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Thread: Whew! I dodged the bullet on THAT one...

  1. #36
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    I have a 30 x 30 garage that I built back in the early 80's, great rehearsal space, and a 10 x 10 door for use as a garage, (although I never have)! It has turned into a storage facility for all my kids, and last year I decided to get my building back. Several trips to the mission, (caters to the homeless), got rid of a lot of stuff, but then we uncovered LOTS of usable baby clothes, and plastic bags full of stuffed animals. I brought everything to work to try to plan a trip to the mission, when one of my good customers mentioned that he needed his truck for the weekend to go to Mexico. He is a religious guy, (pretty loose with the God bless yous), and his church helps sponsor an orphanage. I asked if he could use the sacks of stuff, and he jumped on it!
    He said they could use all of it and it helped me out too!
    pdf64, J M Fahey, g1 and 2 others like this.

  2. #37
    Supporting Member Steve A.'s Avatar
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    From 4/28/2016... Just chillin' in my MBZ wearing my brand new $319 pair of prescription sunglasses... damn, just like those decadent rich bastards who I despise (more like feeling sorry for them because the best things in life ARE free.)

    Actually I only had to pay $4 for the glasses with the $315 allowance available once every two years for Kaiser Advantage Plus members. (I pay an extra $20 a month which goes towards extra benefits, like the additional allowance for glasses and Delta Dental which gives you a 40 to 60% discount from retail prices.)

    My prescription has been stable and I still have the glasses from 2013 and 2015 so why not go with prescription sunglasses this time around? It's like seeing a brand new world in 3D because when I'm outside sunlight kinda blinds me a bit with all of the glare. The last time I could see so well outside was when I dropped acid on the 4th of July in 1969...

    20160428_104939321.jpg

    Steve Ahola

  3. #38
    Supporting Member Steve A.'s Avatar
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    Well, today I started stage two of my chemo treatment (three 21-day cycles with* Day 1 in the chemo lab)... and no side effects so far! Day 1 of the first cycle on Dec 21 my muscles started going numb while driving home, and the cramps and numbness just got worse and worse for all 3 cycles.

    For stage two they listened to my complaints and switched me to cisplatin, which I had with no noticeable side effects in the Fall of 2013. Cisplatin was the original platinum-based chemo drug but they had to carefully monitor your liver functions. Oxaliplatin is the 3rd generation drug with the main side effect being peripheral neuropathy. Unfortuneately I already have a serious peripheral neuropathy condition so it was like neuropathy to the nth power.

    https://www.caring.com/questions/wha...platinum-chemo

    During the first cycle they responded to my complaints of neuropathy by prescribing or recommending pills to take or procedures for me to try but never once considered the dosage. This was before the surgery so I figured they needed to hit me hard so I just grin and bear'd it.

    Well, there has been one side effect of cisplatin, fatigue, but I can deal with that by lying down and taking naps... that is something I'm very familiar with!

    Steve Ahola

    P.S. Well, it is officially noted: I've lost 61 pounds since February 8th, which required absolutely no will power on my part because of nausea and complete lack of appetite (which thank God is coming back.)

  4. #39
    Old Timer J M Fahey's Avatar
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    Good to know you are following the right path and with good results.
    As of the weight loss, although for the wrong reasons, result looks good, you *look* quite fit now ... at least better than the old avatar which you might update .... just sayin'
    pdf64 likes this.
    Juan Manuel Fahey

  5. #40
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    don't forget the joker g1's Avatar
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    Quote Originally Posted by J M Fahey View Post
    you *look* quite fit now ... at least better than the old avatar which you might update .... just sayin'
    Just not with the new shades or we won't be able to tell you from tboy.
    Quote Originally Posted by Justin Thomas View Post
    In my ideal world, I'm not too loud - your room is too small!

  6. #41
    Supporting Member Steve A.'s Avatar
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    It doesn't hurt to complain to your doctor...

    It doesn't hurt to complain to your doctor...

    During my first three 21-day chemo cycles starting right before Christmas I had some very severe side effects which had exacerbated my existing peripheral neuropathy, making it difficult for me to play guitar among other things.

    When I was scheduled to start three more chemo cycles in May I discussed alternatives with my oncologist and one of the oncology pharmacists. Instead of Oxaliplatin for the IV treatments in the clinic I was switched to an earlier version of the drug which I had taken in 2013 with no problems, cisplatin.

    That was a big improvement but I was still having extreme reactions to the pills I was to take at home, Xeloda. The side effects of that drug build up until they can reach a point called "Xeloda toxicity" and that certainly happened with me

    It turns out that there was an alternative which would be just as effective: a 24/7 IV of a drug call 5-fu...

    https://en.m.wikipedia.org/wiki/Fluorouracil

    I had a port installed on my chest for the chemo drugs and the 5-fu is in a small "baby bottle" connected to the port which is good for 7 days. So far so good. There are some side effects- the mucous membranes in my mouth get extremely chapped and I am very fatigued, but my fingers are fine and I can play guitar better than ever. And isn't that what life is all about...?

    When I determined that I had reached the point of Xeloda toxicity I was very tempted to not say anything and just not take the pills. That would have been the easy no-confrontation approach I've often followed in my life. In fact had my oncologist not been on vacation that is probably what I would have done.

