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When I was first diagnosed with cardiac angiosarcoma in late August 2009, the first thing I did (once I caught my breath and recovered a bit from the lung biopsy that was done on the 28th of August) was to go to the Internet and begin searching for my disease. My research instincts kicked in; I signed up for as many free access medical case history sites as I could, repeatedly keyed in the words "angiosarcoma", "cardiac", "right atrium" and "metastasized angiosarcoma", and found several links that led me to other routes of information that I pursued – whenever my energy levels and attention span allowed.

I recall back in September, Dem in the Heart of Texas wrote this about me...

Don't bother googling her disease - it's depressingly bad news.

Dem was right about this. If you are diagnosed with a critical, often terminal disease, especially a rare one, sometimes all you will find on the intertoobz is just plain ugly bad stuff.

So, that's when you get out the internet rake and start swiping away at the stuff that floats to the top. Dig deeper. Find doctors and specialists who are familiar with your illness. Track down the national website for the disease you have. Veer away from stuff that gets you down in those initial days; go to positive resource sites. Ask your nurses, your doctors. Ask your friends if you can't do it. Ask your pals to get information for you and request that they tailor it to your particular emotional needs at the time. If you have time. If you have days ahead, if you gain some health back, the bad stuff gets easier to deal with.

Seriously, knowledge is power. If not for you, maybe it will be for a family member. Just the idea that you are engaged in your disease and treatment may buoy your friends and family when they discover that you are not going into that proverbial cave to die. You're going in there to Google! Or Bing!

You've never given up before, have you? The information may help them down the line, especially if it's a genetic thing. Maybe, just maybe, becoming your own expert might save your life. The doctors don't really know on an individual-by-individual basis – especially when it's a diagnosis where the sampling of historical cases is extremely low (as in my case).

This gives you insight on how I've always approached things. Find information, track down the best resources and experts and read the heck out of what I find. In the past few months of my treatment and in discussion with several other cancer patients and quite a few transplant recipients (transplants being a particular specialty at the University of Washington Medical Center in Seattle), I've discovered that not everyone – in fact, astoundingly few patients – seek information in the same way as I have, or are as engaged with their doctors and in hospital caregivers as I am.

What I've heard from other patients should have come as no surprise.

Nearly thirty years ago, when my mother was diagnosed with lung cancer, she was so frightened of the diagnosis that the mere learning of more information, even positive results, sent her into a panic. I understood her reaction at the time because I understood the statistics in the early 80's. My oldest sister died of lymphoma in 1973, and three of my mother's sisters, as well as her mother were also deceased from various forms of colorectal and stomach cancers in the years preceding my mother's own diagnosis. The cancer death rate in our family was daunting. The end of days narratives of each family member were painfully woven into the oral history and suspected health predispositions of our family, at least on my maternal side.

Back in those days, I and my brother both researched and wrote to cancer institutes around the country for as much information as we could find. We were the ones who successfully encouraged Mom to get a second opinion. We were the ones who asked the questions of the doctors and made certain we had access to her blood lab results. We acted as patient advocates for our mom and I honestly don't believe she ever lifted a pamphlet or any one of the many articles we tracked down in medical journals at the time that detailed statistics on the prognosis of her disease. Never looked at those hand-written notes we took that covered the post-operative complications that could result. She had us.

Mom was a voracious reader. A businesswoman who would, through anecdotal discussion with friends and professionals and referrals, be her own best advocate and source of information in other areas – whether that might be contractors, plumbers, painters, or home appliances, would fall silent and choked up in the presence of a physician. I saw her many times simply sit in a doctor's office and not ask any of the searching, initial follow-up questions that can be asked of any professional who's going to do work for you.

Questions like....

  • Can you give a referral for specialist who focuses on this disease? I'd like a second opinion.
  • How many cases of this [disease] have you treated in your career?
  • Can your staff help me determine my insurance eligibility for treatment?
  • Will you be able to coordinate all of my care while I'm treatment or do I need to talk with my family doctor?
  • Can you put me in touch with support groups for this disease?
  • What is the short term, long term prognosis of this disease? (Some docs will tell you what they know and they may be uninformed, and some docs may never broach a prognosis with a patient if they are not asked. Always take prognosis discussions with a grain of salt. I'm still here and according to at least two doctors I spoke with in August, I should be dead by now! But it doesn't mean it's not a question that should be asked.)

Those questions above were ones I asked when my own disease was finally diagnosed. I have asked many, many more questions since then. I always ask for copies (CD images) of my scans and I get them. I always ask for hard copy printouts of my lab work. And I get them. I always familiarize myself with new drugs that I'm given and research the side effects. And monitor the chemo bags that go up on the IV pole when I'm in the hospital doing chemo.

"Why?", you ask. I'm a bit of a control freak. It gives me power, emotionally, fleeting and ephemereal. All emotional power is such. It coats the angst and it salves the soul and it gives you reins to grasp when you wake up each morning.

After all, I never have yardwork done without evaluating the quality of the pruning and the edging on the grass. I've never had my brake pads replaced without asking to see the old pads (and rotors if those have been replaced). I'm perfectly willing to follow through with requests and complaints if I don't think something has been done – either enough, or done right. I don't leave it to other people and assume that things are being done right. There may be a time when I will have to, but I'm preparing the healthcare groundwork for others (my kids in this case) to take over if they have to. Perhaps learn from and apply to themselves in the future, should they need to.

I'm the basic pain in the ass. You should be, too.

Sooner or later you will be in the health care system as a patient. Learn ahead of time that you have primacy. You are the primary individual who must become engaged in your own care. No matter how selfless you've been in your life, or how involved in your kids' lives, or your work lives, or your circle of friends, managing your own health is something you need to learn. Doesn't matter how shy you are or how easily intimidated. No one can manage your own body, your own health better than you.

If you are too ill or fatigued to take on your own management – and I understand this well – then pick the most articulate, caring person you know who is willing to go to doctor appointments with you, who is willing to take notes during the appointment for follow-up later, who has the stamina and engagement to act as a filter for you.

If you have no one, contact a patient advocacy organization – there are several in most cities. The Patient Advocate Foundation might also be able to give you a local referral to a reputable advocacy organization or they might be able to assist you in deciphering terminology over the phone.

Some hospitals offer patient advocates; however, advocates for some health care organizations, facilities, and insurance companies may be tied to the risk management department of the facility or of the insurance company. If you go this route, make certain to ask what their mission is and who they report to on oversight of what they do.

Many times patients are simply too blown away to listen to what they've been told. Too defeated, too sick, too overwhelmed by the lingo and the attitudes of the health care professionals around them, and too stressed about all the other life ramifications that a critical illness diagnosis forces on a body.

CURE a cancer news, research and education magazine, cites concerning health literacy statistics in the US, especially in the area of literacy surrounding complex medical information, as reported in the National Assessment of Adult Literacy (2003).

Only a small fraction of adults, 12 percent, is considered to be proficient at understanding complex health information, according to the 2003 National Assessment of Adult Literacy. The survey was the federal government’s first effort to quantify levels of health literacy, the ability of individuals to obtain, process, and understand the concepts and terms crucial to making informed medical decisions. Even people with high levels of education and strong literacy skills can face health literacy challenges, the survey found.

Ask for help, dammit, if you need it. But ask.

I also said this once upon a time:

Fences. Walls. What we keep out, what we try to hold off, what makes us feel secure. What protects us, what imprisons us. Where is the line?

The wall you should try not to erect, the wall that does not make you secure, the wall that will imprison you inevitably, emotionally, is the wall you might build as emotional protection from bad news.

Open up the walls between you and your doctor. Let them know you are involved. Become informed – it's the best armor out there, no matter what the diagnosis.

Resource links, direct and indirect:

Originally posted to Daily Kos on Sun Jan 17, 2010 at 03:00 PM PST.

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Comment Preferences

  •  Brilliant (47+ / 0-)

    And yes, yes, yes, to this.

    I always ask for copies (CD images) of my scans and I get them. I always ask for hard copy printouts of my lab work. And I get them. I always familiarize myself with new drugs that I'm given and research the side effects. And monitor the chemo bags that go up on the IV pole when I'm in the hospital doing chemo.

    Those who hear not the music-think the dancers mad

    by Eiron on Sun Jan 17, 2010 at 03:03:48 PM PST

  •  Thanks for your tale of bravery (33+ / 0-)

    reaching out to others - a rare gift.  Blessings to you.

    Torture: An act... specifically intended to inflict severe physical or mental pain or suffering upon another person within his custody or physical control.

    by MsGrin on Sun Jan 17, 2010 at 03:04:52 PM PST

  •  I can't tell you how annoyed... (29+ / 0-)

    ...the lead doctor and administrator at my primary health care facility was that I had researched my health situation as I had understood it from both talking to and eavesdropping on the doctors in the hospital.

