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            "Once I cut it out, you will never have to worry about it anymore"

This Quote from an eye-cancer specialist was made to me way back when I first posted the diary in the link. I never wrote about the verbal quote in the diary or mentioned it due to my strong belief that this issue would never rise to the level it has today.

Following a successful surgery last Wednesday to remove a small growth in my eye that is the issue I will write below, another issue has come into play over my required post-surgery medications that has me on edge. I continue to wonder if this will ever stop.

A bit of background to this story:

Following my June 23rd diary linked above a decision was made to have an eye-cancer specialist remove a small growth in my right eye. I agreed to undergo surgery after the quote by the doctor that I would never have to worry about it after that. It was at this point that the eye-cancer specialist made the remark verbally that I never wrote about.

"Let`s go for it Doctor", was my response that day. The surgery was scheduled within thirty days and was done last Wednesday the 30th of July.

In the weeks prior to surgery the doctor prescribed some eye drops that I should use four times one day prior to surgery. Another vial of eye drops was to be used four times a day after surgery to prevent infection. So I was set and very optimistic.

Or so I thought.

A week or so prior to surgery I received a phone call from a receptionist at the eye care specialist office with a message from the doctor. He wanted me to get some eye drops that would  cost me `out-of-pocket` money over two thousand dollars because my insurance (which covers his earlier eye drops prescriptions) would not cover these.

Of course I objected. And with a valid reason. I could not afford those type of eye drops.
And if that wasn`t enough, I would have to pay for a re-fill because I could only use the first batch for fourteen days. After that I would need another prescription. I told the receptionist to give the doctor my reply. "I can`t afford that". I will not pay for eye-drops that the doctor can prescribe where my Medicare Part D covers.

The doctor then sent me another message through the receptionist. I was to get another more cheaper brand of eye-drops, costing me one-hundred and nine dollars out of pocket - with the same refill requirement as the earlier ones mentioned.

My response was the same as the first.

This eye-drops controversy ensued and nothing was settled. I was still armed with the original eye drops that the doctor prescribes initially.

Fast forward to surgery day:

Unlike cataract surgery, this one included anesthesia to numb pain along with the IV in my arm with a solution to calm me down as I would be wide awake during surgery. Today my eye resembles a half ripe strawberry, red on one side of the pupil and white on the other. Normal according to the doctor. In a few days all will be back as it was prior to surgery.

Granted, the doctor was ecstatic the next day following surgery and gloating at how successful he had been. He could not seem to get tired of examining his work while telling me that my eye was now perfect. Nary a word about cancer by the doctor. Not a single time would he go there.

The redness and soreness is normal he said. My eye pupil dilating is also normal, but the light and sun in my eye makes me understand exactly how Dracula must have felt when the light of day hit his eyes. I am walking around wearing these dark solar shield sun glasses, even inside of my house.

In between words, the doctor came back to the eye-drops. 'don`t worry`, I am working very hard to get your insurance to cover for the eye-drops..But remember, If I am unable you will have to pay for them.

And I blew a fuse.

"Doctor, I brought you information from my insurance provider whom I spoke to over the phone. I even have a phone number where you can call and submit a `Prior Authorization` form and my insurance will cover. All you have to do I call this number". I had the info written down for him.

He glanced at the information, which I am sure he is aware of, and dismissed it, with:

Don`t worry. I am trying and will try harder.

Unfortunately our exchanges about the eye-drops turned into an argument. I asked him to tell me what he had found about the growth under the microscope.

I still am waiting to hear from the lab. I ask you to come back next week August 7th, and hopefully by then I will resolve the eye drops issue.

Considering terminating treatment:

It is now Friday morning two days post-surgery as I write. I have really convinced myself that even if the small growth had any cancer, it was removed cleanly as indicated by the doctor. I am currently using the eye-drops initially prescribed by him and following his directions on how to use them.

What makes me mad is the doctors insistence that I spend money for top shelf eye-drops when he himself prescribed some for the same purpose that my insurance covers. I believe that once the small growth was cut out of my eye, I can roll the dice with more inexpensive eye-drops that their only purpose is to block infections. I think that I can fairly say that there must be more powerful eye-drops than the ones I have in my possession that my insurance can cover.

Knowing that my doctor has the power with his `prior authorization` form signing, and he can even call my insurance at the number I gave him, his insistence that I cough up big money that I do not have irritates me. I felt and thought about it last night as I was thinking of what he told me: He said that the eye-drops were for a life-or death situation, more important than the disease I am suffering from my heart.

I took his remark as a misguided one because I know about heart disease and also eye infections. I don`t think there is anything more dangerous than a heart attack. Specifically, I am sure he does not know anything about a heart attack if he has never had one.

I don`t know why I have become so enraged over my health faults lately. I just don`t know why my doctor has to be part of my rage. I am even mad having to write about my doctor and my confidential information. It is my information and I must air it out.

Maybe I have been overly enraged lately seeing as my life and also my wife`s coming at us so fast. I see our lives whistling by like a missile ready to explode. I don`t know.

On a side note: I am doing good as far as using my eye (batty to light) as time goes by. My eye is coming back to normal and the redness is slowly disappearing, which is normal too...So I am good really. If only this eye pupil dilation quits, I will be fine.

So I am thinking very seriously that when I see hims next week, if he has not resolved the eye drops issue either way....I will divorce the eye care specialist and call my treatment finished.

I made clear earlier in a comment that if I did indeed have cancer, I will never undergo radiation or chemotherapy. So I am hoping that the results from the lab come back negative..For my family`s sake.

Feel Free to kick me, scream at me, tell me anything you want. That is why I am here.

But please know that I am not an ungrateful man, lacking gratitude for those who have made my life easier. I have always respected and loved my doctors. Today I guess I am just tired of it all.

To be honest, I am mentally exhausted. I just wish I knew why I am so enraged to all around me in general knowing that all my senses are intact, so I`m not cracking up. The last thing I need is advise to see a psychologist. Please don`t go there.