    But I am glad that I am following the alternative regimen just to make sure that the cancer is completely gone. Just one more month and I'll be done... something to look forward to!

    Steve A.

  7. #42
    Supporting Member The Dude's Avatar
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    Good news, Steve! Thanks for the update and wishes for good health to you.
    “Yeah, well, you know, that’s just, like, your opinion, man.”

  8. #43
    Senior Member Enzo's Avatar
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    I was very tempted to not say anything and just not take the pills. That would have been the easy no-confrontation approach I've often followed in my life. In fact had my oncologist not been on vacation that is probably what I would have done.
    Oooooh.

    I always tell my doctors when I don't take meds. Probably overkill, I even tell them whether I had or had not taken today's doses yet when I go to their office. Their treatments are predicated on me taking the prescribed medicines. If I don;t take them and keep that secret, they may adjust their treatment based on what they THINK I am doing rather than what I am doing.

    Plus I never rely on the grapevine, I always directly address what goes on at the other doctors offices. When my family doc prescribes some pill, I OK it with my cardiologist first. And vice versa.
    Education is what you're left with after you have forgotten what you have learned.

  9. #44
    Supporting Member Steve A.'s Avatar
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    Quote Originally Posted by Enzo View Post
    Oooooh.
    I always tell my doctors when I don't take meds.* Probably overkill, I even tell them whether I had or had not taken today's doses yet when I go to their office.* Their treatments are predicated on me taking the prescribed medicines.* If I don;t take them and keep that secret, they may adjust their treatment based on what they THINK I am doing rather than what I am doing.

    Plus I never rely on the grapevine, I always directly address what goes on at the other doctors offices.* When my family doc prescribes some pill, I OK it with my cardiologist first.* And vice versa.
    I am usually very upfront with my doctors,* and very proactive about my health. But the more I read up on the meds I was taking the more I realized that recommended procedures were not being followed. When I complained about severe side effects during first chemo cycles they offered supposed fixes to treat the symptoms although drugs.com suggested lowering the dosage (something that was not mentioned to me.) And the subject of "Xeloda toxicity" was brought. Being weakened by the chemo drugs didn't exactly put me in a good mood for dealing with a confrontation.

    Frankly it was easier for me to deal with this while my regular oncologist was on vacation (because of our past history I am a little bit intimidated by him.)

    In any case the title of my post was "It doesn't hurt to complain to your doctor..." and I was encouraging people to discuss problems with medications with their doctor.

    Steve A.

  10. #45
    Supporting Member Steve A.'s Avatar
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    "Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects."

    Standard boilerplate bullshit! How do THEY know that the prescribing doctor researched all of the possible side effects and looked into alternate medications or treatments??? In most cases (especially with antibiotics!) the doctor is just taking a shot in the dark. Unless the lab tests a culture of the bacteria they do not know what antibiotics will be effective in treating it.

    I learned this first hand when I had a recurrent MRSA+ infection in my lungs for over 2 years. At least for me taking the wrong antibiotic killed off the good bacteria in my lungs allowing the nasty ones to take over. When I finally convinced my doctors to run a lab test on a respiratory culture they were able to identify it as MRSA. Pills only helped temporarily... it took a vancomycin IV to eventually wipe it out.

    And it was only last summer that I learned that a heart medication I had been taking since November 2005 had really been screwing me up, causing several medical conditions which required additional medications.

    Steve A.

  11. #46
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    hey Steve (I'm not a doctor and I have no idea if this applies to your specific situation, but) FWIW stumbled into this:

    Catalyst: Exercise and Cancer - ABC TV Science

    (apparently a targeted exercise regimen can help with tumors and side effects from chemotherapy. *No video available if you are outside AUS it seems*, however a transcript of the show is on the page.)

  12. #47
    Supporting Member Steve A.'s Avatar
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    Quote Originally Posted by dai h. View Post
    hey Steve (I'm not a doctor and I have no idea if this applies to your specific situation, but) FWIW stumbled into this:

    Catalyst: Exercise and Cancer - ABC TV Science

    (apparently a targeted exercise regimen can help with tumors and side effects from chemotherapy. *No video available if you are outside AUS it seems*, however a transcript of the show is on the page.)
    Thanks for the post. I've used exercise in the past to deal with chemo treatments but I am on chemo IV drugs 24/7 this time around.

    Steve A.

  13. #48
    Old Timer tedmich's Avatar
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    Good luck Steve, eat good food and expose yourself as much as possible to the love of family and friends!

  14. #49
    Supporting Member Steve A.'s Avatar
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    Quote Originally Posted by tedmich View Post
    Good luck Steve, eat good food and expose yourself as much as possible to the love of family and friends!
    June 20th: As for eating good food the big side effect I am experiencing from the 24/7 5-FU IV is mucositis with my lips and gums very badly chapped and bleeding.

    http://oralcancerfoundation.org/comp.../mucositis.php

    Getting back to my discussion with Enzo regarding patient/doctor communications I sent my oncologist a PM around 7AM this morning explaining how the mucositis has gotten really bad and asking if postponing the next 5-FU infuser for a week to allow my gums to heal is an option. I got absolutely no reply and left a message for the on-call oncology nurse to call me which she finally did around 4PM. I explained all of the problems and she said she would send my doctor a PM. Still no response from him.