    When asking her questions about paraesophageal hernia through email, her response was

    With our detailed imaging available now there are often "incidental findings" - which means something is seen for which we were not looking and you have no symptoms, will probably never have symptoms, but seems alarming.

    You could discuss it with Dr. Alli if you go for a follow up visit there, but I think it is actually best ignored.

    In her view, apparently, having my stomach trying to share space with my left lung is not a problem.

    •  I suffered for 30 years with (7+ / 0-)

      a severe hiatal hernia. Docs always said surgery to correct hernia was serious. The pain was sometimes unbearable, crippled me right over, slept in a recliner, could never eat a full meal without pain. I ate Rolaids like M&Ms. Mylanta was like milk. GERD and an ulcerated esophagus and a Gallstone attack finally convinced a surgeon to operate. I explained all my problems and he said he'd see what he could do. After surgery he said that he had fixed things. It has been like night and day. No more Rolaids, no pain after eating, ulcer cleared up, no night time wake ups with burning in my throat, quality of life....great. Five 1 inch incisions and that was it. Keep an eye on it.

      On a side note: Was never able to thank the Surgeon,  as a week after my gall bladder removal and hernia repair, he left the country to supposedly visit his family in Iran. Never returned. Seems he was under investigation by the Feds for severe Medicare fraud. His spouse did the billing and she fled with him. His surgical nurse and office assistants were left in the lurch. A crook but one hell of a good surgeon as per the operating room nurses.

      Amazing the Time I waste Here! Sometimes it's not wasted though!

      by raster44 on Sun Jan 17, 2010 at 08:22:00 PM PST

      [ Parent ]

    •  Actually, as a physician (26+ / 0-)

      I would rather have an informed patient who does what is best for themselves. Of course, I hope to build trust with my patients. It is hard to help someone who doesn't believe what you are saying. I always try to listen to my patients and, hopefully, learn from them. They usually know something about themselves or their condition that I am not aware of. I know it sounds trite, but listening to people is harder than ever in today's health care environment. I am lucky to work in an outpatient practice that gives me some leeway and some time with my patients.

      An eye for an eye and the whole world will be blind.

      by rini6 on Sun Jan 17, 2010 at 03:56:58 PM PST

      [ Parent ]

      •  Great attitude! (10+ / 0-)

        You, apparently, do not have a Hummer-sized ego.

        Every so often, I have encountered a doctor who really doesn't want me researching my own condition.  I find it puzzling.  Wouldn't you want your patients to work with you??

        "Life is short, drink the good wine!" - OQ

        by OtterQueen on Sun Jan 17, 2010 at 04:22:51 PM PST

        [ Parent ]

        •  It depends... (6+ / 0-)

          (Doesn't almost everything "depend..."?)

          Wouldn't you want your patients to work with you??

          In the case of a cardiac angiosarcoma, a patient who has googled it is a lot more up to date than I am.  I'm a doctor; I've been in practice, partly subspecialized in cardiology, for 30 years, and I've never seen a 'heart cancer' in the sense of a malignancy that actually started in the heart.  The only tumor arising in the heart common enough to get significant mention in cardiology training programs is a left atrial myxoma -- a histologically benign but still plenty dangerous, and also interesting, tumor.  I'd appreciate a pointer to some good review articles if I ever got a patient with a cardiac angiosarcoma.

          On the other hand, I wouldn't particularly enjoy trying to reassure the annoyed commenter above who wanted to know about a paraesophageal hernia.  I think that's another term for hiatus hernia or esophageal hernia.  Hiatus hernias are as common as McDonalds.  I think at least half the population over fifty years old has one.  I probably have one myself, but I wouldn't lift a finger to find out.  My grandmother had one that took up as much chest space as her heart.  It was a mild to moderate bother to her.  She lived to 97 and didn't die of anything related to the hernia.  

          In the old days of the 'upper GI series' done with flouroscopy, they realized that there were a lot of people on whom you only sometimes might demonstrate a small hiatal hernia when you had them bear down.  (Back then people would get two upper GI series about six weeks apart if the first one showed a stomach ulcer.  On some folks you could get some of the stomach to herniate into the chest on just one study even if you tried both times.)  So it's a common finding, but it can come and go.

          I've only seen a few people have any operation for a hiatus hernia, and the results are something of a crapshoot.  If you're absolutely miserable with reflux symptoms, it might be worth it to 'roll the dice' with an operation.  Some people get good results, some get so-so, and some get no help or maybe even get worse.  If you're 100% miserable, maybe it's worth getting an operation for which the results seem to be "pot luck".  But it's a pretty big operation.  These days, most people's symptoms improve with long term (maybe lifelong) treatment with H2 blockers (like Tagamet) or PPI's (like Prilosec and Protonix and Nexium).  

          It also helps to elevate the head of your bed by putting a brick under each leg at the head of the bed.  (Propping up with pillows gets your head as high, but it folds you in the middle, which often negates the benefit.)  But when I suggest that to people, they think I'm crazy, or that I'm blowing off their complaints.  They rarely do it.  Once I was at that same grandmother's apartment, and I realized I could get a similar effect on her bed by putting a little footstool under a bar that ran between the two legs at the head of the bed.  I did it.  I got maybe half as much tilt as a pair of bricks would have given.  She said it helped.  She wasn't strong enough to lift the bed to take out the footstool, but one day she had a delivery man do it for her.  "Raise the head of your bed," is a piece of advice I couldn't even get my own grandmother to follow.

          --------------------------
          That may be the long version of what the annoyed patient's doctor e-mailed.  

          The much shorter version might be, "It's a non-disease, but if you complain about it to enough doctors you might find one who'll operate on it and make it worse."  I don't know a polite way to say that in one sentence.

          We're all pretty strange one way or another; some of us just hide it better. "Normal" is a dryer setting.

          by david78209 on Sun Jan 17, 2010 at 05:58:35 PM PST

          [ Parent ]

        •  That was what was so wonderful (7+ / 0-)

          about my ex-husband's doctor.

          He was open to any ideas, and respectful enough to know I could judge complex information.

          Only 7 people in the States had ever had this diagnosis, and none had survived, so he was open to all ideas.

          However, he had the specialist knowledge to take the good from what I had learned, disregard the bad, and turn it into a successful treatment.

    •  I had my annual checkup on Friday with my very (10+ / 0-)

      trusted primary care doctor, actually she is a nurse practitioner but worls in a group with specialist so basically oen ags the whole expertise avaialbe if needed.

      She knows I hate taking drugs and we have discussed the question of chlorsetreeol levels every year and so far I refuse.

      When she brought up the chocie again I said I was very stubborn and she laughed and said 'Stubborn people live longer'.

      However, I may be stubborn but not stupid, so I am having the bloodwork to done this year to check what it is now after things i have done this year to get it down. But I have also made another appointment with a doctor of oriental medicine, who my son and family see, to have blood work  done and evaluate my choicies for this last phase of my life.

      I intend to live out my life on my own terms as I always have done, but am sensible enough to know that there are  choices and alternative methods of treatment.  Especially if one is basically healthy and wish to stay that way but not give up the things that make life worth living.  I'm not a rabbit and like my butter and cheese and red red wine!!!!

      •  I really apologise for garbled content. I don't (8+ / 0-)

        know what is happening, because altho I don't have spell check capacity in the Netscape browser, i do check for typos. My keyboard seems to be packing up and when it posts it has errors i swear I checked against and changed. I apologise.

        I'm in the process of considering some serious technological upgrades to my own capabilites, plus equipment.

        I write this because i think sharing information about how older people face their own responsibility for their health issues is very important. I am 76, going on 77.

        I am aware that in the last few years we, as a group are using more than a fair share of the health care dollar and I consider older people need to take full responsibility for the treatment they accept and agree to plus taking full responsibility for end of life issues aand making out living wills, giving power of attorney to trusted family members. We will ALL face death, face it while you are living.

        •  PS: I've also made an appointment to see a (7+ / 0-)

          medical eye doctor. Got to stop buying my glasses at the pharmacy!!!!

          •  get with eye associates of NM (3+ / 0-)
            Recommended by:
            ladybug53, exmearden, soccergrandmom

            grammy. I don't know if they have a Taos office, but there is one in 'spanola. My 64 yr old eyes are like totally pleased with their care.

            don't always believe what you think...

            by claude on Sun Jan 17, 2010 at 05:55:04 PM PST

            [ Parent ]

            •  OK. I've made an appointment with the doctor (3+ / 0-)
              Recommended by:
              claude, Sylv, ladybug53

              associated with my primary care group. I'll check out your suggestion. If I am one thing, I am one hell of a a good researcher. Mine only started to fade a year or so ago, and I am mostlly concerned ewith maintaining  my drivers license. As far as i am concerned my eye sight is totally normal for my age.

