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Thread: Jim's Update

  1. #361
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    callyflower ~

    I am not a stranger to death, having lost many family members, including my son, Michael, and friends. We aren't looking for a hard and fast "this is exactly what will happen to you" answer. We want to know what to expect, what is typical with this kind of lung cancer at Stage IV. He's already defied Dr. P's initial odds of 3 to 6 months last year. And Jon and Michael defied death numerous times, so we know that nothing is certain. But some things must be predictable or anticipated, I would think.

    Perhaps we should turn to Jon's nurse for this kind of guidance, as she has cared for many cancer patients, was once an infusion nurse (still does IVIG for home patients), and has worked palliative and hospice care. Her son in law died of cancer. She is incredibly compassionate, and I'm sure that she could help us with some of these questions.

    funnylegs4 ~

    When I referred to Dr. P's age, I was connecting it with her mistakes and frustration. When you are in your sixties, your memory starts failing a little, you have less energy, and stress is overwhelming sometimes. She has (like all of the oncologists at our center) too many patients to keep track of at one time. She is always being interrupted while she's with Jim about another patient. He never gets her undivided attention, and she doesn't pay attention to what he tells her. She flits in and out. And in your sixties, that's a lot of effort to maintain that pace all of the time. I know this from experience and from all of my Senior friends.

    She blamed Jim for not telling her that he has RA, although he had told her numerous times. She never charted that information. She also failed to read all of Jim's medical records or she would have seen that in 2015, Jim saw our PCP for his severe RA flare. He also had a lump in his breast, which was benign fatty tissue, thankfully.

    If she had reviewed all of his blood work results in the last two years, she would have seen that he has a very high RA factor.

    She also didn't ASK HIM prior to giving him immunotherapy (Opdivo) if he had any kinds of autoimmune disorders. Nor is that question listed on the 8 page patient questionnaire for initial consult.

    But, she blamed Jim.

    That's why I called her incompetent, and that's why I think her age may be contributory to her incompetence. She has to do on call, hospital rounds, see patients, etc. Plus whatever personal life she has. That's a lot to deal with in your sixties.

    I'm sure that she has seen a lot of death, given her specialty. She also volunteers in India once a year for a month. I'm sure she's seen the worst there.

    The British invaded India and as Jim says, "took everything of value there and left the people with nothing." Of course, he thinks that was detestable. Just as the British did the same thing, when they reached the shores of the U.S. to Native Americans.

    England has a substantial population of Indian immigrants. Jim grew up with Indians, and Indian food is his very favorite. Several Indian families live in our neighborhood, and they are lovely people.

    So, I don't know whether her issues with Jim are cultural, or if she's just worn out from watching people die and trying to save them. Jim said that one of her patients, who he met waiting for a blood draw, told him, "you have to get in her face to get her to tell you anything." Well, Jim has done that repeatedly with her, but she just doesn't seem to have time for him. Or care.

    I am happy to report that Jim and I figured out his new recording device, and it is recharging in the computer right now. It's really pretty easy (must be, if we can do it!), and I know it will be a benefit to him when he sees his doctors. Thank for the link to those devices, funnylegs4.

    Thank you all for your continuing prayers, love, and support!

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  3. #362
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    callyflower ~

    I am not a stranger to death, having lost many family members, including my son, Michael, and friends. We aren't looking for a hard and fast "this is exactly what will happen to you" answer. We want to know what to expect, what is typical with this kind of lung cancer at Stage IV. He's already defied Dr. P's initial odds of 3 to 6 months last year. And Jon and Michael defied death numerous times, so we know that nothing is certain. But some things must be predictable or anticipated, I would think.

    Perhaps we should turn to Jon's nurse for this kind of guidance, as she has cared for many cancer patients, was once an infusion nurse (still does IVIG for home patients), and has worked palliative and hospice care. Her son in law died of cancer. She is incredibly compassionate, and I'm sure that she could help us with some of these questions.

    funnylegs4 ~

    When I referred to Dr. P's age, I was connecting it with her mistakes and frustration. When you are in your sixties, your memory starts failing a little, you have less energy, and stress is overwhelming sometimes. She has (like all of the oncologists at our center) too many patients to keep track of at one time. She is always being interrupted while she's with Jim about another patient. He never gets her undivided attention, and she doesn't pay attention to what he tells her. She flits in and out. And in your sixties, that's a lot of effort to maintain that pace all of the time. I know this from experience and from all of my Senior friends.