    I have an appt in the IV clinic tomorrow to be checked for a new 7 day infuser but I may go to the ER instead. I haven't been able to eat hardly anything at all and think I need to receive nourishment through an IV.

    June 21st: After the blood tests came back from yesterday my request to postpone the 5-FU IV for a week was granted. Still no word from my oncologist but the oncology nurses handled it.

    I'm here in the ER getting rehydrated and treated for the mouth bleeding. I was extremely exhausted yesterday after going to get my bloodwork done... I had to have my neighbors help me walk to my front door, taking it in 4 sections and sitting to rest after each one.

    Steve A.

    P.S. I got about 4 hours of fresh air last evening... After 3 hours my sinuses opened up and I could smell the night blooming flowers. God, I love life!

    EDIT The ER doctor talked to my oncologist and I'll be spending ~2 days in the hospital until my lips heal. No 5-FU until they are healed!

    EDIT June 22: Hospital staff has been great. I can't talk right now because of lips but have started to use Evernote app with my Android tablet to communicate with nurse. (They are still looking for pen, paper and clipboard which I didn't have time to pack yesterday... but I did bring two Android tablets, bluetooth headphones, charger and portable power pack to watch movies!)

    I wish I would have been using tablet to communicate last night as I felt very alienated... like a stranger in a strange land!

    EDIT June 22: Not to be gross but with the chemo-induced mucositis there has been large quantities of bloody mucus created in the back of my mouth. The first thing the doctor did last night was get me a suction pump to extract that crap out of my mouth... something I really wished I could have done at home! (I think it was this mucus which would migrate to my lips and gums exacerbating the situation.)
    Last edited by Steve A.; 06-22-2016 at 04:23 PM.

  15. #50
    Senior Member Enzo's Avatar
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    Sounds awful.

    Since you are communicating electronically, you can now work on your Steven Hawking impersonations.
    Education is what you're left with after you have forgotten what you have learned.

  16. #51
    Supporting Member Steve A.'s Avatar
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    PM I sent to oncologist yesterday (06/24):

    It looks like I will be discharged tomorrow as my labs are starting to look good. My mouth is still tore up and it is very painful for me to talk or even smile. I was hoping that we can wait for my mouth to heal before restarting chemo. Looking at the calendar will Wednesday July 6th work?

    The cisplatin in the clinic has not been a problem but I am concerned about the 5-FU. Can we reduce the dosage and have me take it every other week? It was during the second week that the mucusitis started to get really bad.

    Let me know what you have in mind.

    Thanks, Steve
    Reply from my oncologist yesterday:

    Hi Steve,

    We absolutely should hold off for now. Let me think about the 5-FU. We may want to drop it all together.
    NOTE: It was a few years ago that I discovered that the PM's at Kaiser Permanente are NOT Private Messages... practically any employee besides their janitors can read them.

    In any case I have learned to work with that system:

    #1. I make sure I don't say anything that I don't want the whole world to read.
    #2. I can use the PM's to intentionally pass information on to other members of their staff. Like last week I did not have to repeat what I wrote to my oncologist to the oncology nurse who was dealing with my problems. Which was grear because it was very painful for me to talk.

    Kaiser is a HUGE system which both insures and treats their members, and communication with your doctors was always a problem. You'd keep calling until you finally reached your doctor's nurse, give her the message and then begin the interminable wait for a response. The system of using PM's is a big improvement.

    BTW the person who developed the PM system at Kaiser was Mike P., who moved on to become one of the teachers in the COPD program at John Muir Hospital where I participate in their maintenance exercise program (at least when not prevented by chemo drug side effects.) And before that Mike P. was a successful lawyer on the East Coast. Amazing how he had 3 careers!

    Steve Ahola

    June 25th: I'm home! First thing I did was sleep for about 5 hours since I was not getting good sleep at the hospital... a very loud fire alarm went off at 3:00AM last night. No fire- it turned out to be caused by someone smoking. Which reminds me of the time I was working at a 150-unit condominium conversion project back in 1982. I was painting the top of the walls in the halls and didn't think to put my cigarette out when I got to a fire alarm sensor. Yep, I was kinda out of it back then...
    Last edited by Steve A.; 06-26-2016 at 05:47 AM.

  17. #52
    Old Timer J M Fahey's Avatar
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    Congratulations on steadily fighting it

    Yes, side effects are VERY annoying, period.

    Big problem with Cancer is that its cells are basically the same as regular tissue, definitely same DNA , with a 0.00000001 % difference which makes them grow wildly and distorted, literally "a few lines of code" difference , my point being whatever successfully attacks them, will also smash regular tissue ... including your gums.
    A very delicate balancing act.

    In any case, I´m happy you are following treatment.
    Juan Manuel Fahey

  18. #53
    Supporting Member Steve A.'s Avatar
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    Quote Originally Posted by J M Fahey View Post
    Big problem with Cancer is that its cells are basically the same as regular tissue, definitely same DNA , with a 0.00000001 % difference which makes them grow wildly and distorted, literally "a few lines of code" difference , my point being whatever successfully attacks them, will also smash regular tissue ... including your gums...
    I have heard that argument for years but advances have been made. 5-FU and Xeloda specifically attack cancer cells (Xeloda turns into 5-FU inside the cancerous cells.) The way I understand it there are certain markers inside the cancerous cells which they look for and there are different chemo drugs for different tissues. For example, there are no chemo drugs specifically for esophageal cancer so they use ones for breast cancer and gastro-intestinal cancer.