              However recently i read a report regarding the normal condition of those on the road with 75 year old eyesight and realised that I probably need to take into consideration that half the people on the road can't see me coming!!!  LOL

              I feel some changes coming on!! PS: I'm a fairly defensive driver anyway in New Mexico!!!!

              I had a fascinating experience the other day. Went to see 'AVATAR' in 3D, and aftr the trailers of total disorientation found that at  a few minutes into the movie my eyesight had ajusted to total clarity in dimensional viewing. Need to think that through.

        •  soccergrandmom, I think you're terrific by (3+ / 0-)
          Recommended by:
          Sylv, sberel, soccergrandmom

          engaging in this blog and keeping up with the youngfolk.  I hope to be alive and useful too for as long as possible.

      •  soccergrandmom, add EVOO to your list ... (3+ / 0-)
        Recommended by:
        sberel, exmearden, soccergrandmom

        and you'll live to be a soccergreat-grandmom! Extra-Virgin Olive Oil. Indeed, informed & engaged patients live longer.  "Live long and prosper!"

        •  the night before last, my beloved daughter in law (5+ / 0-)
          Recommended by:
          Sylv, ladybug53, exmearden, cerulean, Aidos

          grandmother died aged 92. I am now the oldest, the matriarch I guess. There's just me in the 'older generation', a co-grandmadre and one grandpa (my sons father) and my former husband)!!!  I have four grand children, 34, 13, 10 and 7, from various sources and in various familial units!!!!

          So I've got to stay alive for a long while yet. I have promised my oldest, first born grandson, I shall attend his graduation at least.

          My basic problem/salvation is that I don't believe in moderation in anything. I am one of those natural born over the top people!!!!  A rebel with a zillion causes.

  •  Hi Exme! (29+ / 0-)

    This is an excellent diary, full of good advice.  My mother died of breast cancer in 1998 and she was our "teacher" when it came to my father's heart surgery in 2005. My sister and I were at his side constantly when he was heavily medicated because we knew he had to have someone who was his advocate because he could not advocate for himself in his condition. Our family rule is if you can squeak very loudly while you're in the hospital, then it is ok for family/caregivers to go grab a breakfast/lunch/dinner and make calls to family & friends. Otherwise it's all hands on deck.  
    Your bravery and excellent writing are an inspiration for all - and this post very educational.  Thanks, and keep hanging in there.  We love you, sweetie.  XO

    Think what you are doing today. -Fred Rogers

    by JanL on Sun Jan 17, 2010 at 03:12:12 PM PST

  •  I couldn't have said it better. (16+ / 0-)

    Get in front of your disease. You won't be nearly as frightened if you feel you have some control. Also, get a hold of the financial aspects so can feel some control there, too. Sooner or later, we will all be needing this advice. Thanks for the diary.

    "It does not require many words to speak the truth." -- Chief Joseph, native American leader (1840-1904)

    by highfive on Sun Jan 17, 2010 at 03:18:25 PM PST

  •  You Are (21+ / 0-)

    one very amazing person.

    you cant fool all of the people all of the time unless they watch fox news

    by eeff on Sun Jan 17, 2010 at 03:20:56 PM PST

  •  Being your own advocate is important, or (22+ / 0-)

    having someone close act as one.

    A friend of the family has been battling leukemia for over 20 years: he's nearly 90 now, and is very aggressive about finding out all he can, trying different treatments. He is quite well off, so what works for him is not going to work the same way for others.

    'The work goes on, the cause endures.'

    by shpilk on Sun Jan 17, 2010 at 03:21:39 PM PST

  •  Not always what you think (12+ / 0-)

    When our elders began to have problems, my brother and I as control freaks tried to predict and prepare, but it never was what we thought.  There is no one like you and you may not do what the pundits say.  Thanks for this sharing.

  •  Do whatever works for you. (11+ / 0-)

    For some things I want to know everything possible, for others I want to stick my head in the sand and leave it all to the experts.

    P.S. Is there ever a time when Daily Kos could/should put everything 'on hold' until we have done the maximum possible to prevent a bad Republican from getting elected?

    Shouldn't we all be phonebanking from home for Coakley for MA-Sen?

    I just donated an extra $76 because I failed to do phone-banking today.

    Media Reform Action Link http://stopbigmedia.com/

    by LNK on Sun Jan 17, 2010 at 03:22:18 PM PST

  •  Well done and beautifully said. (17+ / 0-)

    I have seen the processes and steps you recommend work over and over again.  I saw it work with a friend diagnosed with ovarian cancer; I used it as well when given a "pre-diabetes" diagnosis over 12 years ago.  I created my own three-ring binder of information from the American Diabetes website and from the NIH.  It became my personal handbook on how I was going to handle this disease.  My clinic gave me nothing--not even a brochure about diabetes.  Knowledge is power.  Thank you for putting these actions out there--it can make a world of difference in how individuals cope with and manage a diagnosis.  And you've pointed out the emotional difficulties in handling information--it's good to be aware of what we can each handle at a given time and when it's better to wait.  

    You can have wealth concentrated in the hands of a few, or democracy, but you cannot have both. ~ Louis Brandeis

    by 3goldens on Sun Jan 17, 2010 at 03:25:59 PM PST

  •  Thank you so much for this diary. (20+ / 0-)

    You are amazing.  

    When I was diagnosed with breast cancer 13 years ago, the terror was just palpable.  My first inclination was to roll up in a fetal position and try to ignore the bad news.  My mom was my best advocate and went to all doctor appointments and chemo treatments with me.  She took notes at the surgeon's office - actually recorded him - and held my hand as the drugs dripped.  Armed with the strength she imparted to me, I got on the web and researched tirelessly.  What a difference empowerment makes in managing a tough diagnosis.  

    I also had some really good friends who always made a point of looking in on me, whether I wanted company or not, and helped to keep my sense of humor.  Somehow, I managed to complete law school through this, which everyone thought was I'd quit.  In fact, it was a lifeline for me.  

    Thanks again for this very important diary.

  •  Kick Ass Diary (15+ / 0-)

    A real keeper for sure. Absolutely correct on every point.  One of the commonest screwups to look out for is an IV "infiltration" when the needle is not properly inserted into the vein. Very, very important when the patient is unable to fend for themselves post Op or whatever.

    Watch for SWELLING at the insertion site. Happens all the time.

    This is wonderful diary everyone of us can use.

    You can't always tell the truth because you don't always know the truth - but you can always be honest.

    by mattman on Sun Jan 17, 2010 at 03:33:21 PM PST

  •  Funny you should write this... (27+ / 0-)

    I was born with spina bifida and hydrocephalus. When I was fifteen I had surgery for scoliosis which was progressing extremely rapidly. The doctors told me that without surgery I would crush my organs in my sleep, suffocate and die one random night.

    So this spine specialist performed the scoliosis surgery. He'd been doing it for twenty years. He paralyzed me - and I was the first person he'd ever paralyzed.

    What I'm getting at is medical research is an important part of my daily life. I'm glad you wrote this. I mean despite all of that I just wrote, I drive a hand controlled truck. I'm 25 and I've lived on my own since I was nineteen. I'm not gonna say I'm lucky or that being a cripple is a worthwhile endeavor you should all work to achieve - but things are survivable.

    "Everybody lies... except POLITICIANS? House, I do believe you are a romantic."

    by indiemcemopants on Sun Jan 17, 2010 at 03:33:31 PM PST

  •  I'm the kind that likes to respond (25+ / 0-)

    to comments, as some of you may have noticed. But today, I'm a bit in recovery from low blood cell count, so will be snoozing off and on while you read.

    I'll get to those I can.

    Thanks all.

    "We are one, after all, you and I, together we suffer, together exist, and forever will recreate each other."
    Teilhard de Chardin

    by exmearden on Sun Jan 17, 2010 at 03:35:00 PM PST

  •  Wonderful article. You conveyed an important (7+ / 0-)

    truth my family learned when my dad was diagnosed with mesothelioma.  When confronting a difficult or even terminal illness, information can be frightening -- but also empowering.

    Thank you for sharing your insight so beautifully.

    Political liberal / Bible believing Christian / Lousy at litmus tests

    by VirginiaJeff on Sun Jan 17, 2010 at 03:38:58 PM PST

  •  Thank you (5+ / 0-)
    Recommended by:
    Sylv, sberel, 3goldens, ladybug53, MsGrin

    for a well-written and informative article.  I have copied some of the links and sent them to my sister's husband so he can use them as my sister's health advocate.

  •  Thank you, ExMe - your mom (6+ / 0-)

    reminded me so much of my own. A wonderful, tough business woman who just folded in front of cancer and 'specialists'. I think it was a generational thing for her: don't question authority. That, despite the obvious fact that my dad died because the authorities were wrong.

