The Business of Hope vs. Lies

[Guest Kamcho]

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[BrokenHeart2]

I'm coming up upon 2 yrs. lost my DH  to lung cancer and I'm fucking angry with the health care system. But it it what it is. What the hell can I do about it now!  I'm just sick about all of it.

Cancer fundraising is total bullshit if you ask me. Lemmings jumping off a cliff. The pharmas won't let it happen too much $$$$$$$ involved.

[Guest littlebirdie]

Yes. I have no faith whatsoever in the cancer industry. All you have to do is read the statistics to know it's a losing battle for almost everyone, but they've spun it into some bullshit message of hope. It's sick.

 

I still want to throw things at the TV whenever a Cancer Treatment Centers of America commercial comes on.

[canadiangirl]

Our oncology team was never about giving hope where there was none, and in DH's case there was none for 3 of the 4.5 years he had.  Different things make me call BS.  For example, the thought that if you DON'T do more treatment, you will necessarily live longer and in more comfort.  The idea that people can choose against treatment and go off to do their bucket lists in the quality time they have left.  It doesn't always work that way.  For one thing, in my DH's case there was the pain.  He HAD to have palliative radiation treatments to treat multiple hot spots.  Those treatments may have accelerated his mets, but they helped him continue to walk, for example.  The other is the assumption that the quality of life is much higher without treatment than with.  In my DH's case, a third round of ultimately useless chemo MAY have shortened his life by accelerating the mets to his organs (maybe, we don't know) but it gave him hope, it made him feel like he was doing something, and his quality of life was already not high.  With respect to a bucket list, he/we could not travel outside Canada because he had no insurance and no right to it in case something catastrophic happened and we could not afford the medical bills if something did.  I am quite concerned about the current movement in cancer circles towards "acceptance" and choosing against intervention because I feel it risks giving leverage to calculations of financial cost-benefit for hospital administrators vs. giving patients a medical chance, however slight.  I wish I could say I trusted the medical profession (and apologies to those in it here) in these calculations but although we had an overall "good" experience, I can't say they always had his interests as a priority and I spent a lot of my time advocating for his rights.  The calculations of a patient who has lived a more "normal" life span vs. someone who is still young may be totally different, and I don't want the non-intervention dialogue to drown out what may be the wishes of the latter.  ((Kamcho)) I hope this gives a different perspective.  I think of you often.

[Carey]

It's sad that there even IS a "cancer industry".  But that's exactly what it's become.  A business. Chad didn't died from cancer but my daddy did. Stage IV lung cancer and those same what if questions plagued me for a long time after he died. There is something to be said for quality time; those choices are so very hard to make because really there is just NO WAY of knowing if chemo will help or hurt and that "what if" will always be there.  CG really had some thought provoking  points.

[Guest Kamcho]

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[Guest Kamcho]

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[Guest Kamcho]

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[Wheelerswife]

As someone who is coping with cancer personally and who has worked in health care for 26 years, I HAVE to keep my hope in the people who are watching after me.  I know that some bright and experienced health care providers don't have the best bedside manner, and perhaps that distance keeps them able to cope daily with the constant stream of loss that happens in medical careers that deal with some of the sickest patients who are living with a death sentence.  I don't know...but somewhere, somehow, I have to believe that there are reasonable explanations behind the behavior of medical professionals that don't necessarily get it right with their patients.  I met a lot of doctors in my career.  Some I liked, and some I didn't.  My own oncologist has gone the distance to develop rapport with me, has listened to my arguments about treatment, has taken my case to the team of sarcoma specialists and discussed my viewpoints with that team, only to have the team agree with my plan.  Some day, it may be this oncologist who has to break the news to me that there are metastases/recurrences.  Right now, she is hopeful.  She's never lied to me.  I know how aggressive my tumor was.  I know the statistics and I understand what the statistics mean (and what they don't mean.)  She has talked with me about how to try to live knowing what I know.  Life is short and unpredictable and I have clearly had enough experience to know that.  I hope I never have to deal with treatment that makes me ill and vulnerable.  If that time comes, I will ask pointed questions and I will advocate for my own interests.  In the mean time, I'm trying to figure out how to live and find meaning in my loss-filled life.