    As for the side effects they are very powerful drugs but most people don't get the side effects I experienced: extreme peripheral neuropathy with Xeloda and very serious mucositis with 5-FU.

    FWIW by themselves the chemo drugs I receive at the clinic on Day 1 don't bother me that much and when I was on chemo in the Fall of 2013 for lung cancer I experienced hardly any side effects except fatigue- I think that comes with the territory.

    Steve Ahola

    P.S. At Kaiser only some of the doctors use the PM system to their advantage, i.e., eliminating unnecessary office visits. (They will often order lab work or an x-ray for me to have done before the appt so they don't have to see me twice.)

    The last PCP (Primary Care Physician) I had before switching to a much better doctor at the main facility last summer never learned how to enable the Reply button on his PMs which made it difficult to conduct extended conversations.

  19. #54
    Supporting Member Steve A.'s Avatar
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    My strategy about using PMs at Kaiser worked again! My oncologist did not come in today so he didn't cancel my appts for today and tomorrow. The oncology nurse read our messages and could see my doctor's intentions.

    I really don't mind the medical staff reading my PMs- it is the operators who answer the phone to determine if the call should go to an advice nurse. BTW it would be great if the medical staff in ER had easy access to the PMs but they are on their own computer system (when I went to ER last Tuesday I could hardly talk at all and it would have made things a lot easier.)

    Steve A.

    P.S. D'oh! For the past few weeks I have had to apply Vaseline to my lips every hour when I'm awake. I use my finger because I need to feel where they are chapped so I keep getting it on the screen of my tablet which requires frequent cleaning.

    Sure enough when I went to the ER last Tuesday expecting to be admitted to the hospital I forgot to pack my screen cleaning kit. Not too bad as I just got some alcohol wipes from a nurse. Still a hassle cleaning off the Vaseline until it finally occurred to me: why not use a finger from my left hand to apply it? D'oh!

  20. #55
    Senior Member Enzo's Avatar
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    Now you are thinking. You will master this sick-guy thing yet, I am confident.

    Do any of those flavored lip balms from the checkout lane at the grocery or just Chap Stick work? Feel with a finger then use the stick?
    Education is what you're left with after you have forgotten what you have learned.

  21. #56
    Supporting Member Steve A.'s Avatar
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    Quote Originally Posted by Enzo View Post
    Do any of those flavored lip balms from the checkout lane at the grocery or just Chap Stick work? Feel with a finger then use the stick?
    I was told to use Vaseline on my lips when I started the 5-FU 24/7 home infusion. I figured that Burt's Bees lip balm would work just as well but it didn't and my lips had gotten pretty tore up from using it (but not bad enough to go to ER.)

    There is still plenty of Vaseline on my lips when I need to reapply it, only it isn't where I need it to be. Using a finger on my left hand works great because I use my right hand fingers to manipulate the touch screen on my tablet. Problem solved!

    Steve A.

  22. #57
    Senior Member Enzo's Avatar
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    You know the Burt's Bees lip balm stuff is OK and all, but the real problem I have is getting it on their tiny little lips.
    rjb and g1 like this.
    Education is what you're left with after you have forgotten what you have learned.

  23. #58
    Supporting Member Steve A.'s Avatar
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    Good news!!! The oncologist has changed my chemo schedule so that I will have one more 6 hour treatment in the chemo clinic in 2 weeks and I'm done. No more 20 days of in-home chemotherapy with the pills (Xeloda) or the IV pump (5-FU), both of which were causing the terrible side effects. After that we'll do some imaging for him to evaluate which I think will turn out great. (I seem to have a spider sense that tells me when I have a low-grade infection or budding tumor.)

    I mentioned this before briefly but the extreme peripheral neuropathy caused by the Xeloda pills I was taking daily during the first three 21-day chemo cycles starting December 21 was screwing up my fingers and interfering with my ability to play guitar which is the one thing that always gives me joy in life.

    Fortunately the 5-FU home infusion pump did not affect my fingers at all and I'm playing guitar better than ever before, in part due to my doctor stopping diltiazem last September which after taking for10 years had weakened all of my muscles. And playing finger-style with no pick most of the time has opened up all sorts of new avenues. Not to mention that learning how to do professional setups with fret leveling and recrowning over the past 3 years has made my guitars much easier to play.

    In short I'm a very happy camper and just need to start eating better after my mouth and gums heal enough for me to use my denture uppers again. The nausea from chemo and stomach/esophageal surgery has subsided. It made it very difficult to eat well and I've lost 65 pounds since the surgery was performed March 1st which incidentally reduced my stomach capacity by ~35%. (I've lost 100# since last September with absolutely no effort on my part!)

    I definitely was not looking forward to 3 more weeks of in-home chemotherapy... hooray!!!

    Steve Ahola

  24. #59
    Supporting Member The Dude's Avatar
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    That's just awesome! I'd like to "triple-like" it!