Anything you say I will still respect you in the morning.

P.S. EDITED UPDATE: 3:00 P.M. Friday as I write

I just received a call from my insurance provider. It appears that my doctor has submitted a `prior authorization form` asking for approval of a medication otherwise not covered by my insurance.  The call was to inform me that the request was denied.

If he insists on this type of medication `mitomycin` 5mg pill, he has to resubmit a reconsideration authorization form. (He should know this as well). Only then will it be covered my my insurance. I note that now it is a pill, and not eye drops...Oh well, I will wait for his call because I talked to the receptionist that serves as his messenger and gave her the news. She said she will pass it on.

Unfortunately, she told me: He won`t be back until Tuesday! I will continue to hope that the doctor succeeds in getting me that medication he wants so that there will be no divorce and I can continue with follow-ups.

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

  •  I think he needs to learn (15+ / 0-)

    to hear what his patients are saying.

    (Is it time for the pitchforks and torches yet?)

    by PJEvans on Mon Aug 04, 2014 at 05:41:14 PM PDT

    •  PJEvans, actually you are (8+ / 0-)

      correct that he needs to learn what I want to say. Since I finished writing this post I have learned that my doctor is actually trying `hard` as he said to get me the medication he thinks is appropriate for preventing infection.

      I received a letter from my insurance provider explaining why my request for the medication `mitomycin`was denied, something I had already passed along to the receptionist. So today she told me that my doctor had already submitted the `request for redetermination of Medicare Presciption drug denial.

      As I understand, a fax from the provider is expected perhaps sometimes tomorrow with good news. Hopefully I can continue hearing more good news on Thursday when I see my doctor again.

      Thanks a lot PJEvans for looking into this story.

      Old men tell same old stories

      by Ole Texan on Mon Aug 04, 2014 at 06:34:04 PM PDT

      [ Parent ]

  •  Thanks, Ole Texan, for posting tonight. (13+ / 0-)

    I have a very bad connection at the moment and won't be around much for a while (family obligations) but I'll join as soon as I can.
    Glad that you have mostly encouraging news.

    Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon Aug 04, 2014 at 05:54:21 PM PDT

  •  Good luck with it, O T. (12+ / 0-)

    Our health care system is so messed up and frustrating to deal with. Add that to the stress of cancer, eye operations, out of touch doctors, insurance companies, etc. and you've got a double-handful to deal with.

    I hope your eye continues to heal up nicely, you get nothing but good news from here on out and you get everything you need. Rest up, brother, take a deep breath, and best of luck with everything. Keep us posted.

    •  Brother OPOL, so good to see you dude. (7+ / 0-)

      Thanks for your views on our health care system. I cannot agree more with you. Things have really changed in that area for most folks, not to mention the poor little people like me.

      Damn, I can`t afford to pay for medication that could very well save my life from cancer in the long run. Indeed I have to suck it up and continue to rely on handouts by my doctor, who is trying (and it looks like he is being successful) in getting the infection blocker he wants from my insurance who doesn`t cover it.

      Yeah, bro my eye seems to be getting better with each hour. Today for the first time I did not feel uncomfortable looking with my right upwards like before. Previously it felt like it was swollen and rubbing against the insides of my eye lids when I looked up...No more. And I can see some white color, barely, but a good sign on the edge of the pupil where it was all red.

      I`ll be O.K. bro. Thanks for stopping by...Oh, and glad that you came back home from the jungle.

      Old men tell same old stories

      by Ole Texan on Mon Aug 04, 2014 at 06:49:59 PM PDT

      [ Parent ]

  •  Mitomycin (7+ / 0-)

    If you look at the wiki and other well-known sites:

    This drug is given after eye surgery to reduce scarring and adhesions.

    It also is used as a chemotherapy drug for various cancers in other parts of the body. It does have some potentially serious side effects.

    Definitely the problem with your insurance covering these drugs should have and could have been taken care of before your surgery. I probably for myself would be wondering if this far after surgery I'd even really need it, or if it would make any difference now when you've already been healing for a week. That might be a question you could expect a straight answer to from your doctor.

    •  Va gentlewoman you write a hell`ava good point. (5+ / 0-)

      when you suggest wondering if this far after surgery I would even really need Mitomycin. I know that you are not referring to me with your comment but I take it upon myself to fall into that category. I will most definitely bring this question with my doctor on Thursday.

      I was just telling OPOL in my comment up-thread that I am practically healing rather nicely. I am just using `Tobramycin Ophthalmic Solution`0.3% (sterile) and `Prednisolone Acetate Ophthalmic Suspension USP - which my doctor prescribed prior to surgery as you suggested.

      So you have a very good point VA about me healing for a week already. But nevertheless I think the doctor has to do what he thinks is right, and I really do not want to think this way, but, but -- to protect himself if anything goes wrong.

      Old men tell same old stories

      by Ole Texan on Mon Aug 04, 2014 at 07:08:59 PM PDT

      [ Parent ]

    •  Expanding a little on the purpose of the drug, (5+ / 0-)

      and the general description that O.T. describes, I suspect that the purpose is to prevent scarring and any chance of adhesions. But after a week, I'd ask the same question that you raise.

      I have a few suggestion for O.T. that I;ll put in another comment.

      "Never wrestle with a pig: you get dirty and the pig enjoys it"

      by GrumpyOldGeek on Mon Aug 04, 2014 at 07:21:40 PM PDT

      [ Parent ]

  •  Prior authorization (10+ / 0-)

    My wife has colon cancer.  The radiation oncologist said she needed a PET scan.  She already has had a CAT scan.

    He said getting authorization should not be a problem.  It was.

    It would cost $5000 out-of-pocket.  We are forgoing that.


