Doctor of the Year

10.29.2007 | 9:49 pm

A warning from Fatty: I am extremely pissed off today, and don’t plan to pretend I’m not. If you’re looking for something non-bilious, you’re going to need to look elsewhere.

Today, Susan had an appointment with the friendly neighborhood neurologist. This was a followup to the MRI she had last Friday, which was recommended during the neurologist visit she had last Tuesday, which was in turn a followup to the EMG test she had the previous Wednesday on the advice from the neurologist . . . okay, at this point I lose track of the dates.

The point is, today’s appointment was the latest in what has now been established as an ongoing pattern with the neurologist. He meets with us, recommends some tests, then we have a followup where he recommends some more tests.

That’s the visit-by-visit pattern. There is also a pattern within each visit: we arrive on time, and then wait for 1.5 hours. I am not exaggerating, even a little bit. I think we are not supposed to realize that a full 1.5 hours has elapsed between when we arrive and when we see the doctor, because the doctor uses clever tricks engineered to make us think things are happening, even though they’re not. For example:

  • 45 minutes: Sit in waiting room.
  • 20 minutes: Sit in examination room.
  • 5 minutes: Talk with Doctor’s assistant, who asks questions. I assume that this information is communicated to the Doctor, although I am not certain, since the Doctor always begins by asking the exact same questions.
  • 20 minutes: Sit in examination room. Some more. Five minutes before he comes to talk to us, the Doctor will come and get Susan’s file, to “review” it. I put “review” in quotes because I would be happy to bet large sums of money that this is in fact the first time he has considered Susan’s case since the last time he saw her.

After our 1.5 hour wait, we are rewarded with no more than ten minutes of the Doctor’s time. During this precious ten minutes, he gives the evaluation and a recommendation for tests I knew he would give . . . and in fact asked for weeks ago. Because, unlike him, I have the power of the Internet and am moderately curious, and can therefore use symptoms and observation to come up with a diagnosis.

But I do not say anything like this, because I know that, sooner or later, he’s going to help. Somehow. In some way other than the one trick he’s shown himself capable of so far: prescribing pain medication.

And that leads us to today.

Today’s Appointment
We waited our usual 1.5 hours today. It’s a good thing Susan’s very comfortable sitting in a chair for that long, and that we don’t have kids to take care of, and that I don’t have a job I’m missing, or this would be very uncomfortable and inconvenient. I’m not upset, because I know that this kind of delay is just an anomaly – if you define ”anomaly” as “something that happens every single time.”

OK, I promise. No more talking about the waiting.

The neurologist comes in, sits down, and tells Susan that the reason she’s in so much pain and her left leg has lost so much mobility is because the tumors on her pelvic bones are growing, so much so that her pelvis is in danger of fracturing. Susan probably should avoid walking altogether, and it would be a good idea to have an appointment with the oncologist.

He wishes her good luck — using these exact words: “Uh, good luck.” He says maybe we should set up a followup appointment in six weeks or so, though he does not say why.

And then he’s gone. Two minutes, beginning to end.

For some reason, it occurs to me: “Well, at least his next appointment won’t have had to wait quite so long.”

On the way out, neither Susan nor I make a move to the desk to set up a followup visit. Later, we will both acknowledge this was intentional.

After the Appointment
As we drive home, I call the oncologist’s assistant — I have her on speed dial, because she’s the one person in the medical community who returns my calls, every single time. I tell her what we’ve learned, and ask her to make sure to get the information from the neurologist, because we’re going to need to see the oncologist tomorrow and figure out what — if anything — we can do.

The oncologist’s assistant assures me that this is a bump in the road, not the end of it.

Then, while we’re still driving home, the neurologist’s assistant calls Susan. “I’ve set up your appointment with the orthopedist,” she tells Susan.

“What?” replies Susan. The doctor did not mention setting up an appointment with anyone, and certainly not an orthopedist. Plus, the time being set is 70 minutes away from where we live, and at the same time Susan would be having chemotherapy, and, hopefully, talking with the Oncologist.

The Neurologist’s assistant calls back in a few minutes and says that the Neurologist has talked with the Oncologist and they both agree it’s more important that Susan see an Orthopedist than go to chemo.

To recap, our new situation is now as follows:

  • Two doctors have agreed that a visit to a third doctor is more important than Susan going to get chemotherapy, which is — we thought — was pretty much the most importhant thing she could do each week.
  • Neither doctor has bothered explaining to us why this is so incredibly important — or even relevant – and neither was available to talk today.
  • Because Susan will be going to the Orthopedist instead of the Oncologist, she won’t be meeting with the Oncologist to talk about a course of action to fight the tumors that are — in spite of the chemotherapy — growing inside Susan.
  • So not only don’t we know how bad this is and what to do next today, but we won’t know tomorrow either.

I’m sure it’s unreasonable of us, but this causes us some distress.


  1. Comment by Lins - Aust | 10.29.2007 | 11:04 pm

    Not unreasonable at all but I’d want to hear it from the Oncologist if chemotherapy was taking a back seat to a visit to an Orthopaedic specialist.

    If the Oncologist’s assistant has done the right thing by you in the past then ring her back and tell her you want to talk to the Oncologist about the latest course of action. Explain that you would prefer it if the Oncologist had a pow-wow with the Orthopaedic guy before prioritising treatments. That’s merely cautious, not unreasonable.

    Best wishes. Truly.

  2. Comment by Weean | 10.30.2007 | 12:07 am

    Whoa. As an outsider, I had always assumed that those of you in the states grossly overpaid for your healthcare, but some of this was was justifiable because of the level of service you received. Now I’m not so sure.

    I’m with Lins on this one. I’m not a medical doctor, but isn’t an oncologist a cancer expert, and isn’t that Susans condition?

    If your neurologist is competent and professional, he won’t be offended that you’ve asked for a second opinion regarding the most important course of treatment. If he is going to be offended, he’s certainly not professional, and there would be scope to question his competency.

    I’m sure I speak for everyone when I say our thoughts/prayers/karma redirection are with you(se)

  3. Comment by Big Mike In Oz | 10.30.2007 | 12:41 am

    If by unreasonable you mean completely reasonable you’re spot on. Despite all of our similarities I think we differ in one regard… I think that in the face of a very unprofessionally handled situation you remained profoundly calm.

    Me… when the neurologist’s assistant called to screw with your delicate schedule I would have turned the car around, breaking most road rules to get back to the neurologist as quickly as possible so that I could announce myself by simultaneously ripping his office door off its hinges and blowing his toupe off with my voice. I would have then let go of his throat upon the administration of nothing less than either pepper spray or a tazer. My hands are shaking right now and I have neither the time or the money to make a 15000 mile flight to end my frustration.

    Please feel free to sent your neurologist a photo of me with the following inscription… “don’t make me come down there”.

  4. Comment by Big Boned | 10.30.2007 | 1:14 am

    I just used my LBOD on them all.
    I like Lins idea of calling the oncologists assistant back and telling them of your concern. Maybe that will spur some action that at least can give you peace of mind about the direction they are going in.
    Prayers follow Susan everywhere.