    She blamed Jim for not telling her that he has RA, although he had told her numerous times. She never charted that information. She also failed to read all of Jim's medical records or she would have seen that in 2015, Jim saw our PCP for his severe RA flare. He also had a lump in his breast, which was benign fatty tissue, thankfully.

    If she had reviewed all of his blood work results in the last two years, she would have seen that he has a very high RA factor.

    She also didn't ASK HIM prior to giving him immunotherapy (Opdivo) if he had any kinds of autoimmune disorders. Nor is that question listed on the 8 page patient questionnaire for initial consult.

    But, she blamed Jim.

    That's why I called her incompetent, and that's why I think her age may be contributory to her incompetence. She has to do on call, hospital rounds, see patients, etc. Plus whatever personal life she has. That's a lot to deal with in your sixties.

    I'm sure that she has seen a lot of death, given her specialty. She also volunteers in India once a year for a month. I'm sure she's seen the worst there.

    The British invaded India and as Jim says, "took everything of value there and left the people with nothing." Of course, he thinks that was detestable. Just as the British did the same thing, when they reached the shores of the U.S. to Native Americans.

    England has a substantial population of Indian immigrants. Jim grew up with Indians, and Indian food is his very favorite. Several Indian families live in our neighborhood, and they are lovely people.

    So, I don't know whether her issues with Jim are cultural, or if she's just worn out from watching people die and trying to save them. Jim said that one of her patients, who he met waiting for a blood draw, told him, "you have to get in her face to get her to tell you anything." Well, Jim has done that repeatedly with her, but she just doesn't seem to have time for him. Or care.

    I am happy to report that Jim and I figured out his new recording device, and it is recharging in the computer right now. It's really pretty easy (must be, if we can do it!), and I know it will be a benefit to him when he sees his doctors. Thank for the link to those devices, funnylegs4.

    Thank you all for your continuing prayers, love, and support!

    Love & Light,



    Rose
    Hi Rose,

    First of all, I’m so glad you and Jim got a recording device and that it is working so far. Hold on to the audio files by putting them in your computer or doing another type of digital back up in case you need proof that Dr P said or did something that she tries denying later. If you have other people you can ask about cancer use all the resources you can get.

    Ah sorry if I miss read any of your last post. I’m sure she is under a lot of stress and has fatigue. That can do a lot to a person. I saw what fatigue did to my teacher with the stroke and it was not pretty. Yes I am sure she sees much, much worse in India. If she is having memory issues and still wishes to practice then she would need some kind of accommodation or something like that to ensure she is not endangering patients like Jim due to mistakes. There is still no excuse for such behavior. I agree she is incompetent.

    Jim is absolutely right. I also think it was absolutely detestable! I still can’t believe how easily people are devalued based on race and/or culture! :( One of my friends from India explained that the British saw Hindus like him as uncivilized savages that needed the British to quote on quote “save them”, I think the academic term used in anthropology is “white savior” , much like the Native Americans here like you said. The idea of black/African slavery was also a British idea, not an idea from the U.S. My friend from India showed me new studies being conducted that suggest the Caste system in India was not originally of India’s culture but instead was an imported type of class system that the British brought to India to control the population. Google it. Its fascinating stuff. I also love Indian food and would love to visit India someday after hearing my friends describe it so beautifully. :)

    More prayers to you always!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  5. #363
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    ((((((Hugs to All)))))) ~

    Jim called for his second opinion appointment with Dr. PK today, and he was told that all of the doctors in the oncology unit are "referral-based," regardless of insurance. I predicted this would happen, because this isn't my first rodeo.

    I immediately emailed Dr. A and his assistant through the health portal. We just received a reply that the referral is "in the system."

    Jim now understands why I was prodding him to move forward on the request for the second opinion. I just shook my head and sighed resisting the temptation to say to him, "Honey, when are you going to realize that I'm always right?"

    The recorder is all recharged, and I've learned a few more things about it, which I've taught to Jim.

    My next task is to create an outline for Jim to take with him to his appointment with Dr. P, so that he can stay on point. As soon as she sees the paper in his hands, she will disregard it and say it's unnecessary. This time, he must insist that she stop, take time and listen to him. "No! You always do that! You never let me talk to you, when I bring in a list of questions or symptoms or concerns. We're at a crossroads now, and I need to have my say, and I need you to listen to me." He needs to tell her how stressed and upset he is, because she has told him that he needs to AVOID STRESS many times! HA! She is the biggest stressor he has in his life!