    [Medicare, and Medicaid, and Social Security] do not make us a nation of takers; they free us to take the risks that make this country great.

    by MoDem on Mon Aug 04, 2014 at 06:37:34 PM PDT

    •  MoDem I got a letter from my insurance provider (5+ / 0-)

      explaining why my doctor`s request for `prior authorization ` for the drug mitomycin was denied. The letter included the information of the right to appeal the denial.

      One can appeal by phone, online or by mail. I got on the phone and explained my intent to appeal the denial. I gave them the information they wanted and was told that it was my doctor who was the rightful person who could appeal since it was his primary request.

      I have written here that it appears that he has already made  his request for redetermination of the denial and so far I have heard promising news. The issue is being made via faxes and it sounds that by tomorrow I may hear the final determination by my insurance provider.

      I cannot comment on why the radiation ocologist in your case said getting authorization should not be a problem.  I do not even know if such person can do that. The one person I know who can request `prior authorization` besides you is the doctor. Really, I have found nothing that makes it hard to do this. Whether it is granted is something else though.

      Old men tell same old stories

      by Ole Texan on Mon Aug 04, 2014 at 07:32:33 PM PDT

      [ Parent ]

    •  I'm surprised you can't get authorization (0+ / 0-)

      I get PET scans every 3-4 months with no problem. Maybe your doctor needs to resubmit. I'm on Medicare and Medi-Cal. PET scans are to check progress of chemo, or currently to check whether cancer remains stable with no chemo.

      Barbara Lee and Howard Dean Speak for me! -9.25 -9.18

      by laurak on Tue Aug 05, 2014 at 09:41:42 PM PDT

      [ Parent ]

  •  Ole Texan, (6+ / 0-)

    I'm sorry you are so unhappy and angry. I can understand some of it and some I can't.

    Doctors are human and they get tired, they make mistakes. I've been married to an excellent surgeon, I've worked in ER and I've known doctors professionally and personally. There are some bad apples but there are more good ones than not.

    The system is a mess. That isn't the doctor's fault. It is the fault of the money makers who run the hospitals, the pharmaceutical companies, the banks who finance everything and too many long hours. ER shifts are 12 hrs without rest. I would be exhausted when I got off at 12:30 a.m. I couldn't go to sleep until around 4 and then it started again at noon.

    I know very few people outside of a few professions who have ever had to consider working a 12 hour shift on their feet. Running from patient to patient and always knowing that your decisions have to be correct. My husband generally worked 16 hours a day. He left before daylight and came in for a late dinner. Surgery started at 6:30 or 7:00 a.m.

    Doctors go to school much longer than most other professionals. My ex graduated from OU and then was accepted to the OU School of Medicine. When he finished there, he went to Duke for a year. He had 3 specialities. It takes a very long time to train for 3 specialities. He was in school 12 years then  he went to Vietnam and served 4 years in the surgery theater. He came back, borrowed money and set up a clinic. He did NOT ever take a penny, a trip or a gift from a pharmaceutical company.

    Your doctor generally isn't the person who calls the insurance company. His staff should be doing that. I don't want my surgeon to worry about my insurance when he operates on me. He needs to have an office insurance clerk to handle all of that.

    I hope this helps you understand the "behind the scenes" of a part of the medical 'business'.

    Ole Texan, I know you are going to be okay. I would really try to reduce the stress level though. Stress shows healing and it is not good for your heart and your brain. Perhaps you could walk for exercise. Take care, Pat

    “Listen--are you breathing just a little, and calling it a life?” ― Mary Oliver

    by weezilgirl on Mon Aug 04, 2014 at 06:53:57 PM PDT

    •  Weezilgirl it is so nice of you to provide (2+ / 0-)
      Recommended by:
      ZenTrainer, Vatexia

      me with your expertise of the profession I appear to be critical at this point of. Your description of your husband as a surgeon is refreshing to you I`m sure. I have to agree with you that doctors are humans and get tired just like the average person.

      It must have been my frustration of being sent home after surgery with only minimal security to my eyes with the cheap eye drops I mentioned up-thread in a comment to VA gentlewoman. In my case, I have noticed that my doctor is a rather young male person.

      I have been an eye care specialist patient for over two years and the calling card of that office did not have his name until very recently, so he is a new guy there, I think I rely on the calling card to say that this doctor..,(don`t get me wrong),he is an excellent doctor -- but he does not appear to be into this job very long. Not at his age which I would put in the early thirties. This however should not have any bearing on why I feel mad.

      As I wrote, things have not been too Oky Dokey in my home since I went for surgery on my eye. Things I have not written about that involve my wife`s health that I would never put out in public.

      It is never my intent to belittle anyone, especially my doctors, I know he is doing his best as I write this to get me the medications he sees fit for me. That is good enough for me, even if I have blown some hot air about him above.

      Thank you so much for such a wonderful comment and about your own work in the medical field. I have said several time that in my home I have a registered nurse that is my daughter. She like you is a dedicated and loyal worker for those in medical needs. And she is good at it.

      Bless you for words of comfort.

      Old men tell same old stories

      by Ole Texan on Mon Aug 04, 2014 at 07:59:22 PM PDT

      [ Parent ]

  •  Well Ole Texan, so far so good (4+ / 0-)

    sounds like you're healing up. I am sure your doctor is trying everything he can to do what is best for you, too bad our health industry is so driven by money and really makes me sick to know there are many like you who can't get the best possible treatment because of costs. Hoping for a positive outcome on the tests! Sending all good vibes your way!

    •  Thank you hulibow. (4+ / 0-)

      Yes, so far so good. I am doing good, better than expected at the beginning. Your views on the health industry is so true. I`m sure everyone here agrees with you.

      I think I have been pretty lucky though so far. What made me mad is what you say about the industry being driven by money, which I do not have to pay for their drugs.

      I say I have been lucky because things are looking good so far.

      Thank you and don`t hesitate to come into my space anytime you want to make a comment.