  5. Comment by buckythedonkey | 10.30.2007 | 1:35 am

    My first reaction was much like Mike’s, although my choice of implement tends toward the medievel. If only I was as sensible as Lin.

    My non-medical reaction is to think that you should call the oncologist, if only for your own sanity, but preferably to get him/her to complete this particular medical triangle.

    Uh, good luck. No, strike that! Love and hugs to you both!

  6. Comment by Baron von Thin (formerly... someone else) | 10.30.2007 | 1:44 am

    Yea, everytime we have an appointment for chemo or to see someone, we just wait, and wait, and wait, and… “Be here at 9:00am exactly!” Three hours later, “It’ll just be a bit longer.” Personally, I find that complaining loudly, but calmly not only hurries things along, but makes me feel better. Best of luck to both of you.

    PS: no, I can’t remember the last time I posted either.

  7. Comment by Mike Roadie | 10.30.2007 | 1:45 am


    These folks (medicals, in general) need to take their eyes off the Dollar meter and start caring for the conditions of their patients and loved ones. These stories are far too frequent.

    I don’t mean to get Hippocratic, but isn’t that what doctors are supposed to do??

    In my job, we say, “If it wasn’t for the customers, this job would be easy!” If we all were healthy, we wouldn’t need to “use” their time!!!

    I couldn’t believe you were blogging so early in the day, now I see why!

    Best of luck to you both……your community is behind you! Don’t stop calling the docotrs, bothering the assistants, asking the questions, etc., until YOU get what YOU want!

    Live STRONG!!!!

  8. Comment by Medstudentitis | 10.30.2007 | 3:42 am

    This sounds awful, I’m so sorry. It seems like you need a meeting of her entire care team to clarify for you what the hell is going on – which it seems like this neurologist wouldn’t even be remotely interested in doing since he seems to be up his own ass. I see a lot of caring doctors every day but unfortunately I also see the occasional asshole. Can you get a referral to a different neurologist? It may seem like starting all over, but then again it might be worth it.

    I really hope this all turns out in the end and you both get some explanations. All my good thoughts are going out to both of you.

  9. Comment by yukirin boy | 10.30.2007 | 4:16 am

    Thee events you had to endure make my blood boil.
    doctors making you wait seemingly forever when you have an appointment are a pet peeve of mine.
    As said above it seems your team of medical care specialists need to get together and come up with a plan of actionand discuss it with you two as members of the same team.

    Best wishes. keep WINning.

  10. Comment by TG | 10.30.2007 | 4:17 am

    Fatty and Susan
    Continued prayers and love coming your way.
    I am sorry that this “doctor”, through his flippant and uncaring attitude has caused you so much stress and anxiety. Things are bad enough without his ineptitude complicating matters.
    Keep turning the cranks.

  11. Comment by Brie | 10.30.2007 | 4:36 am

    Love and prayers to you and Susan (and the kids too!)

    The neurologist’s actions are very unfair, and don’t be afraid to tell him so. Unfortunately as a scientist I work with these ‘types’ of doctors who feel they don’t need to explain to you since (according to them) you wouldn’t understand….Don’t stand for it. Always ask questions that way you know more and it forces them to explain, and if it doesn’t sound right don’t be intimidated…otherwise I’ll join Mike on the flight over and have my 2 cents as well (plus the 2000 flight)

    The relationship with the oncologist sounds the best – call and ask them to explain why the change of plans.

    Again thoughts and prayers with you both – wearing Susan’s jersey with pride and hope in my heart tomorrow.

  12. Comment by Age Grouper | 10.30.2007 | 5:00 am

    As a physician, I find the Neurologist’s behavior unacceptable. Keeping you waiting each and every time means that he need better and more realistic control over his scheduling. Especially as a surgeon, I acknowledge that there are times when unexpected events prohibit any thought of punctuality, but it’s so easy to say, “Sorry, something unexpected change the schedule today.” Neurologists are in short supply nationwide, so there may be a lot of pressure from other physicians and patients to “work someone in”, but this should not be a routine. I also know that the findings of one test may lead to the recommendation of another test, but his method of handling this was very poor. He must take a bit of time at the beginning of the appointment to review new results since the last appointment. Keep in mind, he’s seen a bunch of people in that interval. However, if he recommends referral to another physician, you should be informed about the reason, expectations, etc. I wholeheartedly agree with the previous comments about contacting the Oncologist’s PA, as it seems like she is your anchor. The Oncologist and PA should be calling the shots and coordinating care, not the Neurologist. One final question/comment – Is it possible for Susan to see another Neurologist? It’s trite to say, but I will keep the two of you in my thoughts and prayers.

  13. Comment by Maggi | 10.30.2007 | 5:01 am

    Someone in a previous comment mentioned the need for a meeting with Susan’s entire care team— I will second, third and fourth this notion. When was the last time you had all of her doctors in the same conversation at the same time? Whether it is done face-to-face or via conference call, you really, really need to pull all these docs together. Who is in charge of Susan’s case file? Was she assigned a healthcare advocate via the hospital, or is it assumed that you are her only healthcare advocate?

    During my uncle’s bout with breast cancer (no, I’m not joking), he had a specific person assigned to his case who he would call when he had questions. Sometimes it was a pain and he felt it would have been easier to just call the doctor directly– but when it came to getting confusing / conflicting advice, the person in charge of his case was instrumental in pulling all of his docs into a conference RIGHT AWAY to clear up the issue.

    My best wishes, my warmest thoughts coming your way.

  14. Comment by BurkeInTheOzarks | 10.30.2007 | 5:04 am

    Definitely get a different neurologist. We had a similar situation with my wife’s oncological surgeon. He specialized only in breast cancer surgery and was supposed to be well-respected, but he NEVER spent more than 10 minutes with us, even on the day he told us my wife had cancer.

    We finally asked for a different surgeon and were so happy that we did. Yes, we waited longer at his office before he would show up in the examination room but, once he was there, he would spend as much time as it took to answer all of our questions and help us explore all of our options. It made the wait worthwhile.

    The are other choices and you should keep looking until you find one you are comfortable with. It’s hard enough going down the path you are on – you definitely don’t need some yahoo who only seems to care about maximum bookings to maximize his paycheck making things harder on you.

    As always, you guys are in our prayers…

  15. Comment by Rob | 10.30.2007 | 5:17 am

    I don’t have medical advice, just want to let you know we’ll all pulling for you!!

  16. Comment by Willie Nelson | 10.30.2007 | 5:21 am

    Doctors are like Texas. Don’t mess with them. They think they are bigger than they really are.
    Its unfortunate that they forget we don’t do this everyday and want explanations for the seemingly mundane. I’m grateful for their help but not always the way some of them go about it. Our prayers are with you in all your trials, both physical and clerical.

  17. Comment by William | 10.30.2007 | 5:34 am

    Ask the most useful person in the loop (the recptionsist?) to get everyone on a conference call ASAP and invite you to attend even if you are only allowed to listen)
    Best wishes to the whole family

  18. Comment by Little1 | 10.30.2007 | 5:44 am

    i bite my thumb at you – silly doctors all!

    wearing my WIN jersey with pride tomorrow for all to see. Keep your eyes on the prize fatty clan!