 

Maureen

[Guest Kamcho]

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[canadiangirl]

 

((Kamcho)) (Wheelerswife))  Actually, they did continue to do interventions at my DH's request so I don't feel that there was the financial cost-benefit in his case.  I guess I am a bit critical of the current movement towards non-intervention and acceptance because I am worried it will LEAD to more financial cost benefit with this kind of argument as a (seemingly humane) justification, when as you say the disease is unique to the individual and treatment should be patient-centred. Quite a number of the recent voices in favour of acceptance and non-intervention are doctors.  That fact has pros and cons when it comes to weighing their arguments, not least of all the quality of care they are able to obtain and some socio-economic realities. 

 

I had to do a lot of advocacy for DH but ultimately there were many good people in oncology whom we worked with.  If I develop cancer, I would put lots of faith in them too.  I am grateful that people choose oncology as their specialty - the world needs oncologists.  I would also try to do what Kamcho is doing and be critical and read up, because sadly there are so many patients, I do not know if they always have the time to keep on top of what is available even in their own hospitals.  Doctors are human beings with outside lives too.  I do think they are doing their best but they do make mistakes.  I truly believe that if my DH had had a combination of a "new" kind of radiation after his first round of chemo he would have had more of a fighting chance.  But his supervising (chemo) oncologist was shockingly unaware of the capabilities of that new form of radiation which was being administered in his own hospital. I am not convinced he exhausted every option for a clinical or experimental trial.  I wanted to get a second opinion but my DH trusted this person and was adamantly opposed.  Who knows what I would have the energy for, if I develop cancer. My energy levels are so low and this is just exhaustion and loss, not dealing with cancer on top of that (I believe).  You both have my utter, profound respect and compassion.  I mean it when I say I think of you often.  These are hard questions.  Sending more hugs. 

[Wheelerswife]

My first husband had a rare genetic disease (Spinal Muscular Atrophy) which eventually caused him to have chronic respiratory failure, which set in motion a cascade of critical scenarios when he became acutely sick.  I knew of options for my husband that most critical care physicians and pulmonologists we unaware of, as they pertained to a small segment of the population.  We had recently consulted with a ventilatory management specialist.  Trying to get doctors to communicate with an "ultra-specialist" of sorts was a nightmare.  I was the only one holding onto hope for my husband, when the doctors, nurses and respiratory therapists were telling me to be realistic.  I finally asked to talk to the whole group at once.  They gathered several people together and I told them to stop telling me to be realistic.  I WAS realistic and I knew that a host of things could kill him at any moment, but meanwhile, he was alive and we were going to hold onto hope that he could pull through and I told them what our goals for survival were.  Eventually, I put my foot down and made them airlift him to a hospital out-of-state where this expert practiced.  That physician and his team were able to pull my husband through and we got another 16 months together.  We were in the local large teaching hospital/trauma center's ICU two more times (it is where my husband died) and I got a lot more respect for my fighting spirit once they realized that I actually had valuable input into my husband's management.  As a matter of fact, the doctors didn't want to admit my husband for his last hospitalization because they didn't think he was sick enough.  I insisted...and insisted further that he be put in a step-down ICU bed.  A few hours later, he went critical.  The docs were glad they had "given in" to me.  My husband, after becoming so critically sick again, made the decision to pass on more aggressive care at this point.  He died within a week. 

 

I guess my point is we need to be advocates for ourselves, but we also have to put our care into the hands of fallible people.  It is a tricky balance, and I feel for people who don't have the capacity to advocate, question those in "authority" of sorts, and may be left to the care of those who may not make the best decisions for that individual.

 

Maureen

[RobFTC]

When Michelle was dealing with ovarian cancer, her biggest problem was the docs who wanted to simply measure her pine coffin and be done, instead of helping her to be in the best place she could be.  In the group of four gynecological oncologists we worked with, her doc would simply lay out the data and the options and talk about the best course; he respected her enough to call her Dr. due to her PhD, and very much respected that she could read the medical literature fluently and ask questions to match.  The oldest gyn-onc wrote her off rapidly, which was unpleasant.  The other two were kind of a split in the middle.  The two second opinions we sought were split like that, too.  A young female oncologist at MD Anderson was in the pine coffin camp with a truly lousy bedside manner to match, while a doctor at Memorial Sloan Kettering saw no reason why she could not be in the survival camp, and was very happy to advise on the best courses of action and the order and combinations of therapies.  Nobody ever blew sunshine up her skirt, but the best were glad to work with her to maximize her odds and minimize the side-effects of the chemo.