      Old men tell same old stories

      by Ole Texan on Mon Aug 04, 2014 at 08:21:26 PM PDT

      [ Parent ]

  •  Whew! Just got home from work and finally got (4+ / 0-)

    here. And it seems there was a glitch in the matrix and the diary didn't publish the way it was supposed to. Sorry about that.

    Glad the surgery went well Ole Texan.

    From everything I've read, using this drug for eye cancer is off label treatment. Insurance companies can be pissy about that. Even if it works great.

    I think I've already told you how to get the drug from the pharmaceutical company for free and about nurse navigators and such.

    Good luck with all of this and again, I am so glad the surgery went well!

    Tracy B Ann - technically that is my signature. I scroll with my middle finger.

    by ZenTrainer on Mon Aug 04, 2014 at 08:04:27 PM PDT

    •  Hi ZenTrainer. Glad you made it home safe (3+ / 0-)
      Recommended by:
      peregrine kate, ZenTrainer, Vatexia

      from work. Interesting that you mention a glitch in the matrix and that the diary didn`t publish as supposed. I have difficulties all the time, especially on Sunday mornings to log in and read. When I click on a diary I want to read I get the error that the site cannot be located , oh well.

      Anyway thank you for stopping by so late. I hope that you go right to bed and rest for tomorrow.

      When you say:

      this drug for eye cancer is off label treatment.
      I think you mean that the insurance provider does not carry it on their lists of approved medications, eh?

      About getting mitomycin free from the  pharmaceutical company, I do not recall you ever telling me that. What I recall is that you said the reason it was not covered was because it was not listed. Yes, we wrote of the website you mentioned where I could find prices and freebies, but this one medicine I do not recall we found there.

      Sometimes I think that my mind is like yours. I do not understand some language you use, such as  

      this drug for eye cancer is off label treatment
      about nurse navigators and such.
      I guess that goes with the territory of being a newbie here at the club.

      Thanks ZenTrainer for stopping by. It is always good to read your expertise.

      Old men tell same old stories

      by Ole Texan on Mon Aug 04, 2014 at 08:39:09 PM PDT

      [ Parent ]

      •  ZenTrainer Its getting late. (2+ / 0-)
        Recommended by:
        ZenTrainer, Vatexia

        You need to rest. I will come back in the morning and stick around to respond to those who may come in later tonight.

        I am going to bed.

        Thanks to those who joined us this evening.

        Say good night ZenTrainer.

        Old men tell same old stories

        by Ole Texan on Mon Aug 04, 2014 at 08:43:10 PM PDT

        [ Parent ]

      •  Yes, I told you about and they do (2+ / 0-)
        Recommended by:
        Vatexia, Ole Texan

        not have this drug listed.

        But most pharmaceutical companies have programs where they provide free drugs to those who can't afford them. I got one drug for free for a year from Forrest Pharmacy.

        Off label use means using a drug for something it's not usually used for. Mitomycin is usually used for bladder and pancreatic cancer. Sometimes a few others but eye cancer is not one of the ones listed.

        In order for insurance to cover it for eye cancer your doctors office may have to jump through a lot of hoops - do a lot of extra work.

        Nurse Navigators were discussed by a couple of people in one of your previous diaries. Many hospitals and medical centers have them and they help patients with whatever they may need. Including getting affordable drugs.

        Tracy B Ann - technically that is my signature. I scroll with my middle finger.

        by ZenTrainer on Mon Aug 04, 2014 at 09:41:26 PM PDT

        [ Parent ]

        •  Good Morning ZenTrainer. It is now (1+ / 0-)
          Recommended by:

          Tuesday 7:30 a.m. I was delighted to read what you say about the drug migomycin and how it is more commonly used. I do recall that interact we had about I now recall that I had a very difficult time connecting to the sites that would have taken me to companies with programs as the ones you mention, where I could get free drugs.

          For some reason I concluded that I probably would not be able to land such a prize and I switched to my only hope, that my doctor would come through for me. But now I have some questions about whether I really need this Med, after a week of self healing. My eye is almost healed completely save for some redness, but I am not feeling any discomfort that would make me worry.

          So I will see on Thursday whether things must change.

          Thank you for educating me on off-labels drugs and also what you meant by Nurse Navigators. I recall while being discharged from the hospital following my heart attack that one particular nurse came into my room offering me several programs to help me fully recover, assuring me that my insurance would cover. So I think this is what you mean by Nurse Navigators, or just part of their duties.

          Have a wonderful day zenTrainer.

          Old men tell same old stories

          by Ole Texan on Tue Aug 05, 2014 at 06:00:01 AM PDT

          [ Parent ]

  •  I just got home from a day of visiting (5+ / 0-)
    Recommended by:
    ZenTrainer, ladybug53, Vatexia, Ole Texan, Sylv

    my elderly and ill parents, and I am also heading to bed. Tomorrow morning I will address the non-publishing issue with the DK Help Desk. I'm sorry this happened; very strange indeed.
    But the better news is that you're doing so well, O T.
    More soon, at least tomorrow that is.
    Best to all.

    Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon Aug 04, 2014 at 08:54:41 PM PDT

    •  peregrine kate I can`t seem to think of (2+ / 0-)
      Recommended by:
      ZenTrainer, peregrine kate

      the right words to express my gratitude for your presence after what you went through visiting your elderly and ill parents.

      No matter if you could not have been able to come tonight, I had you in my mind and spirit, as we exchanged messages earlier. Know that I am happy to see you though.

      It is already Tuesday and I hope you had a good and sound sleep and rested.

      Bless you.

      You are more than welcome to come back anytime and join us with your thoughts. And thank you for thinking that my doing well is the better news.

      Old men tell same old stories

      by Ole Texan on Tue Aug 05, 2014 at 06:06:33 AM PDT

      [ Parent ]

  •  Ole Texan, (4+ / 0-)
    Recommended by:
    ZenTrainer, ladybug53, Vatexia, Ole Texan

    sending best wishes for the pathology report to be clean - and that you can get the medications you need without struggle or extra expense.  May blessings rain down on you - you have been through enough.