  19. Comment by Bob | 10.30.2007 | 6:36 am

    I was thinking that video iPods are perfect for waiting rooms. Depending on the doctor, you can catch either a whole TV episode or a movie. What I failed to take into account is that the medical community has access to this same technology. Now doctors can watch iPods in their offices. This makes me sad, and a little envious. I wish I’d gone to med school so that I can sit back in my office, watch reruns of ER, and then step into a patient’s room after they’ve been waiting a long time. I know that they’re so grateful that I finally showed up they’re like a dog wagging its tail, so I can just spout off about “fibroid tumor syndromes” and be done. Then I’ll tell the bedraggled patient to go see the receptionist. If you don’t have insurance, we can work something out.

  20. Comment by MOM | 10.30.2007 | 6:44 am

    Reminds me of when I had been taking your infant sister to the doctor every six week and the doctor said after about the 8th visit; “I’m scheduling her for surgery. Do you have insurance?” I broke into tears and blurted out, “To you she may be just another case. Not to me. She is not just a a number not an insurance payment. She is my baby girl. ” That got his attention. So I suggest you write a letter to them and enclose a copy of your blog and a copy of all the comments from your readers.

  21. Comment by Miles Archer | 10.30.2007 | 6:49 am

    I haven’t read all the comments yet.

    Certainly there is more than one neurologist within driving distance. Fire the prick and choose another one.

    As to which thing to do – you and Susan are in charge of Susan’s treatment. You can make the decision as to what’s more important.

  22. Comment by Dino | 10.30.2007 | 6:51 am

    I can’t help but think of the movie Patch Adams. “You treat a disease, you win, you lose. You treat a person I’ll guarantee you’ll win.”
    Sound like the neurologist needs to grow a heart.

  23. Comment by chtrich | 10.30.2007 | 6:58 am

    Great story MOM.
    Dang Doctors! Can’t live without them and most of the time can’t live with them.

  24. Comment by | 10.30.2007 | 7:00 am

    I fully understand that the short answer is “I have no choice”, but I have no idea how you do it, man. My prayers continue for Susan, you, and your family.

  25. Comment by DNAtsol | 10.30.2007 | 7:08 am

    Spouse of “Fan of Susan” here. Although we have never actually been diagnosed w/ cancer we’ve had a few scares (one of which cost me a Ph.D) and I have to agree with the screeching to a halt, returning with my LBOD approach.

    I would make sure the neurologist stops everything and explains exactly what is going on (and do not ask nicely). Words along the lines of, “WTF is going on here! You come in here for 10 minutes leave and don’t tell us anything?! Get this straight, I want to know EVERY excruciating detail of what you did, are doing, plan to do, and why. You do not leave until WE are satisfied. we are not meat puppets, we are smart intelligent people and don’t particularly care for you ‘there, there don’t you worry your pretty little head about this complex medical stuff’ attitude”.

    We have found that approach simultaneously effective and satisfying for relieving our worry and perceived lack of control/tension and receiving more effective care.

    best wishes

  26. Comment by bikemike | 10.30.2007 | 7:13 am

    fatty, use your incredible cycling pull and call Lance direct.
    or someone at his nice foundation. maybe they can still help.

    God bless you and Susan.

    turn that frustration into the super-fatty we know you are.

  27. Comment by Pammap | 10.30.2007 | 7:17 am

    FC and Susan, I’m sorry for your having to go through this frustration. In reading Lance Armstrong’s story, the thing that jumped out at me was how he took control of his own care. HE called the shots. I agree with the comments above about needing someone to coordinate care. Unfortunately, it will probably have to be you to a large degree.

    Also, if you feel like you are riding a merry-go-round, you probably are. Ask all the questions you want and if the doc is not willing to take the time, find a new doc. You simply don’t have time to waste on someone who is not contributing to Susan’s health and betterment. You need to know that they are truly on your team.

    Just my two cents, but maybe enlarge your vision regarding “regional” medical options. There are a lot of good cancer treatment centers around the country and the cycling community is a small world spread out all over. I know in St. Louis, you’d be welcome at my home if you needed to go to Barnes Hospital, which is Washington University’s cancer center, for example. I’m sure with your supporters from this website alone you’d have options in many other cities.

    My prayers remain with you and Susan.

  28. Comment by Gillian | 10.30.2007 | 7:20 am

    You forgot to mention that if, on one occasion, you were to arrive 15 minutes late, your appointment would have to be rescheduled because the doctor cannot wait and has lots of patients to see and his time is expensive and precious and blah diddly blah.

    Here’s my advice. You should both be naked when the neurologist walks in the room at your next appointment. Perhaps have something striking written on your stomachs (or those stunning quads, FC) in body paint. Maybe a good knock knock joke, or perhaps a caricature of a high ranking political figure. He’ll never forget you after that, and you may even stun him into sitting down for 3 seconds.

  29. Comment by BotchedExperiment | 10.30.2007 | 7:23 am


    The reason we don’t have socialized medicine is so there will be competition right? I say drop ‘em like a. . . botchedexperiment on a climb.

  30. Comment by Frank | 10.30.2007 | 7:31 am

    I say complain!! Loudly!!! That is completely unacceptable. You should be totally informed and made to feel like you are included in the decision making process!

  31. Comment by DocB | 10.30.2007 | 7:35 am

    I lost a close co-worker to cancer just last week so this is personal to me. Let the frustration and anger you are feeling out at all in the medical team. They OWE you a complete explanation.

    Like Pammap, I will add my home the list of available places if Nashville, Chattanooga or Atlanta offers you better options.

    You and Susan (and the kids) are never far from my mind. I am constantly amazed at the strength and grace your entire family shows under such difficult circumstances.

    Keep fighting and WIN!

  32. Comment by Orbea Girl | 10.30.2007 | 7:37 am

    Unfortunately, Doctors (like a lot of professionals) are used to people treating them like gods. But they’re not. They also forget that patients are “customers” who should be treated with compassion, not condescension.

    I’d shop around for another neurologist and would echo the comments made by others that you need to have a team-orientated, holistic approach to Susan’s condition. In addition, you both need to feel that Susan is receiving the best available and most appropriate treatment.

    As always my thoughts and prayers are with you and your family.

  33. Comment by akatsuki | 10.30.2007 | 7:46 am

    I would tell him that you find his behaviour unprofessional and discourteous, that you expect better communication regarding why things happen, that you expect him to have some manners before scheduling you for appointments, and that while he got your oncologist to cover his ass this time, that you expect an answer explaining why it is more important to see an orthopedist than your oncologist and why the appointments could not have been reconciled.

    It amazes me that people bottle up this sort of thing for so long and then when they do complain it is always extreme instead of just making clear what the expect from their doctor from the beginning. And believe me, courtesy is rewarded in these situations, people who come in with hostile attitudes receive much worse care regardless of what they think they are accomplishing.

    Appointments do run late, that is just the nature of the business. If you don’t want to wait, then frankly you would have to pay a lot more for your medical care, cause the doctor is under every incentive to overbook much in the same way as an airline. I left the field because I found the ethical compromises to be too much all of the time, and unfortunately that is what it takes to make a decent living as a doctor nowadays.

