his many, many friends. We were lucky to have him in our lives, if only for far too short a time.
deborahjross: (Deb and Cleo)
The folks at Smart Patients "Real Cancer Stories" taped Bonnie talking about tango dancing. (I have an off-screen cameo, handing her the red tango shoes -- 7 1/2 cm was the size of her largest lung tumor).

deborahjross: (blue hills)
[livejournal.com profile] jaylake on how pain is not a competition. I found his words profoundly moving.

Except suffering is not a contest. Suffering is not a race to the bottom. It’s not a competition to see who has the worst, most unspeakable affliction.

I run into this when I tell my own story about my mother’s murder. People always want to compare their pain to mine and it simply doesn’t work that way.

Pain is pain. When we hurt, the last thing we need to think is that somehow our pain isn't sufficient or worthy because someone else has a more spectacular story.


[cancer] Comparing pain cards just makes me want to go for my thankfully nonexistent guns | jlake.com
deborahjross: (halidragon)
For a long time, I've held to the belief that supplements cannot take the place of a healthy diet. There's so much in food -- meaning whole, fresh, unprocessed stuff -- that we don't even know about, or that works best in the combinations in natural food. I've been impressed, over and over, at how simple things we can do to take care of ourselves -- by our food choices, by getting lots of exercise and sleep, wearing our seat belts, not smoking, drinking moderately if at all -- turn out to be the best prevention for all kinds of diseases (or in the case of seat belts, premature deaths).

Remember the craze for vitamin E back in the 1980? Or mega-doses of vitamin C to ward off everything from cancer to the common cold? Debunked. Now yet another piece of research suggests that taking nutritional elements (in this case, anti-oxidants), isolated from their natural comrades and in huge quantities, can be harmful. The suggestion here (not yet demonstrated in humans, mind you) is that the anti-oxidants studied can actually increase the growth of cancerous tumors by protecting those cells in the same way they're supposed to protect normal cells.

Supplements act like pharmaceutical agents when taken in these quantities, and should be regarded with the same care and skepticism. Do they do anything good? Do they do anything bad? How do we know -- has this been proven by rigorous studies, not casual anecdotes?


Antioxidants Accelerate Lung Cancer Progression in Mice
deborahjross: (Default)

When a friend or family member is diagnosed with cancer, the effects ripple through the community. If we and our friend are relatively young, we may feel shock but also a sense of insulation. We have not yet begun to consider our own mortality, or the likelihood of losing our peers to accident or one disease or another. It hasn’t happened to us yet and the odds are still in our favor, particularly if we don’t smoke or drive drunk, we exercise and eat many leafy green vegetables. As the years and the decades go by, most of us will see an increase in morbidity if not mortality in our friends. They – and we – may develop osteoarthritis or Type 2 diabetes, high blood pressure, high cholesterol, all those common ailments of aging. Some of us will get cancer.

When my best friend Bonnie was diagnosed with ovarian cancer about 5 years ago, she was the closest friend I had who had cancer. Since then, other friends have been diagnosed and some have died; Bonnie died in October (peacefully, at home). One of the things Bonnie did way back when was find support groups for women with cancer. Maybe it’s a holdover from the consciousness-raising groups of the 1970s, but it’s practically a reflex: whatever is going on in your life, you grab a bunch of women to talk it through. Do men do this, too? If so, it’s a secret from me.

It turned out that a cluster of women who were at college with us at the same time and who still lived in the area wandered through these groups at one time or another, or were otherwise associated with this community. Some have also died, some aren’t doing too well the last I heard, and some are thriving. One of these is my friend Constance Emerson Crooker.

Connie and I weren’t close in college, but it was a small school and everybody pretty much knew one another in passing. She wasn’t an avid folk dancer or a Biology major like me, but she and Bonnie stayed in touch so I’d hear about her from time to time. Connie was one of those who stepped up to the plate in Bonnie’s final weeks, and I was not only grateful for the extra and very competent pair of hands but for the chance to get to know her better.

Read more... )
deborahjross: (Shield #1)
Now is the time when Jews around the world prepare for the new year by examining their conduct and “making teshuvah.” Teshuvah means “return,” as in returning to our source, re-turning to our best selves. It’s often practiced by saying, publically and privately, “If in the past year I have done anything to harm or offend you, I am truly sorry and I ask your forgiveness.” (Can you imagine a world in which the leaders of the most powerful nations said that to the peoples of the least powerful?) It is considered a mitzvah to do this. Mitzvah means commandment, but it also means blessing and declaration. We offer ourselves in blessing to one another (and, if you are a theist, to the Eternal) in our willingness to admit our shortcomings and our renewed determination to make the world a better, less broken place (“tikkum olam,” or “repairing the world”).

So I say this to you, who are reading my words: It has never been my intention to harm you but if I have done so, by anything I have said or done, or failed to say or do, I am truly sorry.

My personal focus during this season of renewal is different from what it has been in the past. The world is full of sorrows, as so many traditions point out, sorrows that cannot be mended by human means. There is absolutely nothing I can do to alter the course of my friend’s disease (ovarian cancer).