 

Take care,

Rob T

[ATJ]

((Kamcho))

 

I can so completely understand your frustration and anger with the oncology world and indeed anything related to cancer! My own sense of frustration and anger many times mirrored yours during my husband's horrendous struggle, and especially after his death. Even many years later I am still cynical when I think of the entire experience. Then I saw it once more repeated when I later took care of a friend who had cancer.  UGGHHH!!

 

Touting the business of hope makes me want to give a sarcastic rejoinder and say: "Yeah, you certainly are  SELLING Hope, a.k.a. snake oil,  and reap lucrative rewards!" And yes, I retrospectively also deeply resent those rah, rah cheerleaders in the field, who MUST have known better than that, but peddled their false advertising.

 

While I don't want to throw the entire medical community under the bus, and believe that there are some in that field who truly care and believe in what they are doing, for MANY their elixir of hope is merely a money generating tool, which I find the most deplorable of all when people are fighting for their lives and look for any faint ray of hope.

 

After my experience with my husband, I also second-guessed every decision we ever made, all the research we did, the trials in which we participated, the conventional and non-conventional approaches - all for nothing -  but a steady process of attrition. In fact, I saw many other patients during that time who died from the treatment rather than the original illness.

 

But, lengthy ruminations, can lead to an endless loop of self-doubt, anger and finally become self-destructive. After my husband's death I have pretty much second-guessed every single decision I have made, even those not related to cancer, but widowhood. Doubt and its companion guilt can eat you alive if you allow them.

 

Nothing can be undone, we don't get a do-over, and that's the most confounding and troublesome aspect of it. So, I have slowly been trying to 'let go'. As the widowed we have been given so much "opportunity" and practice in "the art of letting go". It's one piece after another of our broken lives, that we have to relinquish, and often I gave the universe a big screaming "Bleep YOU!!" (Well, the less polite version of it), followed by the "One-finger salute!"

 

Great thinkers and philosophers have expressed variant notions about doubt:

 

"Doubt grows with knowledge." ~~ Johann Wolfgang von Goethe

 

"If you are a real seeker of truth,

It is necessary that at least once in your life

You doubt, as far as possible, all things."

 

~~ Rene Descartes

 

I agree with the above and have always overanalyzed and overthought everything in my life. Sometimes it can be beneficial, but at this point I have found that it has become deleterious to my recovery. How I wish I could live in ignorant bliss and give my brain a rest!!

 

"What other dungeon is so dark as one's own heart.

What jailer so inexorable as one's self?"

 

~~ Nathaniel Hawthorne.

 

Yes, we can indeed become trapped in our own dungeon, yet we also have the key to set us free.

 

We all have by now experienced the true meaning of "life is short" or the more poetic version:

 

"What is life?

It is the flash of a firefly in the night.

It is the breath of a buffalo in the wintertime.

It is the little shadow,

Which runs across the grass and loses itself in the sunset."

 

~~ Native American Saying

 

Recognizing the latter, I am trying to strike a bargain with my cerebral proclivity, by trying to learn to "let go", something that does NOT come natural for me. I have embarked on a new quest for serenity instead.

 

 

 

 

May we all find our own path to serenity and peace!

 

Namaste,

 

ATJ

 

[lolamei]

Oh my god, YES!  I totally hear you.  Along those same lines - I just was at a work conference and keynote speaker mentioned that her husband had a rare form of cancer and then she said she thought his good attitude helped him actually beat the odds and he is in remission.

 

I wanted to leap up and say FUCK YOU!  It has nothing to do with a good attitude.  We had a great attitude and a rare form of cancer killed my husband in a month.  Don't put that bullshit out there for those of us whose "good attitude" wasn't enough.  How about "my husband was REALLY LUCKY"...because that is probably what it was.  The rage that welled up so fast sort of took me by surprise, but it's same reaction I have to the "hope" line....

 

 

[Guest littlebirdie]

Oh my god, YES!  I totally hear you.  Along those same lines - I just was at a work conference and keynote speaker mentioned that her husband had a rare form of cancer and then she said she thought his good attitude helped him actually beat the odds and he is in remission.

 

I wanted to leap up and say FUCK YOU!  It has nothing to do with a good attitude.  We had a great attitude and a rare form of cancer killed my husband in a month.  Don't put that bullshit out there for those of us whose "good attitude" wasn't enough.  How about "my husband was REALLY LUCKY"...because that is probably what it was.  The rage that welled up so fast sort of took me by surprise, but it's same reaction I have to the "hope" line....