    @Pammap- As for Lance’s care. Let us just say that from what I have heard from doctors at his hospital, he was extraordinarily hostile and rude during his care. Sure he survived, but I don’t know if it is worth it to set up such an adversarial relationship with your physicians when you are going to have an ongoing relationship and you don’t have the blunt hammer of publicity to use.

  34. Comment by bikemike | 10.30.2007 | 7:47 am

    also, on a side note, maybe this neurologist was a bike shop employee at some point in his life. that would explain alot.

  35. Comment by Clydesteve | 10.30.2007 | 7:51 am

    I have to agree with those who say to take charge. My brother left London and came to NYC, and interviewed several oncological teams before selecting one, becasue the care he first received in London was not cutting it.

    Lance, living in Texas, was treated in KC, if memory serves, and has followed his oncologist to Oregon for checkups. Considering what is at stake, SLC, Denver, whatever, is not too far to go to find a neurologist.

    That advise was probably worth what it cost. This is where I can offer something of value: You guys are still in my prayers.

    Do Live STRONG!


  36. Comment by Beth | 10.30.2007 | 8:06 am

    First I wish you both the best in this battle.

    My first reaction to this story is hope — I am hopeful that two doctors who advise a cancer patient to allow chemo to take a backseat to orthopedic treatment is a good thing (i.e., the cancer is highly treatable). I hope that turns out to be the case.

    Like others, I would make the doctors commiserate with you and tell you what the hell is going on. You are paying them; they answer to you. You are a consumer of their services; you have a right to know the answers to all of your questions and especially after waiting a discouraging 1.5 hours to talk to the doctor, you have every right to take as much time as you need. Even if you don’t know what the “right” questions are to ask at the time of the appointment, I always start with a “what does that mean for my treatment” or “why are we taking this direction”, which then leads to other questions, until I am satisfied.

    For those who are not in the U.S., the health care system here is broken. A lot of the fearmongering around a universal health care system is scaring people into believing we will get worse service than we do now and/or access to certain specialties will be scarce. As you can see by the above post, we have a those issues already. By and large, I think most people are highly confused by their health care experiences and the attendant insurance issues that go along with them. I happened to have a mother and sister in the clinical side of the health care industry, and I worked in a pharmacy benefits management company for a couple of years and a major regional health care system for a year, so it makes more sense to me. Even so, it is incredibly confusing just the same.

    Not to add more stress to your roiling cauldron, Fatty, but be sure to review the bills that come from all the health care service providers for mistakes. Mistakes are extremely common and hard to uncover, but if you see something that just doesn’t look like it belongs, ask the billing dept.!

  37. Comment by kellene.. | 10.30.2007 | 8:11 am

    Yes they are the doctors, but you are not their victim. Call the shots, demand what you need. Talk more, question more and demand the time you have waited and paid for. We get use to being compliant and letting them decide all course of action. When dallas was in the hospital for kidney failure and declining rapidly it had been over 24 hours with no Dr. visit…very busy I guess. Rocky called their office and threw the ultimatum down…”Be here to see and evaluate my son in the next 2 hours or i will be to your office in 2 hours and it will not be pretty! I will cause a ruckus that will be unbelievably embarrassing!’ Amazingly enough one of the Drs. from that practice showed up. I guess the squeaky wheel thing is real.
    Sorry, there are no good answers.
    We will be here to do whatever we can.

  38. Comment by sans auto | 10.30.2007 | 8:11 am

    I’m with Botched. The idea is that the free market drives our medical system, except most people don’t question referals, they don’t leave doctors who have provided bad service for years, and they wonder why they still get bad service. Unfortunately, poor service is becoming the norm, so you take what you can get. Don’t put up with bad doctors, if there is any other option, take it. Dont pay a guy to give you poor service.

    More importantly, your family is in our prayers. If you need anything, even though you don’t know me that well, I’m more than willing, I’d be eager to help.

  39. Comment by Marrock | 10.30.2007 | 8:25 am

    After doctor’s mistakes cost me both my parents and outliving two MDs myself, I’ve pretty much giving up on the profession as a whole.

    FC, still sending positive vibes your way for both of you and remember, sometimes you need to kick some ass, so if you need to stand on some doctor’s neck you know you have a busload of folks that will hold your coat for you and watch your back.

  40. Comment by cheapie | 10.30.2007 | 8:31 am

    botched…i’m confused. are you the droppee, or the dropper?

  41. Comment by eunicesara | 10.30.2007 | 8:50 am

    No wonder you’re such an inspiration – your mom is way cool.
    There is a fine line between assertive and hostile behavior, and the line is in the eyes of the perceiver. So, what may be well justified assertiveness on your part might be mis-perceived as hostility by the receiver. But they’d have to be a heartless roboto-doc not to share a smidgen of understanding.
    In the mean time, to address your immediate needs: there’s a beautiful waxing moon high in the sky, just perfect for howling. I think you need to pack up the family, drive to the highest driveable spot in your mountain-biking kingdom and HOWL! Scare the coyotes. Let it out.
    Then, take charge.
    Continued blessings and best wishes.

  42. Comment by Jason | 10.30.2007 | 8:52 am

    Oy! My wife and I went through a similar series of hassles with docs during her second high-risk pregnancy. We finally engineered a meeting with the administrators of the medical group and got some satisfaction. Then we switched docs anyway.

    Sorry you’re having to go through this.


  43. Comment by TheGroundHurts | 10.30.2007 | 8:54 am

    Sound like you need to start looking for a different neurologist; at least get a second opinion and see if that doctor is any better. At a very minimum, make sure you really demand explainaitions when he gives you these recommendations with no suggestions to back it up. Ultimately it’s up to the patient to make sure the doctor answers all your questions, and gives you a good explaniations of why hes making these recommendations. Theres nthing wrong with making it clear you’re a little irate. Of course, if the doctor has good communication/ interpersonal skills you wont have to beg for answers, but not all doctors are like that, certainly not Susan’s.

  44. Comment by Fritz | 10.30.2007 | 8:57 am

    I’ve lost family members to cancer. Some doctors are amazing, some are not. It looks like you have the misfortune to get those with horrendous bedside manner. Know I’ve been pulling for you and Susan, Fatty. Though it’s not quite cancer, my wife and I are going through some similar issues regarding her health. Best wishes for your family.

  45. Comment by Charles | 10.30.2007 | 9:05 am

    I’m not here to take the side of physicians because I’ve had my personal “run ins” with pathetic ones. That said, there are many good and great ones out there. Find the ones who will work for Susan and you! In the meantime, know that all specialists deal with a little thing called reimbursement – either through private payers (insurance) or the government (medicare/medicaid). Because of the pressure to lower reimbursement levels on therapies provided, doctors and their practices have to INCREASE the number of patients they see to make up the financial loss and keep their clinic doors open. No wonder our health care system in the U.S. is in need of reform.

    Best of luck as always with multitudes of good thoughts and prayers, too.

  46. Comment by Morgan | 10.30.2007 | 9:09 am

    Let your oncologist and neurologist go visit the proctologist and you and Susan visit the mixologist for a libation. I love it when Mom gets into the fight. Don’t mess with her cubs!!