    My thoughts are with you.

  •  Not only should (7+ / 0-)

    one do this for terminal diseases, but for any illness that lasts longer than the common cold.
    I have Rheumatoid Arthritis and all of the lovely things that go with it. Education has been my life's work. My Rhuematologist knows she can discuss details of my illness with me and I will research it until I understand it. That is the only way to ask those intellegent questions; knowledge is power in many forms!

    -9.75, -7.49 "He that will not reason is a bigot - He that cannot reason is a fool - He that dares not reason is a slave." Sir William Drummond 1585-1649

    by zamrzla on Sun Jan 17, 2010 at 03:43:43 PM PST

  •  They thought it might be cancer, (14+ / 0-)

    but it turns out it was not...but it taught me well, that learning experience.

    Armed with information that I ferreted out myself, I left behind a recalcitrant doctor and found one who had more experience in what I was facing.  Even then, the new doctor, relied too heavily on the previous doctors reports and I had to ask him to discount those reports and look at me with an un-biased eye. I'm sure he though me rude, but, you ARE your best advocate.  It all worked out and I am fine, glad to say.

    I always ask for copies (CD images) of my scans and I get them. I always ask for hard copy printouts of my lab work. And I get them. I always familiarize myself with new drugs that I'm given and research the side effects.

    I cannot stress the above enough for even non life threatening conditions that may be faced.  It is a timesaver extraordinaire to have all the labs, pictures and reports of whatever you have had done when you walk into a specialists office.  I've been hounding my friends to always get the reports and one friend is working toward all of us having three ring binders :-)

    It's easier to sleep at night if you are doing all you can do...you may not sleep perfectly, but you will sleep better.

    exmearden, I wish you the very best and I thank you for this diary.

    Blessed are the bewildered, for they won't notice.

    by trinityfly on Sun Jan 17, 2010 at 03:45:31 PM PST

  •  thank you (10+ / 0-)

    for this diary; I am forwarding it to a friend who received a malignant cancer diagnosis last week....

  •  Simple but important: keep a notebook handy. (18+ / 0-)

    I fell into the advocate role for my husband after his  accident, and learned a lot of things during the course of his treatment that will help a lot if I ever end up as the patient someday.  (and face it, most of us will.)

    The thing that helped more than anything was just having someplace to jot down questions as they came up, so that we wouldn't have to struggle to remember all the things to ask the doc during those few minutes we had each day.  What does this new med do?  Is it normal for this to look this way?  Is it possible for me to do this, or do we have to ask a nurse?  

    I had a file folder that I kept all of the insurance and hospital documents in, and I wrote the phone numbers for all of the important contacts on the front of the folder - doctors and their offices, insurance contacts (actual people with their extension #s) - stuff like that.  The paperwork can get overwhelming quickly, so it's important to get it organized from the start.  Lab orders should get their own folder of a different (bold!) color so you can find them quickly.

    They only call it Class War when we fight back.

    by lineatus on Sun Jan 17, 2010 at 03:46:50 PM PST

  •  nicely said (17+ / 0-)

    My heart is with you as you walk this difficult path.

    I am myself being treated for breast cancer and each daunting visit to another doctor, another set of tests, another lecture by the genetic counselor, another surgery, and waiting - always the waiting. It is all so mind boggling when you are physically tired and emotionally overwhelmed. But I too am reassured by MORE information rather than less.

    So in my mind, yours is good advice - all of it.

    I would add only one thing.

    The most difficult thing I ever have to do is to admit that I can't doing something myself or that I need help of any kind.

    But - especially in this last round of surgery - I found that when I did, it came in spades.

    Not just visitors, calls and cards either.

    My apartment is on the 3rd floor (no elevator) and I could not manage the stairs for about 10 days. So the apartment complex management where I live gave me the use of their 1st floor, fully furnished, luxury model unit for as long as I needed it. As long as I needed it. Free.

    I had to ask someone to help me with wound drains and getting in the shower, getting dressed, putting on my shoes, rides to doctors' appointments; I had (spectacular) meals prepared, had someone to walk the dog for me and on and on and on.

    But I had to let my needs be known. And I often had to be very specific.

    Even if I hate to ask, people LOVE to help.

    So when I read your words,

    Fences. Walls. What we keep out, what we try to hold off, what makes us feel secure. What protects us, what imprisons us.

    I recognized that I was the maker of my own prison, and could just as easily set myself free.

    If you find yourself in similar straits, please please please ask for the help - and the hugs - that you need.

    •  I am now no longer afraid of asking for help. (14+ / 0-)

      I was always the doer before,for everyone else. But comes a time.

      Yes. And those requests can be harder than anything else you must do. But it's critical to ask when you need it.

      The hardest thing for me right now is responding to email and making calls back to people. Something about verbalizing (and when I write to someone personally, it's a form of verbalizing to me) is exhausting more than any other thing. Doesn't mean I love those folks any less. Just conserving, reserving, until I have more battery power.

      Hard to explain that.

      "We are one, after all, you and I, together we suffer, together exist, and forever will recreate each other."
      Teilhard de Chardin

      by exmearden on Sun Jan 17, 2010 at 03:53:45 PM PST

      [ Parent ]

      •  Sent you an e-mail before I saw this. (3+ / 0-)
        Recommended by:
        sberel, exmearden, trashablanca

        Reply (or don't) if and whenever you want to.  Please don't feel obligated, we all understand.

        =)

        "Life is short, drink the good wine!" - OQ

        by OtterQueen on Sun Jan 17, 2010 at 04:52:22 PM PST

        [ Parent ]

        •  no worries... (6+ / 0-)

          I'll get to it and reply more directly shortly. But I'll comment on one thing you mention.

          I love to cook and before I went into this last hospital chemo cycle (jan 6 - jan 11), I spent the previous Saturday baking up two kinds of lasagna - veggie and meat, kotleti (kinda like Swedish meatballs, at least as I make 'em) in both beef and turkey version, a large tray of my homemade macaroni and cheese (to die for, er...), and my kids' favorite mushroom chicken and rice (lotsa garlic, dashes of curry, soy and white wine, with mushroom soup as base). I made several large foil trays of this stuff, thinking it would last until I got out.

          Wrong. It didn't even last until Tuesday, the day before I went in to hospital.

          So now I'm planning the next long term menu for next week. I'll attack it as soon as this pesky nausea goes away.

          I, too, believe that cooking heals...;)

          "We are one, after all, you and I, together we suffer, together exist, and forever will recreate each other."
          Teilhard de Chardin

          by exmearden on Sun Jan 17, 2010 at 06:04:51 PM PST

          [ Parent ]

          •  Silly, silly exmearden (4+ / 0-)
            Recommended by:
            Sylv, ladybug53, exmearden, trashablanca

            You made good food and you thought it would last?

            Let me know when you want that ham.  btw, Honey Baked Ham bones make fantastic split pea soup or refried beans.

            =)

            "Life is short, drink the good wine!" - OQ

            by OtterQueen on Sun Jan 17, 2010 at 06:09:36 PM PST

            [ Parent ]

            •  hah! (6+ / 0-)

              Reminds me of the attempt I made to get the kids to break apart the turkey carcass after Thanksgiving. I try to make turkey soup the day after (you know, barley, wild rice, carrots, small bits of rutabaga, potatos, bits of ham, parsley, rosemary, a dash of sage, pepper, etc.).

              "Gross!" was what I got. Sigh. Another carcass in the garbage, because I had no energy that night or the next day. In fact I wiped myself out so much cooking that I needed a two unit blood transfusion on the Sunday after Thanksgiving.

              But, damn, those turkey sandwich leftovers are critical to one's survival!

              "We are one, after all, you and I, together we suffer, together exist, and forever will recreate each other."
              Teilhard de Chardin

              by exmearden on Sun Jan 17, 2010 at 06:42:40 PM PST

              [ Parent ]

      •  I have the same problem (3+ / 0-)
        Recommended by:
        Sylv, exmearden, trashablanca

        I can't handle face book even though there are people I dearly love there.  I never make phone calls and half the time I don't pick up call when they come.  It is strange, I am not depressed it is just very hard to communicate with people outside my small little world.

      •  You may already know about (2+ / 0-)
        Recommended by:
        Sylv, ladybug53

        Lotsa Helping Hands. if not, it's worth looking at. And it's a free web service.

        It's private; you decide who has access. It has an email notification function so that your news updates are broadcast to your designated support group. And it has a calendar function that allows your support group to organize their assistance without any need for you to be involved with those logistics. (Cooking trays of lasagna, for example.)

        You can designate an assistant to handle most of the website input for you.

        I'm involved with a support group for men whose wives have cancer; a lot of them have made use of it.

        Wishing you all best, jam today, and joy in the morning.

