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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.

 

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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

IMG_2690
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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I'm going to cheat a little bit tonight and refer to a recent essay on cancer language by Susan Gubar, a distinguished feminist literary scholar who has been dealing with advanced ovarian cancer for several years. Gubar has been posting intermittent commentary about her health, her treatments for cancer, and her reflections about it all in the New York Times since September of 2012, and she has become one of my favorite commentators on what it's like to live with a dreaded disease.

Gubar's work is generally funny, thoughtful, and (not surprisingly) academically inclined, which I confess is one of the reasons why I take pleasure in it. Her latest column, "Living with Cancer: Coming to Terms," echoes some of the themes she touched upon in her first post, "Not a Cancer Survivor."

In the earlier essay, she lamented the limited and limiting labels that are offered to people with cancer:

[Surely] there are others (besides the members of my support group) who cringe at adopting such an identity — and for a number of reasons. Does the celebration of the triumphant cancer survivor cast those who died from the disease in the role of victims who somehow failed to attain the requisite resiliency to overcome it? An American propensity to circulate stories of valiant individuals triumphing over great odds must make people coping with recurrent, chronic or terminal illness feel like duds. And even for those patients with cancers that can be cured, claiming to be a survivor might feel dangerous — like a jinx, a sign of the sort of chutzpah or hubris that could bring about dire reprisals from the powers that be.
In the new one, she discusses the odd conventions surrounding being a "survivor," but she also discusses how illogical and unpleasant much of the terminology used in cancerworld can be:
In the topsy-turvy world of cancer, anything “positive” or “advancing” spells trouble. Yet a brain labeled “unremarkable” after an M.R.I. hardly conveys the good news it contains.

Cancer’s most prominent words simply sound horrible to my ear: the mal at the start of malignancy and the hiss at the end of metastasis, as well as the hard-to-pronounce cachexia (loss of body mass) and ascites (buildup of fluids), not to mention such drugs as bevacizumab (Avastin), capecitabine (Xeloda), pemetrexed (Alimta) and trastuzumab (Herceptin). Doesn’t it seem sinister (and confusing) that each has an a.k.a.?

It's definitely worth reading this whole column, as well as her earlier essays if you can.

For our purposes tonight, I'd like to suggest we share some of our own frustrations with cancer terminology. Just as we have come up with our group cheer, "Hooray for nothing!" out of our own sardonic experiences with the weird dissonances of cancer treatment, so too we might expand our collective repertoire if we are willing to disclose the language we have crafted for our own use.

I know that many people label or name the cancer/tumor(s). Do you? Do you have a mental image of it at all? When I was visualizing the lesions I had in my lungs, I thought of them as tangled knots of hair that I needed to separate. I haven't named it, though, since for me that gives it too much credence and emotional reality.

What are your favorite neologisms about neoplasmic conditions? (Here is the only case in which the idea of "newness" is not celebrated, as it is almost everywhere else in American culture.) I'm fond of "scanxiety," which we've used here often, and which Gubar mentions approvingly as well. Do you use others?

As for that unpopular and imprecise term, "survivor," Gubar shares this find:

[I] was delighted to encounter an essay by another friend who encourages linguistic exuberance with respect to this matter of self-definition. In an article composed nine years before her death from metastatic breast cancer, the witty queer theorist Eve Kosofsky Sedgwick recommended acronyms like BBP (Bald Barfing Person) and WAPHMO (Woman About to go Postal at H.M.O.). She then confided that she personally had alternated between PSHIFTY (Person Still Hanging In Fine Thank You) and QIBIFA (Quite Ill, But Inexplicably Fat Anyway) until she settled on “undead.”
I rather like "undead," carrying the cachet of the latest fascination with zombies and vampires, though I have to say I doubt I'll start using it regularly myself. What about you?

No reason not to search for language that fits the reality we experience, when the present vocabulary doesn't do, and "Fuck Cancer," while heartfelt, goes only so far.

The floor is open. Please don't hesitate to talk about anything else you like, too; this is always an Open Thread.