  47. Comment by Dawnawanna | 10.30.2007 | 9:13 am

    I’ve got a friend in the middle of the 4th bout of cancer (all different primary cancers). She basically interviewed several different oncology groups before deciding who to go with. You can do the same thing for the neurologist.

    You don’t really need any of our advice, You guys are doing as great as you can with this.

    Hang in there and don’t give up! All of us are watching and pulling for you guys. I’ll be wearing my Win jersey on the weekend ride.

  48. Comment by Josh | 10.30.2007 | 9:18 am

    I have just two things you probably have enough off: advice and sympathy.

    First: Visit another neurologist. Most doctors only really consider a case the first time they see it, and just warm it over each additional time. A second opinion is not just starting over, it’s getting a fresh mind to really attend to your problem.

    Second: Just reading this makes me feel some pale shadow of the frustration and anger you feel. Life has given you a stronger headwind than many of us, may you both have the strength to keep turning the cranks.


  49. Comment by Kris | 10.30.2007 | 9:26 am

    Fatty, kudos to you for penning such a calm post – given what you went through you’re either Gandhi reincarnate or you were infuriated by what you went through and toned down the post for our benefit.

    If I were you I’d look for another neurologist. It sounds like getting a second opinion is needed anyway. I know Utah Valley isn’t loaded with neurologists, but I drive to Salt Lake Valley rather than deal with that (suppressing name-calling) doctor. But maybe this doctor is worth sucking it up for. Susan’s health is most important so do what you must, but in my experience, doctors that treat their patients poorly are not the best doctors on the medicine front either.

    When doctors treat medicine like a business, so do I. Once I scheduled an early morning appointment (thinking the doctor couldn’t be backed up) and after waiting for an hour I told the receptionist I had to go to work. When she asked me when I’d like to reschedule I told her I would not be coming back because I was going to find a doctor who did better at keeping his appointments, and I left. The office manager called me and said they had discussed the issue of staying on schedule and had made several changes. She assured me I would not have to wait more than 15 minutes for my next appointment. I liked the doctor so I gave them one more shot. I got in to see the doctor in less than 15 minutes. And they had posted signs in the examination rooms asking patients to limit their visit to ONLY what they had scheduled (i.e. if they came in about persistent headaches, don’t go on about every other ache and pain). I was impressed the doctor and his staff reacted positively when they could have just blown me off as an anomaly. So, people, don’t take crap from doctor’s – you’re the customer / consumer – give them heat when they treat you poorly.

  50. Comment by Pammap | 10.30.2007 | 9:39 am

    akatsuki…you read my words too narrowly. I didn’t say to be exactly like Lance; I am not speaking from first-hand knowledge, just what I read in his book. My words were meant to focus on the broader subject of questioning the doctors and thus gaining a little more control over your own medical care. I was trying to be sparse with words; guess I didn’t explain well enough.

  51. Comment by Philly Jen | 10.30.2007 | 9:45 am

    Fatty, Susan,

    I’m so sorry to hear that your doctors are assoholics. Nobody deserves that kind of treatment, period.

    I’m going to go way outside the box here and suggest, if you’re wanting more aggressive treatment with some of the best treat-the-patient-like-an-actual-human-being care in the entire world, that you seriously consider visiting the Mayo Clinic. My customary joking aside, I work as a user experience professional in IT, I’ve previously worked at an NCI-designated cancer center, and I’ve happily watched my father survive prostate cancer. From each of those facets of my life, I would give the Mayo people in Rochester my strongest possible endorsement. (All my comments specifically pertain to the original Minnesota location.)

    Mayo is deeply committed, as very few institutions are, to making medicine work from the patient’s perspective. Given the number of international visitors they have, they are completely set up for out-of-towners to have a well-coordinated experience from start to finish. Everything from greeters at the buildings and guides to personally escort you, to comfortable, humane layouts of the examination rooms, to smart electronic links to the world outside the Mayo complex — they’ve got it covered.

    For example, when my father was treated at Mayo, during his initial check-in, the intake staff presented him with a completely personalized schedule fresh out of their desktop laser printer that detailed every appointment. (This was nearly 10 years ago! That’s how far in front they are.) The appointments were coordinated in logical order — if Doctor B needed to see results from an appointment with Doctor A, then Doctor A appeared earlier in the schedule. The results were entered by Doctor A into Mayo’s computer systems, and Doctor B retrieved them electronically during the subsequent appointment. So logical, so obvious, yet anything but a routine practice elsewhere (as your experience sadly demonstrates).

    My father’s comment after his treatment was that he could see why some of the most famous and important people in the world came to Mayo; he was astonished, delighted, and inspired by the feeling that he was receiving an equivalent level of care. Bottom line: They treat *everyone* like someone important, because you are.

    And so, as a Minnesota native, as the daughter of a healthy cancer survivor, and as someone who knows excellence in “user experience” when she sees it, that’s my four-letter word of the day in response to the inexcusably insensitive treatment you’ve received: Mayo.

    [It's a sandwich spread. It's a Basque climber. And it's the best f-in' oncology patient care on the planet, bar none.]

  52. Comment by KT | 10.30.2007 | 9:49 am

    Must… suppress… rage…..

    Deep breaths…. count to 10… thousand….

    Ok. I don’t really have anything to add, except: a)second, third, and fourth on the idea of getting all Susan’s health care professionals in a meeting so everyone (including you guys) can be on the same page. b) second, third, and fourth the idea of interviewing other doctors. c) second, third, and fourth the idea of offering up housing if you decide to come to Portland, OR for cancer treatment. I’ve got no stairs in my house, Susan can sleep on the sleep-number bed, we’ll take the aerobed on the floor in the other room. Or, we’ll help cover your costs for staying somewhere closer to the treatment center.

    And d) second, third, and fourth the karmic redirection action.

    Oh, and Elden– use your anger for good, not evil. Use it as an energy source to get things changed, fixed, done, for Susan.

  53. Comment by jill | 10.30.2007 | 9:53 am

    This is terrible. To have your lives in the hands of people who treat you like children. I agree with others that maybe it’s time to find new specialists, second opinions. But I understand how this “free market” system works, and I understand it’s not usually that easy.

    Please give Susan my best. You and she are tough as nails. Good luck!

  54. Comment by mark | 10.30.2007 | 9:57 am

    Fatty–this makes me sad to hear. I just had knee surgery yesterday, and the care I have received from my orthopedist and his staff has been outstanding (Mike Curtin at Intermountain Orthopaedics in Boise, in case anyone needs a good shoulder or knee doc). He has taken the time to sit down with me and discuss the various options, and in general has made me very comfortable with the situation. Not to mention less than 24 hours later I feel as well as I could possibly hope for.

    There are good docs out there–take some time to find them, so that Susan gets the care she deserves. Our prayers are with you.

  55. Comment by Jen | 10.30.2007 | 9:59 am

    You have only one life, you have only one wife …. despite the hassle, the pain, do not hesitate to go somewhere in the country if you must.

    I understand the lack of time to search for other doctors, the forever agony of waiting for appointments days and weeks away, not knowing if this doc will be any better.

    I can only hope you find a team that can treat Susan with the respect and care due to her and every other patient desperately fighting for their lives.