    Stay tuned for that update, my friends! Should be a doozy!

    Thank you all for your prayers, love, support and encouragement!

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  7. #364
    Distinguished Community Member agate's Avatar
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    The doctor says to avoid stress but the doctor is the stress. There may be only one way of resolving that: avoid the doctor. Or maybe Jim can bring about some changes in the doctor situation. I hope so.

    Trips to the doctor are stressful, especially if you're unwell to start with. It's tiring just getting there, and the doc's time is so valuable--and you're made so aware of how ultra-valuable it is--that you feel you absolutely have to be there not just on time but (I've been hearing this more lately) 15 minutes early. Then during your entire time with the Great Personage, you're keenly aware that that clock is ticking and that you've had a certain amount of time set aside for that appointment and the doc is going to stick to that schedule.

    Hoping for the best for you and Jim.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  9. #365
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    Exclamation Jim's Meeting With Dr. P

    WARNING! THIS IS LENGTHY. YOU MAY NEED TO TAKE BREAKS FOR FOOD, WATER, AND AIR!

    ((((((Hugs to All)))))) ~

    Dr. P would not allow Jim to record their meeting today, because cell phones and other devices are not allowed to be used in the facility. (I suppose that has to do with the MRI/CT equipment?) So, thereís $100 wasted.

    Using the outline I prepared for him, Jim went through the past yearís history of his cancer treatments.

    CISPLATIN

    Dr. P denied that she told Jim that his first chemo drug, Cisplatin ďprobably wonít help you, but we have to try it.Ē She also denied that he needed two rounds of Cisplatin and the other chemo drug (canít recall the name of it) to qualify for Opdivo (the immunotherapy drug). We found substantial evidence on line, including the Opdivo site, which stated that Cisplatin and a co-chemo drug were needed prior to Opdivo to prove that the chemo drugs failed.

    OPDIVO

    Dr. P said that she asked Jim whether he has RA prior to giving him Opdivo. That is a blatant lie. Ten days into his agonizing RA flare, she finally called Jim and told him, ďYou did not tell me that you have RA.Ē And he had, numerous times. He continuously remarked to her and the nurses (and me and our friends) that he was surprised that he had no RA pain during the Cisplatin chemo. That is probably because he got a steroid as a pre-med.

    Opdivo did shrink the tumor in half, albeit causing Jim excruciating RA pain. That pain was mitigated by a Prednisone (steroid) regimen lasting about 3 weeks.

    Jim is on a maintenance dose of .5 mg (smallest dose) per day of Prednisone to manage his symptoms. He will likely take this for the rest of his life.

    Jim told Dr. P today that he would be willing to take Opdivo again, if the steroids would keep the RA pain at bay. She did not respond.

    NAVELBINE

    Jim had Navelbine infusions from May to October, interrupted by pneumonia in August. Iím guessing the Navelbine is a contributory factor in the pneumonia. The tumor also grew slightly during that treatment, so it was ineffective.

    He pointed out that she let him suffer with pneumonia symptoms for over a week, before she sent him to Urgent Care, then didnít call him to tell him the results. I called her on Saturday 8/6, and she told me to send him to ER.

    GEMCITIBINE

    Before Jim started the Gemcitibine infusion, Dr. P told him to tell her if he got a headache. Within 6 hours of his first infusion, he had a raging headache.

    He told her, and she said ďitís your sinuses,Ē to which he always replied, ďI know what a sinus headache feels like, Iíve had many of them. This isnít my sinus.Ē

    She kept giving him Gemcitibine despite the headaches, and after 6 weeks, she finally ordered a brain MRI. When Jim mentioned that, he said her expression changed to one of ďI know, I screwed up.Ē

    Is it just irony or coincidence that Jim didnít have headaches prior to Gemcitibine? And that he didnít appear to have a malignancy in his brain until after he had Gemcitibine?

    RADIATION

    She asked Jim if his headaches were gone, as if she was sure they are. He answered that he still has them, takes Tylenol, sometimes an extra steroid if the pain is fierce. He also gets what he describes as ďsharp stakes being driven into my temples.Ē As well as echoing in his ears, and soreness in his jaw.

    She seemed somewhat compassionate about this, as it is a lingering condition. And maybe, just maybe, itís her fault for not giving him proper treatment?

