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 Post subject: Never a dull moment
 Post Posted: Thu Sep 20, 2018 3:00 am 
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After Rob and I left the ER on that fateful, wee early morning in April, Rob began spending practically every waking moment researching information pertaining to my “diagnosis”. As tests were being administered and results were being reviewed nothing made sense to him. Hours, days, weeks were spent studying the situation until finally all of his questions were answered with a single phone call from someone who understood the importance of accuracy and could also see that something was not right.

After the euphoria of that phone call wore off the reality of what we learned triggered a surprising and unwanted emotional reaction. If Rob had not been persistent in getting a second opinion from an oncologist who specializes in cancer research, I would have continued on a predetermined path my local oncologist had put me on, I would have continued chemo that was doing more harm than good and eventually, as was stated by that oncologist, given a last resort type of chemotherapy that most likely would have killed me...for nothing. We went from tears of joy to omg...OMG...they poisoned you for nothing! $&@?!$@&? &$?!@& !!!!

And it didn’t stop there. The realization that this type of cancer could very well be misdiagnosed in other people was mind blowing. Is it because it’s *that* difficult to detect? Or are our medical professionals just that lazy and assume it can only be the one easy thing to look for and not bother to test for something else? Or is it because our hospitals are all about the “bottom line”?...money?! We’ll never know how many others might have also been misdiagnosed but I’m telling you right now, I shudder at the thought. And if I didn’t have Rob to enable me with the opportunity to see this particular doctor to give me a second opinion...

We were lucky. Lucky to have been given a second chance. And with that second chance in hand, we weren’t going to allow the doctors who did the damage to continue any more treatments of any kind. I’m now under the care of an extremely knowledgeable team of doctors who actually want to cure people.

With this new diagnosis, we were informed that there is a known treatment that, just last year!, was approved in the US but has been used overseas for years. It consists of a single monthly injection in the backside. I also get blood drawn periodically for a myriad of tests.

Over the course of the last three months of treatments, I’ve discovered that the injection generally has no side effects. But as it often goes with needles they can leave a sore knot. The first injection left the worst knot but so far, the other two have been okay. I’m not experiencing any other obvious side effects either and hopefully that will stay the course. This was course of action definitely beats the previous treatment’s side effects.

After a few months of treatments I get a CT scan to evaluate the status of the tumors.

A few weeks ago, I had my first CT scan evaluation. We were excited to hear that there are no new tumors, no existing tumors show signs of growth, and some of the tumors show signs of shrinkage. Which means the tumors are responding to the treatments. Hopefully, they will continue on this trend. If, however, the tumors do a 180, there is a second treatment option that I’m a candidate for. But I’m hoping I can continue with this one.

And just in case all this cancer business isn’t enough for you...

Rob and I needed new glasses. We finally managed to schedule an appointment to get our eyes examined and we both needed to order new glasses. When the glasses arrived the following week, Rob’s glasses were perfect. Naturally, I had a problem with mine. I could not see out of the right lens. They told me to come back later that day and the optometrist would check my glasses for me. When I went back he checked my eyes, checked my new glasses and said he couldn’t find anything wrong with my eyes or the glasses and sent me home. He said to contact him the following Wednesday (this was Friday). I’m like, how am I supposed to do anything when it looks like I’m seeing through someone else’s glasses? So, being the pushover I am, I agreed. I figured he’s thinking I need an “adjustment period” to get used to the new Rx. Ok. I’ll try. Nope. I cannot see out of those glasses. It’s not even remotely clear.

So Rob and I went back to the optometrist on Wednesday and we basically said, fix this problem now or give us the Rx for the glasses and we’ll get this taken care of somewhere else.

Naturally the office was crazy busy with customers but they squeezed me in to see one of the optometrists. This guy started from scratch and gave me another full examination, dilation and all. He came to the conclusion that my vision couldn’t be corrected in my right eye because I have macular degeneration...in both eyes. He referred me to one of their ophthalmologists and we had to make several phone calls to get me squeezed in on Friday.