 

It can be so infuriating, and those "a good attitude cures cancer" people are the worst.

 

I had a friend of a friend tell me that the reason she beat cancer and Brent didn't is because she had a closer relationship with God than he did and she knew how to pray for specific healing. I know Brent would have been angry about that, since he was a believer, but I just kind of shook my head and said "If you say so."

[patriciad]

My DH had stage IV lung cancer.  It had spread to his bones and brain.  Even with that horrible prognosis, the doctor started talking about treatment that would buy DH maybe a year.  I came right out and asked how long he had-6-9months without treatment, and a year with it.  This doctor had a lot of hope but, then again, I feel that is one characteristic you probably have to have if you are treating people with cancer.  You must believe that someone you treat will be in that 15%(5 year survival).

DH wanted to fight it with all he had.  He was 52 and in pretty good shape.  Had it been me, I would have booked a trip to the islands for one last vacation, and then enjoyed the time I had left with family.  But I supported his decision 100%.

Four months later, he died.  It was probably more from complications related to chemo than the actual cancer.

I guess the perfect doctor would lay the cards on the table(without being asked to) and say what their experience with people in our boat was.  Compassionate and kind guidance.

I think I am asking for a lot

 

Pat

[mikeeh]

I seem to remember hearing or reading someplace that oncologists won't take chemo if they are diagnosed with cancer.  Mabe not as an absolute but a very high percentage like 75% or something like that.

 

What does that tell you about their opinion of chemotherapy?

 

I think the wear and tear of the chemo on my wife's body helped greatly to shorten her life.  The chemo finally stopped because her body couldn't recover enough to be able to take another treatment 

 

I know I always wanted to know as much as possible about what was going on but getting a straight answer from the Dr was almost impossible.  I think there is a very fine line between hope and them avoiding the difficulty of giving a more realistic prognosis. 

[Trying]

There have been amazing advances on certain types of cancer but unfortunately so many that there is little hope for.  For both my husband (whose battle was only 4 months) and my Dad (only 3 months) they needed to hear about the people who beat the odds, they needed to go through chemo so they would have time to adjust to the reality and feel like they were DOING something.  With both of them, I as the caregiver and the one who did all of the research understood the reality sooner, even if I didn't quite accept it.  Funny that both of them never did any research of their own, let me do all of the talking and ask all of the questions.  Self protection I guess.

 

Healthcare in general, not just oncology, only works if you can advocate for yourself or you have someone who will do it for you.  It's a sad reality in the US healthcare system.

 

[Brenda]

I'm fairly certain that aggressive chemo made my wife's last few months pretty miserable.  Long into Stage IV when diagnosed, and I don't think her oncologist had any business whatsoever suggesting that she undergo a course of treatment that almost instantly sucked out what remaining strength and quality of life she had.  Her disease was never curable.  Ever.  Not even under the most fortunate of circumstances would she have lived.

 

But given the shock of the diagnosis and the rush of oh my god we've got to do something that follows, there's very little time (or so it seems) to properly research everything.  The docs were a trusted source of information, and they offered hope.  So she started treatment, and it felt like we were fighting.  Skipping the chemo sounded a lot like giving up, and if there's one thing Big Medicine and Big Pharma have done successfully, it's promulgating the idea (myth) that all cancer patients can be the successful survivor story if they just fight hard enough.

 

My dear wife was bedridden from day one of treatment.  She died a few months later.  Had she gone straight into palliative care, she'd have had at least a few more weeks of good life.  The months she spent living while undergoing chemo were not worth living.  She was miserable.  The girl she once was died the moment the chemo entered her veins.

 

Oncology - at least for those who are beyond repair - is a business.  Expensive "cutting edge" treatments with pathetic results, a miserable focus on extending life rather than extending good life, and drug companies and doctors milking the last few dollars they'll ever see from those particular patients.  Dead bodies don't need medical care, do they?

 

Perhaps my wife's death is still a little fresh in my mind, but I'm still angry sometimes that she spent her last few months in bed rather than taking those last autumn walks with our children or that last trip somewhere she loved.  And I'm angry when I did my research on the chemo she was infused with and seeing the grotesque profits (in the billions of dollars) that the manufacturer was reaping by pushing it.  She was, in retrospect, treated by the system as a sponge to squeeze the last few drops of juice out of before throwing it away.