  56. Comment by Boz | 10.30.2007 | 11:43 am

    Philly Jen is so right, the Mayo clinic is the A#1 place to be treated as a person, not a number. My step daughter had a brain tumor at age 6, and the local hot shot neuro, who’s ego is the size of Lake Superior, did a preliminary surgery, couldn’t remove it all, and suggested the Mayo. 3 days later, the mission was accomplished, and 7 years later, she is tumor free. Bi-annual check-ups have been clean. You really should make the trip. I’m sure it would be worth it. We have a happy, healthy 13 year old to show for it.

  57. Comment by Azriel | 10.30.2007 | 11:57 am

    Three types of people that I don’t trust
    1. Doctors
    2. Lawyers
    3. People who write software

    Does that mean I don’t trust myself, most of my friends and large parts of my family? Well, if I have to be consistent, then yes.

    You have the powers of the web at your fingers to find stuff, command hoards of internet geeks/cyclists. Use them.

    I believe in gut feeling. You as a fatty have got one (gut) (at the end of winter). I have one (always). Use it. Go with your gut feeling. If you want to use the LBOD on them – this is the time. Use them.

    If you want to torch their houses, families, neighbourhoods – you’re sick.

    I’m with Lins.

    Health and best wishes
    walking around with 10 pairs of x’d fingers for you’s
    sending a good gut feeling
    other side of the ocean

  58. Comment by craig | 10.30.2007 | 12:32 pm

    Here’s what I’d do:

    1. Find a new neurologist
    2. Make an appointment with the new neurologist. If you like him then . . .
    3. Write a new post that prominently features the name and address of the old neurologist, and then detail every single slight, misstep, and long wait the old neuroligist put you through.

    Then the next time a prospective patient Googles the old neurologist, you’ve hopefully saved them from going through what you’ve been through.

  59. Comment by aussie kev | 10.30.2007 | 12:35 pm

    i feel shattered, i have never cried at work before, but have had to close my office door.
    buy yourself a portable dvd player, 2 sets of headphones, popcorn and coke – then you can say “lets go to the movies, and after the movie we can see the doctor” !!, it may make the 1.5 hours a bit easier to endure.


  60. Comment by Mark W | 10.30.2007 | 12:59 pm

    I have nothing better to offer other than my thoughts and prayers. I’m sure you know the best course of action – all you need is a little bit of reassurance that you are on the right track.

  61. Comment by rexinsea | 10.30.2007 | 1:20 pm

    Fatty, Susan:
    Best thoughts and prayers to you both. It seems to me the lack of clear communication is more shocking than the 1.5 hour waits. I’ll echo other comments:
    * You own your treatment and you should have the feedom to tell your doc’s just what you want.
    * If an alternative schedule/priority is recommended; you should not have to ask for the explanation. They should offer it proactivly.
    * If you feel so insipred, call you doctor, tell him why you are firing him and go find yourself somebody who runs thier practice better.

    Best of luck and best wishes!

  62. Pingback by | The RocBike Review » Links Of The Day: 30 October 2007 | 10.30.2007 | 1:22 pm

    [...] Doctor of the Year [...]

  63. Comment by woogie | 10.30.2007 | 1:36 pm

    I expect to take some heat for this opinion but here goes.

    Doctors are like any other people in the world, some good, some bad, some you like, some you don’t.

    I work with people that I think are great at what they do, but I don’t particularly like them. I respect their abilities but have no desire to socialize with them outside of work. I work with other people who I’d pay not to work they are so bad at what they do, but as people are really great.

    So while your neurologist is rude, and inconsiderate and lacking in any personality whatever, weigh that against what he does as a professional. Is a bright and shiny personality going make up for skill and ability you may give up?

    I trust that what ever you decide it will be the best for you and yours. Keep doing the important work of being by Susan’s side through all of this.a

    Best of luck.

  64. Comment by Powerful Pete | 10.30.2007 | 1:44 pm

    Hey Fatty,

    As one of the Italian contingent pulling for you (I hail from Rome, Italy), my advice is to fire the bugger. Oncologist & neurologist telling you that another referral is more important than chemo with virtually no explanations?

    Write to me in private and I will teach a few choice Italian phrases that even a non-Italian speaker will understand perfectly. Trust me, I am Italian!

    I came across your site as my dad is fighting colon and bone marrow cancer (and we are both avid cyclists!).

    F**k the doctor and get someone you can deal with. In our case we ended up in a public hospital (no great shakes) but with an oncological team that my dad is comfortable with.

    The key, in my very, very, very humble experience is finding a medical team you and especially your spouse trusts.

    Forza e coraggio.

  65. Comment by KatieA978 | 10.30.2007 | 2:32 pm

    Why are some doctors absolute idiots??

    I agree that chemo would be the best course of action, rather than going to see an orthopedist – I mean, is that appointment supposed to reduce the tumours, rather than the chemo? What is the actual purpose of the appointment anyway?

    I agree with rexinsea – Susan owns her own treatment, and should do what she feels is right for what she’s going through, and based on information from different sources. Some doctors have no idea how their demeanour and lack of communication effects people, and leaves you in the dark about what is happening to YOU, not to them. Next time you see any doctor, just pepper them with questions about WHY they’re doing it, and WHAT it’s supposed to achieve – that way at least you’ll get some idea of their direction and what advice you should follow.

    All my thoughts, prayers, spare karma, good wishes and love heading your way. (Also a box of stuff that I told you I was sending, but had slackly forgotten to do so until today…)

  66. Comment by JP | 10.30.2007 | 2:50 pm

    As a neurologist myself, I agree with all the other posters who have suggested that you give up on your neurologist. From what you’ve written, you may well have had good diagnostic services from him (or not), but what can he do for Susan from here forward? Pain meds? With some luck the oncologist can prescribe those.

    There are lots of reasons a doctor might treat you the way this neurologist did (pressure to see more patients per hour, discomfort in being unable to cure to name two), but they really don’t matter. Unfortunately, you’ve slipped into the biggest void in western healthcare: communication. Doctors have no concrete incentives to talk with patients, talking’s not a fun, sexy, high-tech procedure, and doctors are trained to think that the only way they help patients is to prescribe drugs or do operations.

    But none of that matters. What matters is that you and Susan understand what’s going on, and why decisions are being made. Without that, you can’t have any confidence in her care. Not to mention that the way you’ve been treated is, quite simply, dehumanizing.

    So, my humble suggestion is: call the oncologist’s assistant and ask (a) if the oncologist could call you back and explain just what they think an orthopod could do to help and why it’s a higher priority than chemo, and (b) if not, could the assistant find out those answers and communicate them to you. Also, ask if the Oncologist thinks you need an ongoing relationship with a neurologist and, if so, to recommend a good one this time.

  67. Comment by Mike from Melbourne | 10.30.2007 | 2:56 pm

    Time for a new doctor I think.

    Best wishes to you all. Keep fighting Susan and win.

  68. Comment by Rebecca | 10.30.2007 | 2:59 pm

    I understand why you have stuck with the neurologist through all this (seeming) nonsense. We are raised to respect and revere the medical profession, never questioning. It is so incredibly hard to shift gears and risk the change.

    But for you it is time. I suggest you run (or ride), not walk, away from this situation.

