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I take a lot of supplements. I don’t drink kale shakes but only because my blender isn’t good enough to process kale. I do eat a lot of kale though. Love it! Kale chips are so easy, I just spray them with olive oil and bake till crispy.

My favorite kale recipe is a roast. I put chicken apple sausage in a roasting pan, add: apples, raisins, sweet potatoes, carrots and kale. Bake and it is to die for.

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Mon Mar 23, 2015 at 05:04 PM PDT

Creature Comforts

by ZenTrainer

Going through cancer takes a lot of skills that I wasn’t sure I had, so I was surprised to discover that I did have a lot of skills that were required of me, especially the cerebral ones. I could easily research treatment options, make decisions about the ones I wanted and negotiate that with my team of doctors. I was able to stand up for myself politely but firmly. I could plan and schedule work and life around my recovery.

The cognitive tasks were a breeze. The social/emotional tasks? Not so much. I did learn to ask for help during the process and that’s something I’ve continued to do. I could not control my anxiety levels and still have problems with that. Xanax is my best friend and goes everywhere with me.

Comforting myself was not something I knew how to do in a healthy way either. It was not something that came from inside of me. Sadly for me, most of the ways I knew to comfort myself were not that healthy; drugs, alcohol and food. Lots of food; I’m not talking carrots here either.

Of course everyone needs comforting in their lives, some more than others. I would say that cancer patients go in the “more than others” category. So, how to comfort myself?

As I floated through the days of recovery, I found some things that just came naturally to me as ways to find comfort. I would sit in the sun covered with a blanket on a warm fall day.

I watched TV and movies that were colorful and had simple and upbeat story lines.

And as always I was surrounded by the most wonderful creatures to whom comforting seems second nature.

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Mon Mar 16, 2015 at 03:52 PM PDT

Update on my hand

by Sara R

Reposted from Sara R by Sara R

When they said a bulky bandage, they weren't kidding

Kind friends have been asking what happened last Thursday.  I had a fingernail removed so that a biopsy could be taken of the skin underneath.  It may be a couple weeks until I know the results -- and there is a possibility that the biopsy will need to be repeated if it seems likely that the problem was originating from the matrix.  I'm really hoping that won't be necessary because it will likely mean the nail will grow out funky forevermore.  Also, I will be back to square one as far as healing is concerned.

The dermatologist who did the procedure was terrific and really put me at my ease (I was terrified, I admit).  It didn't hurt while she was doing it.  The worst pain was for two days afterwards -- but there are pills for that and I took 'em!  Right now, I am okay.  I am just inconvenienced by a bulky bandage that I will have for at least two more days.

The problem?  My nail changed.  A split developed that never went away and a discoloration later appeared under the nail.  The discoloration was growing and changing.  And the nail became very sensitive if hit. There are a number of benign things that this could be -- so that is what I am hoping for.  I never in a million years thought that a person could develop a skin cancer under a nail -- but apparently, you can.  If you ever see a change in a nail, get it checked!

Once again, I am deeply and most sincerely grateful for ACA.  And my friends.  And my sister who is picking up the slack.  I am most fortunate.

Reposted from Betty Pinson by Betty Pinson Editor's Note: Please welcome Betty Pinson as our guest diarist for tonight's Monday Night Cancer Club. -- Betty Pinson

After spending much of his 2014 re-election campaign running tv ads showing his support of breast cancer screening for uninsured women, Gov. John Kasich has completely eliminated Ohio's Breast & Cervical Cancer Treatment Program (BCCP Medicaid) from his FY 2016-2017 budget.  The program provides emergency, temporary Medicaid coverage to uninsured women earning up to 200% of FPL who were diagnosed through the state's free screening program. His proposal doesn't just leave it out of the budget, it eliminates the program completely. Forever.

It seems that, while Kasich plans to fund free mammograms and pap tests for uninsured women up to 200% FPL, if they're diagnosed and not eligible for the Medicaid Expansion (which only covers those earning up to 139% FPL) they'll have to buy private health insurance.  In short, he only cares if you get diagnosed, he doesn't care if you need treatment. And if you're lucky enough to earn so little to qualify for the Medicaid Expansion, he's going to charge you a monthly premium to get it.