        N.B.-- Ginger cookies, candied ginger, and other ginger stuff can be a help with some mild nausea reactions.  

        What is the "Why?"?

        by BardoOne on Sun Jan 17, 2010 at 09:10:45 PM PST

        [ Parent ]

  •  Another thing to remember. (11+ / 0-)

    No matter how intimidating a doctor is, how condescending or arrogant, YOU are THEIR employer and have the right to challenge their attitude, and if needed, to fire them.

    When I first went to the transplant center to be tested for a kidney, the doctor who saw me treated me as though I was an idiot. He wouldn't look up at me, barely answered my questions and was just plain rude.

    I stepped out into the waiting room to cool down, then requested a meeting with him. His attitude was no better and I informed him, and the director of the center, that he was in no way, shape or form, allowed to treat me. I never had to deal with him again.

    "As we must account for every idle word, so must we account for every idle silence." Benjamin Franklin

    by FLRealist on Sun Jan 17, 2010 at 03:50:57 PM PST

  •  Generally excellent advice, says this doctor. (12+ / 0-)

    I completely agree that it's in your best interest to be your own advocate, and to find out everything you can about your illness. And there's nothing wrong with being assertive; you're likely to get better care if your medical and nursing team know you're paying attention. It makes our job easier. Most of us are delighted when patients want to be full partners in their care, and when you want to be informed about everything. I welcome challenging questions; if I don't know the answer, I will find it out.

    My only caution would be to understand that there is a fine line between being assertive and being...well, difficult. Docs and nurses are only human. If you accuse your caregivers of bad faith or loudly threaten litigation, it may actually harm your care, because nurses and docs just can't get away from you fast enough. You'll get care "by the book"; you may even get more scans and tests, which is not necessarily a plus. But you're less likely to see people bending over backwards for you.

    •  Good for you. (10+ / 0-)

      My mom's doctor is great, and one of the many reasons I say that is because he really likes the fact that I want to know everything because he knows that I will then stay on top of things.  And guess what?  The patient benefits! Duh.

      Sadly, however, your (and his) attitude is not always the norm.

    •  well said (11+ / 0-)

      as a lawyer, I am OFTEN tempted to toss my title around but have learned the hard way that it is generally does more harm than good.

      I do find my docs appreciate when I come with informed, intelligent questions and LISTEN to their answers. Even if I challenge their positions a bit (I am being seen at a large teaching university medical center) they seem to like it.

      On the "be assertive" front however, I can't stress enough the old saw, "you'll get more flies with honey than with vinegar."  There's no real call to be unpleasant - even when we are tired, emotional and even flat out sick and frightened. But it happens. On one occasion I had a downright meltdown in the middle of the dr.'s office. Fortunately, I was able to pull myself together enough before I left the office to be able to apologize to the doc and all his staff.  And they get it. They were very forgiving in fact. We are stressed. But so are they.

      But finally, and I can't stress THIS point enough:

      If you are at all uncertain, uncomfortable or have any doubts at all get a second opinion. It happens all the time. It's your right and it is often expected.

      •  Thank you. A little anecdote... (4+ / 0-)
        Recommended by:
        Sylv, sardonyx, sberel, ladybug53

        Nearly twenty years ago in my little town I was called to the emergency room to care for a young college student who got himself liquored up and coke'd up before downhill skiing at the local slopes. He crashed into one of the pylons for the ski lift and suffered multiple injuries, painful but not life-threatening, and had to be hospitalized for a couple of days. Our orthopod had to pin a hand fracture, and he broke a bunch of ribs. He was remarkably rude and offensive. He actually groped several nurses. This did not endear him to the nursing staff, and surely didn't improve the quality of his care. The poor nurses couldn't get out of his room fast enough.

        His second hospital day, I got a phone call from his father in New York City. Dad, turns out, is a high-powered malpractice attorney. "You understand? I eat guys like you for lunch. You take good care of my boy". Thank you so much for calling sir; we were planning on just pitching him out into the snow, but now...

        Honestly, I don't understand how this guy could think that making veiled threats would improve his son's care. It took all the self-discipline I could muster to prevent it from angering me and clouding my judgment. And to resist the temptation (this was pre-HIPAA) to send him a copy of his son's drug testing. Just, FYI.

    •  perhaps (9+ / 0-)

      I should have stated it better...I'm a diplomatic pain in the ass.

      Completely understood that many patients aren't merely assertive, but...difficult.

      That doesn't help anyone. I would suggest that those difficult patients might be separated into a couple of groups:

      • Those patients who are fearful and cannot synthesize or process the information they are getting, and so, are aggressive because that is their only defense. Such patients (and family and friends) may be assisted with suggestions from the doctor that they engage an informed patient advocate. Additionally, the doctor might use the "teach-back" approach with them once the communication has been made, to discern whether or not they can comprehend the terms, the lingo, the diagnosis, etc. The CURE magazine article linked in the story covers this teach-back approach.
      • Those patients who are simply aggressive and belligerent, because that is how they deal with all sh*t, not just scary medical issues. Those are inevitably the patients (and family and friends) who will miss out the most when they need the most help. Not much you can do with these, other than give some mediation assistance. Beyond that, they will be on their own.

      Of course, sometimes the doctor-patient match-up, as in all relationships, is not going to work. Each player has a responsibility in recognizing this and taking the steps to either improve, or change, their partners in healthcare.

      As a doctor, you know this. But it's not apparent to a lot of patients, I suspect.

      "We are one, after all, you and I, together we suffer, together exist, and forever will recreate each other."
      Teilhard de Chardin

      by exmearden on Sun Jan 17, 2010 at 04:06:35 PM PST

      [ Parent ]

      •  Quite so. And sometimes... (4+ / 0-)
        Recommended by:
        Sylv, Chinton, ladybug53, exmearden

        really good people just need to vent a little.

        Over many years in practice I've unfortunately had the opportunity to give really bad news to a lot of people. I am perpetually astonished by how gracious and calm many people are at such times. I can't tell you how many times patients have expressed their concern for me, that I must have a hard time giving them such news!

        But many times, folks who are intensely stressed just have to lash out. The existential anger is completely understandable, and we're often the closest target. I've learned to let folks batter me verbally until they've decompressed. Then we can start talking for real.

  •  I've had to advocate for both of my parents (8+ / 0-)

    far too many times.  The thing that perhaps annoys me the most, besides hospitals in general, is that because I am educated and articulate (my lack of typing skills notwithstanding) I can push back at medical personnel whenever necessary (and there are many wonderful medical personnel out there).  But what about those whose native language is not English?  Or who are not well educated?  Or who are undocumented?  I have yet to find a hospital advocate who was not a complete joke, so I continuously fear that people who do not have my/our skill sets and demographic favorability ratings, or who just think that doctors are god, are at the mercy of the system.

    •  Reminds me of a visit to the ER (6+ / 0-)

      I could hear in the next partitioned area a doctor trying to tell a Spanish-speaking couple that the wife had a bladder infection and how to treat it.  I could tell they were getting upset because the husband thought it was some kind of STD and the neither one of them really knew what the doctor was talking about.

      This is California!  You'd think there would be at least one person there who could translate...

      "Life is short, drink the good wine!" - OQ

      by OtterQueen on Sun Jan 17, 2010 at 04:18:29 PM PST

      [ Parent ]

  •  How I'm trying to help myself in advance.... (5+ / 0-)

    I come from a family of doctors and try to keep up good relationships so they'll all be inclined to help me. Ditto my friends and neighbors. I try to do as much as possible for them not just to ingratiate myself and rack up points, but because that's the kind of world I want to live in.

    I also like to share the advice of a social worker:  have some fun every day. Whatever your idea of fun is.

    And, not to be a pain in the butt about it, but we have a deadline coming up to get a real helper elected. We need to block someone who will hurt us:

    http://www.marthacoakley.com/...

    election is on Tuesday, Jan. 19

    Media Reform Action Link http://stopbigmedia.com/

    by LNK on Sun Jan 17, 2010 at 03:56:16 PM PST

  •  You speak the truth, exme. (10+ / 0-)

    About twenty years ago, I had a friend, newly married, who discovered that she had ovarian cancer.  She had recently lost her father to cancer and her mother had died at too young an age from cancer.  She had several sisters -- one of them began researching the family history and found lots of incidences of cancer.  All the sisters had themselves checked, in once case (it may have been the sister who did the family research) ovarian cancer was detected at a very early stage and dealt with.  Her sister's experience saved her life.

    The researching sister, Carol Krause, wrote a little book, How Healthy is Your Family Tree?.  It is well worth acquiring.

    My friend?  Even before she had finished healing from her cancer treatment, she got a big, prestigious promotion.  And later, she and her husband adopted two children.

    Happy endings are possible.  I wish them for everyone facing such a terrible disease -- especially you, exme!