    P.S. You should change your avatar to the pic you posted with the groovy shades.
    “Yeah, well, you know, that’s just, like, your opinion, man.”

  25. #60
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    Quote Originally Posted by Steve A. View Post
    "Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects."

    Standard boilerplate bullshit! How do THEY know that the prescribing doctor researched all of the possible side effects and looked into alternate medications or treatments??? In most cases (especially with antibiotics!) the doctor is just taking a shot in the dark. Unless the lab tests a culture of the bacteria they do not know what antibiotics will be effective in treating it.
    Ironic that I mentioned preventable medical errors to you in the other thread and that you are talking about not-quite-trusting your doctors AND bacterial infections.

    I had a bacterial infection that my gastro-intestinal specialist didn't believe I had. He thought I was fine and waved off my concerns. I was pretty sure something was wrong, so I stuck with it and went through procedure after procedure, racking up big bills for my HMO, until finally, at the end of all his diagnostic ideas, a simple and cheap stool sample test proved I had some rare bacterial infection that was easily cured with antibiotics.

    Had I trusted his hand-waving, who knows how long the infection would have gone untreated? Of course, I took every single pill of the prescribed antibiotic. Certainly I could've saved my HMO a bunch of money had I simply insisted on the cheap stool sample test first thing, but oh well, you gotta trust your doctors somewhat (otherwise why hire them at all?)

    I hope you get better faster. Keep at it, man.

  26. #61
    Supporting Member Steve A.'s Avatar
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    Quote Originally Posted by dchang0 View Post
    Ironic that I mentioned preventable medical errors to you in the other thread and that you are talking about not-quite-trusting your doctors AND bacterial infections.

    I had a bacterial infection that my gastro-intestinal specialist didn't believe I had. He thought I was fine and waved off my concerns. I was pretty sure something was wrong, so I stuck with it and went through procedure after procedure, racking up big bills for my HMO, until finally, at the end of all his diagnostic ideas, a simple and cheap stool sample test proved I had some rare bacterial infection that was easily cured with antibiotics.
    I was in the hospital for 2 weeks in 2011 for Ludwigs Angina***, 8 days of which I was intubated and in a medically induced coma. I questioned my doctor's decision to discharge me telling her that I was still sick. But since my temperature was not at least 100.4° she said it wasn't a fever. (My normal temperature is ~97.4° so 99.4° is like 100.6° for me.)

    FWIW I learned later that as a Medicare client one phone call could have given me an extra day while they reviewed my case. The discharge planner was able to get me transferred to a skilled nursing facility for a few days for speech therapy (with Ludwigs Angina my mouth swelled up like a balloon.) As it turned out I had to push for an early discharge after 4 days because my room was so cold that it was making me sicker.

    A strange coincidence: I used to do HVAC service calls for the facility and knew about all of the problems with their heating system. To turn up the heat for my room would have caused other rooms to get too hot. A quick fix would be to use an oil-filled space heater in the cold rooms but that was not an option. (Cheap bastards!)

    In any case I soon ended up in ER with a c. diff infection quickly diagnosed with a stool sample and treated with vancomycin. But my problems weren't over. By July I still had a nagging cough and saw my doctor who prescribed my go-to antibiotic, clindamycin, but it did not help. It kept getting worse and I was told that it was chronic bronchitis.

    I started to cough up a lot of nasty crap and kept asking my doctor and the advice nurses whether I should bring a sample in to be tested in the lab. "No, we never do that." I finally got them to test a respiratory culture in April 2012- almost a full year after being hospitalized- and it came up positive for MRSA. My case got turned over to an infectious disease specialist who would order cultures and prescribe whatever antibiotic that the particular strain was susceptible to. This went on back and forth between different antibiotics until September 2013 when I was FINALLY put on vancomycin IV treatment (something I had requested a year before that but was told that there were too many possible complications with home infusion.)

    I had to have a PIC placed in my right arm for chemo treatment for lung cancer to start in September 2013 but we needed to get rid of the recurring MRSA infection first so they set me up with home infusion of vancomycin which turned out to be pretty cool. The home infusion consisted of a pressurized small "baby bottle" which I would connect to the PIC for what was supposed to last 2.5 hours. The first home infusion took 6 hours because of problems with the PIC: unless the tubing was in one exact position the flow was reduced.

    The treatment was supposed to last a week or 10 days but actually took twice as long because of a stupid mistake in drawing my blood for testing the vancomycin levels. The nurse had drawn the blood directly from the PIC and it came out very high so they cut my dose in half. After a few days I could tell that the vancomycin wasn't working so I had blood drawn from my left arm with a needle which confirmed my suspicions and my dosage was returned to the original levels for an additional 10 days just to be sure.

    The following link has a video showing how pressurized bottle home infusion works:

    http://www.halyardhealth.com/solutio...mp-eclipse.asp

    The following article explains the advantages of home infusion which at the time of publication (October 2008) was not fully covered by Medicare, which paid for the drugs but not the cost of administering them at the time:

    http://www.wsj.com/articles/SB122402901765934551

    SUMMARY: In order to sum up my recommendations insist that lab tests be done whenever possible for persistent or recurring infection. With anything less than a sample tested in the lab your doctor is just guessing which antibiotics will work, like throwing shit against a wall to see if it sticks. If you are coughing up nasty-looking crap put it in a sterile specimen bottle and store it in your refrigerator until your doctor orders a respiratory culture lab test. Hopefully you have all of your ducks in a row because there is a time limit on how soon the lab wants to get the specimen.