 

Hospice care was extraordinary though.  The nurses who visited her, who actually gave a fuck what happened to her and how comfortable she was, those girls were absolute angels.  That's the only piece of this mess that gives me any faith that there's still good people out there who actually care and don't go into medicine for purely monetary reasons.

[Guest nonesuch]

I believe that doctors in general do the best they can.

 

I have had doctors with lousy bedside manner who provided good care.  I've had gentle, soft spoken doctors who screwed up a blood draw. Medical professionals cover for one another pretty well, saying things like, "Those things happen from time to time" but I've never since had a nurse miss the vein. Well, maybe one.

 

I, too have heard that a lot of oncologists refuse chemo.  So do regular people.  A friend's mother, when diagnosed with cancer, immediately decided on palliative care.  Her daughter was troubled by this, and saddened by her mother's refusal to fight.  it wasn't the daughter's decision, though. and the mother thought her time had come.  She died some months later. 

 

My mother-in-law was diagnosed with cancer a few weeks after her husband's death.  The oncologist she had told her that the disease would ultimately be terminal.  Her granddaughter was being married in a year.  She and her oncologist worked out a schedule for treatment that would keep her alive and have her feeling as well as possible in April of the following year.  When folks started sending her news of alternative treatments, she informed them she and her doctors had a plan, she trusted them, and additional information wasn't needed.  She lived almost a year after her grad-daughter's wedding.

 

Hubby's lung cancer was Stage III. They knew any treatment was just buying a little time. But the tumor didn't listen to the doctor's prognosis.  It ruptured his artery one afternoon after only one chemo treatment.  He died two weeks after his only chemo treatment.

 

I suspect there is an expectation in this society that  [this action] will produce [that result] and that everything is predictable. Anyone who spent the past winter in the northeast knows that nature is not predictable. It isn't a sentient being that we can reason with or control.  We can *try* to predict what happens, we can *try* to control things, but ultimately, there are things we can't predict or control.

 

 

[Guest nonesuch]

I had a friend of a friend tell me that the reason she beat cancer and Brent didn't is because she had a closer relationship with God than he did and she knew how to pray for specific healing.

 

Really. Huh. I had a co-irker who claimed the reason her brother came back from Vietnam safely was because she and her mother prayed for him.

 

I had no idea. Evidently, every single person who dies doesn't pray properly, and every person who lives does. 

 

So if everyone alive has a direct connection to G-d, how come there's so many sum-bitches around? Should the general population be nicer?

 

Cynical Nonesuch must be ready for bed.

[Guest marian1953]

I read your stories avidly because my bf is a stage 4 mouth cancer survivor.  If he had stayed in Canada, he would be dead. Too old for treatment. Here, he lived. Died twice, was in hospice for 9 months and they sent him home. He is quite impaired from it and the chemo really did a number on his vocal chords and he could choke to death any time on his own saliva. I go to all his appointments with him, talk for him, etc. He was told by the doctors that they wouldn't be able to do chemo again. So I am now an advocate. Many people, some from ywbb thought I was crazy for falling in love with him. Well, me and Patsy Cline. I am lucky to have you guys sharing your stories.

Marian

[BrokenHeart2]

Hugs Marian1953. I love Pasty Clines love songs and I'm only 54.

I'm sorry you are having to go through to this with your Bf. Stay strong Dear Lady.

[MamaZ]

DH had a purely undifferentiated cancer, highly malignant. We could not even say sarcoma or carcinoma to help guide treatment (was stage 4, inoperable). Our primary onc, I am convinced, knew it was hopeless, but hesitated to dash what hope we had. As a vet, I knew this was grim, but had no idea how grim (89 days). The regular onc just made recheck appts every two weeks. Symptoms changed daily. The cancer spread like fire. The onc even with held results, probably dreading telling us.

 

The palliative radiation onc was quick to show us results, even when the primary was not, as we seemed to go for radiation most days. I greatly appreciated his candor.

 

The best though, was the surgeon who obtained the first chest biopsy. I recall him looking VERY sad and simply saying, "this one worries me. It worries me a LOT." That was the most straight up answer that we got.

 

Looking (8 years) it makes sense to me. Each doc was similar to us in age and stage in life. They were likely thinking what if it was them. Thus, each responded to the best his professionalism would allow, all while being scared and sad for us. They were all human.