  •  Glad the surgery went well for you. (4+ / 0-)

    Not happy about the battles with the insurance nazis.

    Apparently, the surgeon isn't interested in fighting through the insurance blockades. Nor does he have a qualified insurance admin swat team.

    But you probably have immediate access to two more docs who can get things done for you.

    First, your ophthalmologist, the doc who sent to to the surgeon specialist, is definitely going to be a lot better at dealing with insurance nazis. Probably has an expert insurance admin nazi bulldozer person who knows this shit cold.

    So give that office a call, flatter them about your belief that they are good at getting past the red tape, and suggest that they contact the surgeon and offer to take over the post-op followup and insurance crap. Boom. Annoying surgeon is out of the loop. The ophthalmologist's post-op exams might even be more thorough that the surgeon's. Yeah, I remember that this foc wasn't all that good at communicating, but all you need is medications and a followup exam or two.

    Then there's the issue with out-of-pocket costs that are unaffordable. If you have a primary care physician, a GP type, this is your most knowledgeable resource who really, really, knows how to get the lowest costs possible, If they don't do this personally, they employ someone who does or they can point you to the best person they work with. Usually, this costs you nothing extra and all the paperwork and phone calls are not your problem.

    They know all about discount cards, coupons, lower cost suppliers, and even deep discount programs offered by drug manufactures directly. I've been amazed at their ability to turn the impossible into the inexpensive or even free.

    I don't think we patients should have to be involved in any of this crap - ever. But until we get single payer heath care, we have to deal with delegating these things.Otherwise, the lazy doctors will just tell you to pay $2000 because they don't want to bother with annoying insurance nazis.

    You can fire them. Just know that you can ask others to take over. Most will help out. Helping others is their reward.

    Just be sure to use up ALL of you antibiotics including all refills. That's SOP for any antibiotic. You really don't want an infection...

    The steroid will help that iris to settle down and will relieve eye irritation which is normal during the healing process. The dilation is annoying as hell, isn't it.

    The expensive medication prevents adhesions and scarring. But it's been a week and I'm would question whether it's needed any more. If your eye isn't  very painful any more, and eye movement is smooth and doesn't feel like there's something rubbing around in there, talk to your doc about this. But he's the expert, not you or me. If he says you need it, find a way to get it done. If not, then that hassle goes away.

    I'm really annoyed that the surgeon told you something was a life-or-death issue. That deserves an official complaint to the medical board. But don't worry about that now. I don't understand why he went from drops to pills, either. I'd get a second opinion from your regular ophthalmologist.

    But hey. That little chunk of cancer is GONE. Yessss!

    "Never wrestle with a pig: you get dirty and the pig enjoys it"

    by GrumpyOldGeek on Mon Aug 04, 2014 at 09:23:05 PM PDT

    •  GrumpyOldGreek I went to bed last (2+ / 0-)
      Recommended by:
      ZenTrainer, GrumpyOldGeek

      night certain that I had replied to your

      Expanding a little on the purpose of the drug
      comment. I told you last night that I would look for your upcoming advise. Now I do not see my reply on the comment section above.

      But I read your latest comment with a `Wow` attitude as I noted your logic about my situation in which I totally agree with you.

      I am hoping to hear from those who will hopefully dispense this drug free today. Yesterday, the receptionist at the surgeon`s office told me the `reconsideration form` to the denial of the drug was in the works and had already been faxed to whoever is supposed to get it. So I am hoping to hear today one way or another if I get the drug.

      I must agree with what you say, well with almost due to your descriptions about my ophthalmologist probably has an expert insurance admin nazi bulldozer person who knows this shit cold. I mean you probably have your own reasons for thinking this way.

      Me, to be totally frank with you, I see my doctor in a very different light. Sure he has staff who takes care of these things that I face today with respect to obtaining a drug not covered by my Medicare Part D. The one receptionist I mention in my diary is one of his staff who is handling this issue and has treated me with the respect that I have to really admire.

      But everything you say, including your question as to whether I need this med after a week of self healing is something I will most certainly ask the surgeon when I see him on Thursday. The dilation in the pupil of my eye in question is now mostly gone. I walked out to put some trash in the bin this morning and the light of day was not as bright as dracula would say. In addition, I noticed yesterday that I can see farther down the road as i waited for a bus. I used to have tears run down that eye when I tried to see that far prior to surgery. Everything is turning out to be good.

      But you are absolutely right. I don`t want an infection and am using the eye drops I now have in my hands. I use them exactly as the surgeon told me when I last saw him last Thrusday.

      So GrumpyOldGreek I thank you very much for your extensive and welcomed advise.

      Old men tell same old stories

      by Ole Texan on Tue Aug 05, 2014 at 06:41:35 AM PDT

      [ Parent ]

  •  Not your doctor's fault the insurance company won' (3+ / 0-)
    Recommended by:
    Vatexia, Ole Texan, ZenTrainer

    Adhesions might result in loss of vision or retinal detachment.  I would follow doctor's advice!

    •  frosti I have to agree with you. (1+ / 0-)
      Recommended by:

      its not the doctors fault that the insurance company denied a request for `prior authorization` to obtain my medication.

      But I do not agree to your blunt statement: Pay!

      I have read the word Adhesions several times in this diary that may result without proper care. I have yet seen anyone explain to me what that means and how it works to avoid what you describe as `loss of vision or retinal detachment`.

      I really would appreciate if you elaborate and explain to me what that means and, you know, how can one tell this result will occur.

      Thanks for stopping by.

      Old men tell same old stories

      by Ole Texan on Tue Aug 05, 2014 at 06:49:27 AM PDT

      [ Parent ]

      •  Scar tissue over time contracts. In the eye, (3+ / 0-)
        Recommended by:
        ZenTrainer, peregrine kate, Sylv

        It might pull on the retina and separate the layers in the back of the eye. This is a retinal detachment. Or what if the scar pulls on the lens so your vision is warped.
        I have scar tissue in my eye and I have a brownish spot in the middle of my vision that can't be fixed without a surgery to remove it.  If you get adhesions, you risk needing a second surgery. Since you said your eye was red, the redness indicates inflammation is there.  Scarring and adhesions occur when the body tries to deal naturally with inflammation.