There is much I can do to ease her final wRead more... )eeks.

I’m awed and astonished by the grace with which my friend is approaching this passage. You can read her story in her own words here. Her two grown children are with her today, as is one of their partners and her wonderful husband. We’ve had lots of storytelling, lots of memories, and not a few laughs. Friends and neighbors have filled their freezer with food, although she tires easily and can't handle too much company. They’ve set me up in the little RV across the yard from the house, and I can see a single cream and peach rose still blooming in the garden.

Oregon is currently doing its water-from-the-sky thing. It's as if the sky is anticipating grief. The barn and pasture are empty, the last horse having gone to live with a trusted friend. The garden, in past years so well tended, still yields a richness of tomatoes and squash and a few late raspberries. The apple and plum trees are bowed under the weight of the fruit, but the blueberry bushes are bare.

Much of what I do is give the family caregivers a break, hug anyone who needs it, rub shoulders and backs, offer food when people are hungry and silence when they’re tired, drive and run errands, but most of all, I listen. I want so badly to make things better – to repair the world of these people I love, to give my friend another decade or three – that it’s easy to forget the biggest gift I can offer is a silent mind and an open heart.
deborahjross: (Deb and Cleo)
It just shows to go you that when you brace yourself for the worst, all you see is your own fears.

Oka is now on maintenance chemo with a different IV drug, soon to go to every 3 weeks, plus an oral drug. He's tolerating both without any noticeable side effects. In fact, other than where they needed to shave one leg or another for access to a vein for the IV, he gives no sign of illness. He is his usual bouncy, eager self, and we hope this goes on for a long time.

Cleo continued to eat and gain weight, and therefore strength. She's moving about more and rebuilding muscle, although of course she is not as steady on her feet as the younger cats. She is now officially TWENTY YEARS OLD, and still purring and sleeping in her favorite sunny places.

There she is on my shoulder in the icon.
deborahjross: (Oka)
Oka has finished his 4-drug chemo protocol, is now in remission, and will start on maintenance chemo today. He's almost back to his usual self, given the degenerative myelopathy. (Sometimes his hind legs give out and he gets this, "How did I end up on the ground?" puzzled expression.)

And Cleo the cat has pulled off yet another miraculous comeback, is eating her fool head off and gaining in strength and well as weight. You can never predict what tortoiseshell cats will do next - they have Pronounced Opinions! And like all cats, they know exactly how the universe should be run.
deborahjross: (Default)
My dear friend Bonnie sent me a link to a recent article from National Cancer Institute on the possible benefits of fasting in cancer treatment. The Woo-Woo-sphere abounds in advice about what to eat or not eat either to "prevent" cancer or to treat it "naturally." While it's by no means definitive, the folks who are doing the research have respectable academic chops, so it's worth taking a look. Various caveats apply: lots of this is theoretical, and we're early into human trials. And we don't know which cancers and which chemo agents are relevant, so general applicability isn't established. But...and it's a huge but, for many cancer patients undergoing chemo there's no down side. So it's worth discussing this as an adjunct to chemo with the oncologist.

The idea is that normal and cancer cells react differently to fasting. Normal cells conserve energy, shifting from growth to maintenance modes. Cancer cells don't have the same flexibility - unrestricted division is, after all, one of the hallmarks of cancer. So here they are, still dividing like mad, deprived of the glucose and other stuff they need. So they're more stressed by fasting than are normal cells. Hit them with chemo at the same time and they should be more vulnerable.

In animal studies, that's what seems to be happening. Better and longer-lasting response to chemo agents, fewer side effects, unexpected remissions. They're doing human clinical trials now in the US and Europe.

(There's also some intriguing stuff on whether oral chemo agents can be enhanced by taking them with food, particularly those drugs that maintain long term remission.)
deborahjross: (Default)
From my dear friend, Bonnie Stockman, as she faces her third recurrence of ovarian cancer, posted with her permission:

I'm going into my third lap. One is such, ah, a virgin the first time. So hopeful and optimistic for a cure even with less than charming odds. The second time is a denouement of sorts, but a thin thread of hope hangs in there - I've talked to a couple of people that had a recurrence many years ago and are here to tell about it. The third time... haven't run into anyone that's a long term survivor after the third time. The stats for treatment effectiveness are similarly less than cheerful. At this point, one term I saw used was "salvage chemo". Buys one time - and hopefully salvages some decent quality of life.

I will miss hearing what happens in all the stories, but I am reminded that the stories are endless and the beginnings before my time. I wonder about both ends of them, but all I have is my part right here in the middle of beginning and ending. It was for others to know the beginnings and it is for others to know the endings, if indeed there ever are any endings. Like the saying on the hippie school bus: "Now is all we have".


Indeed, we have now. And if we have been generous with our hearts, we have each other. Sometimes, we have each other even if we haven't, because life itself is full of gifts. Every day.

Open your eyes. Tell someone you love them. Listen when they love you back.
mirrored from Deborah's blog

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Deborah J. Ross

May 2017

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