    TAXOL

    Jim began with the list of side effects, specifically, Chemo-Induced Peripheral Neuropathy (CIPN). According to chemocare dot org, over 30% of Taxol patients get CIPN. She agreed that this is a serious side effect, and itís unpredictable who will get it and who wonít. She agreed that he was at risk. Yet, she said NOTHING about this at his last visit, when she ordered the Taxol infusions.

    Jim asked Dr. P if she knew about the COLD MITTS and SLIPPERS. Nope. Never heard of it. REALLY??! I am incredulous that all oncologists and oncology nurses donít know about this means of staving off CIPN.

    Dr. P said she understood why Jim is hesitant, and he emphasized that he doesnít want to become debilitated or incapacitated. He wants to be able to help me and take care of Jon for as long as possible.

    Arthralgia (joint pain), which Jim has, can be exacerbated. She had nothing to say about that risk, nor anything about severe diarrhea, which would lead to weight loss and weakness.

    SECOND OPINION #1

    Dr. P said that Jimís tumor is slow growing, and its increase in size is minimal. She told him to take his time deciding what path he wants to take next.

    Then she said, ďMaybe you should get a second opinion.Ē

    Jim was astonished.

    Dr. P sent a referral to an oncologist at either UCLA or USC. (Jim canít remember, and no one wrote it down for him.) Depending upon traffic, both of those locations are at least 90 minutes from our home. Thatís a total of 3 hours of driving, probably in heavy traffic to/from.

    Letís say he sees a doctor there, who can treat him in a way that Dr. P canít. Every time he has a Dr.ís appointment, a test, an infusion or other treatment, or surgery, or whatever, Jim will have to drive 3 hours to/from. What if he canít drive? Does he take Uber?

    Itís not like Jimís cancer is rare; in fact, it is extremely common. What are they doing at UCLA or USC differently than what they are doing here in our county? We also have UCI, which is about 1/2 hour drive in good traffic, but sheís not sending him there.

    Also our hospital network is connected somehow to Cancer Centers of America. So why not just send Jim to Arizona? (sarcasm)

    Does it make sense that doctors at UCLA/USC etc. donít share their information with other physicians throughout the world? Shouldnít Dr. P have access to all of the latest things in cancer treatment? Do UCLA/USC have some special machine that they donít have here?

    Itís highly unlikely that Jim will go to this consult, given the distance and amount of time it would consume. He just is not up to having a day that long and driving that far and that much. And he doesnít want to be in a car, driven by someone else, because this is the height of flu season.

    SECOND OPINION #2

    Dr. Aís referral went through quickly. One problem: We requested Dr. PK. Jim has an appointment with a different doctor in the oncology department. He received a message late this afternoon that he has an appointment with Dr. K on 2/22. Both of them are young and Korean. But they arenít the same person!

    So, I emailed Dr. A asking him why he referred Jim to Dr. K instead of Dr. PK. Jonís home health nurse specifically told us to ask for Dr. PK. I guess weíll find out tomorrow.

    CHEMO TEACH

    After a year of chemo treatments, Dr. P referred Jim to a Chemo Teach class. This is where new patients learn about chemo, side effects, what to have on hand, etc.

    Itís flu season. Did I mention that? The last thing Jim needs is to be in a room full of people to learn about what chemo can do to you. Just look at the list of drugs heís had. He should be teaching that class!

    Dr. P waited until the horses had escaped to close the barn door.

    Oh ~ and Jim said that the scheduling desk told him that last week a respiratory virus was going through the staff. Yet, none of them are wearing masks. And Jim was the only patient wearing a mask. A proper mask and gloves. Such a simple way for people who have cancer, and those who are treating them to prevent a flu fatality.

    Jim flaked out on his futon nest and is sleeping. Heís exhausted from the stress, and now, he has some relief. Iím cooking a Tofurky ham, and weíll enjoy Jimís roasted garlic red potatoes leftover from last night. Iíll light the candles at dinner, and weíll attempt to make a romantic atmosphere. Or, we may just watch the Olympics.

    We donít know which direction weíre heading toward, we just want to keep moving forward.

    Thank you all for your love, prayers, encouragement, support, advice, guidance and friendship ~

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  11. #366

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    See, I warned you that the onco would not be aware of the ice mitts/boots. Makes me SO angry! In Canada, they are a part of treatment.
    Last edited by callyflower; 02-16-2018 at 05:25 AM.