  •  on haaving someone who will translate (10+ / 0-)

    medical-speak into everyday English:
    When my father had his third (and last) stroke, and was in surgical ICU, his youngest brother would call the hospital and get the doctors to tell him what was happening; then he'd call us and give us the news in plain English. He was a doctor, and they'd tell him stuff they didn't really want to tell us. (Not that we didn't have a pretty good idea of what was going on, but they sure weren't planning to tell us he was brain-dead before they thought we were ready to hear the news.)

  •  Doctors' personalities: advice from inside (10+ / 0-)

    Surgeons are more like technicians rather than people-persons. Don't expect them necessarily to have the bedside manner of other doctors you have met.

    The doctors in my family often mention individual specialists and shrug their shoulders saying bad things about the personality (oversized ego, usually) but advising to put up with it for the sake of tapping into their expertise.

    OTOH, my dentist has a hilarious story about a much loved older colleague--the patients thought he was so caring towards them......But it turns out he was touching the patients' forearms while they were in the chair not as a gesture of compassion......It's that his eyesight was failing and it helped him to navigate his way to his chair!

    BTW, it's OK to politely but firmly make everybody wash their hands.

    And doublecheck every order.

    Media Reform Action Link http://stopbigmedia.com/

    by LNK on Sun Jan 17, 2010 at 04:02:19 PM PST

  •  Research, Research, Research ... (12+ / 0-)

    You have written a timely diary indeed, exmearden! Just one month ago, I was diagnosed with interstitial lung disease brought about (we think) by a rare disease called scleroderma. Talk about frightened. Not so much of the disease, mind you. But of the fact that I'm single, live alone ... and am self-employed. No family nearby either. And seven long years left before I can retire. What if I got to the point before then where I couldn't work?? How would I pay the bills? Hell ... how would I pay my $18,000 per year health insurance premium??? How would I get to doctor appointments if I couldn't drive myself? And on and on and on.

    But I'm a firm believer in research. I collected all of my test results from the past year, then sat down and had a long session with Google. Studied everything I could lay my hands on. Then peppered my doctors with questions. Made them describe everything that was coming in detail. Also researched info on early retirement if I need it ... and on area support groups. Then I started talking to friends about it.

    When all that was done, and I had KNOWLEDGE on my side, you can't believe what a difference it made for me. I actually got comfortable with the concept of having a chronic illness. Somehow I knew I'd find a way through ... just as you are doing, exmearden. One step at a time, eh?

    P.S. Oooooh, I'm finding out what you mean by fatigue. I guess autoimmune diseases are nasty at causing that too. Hmmmm ... great excuse for taking naps at odd hours of the day!

  •  Thank you for this advice (8+ / 0-)

    It's something all of us should take to heart in a frequently confusing, and sometimes heartless health care system.

    That's Countdown for the 2,082nd day since Mission Accomplished. You thought that would change? Are the troops home yet? Keith Olbermann January 20, 2009

    by Ed in Montana on Sun Jan 17, 2010 at 04:03:06 PM PST

  •  Excellent advice. (6+ / 0-)

    And may I say how glad I am to see that you're still here, still fighting, still being a control freak.

    Having recently gone through a health crisis, I will take your advice about getting copies of all images and test results to heart.

    "Life and death, dispensed on a dollar basis. How ridiculous and fatally stupid, in what is still the richest country on earth?" Exmearden

    by burana on Sun Jan 17, 2010 at 04:04:05 PM PST

  •  I first heard of that cancer when Eric Carr (6+ / 0-)

    the drummer for non-makeup KISS, contracted it.   God bless you.  I will pray for your swift recovery.  

    Strength of character does not consist solely of having powerful feelings, but in maintaining one's balance in spite of them - Clausewicz

    by SpamNunn on Sun Jan 17, 2010 at 04:08:15 PM PST

  •  Another reminder about patients (8+ / 0-)

    Patients and their families can only 'hear' what they are ready to hear.

    Try to get someone to write everything down in plain English. Especially instructions.

    It is a 'Red Cross Fact' that in an emergency/under stress we can only access about 20 percent of our rational minds.

    So, there are obstacles to hearing, to understanding, and to remembering.

    For example, I swear that I stood in front of my x-ray and thought I saw what was wrong - - I saw a little bit of chipped bone-- but it was only when everything was healed that my mind actually LET ME SEE and register the information that a couple of bones were completely broken.

    And I thought I'm an intelligent, calm, rational person.

    I'm starting to understand why they don't always tell the patient everything at once, but take it one step at a time.

    Media Reform Action Link http://stopbigmedia.com/

    by LNK on Sun Jan 17, 2010 at 04:09:43 PM PST

  •  Never expect to read something like this about (10+ / 0-)

    someone like you when I wander back to Kos.  Being your body's best friend, and continuing to do as much as possible to be who you always have been--that's always been my advice and explanation and you are courage personified.  I'll think well thoughts for you often.

    What a piece of writing!!  This is the most important diary anyone with a human body could read.  

    I took care of my mother through two years of ALS, and she never made a decision, never ceased to cave to her brand-new, ignorant and uncaring husband, passed out or dissolved in fear and tears with every doctor visit.  She left me twisting in the wind regulary.  I was in terrible pain myself, from crushed spinal nerves.

    But I kept pushing for what she needed and tried to grant whatever wish lasted more than 24 hours.  I am so glad that I did.  She was as comfortable as anyone in the nursing home (very nice one--I had three kids at home) had ever seen an ALS patient.

    It's damn hard to advocate for someone like that, but they need it more than anyone.

    She didn't know it couldn't be done, so she went ahead and did it.

    by Boadicaea on Sun Jan 17, 2010 at 04:14:06 PM PST

  •  A few sites I found helpful (6+ / 0-)

    when my mom had lung cancer 13 years ago, were very useful and inspirational at educating us about the disease.  She was initially told she had a 15% chance of surviving the year.  After X-ray treatment, the tumor subsided enough that the doctor thought surgery might be possible.  She survived another 10 years after that, completely free of the cancer.

    The sites I found were:

    The R.A. Bloch Cancer Foundation  Bloch is one of the brothers who founded the tax preparing company.  Particularly inspirational is his A Letter to all Newly Diagnosed Cancer Patients....  Overall the site is a great aggregator of patient and supporter resources, including disease specific facts, support groups, and much other useful information.

    Steven Dunn's Cancer Guide including basic info, disease specific info, clinical trial info, researching your options, and a section of inspirational stories by survivors of many different cancers.

    These sites were a real help to us.  I hope they help you and your readers, if you are not familiar with them already.

  •  It's all good (5+ / 0-)
    Recommended by:
    Sylv, sberel, betson08, raster44, ladybug53

    Thanks for writing this.

  •  One of the things that has gotten me through (7+ / 0-)

    I'm a lymphoma patient, my type is currently considered incurable but treatable.  I like you have felt that I have to be up on the research.  I have friends and family who argue that ignorance is sometimes bliss, which may be true for some but just doesn't work for me.  I have found the following piece to be very helpful when I sometimes encounter a little more than I might feel like handling at any one moment:
    The Median Isn't the Message by Stephen Jay Gould
    http://www.cancerguide.org/...

  •  Hello Exme! (5+ / 0-)
    Recommended by:
    Sylv, sberel, betson08, raster44, ladybug53

    Good to hear from you, as always...

  •  I did the same thing when my mom (3+ / 0-)
    Recommended by:
    sberel, 3goldens, ladybug53

    was diagnosed with pancreatic cancer in 2008. Ended up getting off a Medicare Advantage plan (horrible HIP) so we could get some better doctors.

    Unfortunately, we got a terrible oncologist. Not terrible in reputation, but terrible in not wanting his patients to be informed or talk back. I really regret letting him give my mom chemo. He lied to her and me about the side effects and one round almost killed her. It certainly shortened her lifespan.

    The rest of the new docs I found were superb but I wouldn't have found them had I not been the super advocate. The whole medical system around cancer is terrible and impersonal and I just had trouble stomaching the whole experience, save 2 doctors who really were caring.

    Google the Budwig protocol (diet, plus sun - vit D - plus relaxation) and go to the Yahoo group btw. Good info there.

  •  I have an abdominal aortic aneurysm (AAA) (8+ / 0-)

    Which is a condition that has no symptoms until it's either  nearly fatal, or probably more commonly, fatal. The aorta is either on the verge of rupturing or ruptures before you really feel much. It runs in my family - my cholesterol is low, my BP only moderately elevated, my arteries relatively unblocked.

    But most family practitioners don't know much about AAA. I know this both from my own experience, and because my dad's doctor thought his pains were a heart condition. When my dad finally went to a cardiologist, the aneurysm was so large that the cardiologist noticed it the minute my dad took his shirt off (it was visible). He was scheduled for immediate surgery and died in the operating room.