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Mon Mar 09, 2015 at 05:30 PM PDT

What do you need help with?

by ZenTrainer

A better title might be “What will you accept help with?”
I’m sure it’s not just cancer patients who have a hard time asking for or accepting help. Way before I ever got cancer I had hernia surgery and took a car service to and from the hospital. I wouldn’t let any of my friends help.

I hadn’t changed much when years later I got cancer and needed surgery. Fortunately for me my friends had and one in particular insisted on driving me to the hospital – at 5am.

She waited for me till I was out of surgery and then drove me home. She did it all again 10 days later when I had a second surgery.

Many of my friends stepped up and helped, sometimes because I asked and sometimes just because I told them what was going on with me.

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Reposted from KosAbility by peregrine kate Editor's Note: A fair amount of this information may be helpful for those of us with a cancer diagnosis. -- peregrine kate

HeyMikey posted this extreemly helpful comment on the different programs run by SSA.

This requires a fairly geeky level of understanding of how the retirement and disability programs work. But as Ross Perot said, hang in here with me for a minute.
You might want to eyeball it by clicking on his name link above, before slipping through the "Infinity sign" a la kos...

a block of nine abstract depictions of disabilities
KosAbility is a Sunday volunteer diarist com- munity of, by & for people living with disabilities, who love someone with a disability, or who want to know more about the issues. By disability we mean temporary and permanent health/medical conditions — from small, gnawing problems to major, life-threatening ones. Our use of love someone extends to cherished members of other species.

Our discussions are open threads in the context of this community. Feel free to comment on diary topics, ask questions to the diarist or generally to the group, share something you've learned, tell bad jokes, post photos, or rage about your situation. Our only rule is to be kind; trolls will be spayed or neutered.  If you are interested in contributing a diary, contact series coordinator postmodernista.

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Last week, the New York Times published an article featuring a new approach to drug testing for people with unusual cancers that show particular genetic mutations. Instead of the old protocol, in which people with the same kind of tumor are given a new remedy to try, and comparisons are made with the outcomes of standard treatments, this new approach looks for people whose cellular mutations are the same, regardless of the organ in which the cancer first appeared. Thus, people with cancers that are typically considered unrelated may qualify for these new tests as long as their tumors show these mutations.

Gina Kolata, a long-time science writer for the Times, writes with exceptional enthusiasm about the promise of this approach, but notes possible problems as well. I'll offer some teaser quotes here, but in the interest of fair use I'd prefer you to go read the original. It's not long. We'll wait. ;)

The studies of this new method, called basket studies because they lump together different kinds of cancer, are revolutionary, much smaller than the usual studies, and without control groups of patients who for comparison’s sake receive standard treatment.
Basket studies became possible only recently, when gene sequencing became so good and its price so low that doctors could routinely look for 50, 60 or more known cancer-causing mutations in tumors. At the same time, more and more drugs were being developed to attack those mutations. So even if, as often happens, only a small percentage of patients with a particular tumor type have a particular mutation, it was possible to find a few dozen patients or more for a clinical trial by grouping everyone with that mutation together.
The new studies pose new problems. With no control groups, the effect has to be enormous and unmistakable to show it is not occurring by chance. When everyone gets a drug, it can be hard to know if a side effect is from the drug, a cancer or another disease. And gene mutations can be so rare that patients for a basket study are difficult to find.
If I had advanced cancer for which no other treatment was successful, I also might jump at the chance to participate in such a trial. What's impressive for these treatments is that the responses can be surprisingly good in a high percentage of those who try it. Unfortunately, as with all cancer treatments, nothing is 100% effective, and even this last-ditch hope doesn't pan out for everyone.

But what do you think? Would you try something like this, if you had no other options? Have you heard about anything else with this kind of novelty in traditional clinical trials? Curious minds want to know.

Thanks for sharing tonight; as always, this is an Open Thread. No topic is irrelevant if it concerns your health and recovery.

Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7:30-8:30 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.



Mon Feb 23, 2015 at 05:22 PM PST

Cancer as a Wake-Up Call

by peregrine kate

Many of you may have seen the powerful and eloquent statement in the New York Times by Oliver Sacks, the eminent neurologist, in which he announced that his ocular melanoma has metastasized to his liver. (WarrenS posted about Sacks' announcement the day it appeared.)