        Sorry about your situation.  Things like this led me to retire from medicine early.  But I couldn't be on hold for 20 or more minutes for every denial, and they blow off staff.  At the insurance company, you have some low level nonmedical staff person denying the plan that the doctor knows will work.  Then the patient gets mad at the doctor rather than the nameless, faceless clerk.  Then the insurance company gets away with it--bad doctor, not bad insurance.

        •  frosti, thank you a lot for your (1+ / 0-)
          Recommended by:

          elaborated comment to my question. I am sorry that you also experience eye scar tissue with a brownish spot in the middle of your vision.

          As to adhesions, I now get to the core of my question. I am making myself believe that my situation is totally different from yours because the redness in my eye as it is today was expected following surgery. The surgeon had to go in there and snip the small growth with scissors, as he said he would so I was expecting this redness and discomfort.

          Now I don`t doubt anything you say about the possibilities of what may occur without proper care. I was just doing a google search on retinal detachment and find most of what you say to appear true. In my case, it is unfortunate that I had to go through this surgery, at my age, which may or may not have contributed to the surgery.

          I have absolutely no problem with paying whatever it would  cost to save my vision. However, I am not prepared to put my family`s situation financially at risk by  getting a mortgage loan on my house and rolling the dice that I really need this medication.

          My question is: Could I get another type of medication that could prove equal to the expensive one that I can`t afford that my insurance would cover?

          The redness in my eye is slowly disappearing just as my doctor said it would. The swelling is also gone and my vision seems to have improved. I do, however yet feel that my eye is not yet there, to its full potential. I am hoping that my situation is very different from yours because I have no impairment or brown spots anywhere in the eye. In fact, I now see the white becoming more clear where it was once red.

          Thank you frosti, and I am sorry you had to leave your medicine profession on account of your vision loss. Here is hoping that somehow you prevail in the near future.

          Old men tell same old stories

          by Ole Texan on Tue Aug 05, 2014 at 08:03:42 AM PDT

          [ Parent ]

    •  What part of "CAN'T AFFORD IT" don't you get? So (0+ / 0-)

      what should he do, rob a bank perhaps?

      You have watched Faux News, now lose 2d10 SAN.

      by Throw The Bums Out on Tue Aug 05, 2014 at 07:16:42 AM PDT

      [ Parent ]

      •  More people should rail against insurance companie (2+ / 0-)
        Recommended by:
        peregrine kate, ZenTrainer

        Call the insurance commissioner.
        Once I called my representative about Medicare nonpayment under Bush. It was rectified in less than a week. Bush would have 6-12 weeks of physician non-payment, a secret sequestration.

        Sorry, but if I risked loss of vision, I would do something other than just stopping meds.  Credit? Payments on time? Pharmaceutical coupons? I don't know, but what good was surgery if he loses his vision at the end? I couldn't imagine.

        •  frosti, I`m sure a lot of folks (0+ / 0-)

          think as you do about railing against, well, anything that is not in our best interest.

          It would really take someone that I am not to call an insurance commissioner to complain that my doctors request for `prior authorizaion` to get medications he deems necessary for me was denied.

          I just hope for the sake of `us` the poor that someone has done or will do that in the future. There is no denying that the Pharmaceutical industry is running amok with its policies against those who are unable to obtain their drugs. In most cases those drugs have a whole set of folks addicted and their prices continue to climb.

          It is disqusting and am sure their top paid honchos will never even respond if ever I decided to file a complaint.

          But that is only my view.

          Old men tell same old stories

          by Ole Texan on Tue Aug 05, 2014 at 08:20:50 AM PDT

          [ Parent ]

      •  Ha, that was a good one TTBO. (1+ / 0-)
        Recommended by:

        I have thought the same thing several times. Any bank would laugh at me if I posed as a bandit. My face just won`t fool anyone, really. I would not be smart enough to wear a mask on top of that.

        Our friend frosti really does not mean it that way. I did appreciate his comment as he sounds like he knows that he is talking about. He`s one of us (eye-patients) with his own problems.

        Ha, but yeah TTBO, I know that what you said would cross anyones mind after reading what I wrote about being unable to pay...

        Thank you

        Old men tell same old stories

        by Ole Texan on Tue Aug 05, 2014 at 08:10:27 AM PDT

        [ Parent ]

  •  Ole Texan, my understanding is that Mitomycin (1+ / 0-)
    Recommended by:
    peregrine kate

    is a chemotherapy drug.


    Mitomycin is an anti-cancer ("antineoplastic" or "cytotoxic") chemotherapy drug.  This medication is classified as an "antitumor antibiotic."

    So, much like with breast cancer, even when they remove the cancer they follow up with chemotherapy. It doesn't really matter how your eye is feeling, this drug is to get rid of any cancer that may be lingering, hidden away.

    Now, that being said, you should know that you still can refuse to take it.

    Most people with my kind of cancer have surgery, do chemo and radiation and a drug called Tamoxifin.

    I chose not to do that and only do surgery. I am taking a chance. But it's an informed one. I know that cancer may still be in my body and yet I still will not do chemo, radiation or the drug. Because...well, it just doesn't fit in with my beliefs about health care.

    You certainly can refuse this drug as well but please know that you are refusing chemotherapy, not any old antibiotic or a steroid.

    Tracy B Ann - technically that is my signature. I scroll with my middle finger.

    by ZenTrainer on Tue Aug 05, 2014 at 10:51:54 AM PDT

    •  ZenTrainer thank you for being here. (1+ / 0-)
      Recommended by:

      I stepped out for a bit this afternoon and missed a call from some place listed on my phone as Medical Treatment and I have their number.