    I’ve been there, dealing with a surgeon that wanted to do the minimum amount of work. He made it sound like that was all I needed. But as Susan can confirm, a little lumpectomy is not what late stage 3 breast cancer needs! I had to wait two weeks, but I changed my entire course of treatment by going to Dana Farber in Boston.

    I can’t say what is close to you, but even if you have to drive 2 hours one way (and I did every week for four months), you need to see the right people to treat YOU. Most of the all-in-one cancer facilities have near by host families that will offer you a place to camp out for a few days as you get switched over. Contact their support department for the point of contact.

    I still panic when I think about the possibility of my cancer spreading. I can still end up going through the trials you and Susan are dealing with. It reminds me that tomorrow my bi-weekly chemo infusions is chump change.

    And I take a moment to send some of the excess positive vibes in my life (I swear too many people are thinking good things about me!) in your direction. Stay well and keep us all in the loop. If we need to up the quantity of good vibes, we need to know!

  69. Comment by AllisonW | 10.30.2007 | 3:20 pm

    yikes! it’s the oncologist’s call about chemo and whether to skip it, not the neurologist – and he should know that. if he can’t be bothered to discuss it with Susan, you SO need to be referred to a new one! it’s sounds to me like he’s written you guys off. don’t ever go back.

    thinking of you all.

  70. Comment by Walter | 10.30.2007 | 3:22 pm

    Elden –
    So sorry to hear about your experience — we can certainly relate to the 1.5 hour wait to see Leslie’s oncologist, but in our experience, the rest of your story doesn’t make much sense to me/us. I’m in China right now, so don’t have time to leave a more thoughtful response, but look for an email in a little bit.
    Hang in there and keep on fighting!

  71. Comment by Tom Fort | 10.30.2007 | 3:50 pm


    You need to take charge of Susan’s health care (since you’re doing it for her). The days where we sat quietly and took the doctors advice never should have existed. You need to go into every appointment with a plan –preferably written out– of points you need to address, questions that need answering, what you don’t understand, etc.

    You have two situations to deal with: the immediate one of how to deal with this neurologist, and the long-term one of dealing with Susan’s future medical care.

    Re. the immediate one, you need to address your shoddy treatment with the neurologist, and do it now. It could be a letter, an email, a phone call, whatever you’re most comfortable with. If it’s a phone call, script out what you want to say beforehand. You need to express your frustration at what has happened, with clear examples, and get an explanation point-by-point for your concerns. If you call, you can’t necessarily expect to immediately commandeer half an hour of his time, but ask if you could stop by at the start of work in the next day or two or if he’d be willing to answer some questions by email. If you don’t get satisfaction, go higher up the food chain and include the guy’s boss or his practice’s owners, his department chair, whatever makes sense. Even complain to your insurers if you aren’t finally get the respect and answers Susan deserves. Be polite but assertive, and give clear examples with dates and times of how you think the appointments/treatments/decisions were unsatisfactory. You can only change this guy’s behavior by your action, not by hoping it will be different next time.

    Re. the long term, you may well be best served by changing neurologists, but the comment re. a good neurologist with a poor bedside manner may be true. From now on, take charge of Susan’s health care, and do no let a doctor walk out on an appointment if you are not satisfied.

  72. Comment by spinecho | 10.30.2007 | 3:52 pm

    I don’t comment much, but the behavior of that neurologist is shameful.

    If you can’t have compassion for you patients, then you don’t deserve to take care of people and should get the @!&!!! out.

    Grab the oncologist and get him to take ownership of the problem and fix it — obviously the neurologist is a loser.

    My prayers to you both

  73. Comment by Patrick from Astoria | 10.30.2007 | 4:15 pm

    First, if you get ten minutes, change the heading under which you file this. This is anything but “pointless rambling;’ this is life and mortal struggle and about as significant as it gets.

    Second, big strong seconds for the coordination and assertion drive. These people have to work as a team and understand the intricacies of the situation, and you and Susan MUST make them understand. It’s like engineering, it’s like design, it’d be like a damn Thanksgiving get-together if it wasn’t so serious. And I don’t care how many patients they have or rounds of golf they schedule, this is VITAL. Make them do their jobs, and occasionally remind them why they’re doing this in the first place.

    Keep on them, keep going, keep living. We’ll be here supporting.

  74. Comment by Barb | 10.30.2007 | 4:20 pm

    I echo JP’s comments: you both need to understand why the orthopod was recommended (to stabilize her pelvis perhaps?) and you need to make the neurologist understand that YOU don’t understand his rational. After that, if there is no satisfaction given, look for a referral for a new one if a neurologist is actually needed. Is there a Breast Cancer Advocate at your hospital who can help coordinate Susan’s care? We have one in our hospital, in the Cancer Social Services department. They are amazing people and can cut through red tape and confusion like it was nothing.

    Good thoughts to you both.

  75. Comment by Ian | 10.30.2007 | 5:23 pm

    I am a physician. I work in Canada. I am very sorry to hear you had a bad and undoubtedly frustrating experience. Reading between the lines of what you have said, it sound like you may not even need a neurologist for this particular issue, the problem may be more orthopedic than neurological. I would suggest that you confirm with your oncologist’s office that they indeed want you to skip chemo to see the orthopedist and if they reiterate that you should, book a follow up appointment with the oncologist for a slightly later date and go and see the othopedist as recomended. At your oncology follow up get them to put it all together for you. A conference with all your care providers is probably unrealistic. Hopefully your oncologist will coordinate all your care and ensure that you get whatever other specialist help you may need. They can also hopefully make up for bad communication whenever you run into it, not that you should but you will. If you are worried it is OK to ask for second opinions but also listen to what the first one says if you trust them. I hope this helps a little and I wish you the very best of luck in negotiating what is a very frustrating system at a very stressful time.

  76. Comment by Grams | 10.30.2007 | 6:03 pm

    Listen to your mom. Also, I don’t know who your oncologist is, or whether or not you are wanting a new one. I can HIGHLY recommend my own brother, Roger Hansen. He is someone who will listen, and maybe a new doctor for a fresh opinion would be helpful. If you have my email, contact me and I will give you his work number, if you are interested. And did I mention, Listen to your mom? In case you missed it, listen to your mom.

  77. Comment by Dobovedo | 10.30.2007 | 6:34 pm

    The squeaky wheel gets the grease.

    I find that being totally unreasonable, and throwing fits and cursing and swearing, while it may make one look like a complete a-hole at the time, tends to get more direct results. It worked with my cardiologist and his I’m-only-here-for-the-paycheck staff, back before I became a born-again roadie.

    You can apologize later, after the needs are seen to and the questions are answered.

  78. Comment by Me | 10.30.2007 | 6:37 pm

    My hopes and prayers are with your family. Only you could make me laugh reading about such a grim experience.

  79. Comment by Jodi | 10.30.2007 | 7:01 pm

    yeh i like that JP….

    as overwhelming as it may be to consider getting a new guy on the cancer-fighting-team…it can’t be as overwhelming as the notion of sitting in this man’s office one more time. I would be surprised if there was no treatment advocacy program or help center….there must be. There has to be. I will help you find it. Give me a few days, and I’m going to have some big ideas, names and phone numbers for you.