    Thirty years ago I had a very good GP who looked at my medical history and suggested periodic ultrasounds, which I've had every 5 or 10 years. Last year's came back positive. I had the ultrasound done via Lifeline screening (which is a  non-doctor, non-hospital health screening), so when I made the appointment with a new doctor, I took in the picture and diagnosis.

    But before the appointment, I had researched AAA thoroughly on the internet, so I knew stuff my doctor didn't - like which BP meds were also protective for AAA (ACE inhibitors) and which were more dangerous (calcium channel blockers), that doxycycline showed promise in small trials of slowing or reducing aneurysm growth, what the biochemistry was (MMP-9's are particularly indicated as the cause) and what eventual treatment options were (stent, open surgery, laprascopic surgery), and when treatment was indicated (5cm diameter - I was a little over 3cm).

    I also discussed with my sister-in-law, who's a nurse, and has a pretty good take on which doctors are good, and which to avoid. Fortunately, if I need treatment, there are some very good specialists in my rural area who can do any of the possible procedures.

    The doctor was actually relieved to have all of the information, including a printout of a comprehensive article from her specialty's journal that she hadn't seen.

    BUT - although I convinced her to try doxycyline to see if it might work, she also had the experience to know that doxycycline could cause liver damage - something not noted on the drug information sheets I'd read. And blood tests after a few months indicated I had elevated liver enzymes.

    It's important to understand your condition - for example, the radiologist's report from the ultrasound said nothing more than "small aneurysm", whereas by asking the ultrasound tech, I already knew exactly what the size was and could tell my doctor. That's important for understanding how fast the disease is progressing when looking at subsequent ultrasounds.

    But it's also important to recognize that MDs have a lot more knowledge than you'll ever gain off the 'net, even if they aren't current with the very latest information about your condition.

    Bitte sag mir wer das Märchen vom Erwachsen sein erfand

    by badger on Sun Jan 17, 2010 at 04:43:22 PM PST

  •  Nurse Kelley Sez (13+ / 0-)

    No matter what your training, education and abilities may be, YOU are the world expert on YOUR body. Listen to ExMe and be a passionate partner in your healthcare. If something doesn't feel or sound right, speak up. If your healthcare provider doesn't listen to your concerns, find one who will. It's perfectly normal to occasionally have trouble articulating your thoughts, especially to someone who gives the impression of being ready to bolt from the room. Ask them to sit down and listen to you. You never know which conversation may be life-changing!

    This is another wonderful diary, ExMe. I love that you are teaching and empowering others at the time of your greatest personal challenge. ♥

  •  Great advice! And, (9+ / 0-)

    I'd like to offer a few more suggestions. (I've had cancer and cared for my mother for 2 years before she died of lung cancer).

    1. If you can afford it, get a 2nd opinion even if the first opinion was good news. My mom was told she had Stage I cancer. A week later she came out of surgery with a diagnosis of Stage IV cancer (which a different doctor later disagreed with).
    1. If you are the caregiver, find out how much the patient wants to know. Respect their wish if you can. Don't get frustrated if they don't remember what the doctor said - or understand what they are seeing. I didn't realize how out of it my mom was (from chemo) until we looked at her most recent scan one day and the tumor was huge - she didn't even notice it. Chemo and fatigue do funny things to the brain.
    1. Whether patient or caregiver, find a support system. (I was appalled at the idea of joining a 'real' group, so I found an on-line group at acor.org)
    1. Listen to all the advice everyone (including my advice) wants to give you, then do what you want to do.

    Having cancer was the hardest thing I ever went through in my life. Being a caregiver was a very close 2nd hardest thing.

    "In this world of sin and sorrow there is always something to be thankful for; as for me, I rejoice that I am not a Republican." ~ Mencken

    by royce on Sun Jan 17, 2010 at 04:50:44 PM PST

  •  Another resource (5+ / 0-)
    Recommended by:
    Sylv, Birdman, sberel, raster44, 3goldens

    All the advice is excellent here exmearden. Be an advocate, bring an advocate, notebook/notebook/notebook, and enter the situation with a team approach. One of the docs here mentioned that, there is a line between advocating and arguing. Sometimes you know more (it's your body) and sometimes the docs know more (they have likely had many patients with the same disease/illness, you've had one).

    One more fabulous resource for cancer patients/patient advocates (self) is www.acor.org It is filled with folks educated on their illness, looking for info or support from others in their shoes. Many lists also include medical specialists interested in learning from patients, and offering information if needed. It is an email listserv started by a man after his wife was diagnosed with cancer. Saved my sanity many, many times over.

  •  My wife and I learned to be advocates (9+ / 0-)

    when she was diagnosed, in 1990, with stage 4 metastatic melanoma, a diagnosis characterized simply as "grim" by her oncologist. We were told that since there was essentially no effective conventional treatment, we might want to research clinical trials on our own. After much searching (pre-Google, with a big-ass 3-ring binder), we found a trial being done by the John Wayne Cancer Center, then housed at UCLA. She was enrolled in the study, which was completed a few years ago. All we know is that despite a few intervening surgeries around her torso and brain, she is still with us, active, and enjoying her beautiful granddaughters.

    New challenges have come along for her since, including MS, which may or may not be related to the immunotherapeutic approach of the clinical trial, but we feel that without taking on the self-advocate role, things would not have turned out as well as they have.

    Thanks, exmearden, for a great diary, and all our hopes to you for a long and healthy life.

  •  Thank you for giving of yourself again! (4+ / 0-)
    Recommended by:
    Sylv, sberel, 3goldens, ladybug53

    Giving us the courage and strength to face another day. I needed your help today. Thank you!

    Amazing the Time I waste Here! Sometimes it's not wasted though!

    by raster44 on Sun Jan 17, 2010 at 05:09:53 PM PST

  •  Never Google your symptoms! (3+ / 0-)
    Recommended by:
    Sylv, 3goldens, exmearden

    It leads to unnecessary panic.

    Best of luck... We can't afford to lose any liberals!

    "How I hate those who are dedicated to producing conformity." William S Burroughs

    by shmuelman on Sun Jan 17, 2010 at 05:50:19 PM PST

  •  this is pretty fantastic stuff exme (7+ / 0-)

    I'm like totally saluting you for what you are doing here.

    People are scared to death of death, and they won't talk about it.  You are busting that ceiling, calling it out, embracing your own death as you have embraced your whole life: there for it.  And we are all richer for your voice, if we can hear.

    Death is. Nobody gets out alive. But our relationship to that natural process is in our own hands, and minds, to be heaven or hell, as we choose.  Even when the timing totally sucks.

    We really need to talk about this. Thanks.

    don't always believe what you think...

    by claude on Sun Jan 17, 2010 at 05:50:44 PM PST

  •  I'm in health care hell right now (6+ / 0-)

    I have a rare condition that no one understands and I have no insurance.  I am unable to work and trying to get social security but since I don't have health insurance and haven't' for...well...I guess since I was a kid I don't have the records to prove my condition.  

    I finally went and got the blood work right before Christmas and all the relevant tests showed exactly what I said they would but because technically the numbers were not outside the range, partially because I take pill to correct the levels, and this Dr called me and told me that gee everything is normal.  NORMAL. Christ I am not normal.  I went in armed with information and resources that I left with the Dr and I get NORMAL as a response.  

    It is so frustrating.  How in the hell is a consumer supposed to be able to tell if a doctor has a brain before they are forced to spend god knows how much to be told they are NORMAL.  

  •  I have been through this twice (11+ / 0-)

    First, my ex-husband got a form of cancer so rare that only 7 people in this country had ever been diagnosed with it.  And not one had survived a year.

    I went into full bulldog mode and found him an amazing oncologist/surgeon at the University of Miami who put him through hell, but here we are 10 years later, and my ex is completely clean.

    Second is one of my best friends, who had a less rare, but even more virulent cancer.  Three months was her expectancy.  Again, I berated her, and corraled her brother to get her to more expert physicians, not to accept what she was initially told.  And here she is, 9 months later (albiet having gone through hell as well) with a completely clean scan.

    But here is a notice for all the care-givers out there.  My ex-husband was 30 when he was diagnosed.  My friend was 40.  That is not the age where you can even begin to fathom your own mortality, let alone come to terms with it.  They have, if they have decent doctors, have been told the basics of how bad it is.  But they don't need you underlining it.  Because they are already terrified.

    So please do the research for them, because they will usually be too scared to.  But moderate what you tell them.  Stick to what knowledge may improve their situation - better doctors, better treatments etc.

    And understand that you, as care-givers, will be going through your own private hell, but one which you will get no sympathy for.  You will be absolutely terrified of losing your loved one, and yet you must be strong, and keep their spirits up - no matter what.  You will spend long lonely hours trying to help, to no effect.  "Please, please eat something.  I'll get you anything you want."  Futiley trying to come up with any silly thing to make them smile.  Sitting in hospital hallways.  Sitting in the room while they sleep.  Feeling completely helpless.