      I tried to google (hmppp, how stupid am I) the number to see if I could find out who owned the number. Of course I failed.

      So I have left two messages calling the number asking them to call me back, explaining that I missed their call. I have a pretty good idea what the call is about, so I am waiting to hear back from them.

      Now explain this to me please;

      You certainly can refuse this drug as well but please know that you are refusing chemotherapy, not any old antibiotic or a steroid.
      Are you saying mitomycin is chemo? I told you, I am like you when reading stuff I do not understand. But unlike you who do not like to read text that is all jumbled up, I have difficulties understand medical lingo, period.

      So if this call is to tell me that mitomycin was approved by my insurance (which I am forcing myself to suspect), do you think I should refuse to use it?

      I hope I hear from you on this ZenTrainer, and thanks a lot for everything.

      Old men tell same old stories

      by Ole Texan on Tue Aug 05, 2014 at 12:38:00 PM PDT

      [ Parent ]

      •  Yes, Mitomycin is chemotherapy. (0+ / 0-)

        I can't say if you should use it or not. Would you use chemotherapy for any other type of cancer?

        I have known most of my adult life that I would NOT use chemotherapy no matter what kind of cancer I had or what stage it was. But that's me.

        Most of the people I know with cancer do chemotherapy and deal with the side effects.

        So it's a very personal decision.

        I do think it's always good to get 2 and 3 opinions. (From doctors, that is.) Get a second opinion and a 3rd if you can.

        Someone up above talked about you going back to your ophthalmologist and primary caregiver. Maybe you could ask them if they think you should do chemotherapy.

        Tracy B Ann - technically that is my signature. I scroll with my middle finger.

        by ZenTrainer on Tue Aug 05, 2014 at 05:53:38 PM PDT

        [ Parent ]

        •  ZenTrainer Mitomycin is now moot. (1+ / 0-)
          Recommended by:

          Yesterday my insurance provider made a final denial to my surgeons `redetermination of denial` request to his `prior authorization` form signing.

          The pharmacist where the Mitomycin was to be made called me to inform me what I write above.

          ZenTrainer it is here on MNCC where I have learned many things about cancer, and specifically that Mitomycin is indeed chemotherpy from you. I am appalled that this surgeon attempted to put me on chemo without telling me or my consent. I have written several times that I would never undergo this treatment.

          I have read that once started, a patient must continue on this chemotherapy for approximately forty weeks. But I would not know all the details. I have read of the horrible side effects of chemo and that is my main reason for not going there.

          I am very troubled with the guy. I have to think that even if I were to ask for a second opinion from my primary eye doctor, he would most certainly side with his colleague. It was my primary eye doctor, after all that referred me to this surgeon.

          I am thinking very seriously, now that my eye has healed almost totally by just using the eye drops I have, tell this surgeon to prescribe some medication that my insurance will cover and end treatment.

          It does not matter what the results from the lab show when I see him tomorrow. Personally, I feel that my eye is clean. On the very same day that my primary doctor referred me to this surgeon, my primary eye doctor had just done a thorough examination of both of my eyes. He told me that my eyes were clean through out, back, sides and everything, not even signs of glaucoma.

          So I have this decision to make when I see him tomorrow other than getting on his case for trying to use me as his guinea pig. Iwill confront him with his remark to me that:
          "once I cut it out you will never have to worry about it".

          Old men tell same old stories

          by Ole Texan on Wed Aug 06, 2014 at 06:25:44 AM PDT

          [ Parent ]

          •  Well, I am sorry you are having such rough (0+ / 0-)

            time with this.

            I think that oncologists are required to provide "standard of care". That is usually surgery followed by chemotherapy and sometimes radiation.

            And I think if the doctors don't recommend this they can be accused of malpractice.

            It was not easy for me to turn down what is the "standard of care". One surgeon refused to do my surgery unless I agreed to do radiation. I was told no surgeon would do it without my following up with radiation.

            Then I got a surgeon who with sort of a wink told me that the radiation would be AFTER the surgery so there wouldn't be anything he could do if I didn't follow through.

            He was being very nice and trying to follow my wishes and the laws of medicine.

            I sometimes envy the folks who just do what their doctor suggests rather than questioning and doing a ton of research, reading everything they can, getting 2nd and 3rd opinions.

            I think their lives may be easier and less anxious than mine.

            Tracy B Ann - technically that is my signature. I scroll with my middle finger.

            by ZenTrainer on Wed Aug 06, 2014 at 10:12:32 PM PDT

            [ Parent ]

          •  Every case is different (0+ / 0-)

            I know that some here won't do chemo. When I was diagnosed I knew I had to have chemo or I would die, I had done the research and knew that even though cancer was impinging on my aorta and renal veins that chemo could still get me to good long remission. But I didn't know if I could do chemo. I found a psychologist who got me through it and while it wasn't a walk in the park it was quite "doable" and no where near as bad as I thought it would be. Now my chemo wasn't eye drops. It was getting a port and going in every three weeks for pretty much the whole business day and having pre-meds, three chemo drugs and one monoclonal antibody infused through my port and taking high dose prednisone for five days every cycle. This was followed by two years of going in for maintenance infusions of the monoclonal antibody every six months four weekly doses.

            Sounds like a lot, right? I didn't have to quit living during my treatment and I have a wonderful, productive life now. I still have a weak immune system but that is from the lymphoma, and the doctors say I was probably borderline on that before cancer so I have to pick and choose what I do. I watch my grandkids, play, contribute to local causes and do all the normal daily things. If I had eye cancer, yeah, I'd do the eye drops. But I'm not you. You'll have to make your own decision. I hope you listen to your doctor and take everything into consideration. And I wish you well whatever you decide.