    There is one consequence of using the wrong antibiotic that I learned the hard way: it can kill off bacteria that are beneficial or atbleast not harmful. One example was the c. diff infection in my intestines created by antibiotics given in the hospital presumably without probiotics. While that was easily fixed by taking vancomycin orally it was quite a different story with my various lung infections.

    What I learned at least for me was that at times there will be bacteria in my lungs but they are hopefully nice ones that cause no damage. Like how a vacant house can attract destructive squatters, destroying benign bacteria in my lungs can allow nasty bacteria to take over. If you've had a lung infection for a few weeks and are coughing up nasty looking crap insist that it be tested in the lab so that the infection can be treated properly.

    I am very fortunate to belong to Kaiser Permanente because they do practically everything in-house which keeps their costs for labwork down because they are not charged the mark-up when the work is outsourced. And as a Kaiser member I am very lucky to have Medicare which reimburses them for many of their costs which otherwise would have had to come from premiums and copays. (My guess is that Medicare pays Kaiser a certain amount per month for each enrollee which covers a lot of the basic services but for additional services Medicare usually pays 60% or 80% of the bill. For DME (durable medical equipment) Medicare pays 60%, Kaiser pays 20% and my copay is 20%. But I think that Medicare pays 80% for typical medical services.

    Steve Ahola

    P.S. My mouth has recovered enough that I hope to be able to put my dentures (uppers) in later today for the first time in 2 weeks which will allow me to eat real food. Hooray!

    *** "Ludwig's angina... is a serious, potentially life-threatening cellulitis, or connective tissue infection, of the floor of the mouth, usually occurring in adults with concomitant dental infections and if left untreated, may obstruct the airways, necessitating tracheotomy."

    In December 2010 I had a bad case of cellulitis in my lower legs caused by stasis dermatitis, and the cellulitis bacteria got into my blood which could have been fatal if not treated. During one of my subsequent visits I found my left lower gum getting a little bit numb and asked the nurse to tell the doctor but I never heard back from him. The condition got worse; my dentist told me it was a medical problem, my doctor said it was a dental problem so I did nothing... at least until the end of April 2011.

    On Wednesday I found that the swelling in my mouth made it hard to swallow foods. On Thursday I found that I could only swallow liquids and jello, and on Friday night I found that I couldn't even do that so I called 911 for an ambulance. The last thing I remember before waking up 8 days later was the ER doctor saying "this looks really bad" and me replying "it's lime jello" which was the last thing I tried to swallow.

    https://en.m.wikipedia.org/wiki/Ludwig%27s_angina
    Last edited by Steve A.; 07-02-2016 at 06:36 PM.

  27. #62
    Supporting Member Steve A.'s Avatar
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    Nutrition! I've always liked what used to be called Carnation Instant Breakfast (in powder form so I could add fresh milk to it.) It is now called Carnation Breakfast Essentials. After surgery in March I was sent home with a case of 8 oz Boost drinks (vanilla) for a copay of $3.50 but the smell of that shit gagged me.

    One complaint is that while there are 5 different flavors you will usually find only one of them available in the 10 packs (which usually sell for about $5): Rich Milk Chocolate. The other 4 flavors are available in the Variety pack, 2 packets each, so that you can at least try them out (it costs closer to $6.)

    I like the Strawberry Sensation and Classic French Vanilla so I ordered 6 10-packs of each for $30 only to find that the Vanilla dropped to $21 since Friday. (All of these prices include free shipping with Amazon Prime- or I suspect for orders over $35. Perhaps someone can confirm that.)

    Strawberry Sensation:
    https://www.amazon.com/gp/product/B0037YXQ5W/

    Classic French Vanilla:
    https://www.amazon.com/gp/product/B0037YPVBE/

    Dark Chocolate:
    https://www.amazon.com/Carnation-Bre...dp/B0037YP75E/

    Classic Chocolate Malt:
    https://www.amazon.com/Carnation-Bre...dp/B0037YPV1Y/

    Rich Milk Chocolate:
    https://www.amazon.com/gp/product/B0037YXQMA/

    Variety Pack:
    https://www.amazon.com/gp/product/B0037YXQSY/

    Steve Ahola

    P.S. My mouth has healed enough for me to try real food, too... Bon Appétit!

  28. #63
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    Steve, I can't imagine what you're going through and I hope I never find out. What I went through was nothing compared to your last several years. Keep fighting the good fight!

    By the way, when I was in the hospital at the end of May I ordered breakfast one day with a chocolate milk, an English muffin and some sausage I think. Anyway, when the food service gal got there all she had was a bottle of Ensure. I said that's not mine. She said yes it is. I said no, I ordered blah blah blah. She said no, this is your breakfast. At this point I more sternly (as much as I could at the time) said NO, I didn't order that! She looked at the receipt, said "oh, wrong room", went back to her cart and got the food I ordered.
    Steve A. likes this.
    --Jim


    He's like a new set of strings... he just needs to be stretched a bit.

  29. #64
    Supporting Member Steve A.'s Avatar
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    No more chemo!