I'm sorry that Dr. Sacks, a wise and kind man by all accounts, has joined the group of people who will be taken down by cancer. We all will die somehow, sometime, of course, and I suppose there are worse ways to go. As one might expect, Dr. Sacks is treating this development with considerable equanimity. He writes

It is up to me now to choose how to live out the months that remain to me. I have to live in the richest, deepest, most productive way I can.
and also
I cannot pretend I am without fear. But my predominant feeling is one of gratitude. I have loved and been loved; I have been given much and I have given something in return; I have read and traveled and thought and written. I have had an intercourse with the world, the special intercourse of writers and readers.
Few of us have anywhere near the professional success and international fame that Oliver Sacks has accrued in his lifetime. Yet we all have the opportunity to do our very best with the time we have after a life-threatening diagnosis (assuming there is some span of time between diagnosis and death).

I don't think I'm inordinately morbid, but I do think of this topic a fair amount. I suspect it's a common reaction for most people who must confront their mortality rather sooner than they expected to do so.

I've mentioned several times in the past few diaries I've posted for the MNCC how mindful I am this year of my diagnosis anniversaries: yesterday it was four years since my surgery, and tomorrow it'll be four years since I learned the severity of my condition. But the cancer diagnosis itself happened a month prior to each, and this whole month I've been thinking especially hard about what I've been doing since diagnosis, and what I still hope to accomplish with whatever time I have left.

A great deal of my energy has gone to getting well. Where the full credit should go for my success to date, I cannot tell. But considering just how sick I was, and how much better I am, there's plenty of credit to go around. I am happy to thank my oncologist, my Ayurvedist, and my acupuncturists for all doing their very best to help me regain my health.

My next greatest effort has gone into parenting. My younger daughter is now in college, a big accomplishment considering where we were four, three, two, or even one year ago. She's much farther along the way to being an independent, self-sustaining adult, and I am enormously grateful to have seen her arrive at this place.

And a few months ago, apprehensions about my long-term health notwithstanding, my husband and I made a huge leap of faith and bought a house together. Now, like all houses, it will likely become a money pit; there are a couple of projects that already await better weather. Still, I am delighted to have been able to put down roots again to this extent, and we all feel much better and more productive in our present environment. I am exceedingly grateful to be well enough to take this risk and savor what it has already brought. Certainly I have had moments that have surpassed my expectations of what this dwelling place would provide, including my sighting just a few days ago of a Bald Eagle flying past my office window!

Even without a major life challenge like cancer, this would be the moment when I would expect to have to take stock. Children grown, or nearly; degrees earned; a measure of financial and geographical stability achieved (though not at all from my own doings)--all these signify a time to consider yet again what I want to do with my own life, apart from being a parent, a child, or a spouse.

I wish I had some solid answers, something dramatic to announce. I've been toying with a book project or two, and there is some chance that one will become a high priority by the end of the year. I've become far more involved politically, helped along in no small measure by my presence here at this site, at Netroots Nation, and from being a DFA Scholar to NN12 in Providence. I have plenty of room to expand my local involvement in environmental and social justice activism, opportunities that satisfy my need to be of use.

But I still yearn on some level for something more transcendent. It's in that vein I share with you the experiences and insights of a woman in Australia who has advanced uterine cancer, which at this point may not be treatable by conventional means. Please join me after the jump for a little bit of her story.

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Mon Feb 16, 2015 at 05:29 PM PST

Too cold for cancer.

by ZenTrainer

Brrrr... it’s very cold here today and I’m snowed in. In Tennessee!! It’s not the snow that gets me it’s the ice. In 1994 we had a huge ice storm that took out a lot of power lines and much of the city went without power for days.

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At the end of January I went to see my Oncologist. It was my regular quarterly visit; blood work and a check under the hood.

I actually had wanted to get in at the beginning of the month because I have been sick for so long. I wanted blood work done and I had questions about my immune system. They couldn’t see me then, I think I did a diary about it here.

So I waited. In the meantime my family doctor and I figured out why I had been getting sick for the last 5 months. It seemed to coincide with a client of mine having a  baby who is now 5 months old.

I got a giant bottle of hand sanitizer to keep at their house and that problem seems to be solved.

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Mon Feb 02, 2015 at 05:30 PM PST

On the Other Side of Cancer

by peregrine kate

I should elaborate on the title. I'm not thankful for having had cancer, not one bit. It's been frightening and painful and expensive. It's changed my life permanently, in many ways I do not welcome. I don't think I'll ever be free of the undercurrent of anxiety I have about its return (unless, of course, it does come back. I'd prefer another resolution of that issue, obviously.)