            •  Sylv, thanks for sticking around, here`s what you (1+ / 0-)
              Recommended by:

              said this morning:

              If I had eye cancer, yeah, I'd do the eye drops. But I'm not you. You'll have to make your own decision. I hope you listen to your doctor and take everything into consideration. And I wish you well whatever you decide.
              Well, this morning I am waiting for 2:00 p.m. to see my surgeon. I believe I wrote that now it appears to be pills and not eye drops. I really do not know yet.

              But whatever, after reading what you went through with your chemo and stuff, I will listen to my surgeon and more than likely will take my medicine, as they say. I mean eye drops or even a pill will not hurt, as I imagine being hooked up to machines and prodded and poked with needles and stuff if that is what chemotherapy and radiation is -- which I know nothing about.

              I have thought good and long and I think I will use this drug at least until my eye gets back to normal -- which this morning feels almost totally healed, even the eye dilating is now gone and will not use the large solar shield sun glasses I used the last time I went to the surgeons office.

              I am sure the surgeon will be surprised to see my eye almost completely healed in one week with only the use of the eye drops he initially prescribed. I will ask him if I really need new medications but feel quite guilty after all the trouble he went through in getting it for me. Believe me, he promised me to try very hard to get my insurance to cover -- and he came through after I wrote that his request had twice been denied. He always wanted me to take this Medication long before he cut the growth out of my eye. So my situation is really to prevent infection and scar tissue as you have said. At least that is my gut feeling this morning.

              So I will write some more tomorrow and try to have it published here on Monday Night Cancer Club for the benefit of all who were here with me. Especially you Sylv, who has
              continue to offer support.

              I thank you and see you soon.

              Old men tell same old stories

              by Ole Texan on Thu Aug 07, 2014 at 08:59:24 AM PDT

              [ Parent ]

  •  I hope it turns out to be benign but (1+ / 0-)
    Recommended by:

    if it is cancer, if it turns out to be lymphoma, I know of those who have had treatment and remain clear.

    •  Sylv I think lymphoma may not apply here. (2+ / 0-)
      Recommended by:
      Sylv, ZenTrainer

      On the day that my eye doctor referred me to this surgeon who cut the small growth out of my eye, a thorough and complete test was done on my eyes, both of them.

      Pictures were taken of the eyes in all angles, sides, back and the whole shot, so to speak.

      My eye doctor told me that everything in the back of my eyes were clean and not even a sign of glaucoma, As you know glaucoma is a disease that robs a patient of vision and may result in blindness.

      So in a nutshell, my eyes were clean when this new surgeon got a hold of me. The small growth was cut out cleanly and my eye today is quickly healing and returning to normal. I am seriously troubled that this surgeon took it upon himself to attempt to have me go chemotherapy without my consent.

      The medication he wanted to use on my eye was just denied today by my insurance provider. I never intended to undergo chemo, no way and no how. So I am confident that whatever it turns out to be, I will treat it the best way I can without chemo.

      So, no Sylv, I can say positively no, to lymphoma. I read a bit on this disease and the symptoms mentioned do not seem to play into my case.

      But thank you for your comment.

      Old men tell same old stories

      by Ole Texan on Tue Aug 05, 2014 at 03:34:58 PM PDT

      [ Parent ]

      •  This might be hopeful for you (2+ / 0-)
        Recommended by:
        peregrine kate, ZenTrainer

        I just found a link that one of the uses of mitomycin eye drops is to prevent recurrence of pterygium, a benign growth of the conjunctiva of the eye.
        PubMed Link

        •  Sylv, I read a bit on pterygium. (1+ / 0-)
          Recommended by:

          A pterygium is a non-cancerous growth that starts in the of the clear, thin tissue (conjunctiva) of the eye. This growth covers the white part of the eye (sclera).

          You can read it here:

          Probably close to my situation, but that too I doubt. I am getting a bit shell shocked everything I reply to a comment. I feel like I am defending myself.

          I do not say this because of you or anyone else who have made comments and given advise. I just have put it in my head that I am totally normal after the surgery. Of course there may be complications but I seem to have taken good care of that myself without chemotherapy.

          Here I take it that Mitomycin helps prevent my situation from `recurrence of pterygium`, if indeed that is what I have. Tomorrow when see my surgeon I think my questions will be answered. I will write and let you know.

          In the meantime thank you for your comments and don`t hesitate to come back.

          Old men tell same old stories

          by Ole Texan on Wed Aug 06, 2014 at 06:47:35 AM PDT

          [ Parent ]

  •  Hi Ole Texan, I'm glad your eye discomfort is (1+ / 0-)
    Recommended by:

    going away. I'm sorry there is confusion about whether you will be able to get these drops and what they are really for. It's confusing as heck, isn't it? I hope everything settles down soon.

    •  Hi there flumptytail. I am (1+ / 0-)
      Recommended by:

      very glad that you could join us here at Monday Night Cancer Club. Yes It is very confusing indeed, as heck as you put correctly.

      I was just telling ZenTrainer above that my eye is now almost totally healed after a week today. Even my son has noticed the change to better. I have those who really really care about the outcome and I can tell you that where there was redness in the eye, is is now turning back to normal white away from the pupil, that was never in danger.

      I am glad that Mitomycin is now moot as I told ZenTrainer. My insurance will not cover it and I`m glad, because it is a chemotherapy drug I knew nothing about. I would never do chemo, no matter what.

      So there you have it flumptytail. I am good and getting better. In fact like I told you in a separate message my wife is too.

      Thank you dear, for comment

      Old men tell same old stories

      by Ole Texan on Wed Aug 06, 2014 at 06:36:06 AM PDT

      [ Parent ]

  •  After 1:00 p.m. I got a call. (0+ / 0-)

    My surgeon`s request for Mitomycin was granted by my insurance. I am waiting for instructions on how to pick it up.

    Maybe my surgeon will give me the prescription tomorrow when I see him.

    I am back to square one. Should I use it?

    Old men tell same old stories

    by Ole Texan on Wed Aug 06, 2014 at 01:38:53 PM PDT

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