    But, from what I am told, after the fact, you do help.  Although the patient may not be able to express it at the time, may be grumpy or in real pain, you do make a difference.  Being able to challenge the doctors and the nurses to make sure your loved one gets the best of care does make a difference.  And although you lay your head down every night and cry yourrself to sleep - you are making a difference.

    Several weeks after my ex got his first all-clear after 2 years of treatment, I was taken to the emergency room with what was a major panic attack.  Luckily I got a great doctor who specializes in these things (I guess because I went into physical seizure), and she said it was due to stress.

    So I asked, if it was stress, why didn't I have an attack while my husband was so sick.  Why did I wait until we finally had good news?  Life is finally looking great!  Why now?

    Well, she said, it's because you allowed yourself to.  You knew it was safe now.

    So to all you caregivers out there - hang in there!

    And to those of you who feel all hope for you is lost - well, I have two loved ones that shouldn't be alive today, and they are as healthy as horses.  You cannot give up.

    •  excellent advice. (7+ / 0-)

      I eat even when it feels I can't. I figure I need sustenance and something for the rest of the cells in my body to get strong on. Luckily, the chemo impact has not been as great on me as it is on others. Maybe because I force myself to eat and drink regularly.

      I have mouth sores, too, and a raw esophagus, so it gets challenging. But I'm creative. I think it's my nature to use food as medicine (grin).

      Family members help a great deal, but they have to have stamina and their own tools of survival. It's rough on the support network, for sure.

      "We are one, after all, you and I, together we suffer, together exist, and forever will recreate each other."
      Teilhard de Chardin

      by exmearden on Sun Jan 17, 2010 at 07:09:06 PM PST

      [ Parent ]

      •  Magic Mouthwash (4+ / 0-)

        is what most people get for the mouth sores.  If you don't already have some ask your oncologist for a prescription and get it.  My first two chemo cycles I got mouth sores and needed that.  After that I was religious about rinsing my mouth with salt water with a little bit of baking soda added several times a day and I didn't get the sores anymore.  Everybody's different, just wanted to add my experience in case it would help you.

      •  yogurt (0+ / 0-)

        is soothing for sore mouths and has both antibacterial and antifungal properties.  Mixing a little raw honey in (fom a good source-you dont need food poisoning from bad raw honey) will add to the antibacterial properties.

        Democrats give you the Bill of Rights; Republicans sell you a bill of goods!

        by barbwires on Mon Jan 18, 2010 at 05:04:54 PM PST

        [ Parent ]

  •  Thank you, exme. (4+ / 0-)
    Recommended by:
    Sylv, barbwires, ladybug53, exmearden

    I need the patient advocacy information.

    Your selflessness and grace continues to leave me in awe.

    Again, sincerest thanks.

    "Ancora Imparo." ("I am still learning.") - Michelangelo, Age 87

    by Dreaming of Better Days on Sun Jan 17, 2010 at 07:27:25 PM PST

  •  Thank you (3+ / 0-)
    Recommended by:
    Sylv, ladybug53, exmearden

    I sent the link to this article to my sister. Her 25-yr old son was diagnosed with Stage III melanoma in April '08. It has since spread to his lungs, brain, spine and lymph. They did research and took him up to Chicago (we're in Indy) to a practice that has had some success. Well, it's not working and a week ago was told that he only has 3 weeks left.

    He's starting to hurt and tumors are starting to be visible but the funny thing is that he's eating like a horse! His wife is pregnant and he's said that he's going to stick around at least until his son is born which is the first of May.

  •  I do one thing that has really helped: (2+ / 0-)
    Recommended by:
    ladybug53, exmearden

    You know that financial agreement with the fine print in that stack of forms you have to sign at every facility? Guess what? Yep. I alter it to my favor while chatting with the overworked employee who hands it to me.
    "I agree to cover all costs not reimbursed by my insurance." NOT.
    "I agree to pay all attorney and collection fees." NOT.
    Etc.
    I ask for a copy of it and they always give it to me there.
    I am not an attorney, but it damn sure comes in handy when there is a dispute over reimbursement between the insurance company and the health care facility.

    I just upgraded internet speed. Now I can be late to the best diaries, faster.

    by mississippi boatrat on Sun Jan 17, 2010 at 07:39:52 PM PST

  •  Oh absolutely. (3+ / 0-)
    Recommended by:
    Sylv, ladybug53, exmearden

    I had breast cancer 7 years ago, and googling my disease was a big mistake.  It didn't take me long, fortunately, to figure out that much of the info I was getting was far too "clinical" to be of help, and very "doom and gloom"y as far as prognosis are concerned.

    Two months ago Mr. Ohmyheck googled 5HTP, his non-prescription anti-winter-depression medication, and promptly went OFF it.  Right when he needed it the most.  And he neglected to tell me of his decision.

    Not Good.  When he finally informed me, I had to tell him the truth about teh innertoobz info.  He immediately went back on it.

    There is now hope for my marriage.

    The person who says it cannot be done should not interrupt the person who is doing it.

    by ohmyheck on Sun Jan 17, 2010 at 08:29:30 PM PST

  •  Importance of being/having a patient advocate (3+ / 0-)
    Recommended by:
    Sylv, ladybug53, exmearden

    Thank you so much for your articulate and tremendous article. IMO, you are 100% correct about the importance of a patient advocate. My dad spent 91 days in the hospital (57 in Cardiac ICU) following 2 emergency open heart surgeries. He had 16 specialists - and me. I was on the phone 2x/daily with our internist at home, who gave me lists of questions to pose to each of the doctors. He told me which procedures to make sure that they were doing, etc... The hospital was terrific and his 16 doctors were great but I believe that, because I kept pushing and asking a zillion questions, his care was just that much better. The main lesson that I learned is that, if you are in the hospital, you need to have an advocate sitting by the bedside making sure that everything that should be done is being done for you in a timely fashion. I was lucky - I had a tremendous internist at home to feed me lots of questions so that I didn't have to do the research myself but I would have if I needed to. All of his doctors had hundreds of patients - I only had 1 so I could focus all of my energy on him.

  •  Thank-you for this diary. It's very helpful:) (1+ / 0-)
    Recommended by:
    Sylv

    "They had fangs. They were biting people. They had this look in their eyes,totally cold, animal. I think they were young Republicans."

    by slouching on Sun Jan 17, 2010 at 11:09:10 PM PST

  •  oh. and on Nurses! (2+ / 0-)
    Recommended by:
    Sylv, barbwires

    I can't believe I forgot this. Hope SOMEONE is still reading this thread...

    Not all, but MOST nurses are god's gift to humans. Don't forget it. They are knowlegeable and a fantastic source of ALTNERATE information (including other providers if you need second opinion - the NURSES know who's reputation is sound and who's not)

    My partner (domestic, not business) is a nurse with nearly 30 years experience and I have always considered her the kindest, gentlest, most generous person I know (she now does hospice case-management). But I had never seen her at work.

    Over the past several months, I've had opportunity to watch many, many nurses - LPN's, RN's, NP's as well as CNA's and good old fashioned "companions" do the most incredible - and at times REVOLTING - work in the most compassionate and caring ways imaginable.

    In addition to my own care, my father was recently hospitalized for 7 months (yup - SEVEN months) and they cleaned his ass, shaved him, bathed him, changed dressings, fed him, passed meds, held his urinal, talked him through long, lonely nights, massaged hands, feet and backsides, and generally took EXCELLENT care - much of it using very high tech equipment and methods. And they worked very long hours. Many were raising families - often they were single mothers (or fathers).

    Nurses are by FAR the most underappreciated professionals in our society.

    If you know a nurse - thank her. Just for being who s/he is.

  •  My dear exme (1+ / 0-)
    Recommended by:
    Sylv

    Post a diary, or some comments somewhere, about your new grandchild, if that is acceptable to you.

    You are a front page celebrity, so alongside health care, and your health care advice, and Haiti, and pooties, we expect to see grandchild diaries, at least from you.

    Peace.

  •  Yup. You've nailed it, Exmearden, (1+ / 0-)
    Recommended by:
    barbwires

    No one can be a better advocate for your health than yourself. I've dealt with a couple of chronic illnesses for a couple of decades. What I've learned through voracious reading has helped keep me alive.

    I've been blessed with excellent docs, but they all have many patients. I learned more about treating diabetes from other diabetics than from docs.

    Just my dos centavos.

    And if Limbaugh, Beck et al stroke out over this, I say we put him on Mount Rushmore. - Nancy Nall

    by perro amarillo on Mon Jan 18, 2010 at 09:42:14 AM PST

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