    Because of the bad side effects from my recent chemo treatments my oncologist decided Tuesday that enough is enough and that any further treatment would cause more damage than good. Hooray! I'd already done three 21-day cycles before my surgery on March 1st and did about half of the scheduled post-op chemo cycles before ending up in the hospital a few weeks ago.

    I got more good news on Tuesday... my application for another year of Medical Financial Aid (the MFA program) at Kaiser Permanente was approved (it was due to expire next week.) This will be the 7th year I've been on the program based on my income from SSDI, and it covers all of my co-pays except for DME (durable medical equipment like my CPAP machine.)

    It has been a Godsend because the copays in the Kaiser Medicare Advantage policies are pretty steep, like around $200 for CT and MRI imaging. Even bloodwork at $45 a pop can add up to a lot of money. There has been information about the program printed on the back of every Kaiser receipt: "If you are having difficulty paying your medical bills..." which I had always ignored.

    It was during a phone consultation regarding my medications in March 2010 that I mentioned a concern that I might fall into the dreaded prescription drug "donut hole" later in the year that the program was explained to me. Your income must be less than 350% of the federal poverty level and you need to apply for (and be denied) Medicaid and the Medicare Part D prescription drug subsidy. Definitely worth looking into if you think that you might qualify (I don't know if other health insurance plans offer it.)

    Here is an article about most hospitals having an MFA program if you run up a large bill there:

    How to Erase Your Medical Debt

    Steve A.

  30. #65
    Senior Member Silvertone Jockey's Avatar
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    Speaking of dodging bullets I have dodged a couple myself and did so without the help of a doctor. I haven't seen a doctor in over 30 years and I just turned 58. Anyway last summer I started displaying all the symptoms of heat disease, chest pain, left arm pain, burning toes, and unusual fatigue. It was all I could do to make it till the end of the day at work and I never had problems with that no matter how many hours. Well my wife had a stent put in 3 years ago so searching for some kind of natural cures for her so she could quit taking some of the medications which were really causing her problems mentally and physical turned up something that I think is a miracle.

    As some of you know heart disease doesn't normally reverse itself without surgery, but today i feel like a million bucks and I never saw a doctor. Its called Serrapeptase, and its an enzyme that is actually able to gradually unclog your arteries, something that your doc will tell you is impossible. It is possible and I swear by it now. Costs 25 bucks for 90 caps which for me is a months supply. I use Doctors Best brand. It's an over the counter supplement that is a lab recreated version of the enzyme that a silk worm moth uses to escape from the cocoon. I was discovered by a now deceased German doctor who used it to treat his worst patients who were too weak for surgery

    I quit taking it a while back but the symptoms started returning so now I figure I'll be on it the rest of my life. $25 a month is CHEAP for something that usually requires 100's of 1000's of bucks not to mention the recovery problems and even worse the meds the doc prescribes afterwards. Google it for more info.

    While I am positive about my heart disease (my younger brother just had a heat attack, and it runs in my family) I cannot say for sure about the second bullet being as I never got a diagnosis, but I noticed this lump on my hand which started getting bigger about a year and a half ago. My right hand the same one that spent many MANY hours inside hi powered RF amplifiers when I was tuning them after construction or repairs. Google is your friend and so I researched something for cancer and found the baking soda, and maple syrup cure (google that for more info it could save your life) and if you have cancer you have nothing to lose by trying this one and everything to gain if it works for you. Long story short the lump has almost disappeared.

    Try these if you are in a similar boat as neither has any side effects whatsoever and they both will not interact with any meds you are taking to my knowledge

  31. #66
    Supporting Member Steve A.'s Avatar
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    Got a reprieve from the guv'nor!

    I was scheduled for my final 6 hour chemo appt at the clinic on Tuesday but was feeling pretty weak on Monday so I requested that it be moved up to the 19th. I went in anyway to get rehydrated with a bag of saline and met with my oncologist right after that. "We're going to cancel your final chemo appt. At this point it would probably do more harm than good." Or words to that effect. Hip-hip-hooray!

    The mucusitis has subsided enough that I can now wear my dentures and eat solid food. Hallelujah!

    Steve A.

  32. #67
    Senior Member Enzo's Avatar
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    Man, Steve, it just sounds so grueling.
    Steve A. likes this.
    Education is what you're left with after you have forgotten what you have learned.

  33. #68
    Supporting Member Steve A.'s Avatar
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    An update...

    It's been about a month since I last posted on this thread and almost 2 months since my reaction to the chemo drugs got bad enough to put me in the hospital for 4 days.

    I don't like to complain but there were about 8 weeks that I was unable to eat solid food because of the mucusitis. I started getting nauseated by my liquid diet so it almost turned into a fast with me losing another 20 lbs, much of that muscle mass that I really need!

    I had a CT scan done August 1st which showed no signs of cancer remaining and I went in last Monday for a Barium Swallow Test to make sure that my reconstructed esophagus and stomach were working properly... everything looked great!

    I guess I'd been very spooked about eating since food stopped going down my esophagus properly last October... I've been afraid to swallow anything unless I could chew it up into tiny little bits. The problem is that the more I'd chew the more nauseated I'd get. Yes, it had been so long since things were normal that I had actually forgotten how to chew and swallow solid food.