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  13. #367
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    Rose, so much is going on. It is hard to think I am sure and harder still to know which direction to go. I have nothing to add other than to say that I had a cousin who had cancer and was being treated at University of North Carolina Medical Center, a highly regarded hospital. They were not getting anywhere with him and finally admitted they did not know anything else to do. He went to another hospital that took him and his wife a day to get there and a day to get back, but it saved his life. What I wanted to say is he did not have to go but one time. They worked out the protocol they wanted UNC Hospital to follow and sent it to them. They then worked together. He lived probably another 8 to 10 years and died of something else.

    I understand that he and his wife did not have the added complications that you and Jim have in your life, but I just wanted you to know that even though he had a bad form of cancer it was a life saving trip. I can't remember where they went but they had a long trip and he was very worn out, but they were well received and it was worth their while. I don't know anything about any of your hospitals. The second one he went to was a famous one, but the name escapes me.

    I wish you and Jim much good luck in your search for answers.
    Last edited by Virginia; 02-15-2018 at 05:47 PM.
    Virginia


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    Good point, Virginia. I was thinking the same but you said it well.

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  16. #369
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    ((((((Hugs to All)))))) ~

    callyflower ~

    I am so glad that you were able to travel to UTSW and to Fort Worth for your surgeries. I'm sure you received outstanding care.

    I'm keenly aware of the benefits of university hospitals. In 1975, I had a rare infection, and my life was saved because I was in a university hospital. My sons were also in university hospitals many times, and their lives were saved. Likewise, their lives have been saved numerous times at our current hospital.

    Our hospital is part of a system of 5 hospitals, all top-ranked. It has state of the art technology, including robotic surgery. When Jim was hospitalized in the cancer unit with pneumonia, he couldn't praise it enough. Run like a 5 star hotel with gourmet food, and views of tranquil gardens from his room's window. Many of our physicians were residents at USC, UCLA, UCI, Stanford, others from the east, like Mass General, Mayo Clinic, Johns Hopkins, Cleveland Clinic. So, we have always received top level care for Jon and Michael, and now Jim, with the glaring exception of Dr. P.

    It is just impractical for Jim to receive treatment at UCLA/USC. I'm not even sure whether they would accept Jim as a patient, unless they feel that they can offer him something that our hospital can't. Most of the people, who we've known, who have gone to UCLA/USC went for rare conditions.

    I would have been shocked if Dr. P knew about the cold mitts and slippers. And if she did know about them, I wanted Jim to say to her, "Why didn't you tell me about them?"

    I'm with you in being angry that it isn't protocol here. Norway also uses them. We could learn so much from other countries.

    DR. PK & DR. K

    Jim called today to ask to have his appointment with Dr. K changed to Dr. PK. Unfortunately, Dr. PK is booked solid until March. About 6 weeks.

    Dr. A's assistant emailed us via the health portal this morning and speculated that Dr. K probably had an earlier opening, which is exactly what happened.

    I tried to temper my feelings, but I couldn't help myself. I explained to Jim that this is precisely why I wanted to get the process started earlier. Dr. PK is booked, because he's in demand. Dr. K is available.

    Jim apologized to me for not trusting my judgement. He agreed that he will listen to me from now on.

    He plans to call Dr. P's assistant tomorrow to ask how much "time" he can "take" to make his decisions. Dr. P can give him some kind of timeline, like a week, a month. If she indicates that the tumor's growth is slow enough to wait 2 months, then Jim will make an appointment with Dr. PK.

    He's also going to call the Infusion Center to ask about the Chemo Teach ~ what it is, whether it's a group or one on one, who teaches, how long does it take, and where is it located. He knows none of these things. This is how it works with Dr. P.

    Cancer is unbelievably stressful, and that stress is increased by all of this nonsense. We are frustrated.

    Thank you so much for your guidance and enlightening information, callyflower.

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Hi Rose,
    I'm so sorry the recording device did not work out. Why was the cost $100? My device was $30 plus shipping. I thought the link would show that one. My bad! I seem to remember a story in which an MRI machine exploded resulting in someone dying. Perhaps that has something to do with it. I told one of my relatives your whole debacle including the 2nd opinion. This is a direct quote from them
    "It's Jim's life. Not Dr P's life. Dr P will get paid anyway. Get a 2nd opinion immediately, whatever it takes."
    This relative saw someone die of cancer and is not a fan of doctors. Prayers you get the best care as a result of a 2nd opinion!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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