    In the mean time – I know Halloween is Susan’s favorite holiday. Enjoy it the best way you can….with each other and your weirdo neighborhood kids.


  80. Comment by Maile in Florida | 10.30.2007 | 7:15 pm

    Wow. That whole situation is bad. My sympathy, especially if your insurance is like mine, and makes it very difficult and time-consuming to change doctors.

    I’ve sent good wishes and kind thoughts winging your way.

  81. Comment by Big Mike In Oz | 10.30.2007 | 7:55 pm

    I’m usre every ounce of positive energy that’s available is directed at Susan right now.

    So to balance the forces of good and evil I’ve just got back from a bike ride (yes, Pink Lemonade – it alone does over 100 miles a week). I used the power of anger today to climb a hill I haven’t successfully climbed since 1990. It was for a good cause. The local private (read rich person’s) hospital is on top of that hill.

    It’s a wonderful place, so helpful… they mark all the car parking spaces with things like “Head Neurologist”. I’m sure he’s in the auto club, but going home time is their busiest time so he’ll probably have to wait about 90 minutes (just like you did). That’s plenty of time to ponder the note I left…

    “Dear Mr Neurologist
    One of your colleagues in the USA upset one of my colleagues in the USA.

  82. Comment by DrCodfish | 10.30.2007 | 8:08 pm

    Oh man, I remeber this drill too well. And you are right to think that there are times when all the ‘ologists’ at times seem to get overwound on their own specialties and sort of forget that the first order of business is taking care of the first order of business … that is doing the immediate thing to fight the cancer They sometimes think a little too long term and forget to think about short term issues.

    Keeping track of all the appointments, with all the different specialists and the medication regimes and what they are supposed to accomplish … I know how wearing that can be, and you are not even the one that is sick!

    And then there is doing your own research on the net, as much to fill in the knowledge gaps the docs leave and also in the hope that you might turn something that they have either neglected or were not aware of. This can cause some of the docs to get defensive which is another curve that can be hard to manage.

    My heart is with you, keep on being the informed consumer of health care, it is the only way to get the best possible care.

  83. Comment by Daniel | 10.30.2007 | 8:19 pm

    Fatty, man, the doctor came up short, way short. It happens again and again and I’m deeply sad that it happened to you and Susan.

    That hapless doctor didn’t begin to know how to talk about the fact that the cancer was spreading and there wasn’t a thing he could do about it. You feared it and he knew it but he couldn’t find a way to say it, not, at least, in a meaningful way. So he ordered a test and kept you waiting and then capped it off with a lame encounter. It wasn’t the waiting that hurt so much or the inconvenience of the test. It wasn’t even the brevity of the visit. It was the lack of human connection. Is it possible to teach how to make that connection? I’m not sure you can. Some people just know. Most of us don’t. Here and there you meet a doc who, in the face of relentless disease can rise above the limitations of his profession, his training, his limited time in the face of endless obligations, his weariness. Mostly you don’t.

    Fatty, I’m a neurologist. I’m not sure I would have or could have done better but after reading your blog I deeply wish I could have been there, if only to say man, its looking bad and my heart is with you.

  84. Comment by Curt | 10.30.2007 | 8:26 pm

    I’ve been there with my dad. After a close brush with death due to no less than three different life threatening issues, we quickly found that all the doctors he was seeing had blinders on and were only seeing THEIR part of the puzzle. We sat in on most of his appointments and actually caught them trying to put him on meds that the other doctor had said would kill him! (one wanted him on blood thinners for a heart problem, the other wanted him to have THICKER blood because of a bleeding problem in his head).

    We came away from the whole thing with the realization that WE and we ALONE could be the advocates for his (and, when we need it our own) health care.

    A doctor is just somebody who has studied medicine. He/she is NOT necessarily wiser than you, and is certainly not more well informed about Susan’s specific case.

    Hang in there. I’m wishing Susan the best every single day.

  85. Comment by Mike M | 10.31.2007 | 1:48 am

    gather your cyber friends for financial support ( count me in ) and get your wife to the mayo clinic right away. Now!

  86. Comment by Bitter (formerly known as Lissee) | 10.31.2007 | 1:04 pm

    Hi Fatty,

    The one thing I learned while watching my sister (age 24) die from cancer over two years, and the one year I worked for a genetic disease non-profit .org, is that you need to be your own advocate. Dr’s are too busy and see too many people to have an overarching view of each individual’s situation.

    Let me repeat that again.

    You need to be Susan’s advocate.

    (Sorry if this ends up being an aspritzen, I don’t think my earlier post went through….)

  87. Comment by Karen A. | 10.31.2007 | 2:51 pm

    PLEASE! Do us ALL a favor, and publish the names of these bozos… just in case there is anyone keeping an eye on your blog with the unfortunate luck to be thinking of dealing with these folks too… I guess they could sue you – but so can anyone, for virtually anything… do us and yourself a favor – especially if you are changing doctors because of this!

  88. Comment by Mark | 10.31.2007 | 10:51 pm

    Fatty, I understand from previous posts that you were raised Mormon, but I wanted to share this inspiring story of a Buddhist who has been fighting cancer for nearly 8 years now. Please don’t take this the wrong way, but becoming angry is the worst thing you can do in this situation. Anger is an inner poison, and as such can only make things worse. This is a time to keep a peaceful mind, a loving mind, a mind of compassion for all living beings (even your neurologist, who is most assuredly suffering as well). Maintaining these beneficial minds may be easier said than done right now, but there are many simple meditation practices that could help, and you do not need to be Buddhist to engage in them. I know I’m a total stranger, but I practice and teach Buddhist meditation, and would be happy to give you anything from a short mantra to detailed instructions on the practice of taking and giving. Drop me a line if you’re interested — I promise I won’t try to convert you or anything!

    Praying for your happiness.

  89. Comment by Mark | 10.31.2007 | 10:53 pm

    I guess the Website address doesn’t come through:

  90. Comment by SpikeBlue | 11.1.2007 | 7:41 am

    I was diagnosed with a brain tumor 3 months ago. My view of doctors and our healthcare system will never be the same. We got a rushed phone call from my primary care doc to tell us the news. The next day, when we tried to follow up in person, we found out our doc was on vacation and it took us all day (and our pediatrician to intervene) to actually see a person about the diagnosis. All we got then was the print out of the MRI report and the comment “this is way over my head”. Great – thanks.

    We, too, go through the minimum 1 hour wait to see our ___________ (you can fill in the title here, it doesn’t seem to matter when you are seeing specialists). I recommend:
    - A portable DVD player. If you get really annoyed, turn up the sound and sit right next to the receptionist.
    - Food, preferrably with garlic. Make sure you eat it right next to the “Thank-you for not eating food in our reception area”.
    - A screaming baby. I haven’t had the heart to bring my baby with me, but maybe I’ll tape her and play it on my portable DVD player just for the effect.

    None of these will allow you to see the doctor any faster, but at least you will be entertained.

    Now that I have experienced this weird and bizzare world of life threatening illnesses, it seems there should be something we can do about the craziness we have to deal with every day from our “Doctors”. Didn’t I pay for all this health care stuff for years (and never used any of it)?

    My thoughts go with you. You are not alone!


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