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.
Discuss

Some of you may have noticed that in the past few weeks we've not always included the phrase "Monday Night Cancer Club" in the diary title. No way to tell for sure, of course, but ZenTrainer and I surmise that the regular diaries might get more attention if they're not labeled with "cancer" so clearly. Perhaps that's intimidating? Perhaps the word "club" puts people off? It might not be obvious to new folks that we're not a closed group.

Anyway, it's back today, because this seems to ZT and me to be a good time for a Roll Call. We do this to check in on each other, and to remind ourselves what the past year has brought us. I fervently hope it's been good news for each and all of you, though I do realize the odds are sadly against that result for everyone.

It's personally a good time for me to reflect. I can hardly help it, since this is anniversary season for me: Four years ago tomorrow, I got the cancer diagnosis, and the world turned upside down for me and my family.

Here's my story, in semi-clinical terms, quoted from my diary of 1/13/14:

I was diagnosed with grade 2 endometrial adenocarcinoma three four years ago next week tomorrow, and I had major surgery (hysterectomy and bilateral oopherectomy-salpingectomy) shortly thereafter. During surgery, several pelvic and para-aortic lymph nodes came back malignant, which meant the cancer was at a Stage IIIC2, or just shy of Stage IV. Three weeks post-surgery I started six rounds of chemotherapy (doxorubicin and cisplatin) which caused me to lose my hair, endure a bout of neutropenia, and suffer peripheral neuropathy, but didn't apparently have any effect on the cancer. A CT scan in August of 2011 showed lung mets, a deeply shocking and frightening development. Immediately thereafter I embarked on an exploration of complimentary treatments, including Ayurveda, acupuncture, meditation, visualization, yoga, breathing, meditation, singing, and a variety of dietary changes. All these remedies, along with a hefty dose of Megace, an artificial progesterone, per my oncologist's recommendation, brought me to NED (no evidence of disease) status by June of 2012. In retrospect, that seems like a very quick response. At the time, those nine months seemed like forever. I've remained in remission since, and I hope to remain there for a very, very long time.
In October, 2014 I went off the Megace, having tapered down several months and at least one CT scan earlier. There's still no sign that the beast has returned, and my oncologist thinks at this point the risks outweigh the benefits of staying on it. Besides, coming off of it now may mean it retains some efficacy in case it's needed later. I've tapered off some of my other interventions, too, though I hope to re-establish some of them as well. All summer and fall I was so busy with my household move, I let some things slide. Now that we're pretty settled, it's time to get back to more yoga and meditation, among other health-promoting practices.

I still have chronic cancer-related fatigue. But going off the Megace means my estrogen levels have rebounded a little bit, and that's helped my osteoarthritis a little bit. Or so I hazard. A little estrogen in my system does seem to have all kinds of positive effects, and I hope it isn't enough to fuel a resurgence of the cancer. We shall see.

So, how about you? Anything you care to tell us about your diagnosis, treatments, current state of health would be welcome. (It's fine if you're relating it to your experience as a caregiver, instead. Or too, in some cases.) This is also an Open Thread if you have anything else you'd like to bring up to the group.

Note: MNCC diarists wanted! If you have something cancer-related to write about, please consider posting it from within the MNCC timeslot. We love to share the wealth. ;) Just drop ZenTrainer or me a Kosmail, and we'll get you set up.

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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Thu Jan 15, 2015 at 05:48 PM PST

My wife has cancer

by lightarty

Reposted from lightarty by Ekaterin

We found out just before X-MASS the doctors had found a mass on her pancreas .The doctors did a biopsy and cat scan and confirmed stage 4 pancreatic cancer that has spread to her liver .They told us she has maybe 6 months .Im not sure why im writting this other than I have been apart of D-Kos for along time and have no other place to go to talk about it . We have been married for 25 years and she is my best friend and really my only friend.I can't imagine life with out her and can't imagine moving on with a new life at age 48 .Our days now are spent now in pain or going through procedures that will just cause more pain and with no hope of remission I have a hard time watching her do chemo and other things.If any of you have gone through a similar situation please give me your insights about end of life care for loved ones I would greatly welcome any imput    

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