    So with Kaiser giving my esophagus a clean bill of health I've been eating solid food again, thank God. I have never been as weak as I was last Monday going to Kaiser and to make matters worse there was no volunteer available to push me from the handicapped parking lot to the X-ray dept. I used a push chair as a walker to get there... the longest walk I'd taken in 2 months. I was exhausted as all heck for the rest of the day and the muscles in my legs, butt and back were sore as hell for the rest of the week. (I'd been so weak that I'd hardly been able to get out of bed much more than an hour or two a day for the past month.)

    In any case I feel like I have made it through the whole ordeal still in one piece and that things are just going to get better and better for me healthwise. Whew!

    I just ran across this description of the surgery done in March...

    Q: What is the operation like?
    Minimally invasive esophagectomy is surgery to remove part or all of the esophagus, the tube that moves food from your throat to your stomach. After it is removed, the esophagus is rebuilt from part of your stomach or part of your large intestine.

    Laparoscopy is one way to do this surgery:
    • Your surgeon will make three to four small cuts in your upper belly, chest, or lower neck. These cuts will be less than 1/2-inch long.
    • The laparoscope, with a camera on the end, will be inserted through one of the cuts into your upper belly. Video from the camera will appear on a monitor in the operating room. Other medical instruments will be inserted through the other cuts.
    • Your surgeon will close off one part of your stomach with staples and cut this section off. This part of your stomach will be used to form a new tube to replace the part of your esophagus that is removed.
    • Your surgeon will remove the part of your esophagus where your cancer is located, and any other related lymph nodes in the area.
    • Your surgeon will join together your rebuilt esophagus and stomach in your neck or chest. Where they are joined will depend on how much of your esophagus was removed.
    • Lymph nodes in your chest may also be removed if your cancer has spread to them. Your surgeon will remove them through a cut in the lower part of your neck.
    • Your surgeon will place a feeding tube in your small intestine so that you can be fed while you are recovering from the surgery.
    http://www.mhs.net/services/thoracic...-questions.cfm

    Steve Ahola

  34. #69
    Supporting Member Steve A.'s Avatar
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    Updates...

    Nov. 15: I haven't posted anything on this thread for almost 3 months since there hasn't been much progress- I'm still very weak although I have started to go back to the health center gym for a few weeks now and am working a lot more around my house and garage. On some days I'm so sore from exercising my muscles the previous day or two that I have to take naproxen, but that's good... no pain no gain!

    I met with a GI specialist last week and the problem was identified: the mucositis (a side effect from the chemo) is still affecting me. I had noticed that I was still getting the thick mucus in my mouth (which had been the initial symptom.)* Well, evidently the mucosa in my GI tract is also coated with a lot of the thick mucus which has kept it from properly absorbing water and fat (as well as the water- and fat-soluble vitamins and minerals.)

    When I'd tell people that I was weak from dehydration their reaction was typically along the lines of "Hey dude, you need to drink more water!" Well, I learned that it was much more complicated than that although the good news is that the mucositis will eventually pass.

    https://en.m.wikipedia.org/wiki/Mucositis


    Feb. 16: I started taking 12hr 1200mg Mucinex twice a day shortly after writing that which has allowed my GI tract to better absorb water and fat. I had hoped that I didn't need to take it anymore last week but after a few days it became clear that I still needed to take it. Damn — it's been almost 8 months since my chemo ended and I still have side effects which have been fatal for many people...

    I've been going to the Health Center Gym several times a week since November and have been regaining my strength. Last Thursday I sat in with my old band for a full set. Here's a picture of me playing the singer's Tele. I got out my own gear for the last set (2016 LP Studio Faded, modded EHX Soul Food and Lee Jackson Mr. Springgy reverb pedal plugged into my 35W ZT Lunchbox Junior amp*** .)




    Steve A.

    *** ZT Lunchbox Junior is 6.5" x 7.75" x 4.4" and weighs 5 pounds...



    http://www.ztamplifiers.com/lunchbox-junior-amp.html

    https://www.premierguitar.com/articl...ior_Amp_Review

    The Premier Guitar article mentions its tube-like solid state tone but doesn't mention that it is digital with analog input and output stages. In response to a post he made on the Gretsch forum I met with the designer Ken Kantor in 2009 and requested a custom ROM chip with more bass for my Lunchbox 2 (the stock ROM chip at that time cut the bass and boosted the mids to increase the wattage and SPL levels, great for distorted leads but terrible for a solid clean sound.) He ended up using that custom chip in later batches of the LB2, including the ones he made for Wilco. He also disconnected the clipping diodes added to his original design because beta testers wanted more distortion when they cranked up the gain. (I prefer setting my amps to a nice clean sound and using pedals for grit.)

    I was really impressed by Ken's approach to digital programming. Rather than trying to model dozens of amps and effects like all of the other companies he was looking for the tones of what I call "a really nice guitar amp, not necessarily tube but very rewarding — and fun! — to play." His R&D facility in Berkeley had a collection of really nice vintage amps which he used for A/B-ing his various designs.


    screenshot_2017-02-17-01-35-22_20170217020118050.jpg screenshot_2017-02-17-11-28-22.jpg
    Last edited by Steve A.; 02-18-2017 at 01:18 AM.
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