Still, now that I have been in remission long enough to forget just how long it has been (2.5 years, which is pretty respectable), I have noticed some positive effects from having survived such a harrowing experience. This may or may not be typical of people who've had cancer. But I tend to think that anyone who's been through a major, life-threatening crisis only to see the risk recede may feel similar relief and euphoria.

I'm not quite sure why I feel so encouraged now, more so than I did four months ago when I stopped the last oncologist-prescribed remedy. Probably it's because it's birthday and anniversary season for me now. I mentioned the anniversaries a couple of diaries back. The birthdays (mine and my older daughter's, twelve days earlier) also provide an obvious milestone against which I can measure my progress.

However it has come about, I am feeling very energized, at least for me. Motivated by seeing ski tracks on local golf courses after the penultimate snow we've received, today I found all three components of my cross-country ski kit. I love, love, love to cross-country ski! But for any number of inadequate reasons, I haven't skiied in ten years. It seems like high time for me to pick that up again.

Have you ever had the experience of returning to an activity after a break from it? Of course, some loss of skill is inevitable. But oddly I've also found that the time away can sometimes provide an opportunity for very subterranean integration to happen, so that when I take up that activity again I understand it differently than before and find it easier to catch back up than might be expected. I'm hoping that will be true for me in this instance; we shall see.

So there's one pleasure I'm experiencing now on the other side: a re-examination of priorities for my precious time, leading to a rekindled interest in pursuing activities or goals I have really enjoyed. Another is the new effort I'm making to reconnect with people I enjoy, but have lost touch with as we lead busy and physically distant lives. In the past year or so, I've sought to do that far more often than I did in the early days of my illness and recovery, and more even than I did before I got sick. That, too, is a sign both of my improved health and my decision to organize and address my priorities differently. So far, I've had pretty good success with those efforts to reconnect, though there's no guarantee it'll continue. Seems worth the time and trouble all the same.

The third novelty I'm enjoying in my post-illness state is a greater willingness to try new things. My latest toy is make-up. To anyone who's known me for many years, that concept would seem very out-of-character. I was adamantly opposed for a very long time to observing the conventions of femininity, I daresay often for very good reasons. For example, there was a long stretch of time--sixteen years, in fact, from the ages of 16 to 32--when I declined to shave my legs. Let us just say that was not a common stance in my social circles, though it wasn't completely unheard of. But at some point I decided it wasn't worth it to me to buck convention to that extent, and so I started shaving. (Now, in post-menopause, the issue is rapidly becoming moot~! Ah, the ironies.)

Wearing make-up, however, seemed to take conformity too far. And so for nearly all of my adult life, I've gone commando in that regard. Maybe some lipstick, if I were really motivated. It just didn't seem that important, and I resented it that men didn't have to worry about it at all.

My daughters are not nearly as resistant as I, however, nor are they obsessive about their appearance. So that softened me up a little. Recently, vanity has started to intercede as well. Thus when I was lucky enough last month to win several bottles of skin care potions at our local health food grocery, I figured I'd take the plunge. Now I'm typically spending about 5 minutes a day putting on toner and foundation after using a special face cleanser.

Not too many people have noticed, really, though my husband did say the other day he liked the shade of lipstick I was wearing. That's good, I guess; better not to be obvious, for sure. But it's not a bad thing at all to tend with care and appreciation to this well-lived-in face and body of mine, I've decided. It might have to last for a lot more years than I was thinking, and that's pretty good incentive to me for change.

How about you, whether you are currently in treatment or not? Have you a renewed zest for life, or are you still just too tired? What have you done for yourself since getting sick, that you might not have tried before?

As always, the floor is open!

Also--please join me after the jump for a special announcement.

Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7:30-8:30 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
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Tue Jan 27, 2015 at 05:12 PM PST

Community Quilt for MrsBadger, round 2

by Sara R

Reposted from Sara R by Sara R

Cedwyn's quilt -- it is a big one!

MrsBadger is the widow of badger, a longtime kossack and member of the Monday Night Cancer Club.  Cancer stole him from her side in July and her grief has been bottomless ever since.  We are here tonight to gather the last messages and funds for a community quilt for her, something she can gather around herself to remind her that she has community support, all over this country, something she can cry into, something that will provide her with some rest for her hurting heart.

We are short 3 messages for this quilt.

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