So Friday morning Rob drove me across town to the ophthalmologist. They were crazy busy there, too. My appointment was for 10:45am but I don’t think we were called until like an hour and a half later. But it was worth the wait. This ophthalmologist was wonderful. Despite how busy they were she didn’t act rushed and took her time explaining everything she was doing. She came to the conclusion that I do indeed have dry macular degeneration. She wants me to do bimonthly self testing with the Amsler Grid. If the grid starts to become wavy that’s an indication that I’ve gone from dry to wet macular degeneration. There’s no treatment for the dry type but they can do something to save the vision if it is the wet type.

She also concluded that I am in the very early stages and that it was not the cause of my not being able to see as she was able to get me to see 20/20 when she tested my eyes. I have severe astigmatism (since forever) and she said the optometrist can correct my vision by adjusting the refraction in both eyes.

So we went back to the optometrist, told him what the ophthalmologist said, he tweaked my Rx and now I’m waiting for the newer new glasses. I’m really hoping they get it right this time. I’ve been using my old glasses. They actually work better than the “new” ones did.

It seems likely that unless there’s a major setback with my treatments or if there’s something really exciting to report, I’ll just update with with the results of the CT scans. Those will occur every 3-4 months.

Thank you for all of the love, support, and encouragement you’ve given me along the way. Although I’m no longer under the immediate threat of the Reaper, it’s still a very strange trip to be on. I’m just glad I’m still here, I can still see, and I can keep boring you with this ongoing saga. I wonder if I should turn this journal into a comic. :lol: jk

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     Post subject: Re: Never a dull moment
     Post Posted: Thu Sep 20, 2018 7:52 am 
    This user is a Tool! IRC Quote of the Moment Here for the 10th Anniversary Has collected at least one unit Erfworld Bicycle® Playing Cards supporter Mined 4 Erf Won Mine4erf for the Gobwins Won Mine4erf for the Marbits Was an active Tool on Free Cards Day Clubs Suit Pip For when you need it most Diamonds Suit Pip Shiny Red Star Hearts Suit Pip
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    Linda Balder wrote:
    I’m just glad I’m still here, I can still see, and I can keep boring you with this ongoing saga.


    This saga is anything but boring. My feelings range from happy about the fact that you seem to be feeling better and the treatment seems to work to infuriating about the amount of incompetence you and Rob had to deal with. Also, thumbs up for trying to make sure that other people do not have to deal with that incompetence in the future.

    Edit because of given occasion:
    Remember to buy and take your supplements. ;)

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     Post subject: Re: Never a dull moment
     Post Posted: Thu Sep 20, 2018 4:12 pm 
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    I dunno about the Macular Degeneration diagnosis, but the 'scrip not working sounds like pure and total BS, with him trying to blow smoke up your arse trying to not have to fix the problem. Happens when they get busy sometimes. Hopefully the new prescription will work better. And, like the doc said, MC early stages aren't responsible for prescription not working in the first place.

    We're all still here for you. If'n it ain't one damn thing, it's another. But hey, focusing on the eye thing sounds like it's a way to not focus so much on the other looming issue.

    Uhh... I'd also kind of ask your other set of doctors if eyesight stuff is a possible reaction to the new chemo you are on, because it might be one of those 'no, really, stupidly rare chance, like one in a million, so we aren't required to mention it, but welcome to the Side Effect Lotto where you happened to Match Six' things.

    I'm virtually certain it's just laziness on the part of the dude doing your prescription the first time, but you can never be too careful.

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     Post subject: Re: Never a dull moment
     Post Posted: Fri Sep 21, 2018 3:57 pm 
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    I'm relieved to hear the good news despite the challenges!

    As I've also had severe astigmatism since forever, I thought it might be worth mentioning that in the last few years they've developed relatively affordable contact lenses that can compensate for severe astigmatism. I tried out Biofinity XR Toric contacts and they converted me from prescription glasses, but results may vary. I required the extended range (XR) version to match my particular case, which made the price a bit less reasonable for a trial test, but I felt I should point out the possibility on the off chance you didn't know.

    May minor frustrations be all you have to deal with!

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     Post subject: Re: Never a dull moment
     Post Posted: Fri Sep 21, 2018 6:15 pm 
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    Thank you for the update! I have never been in a position like yours, and don't want to claim I understand, but I hope you know I and others appreciate the information, if only because we wish you the best and have that irritating curiosity and desire to 'know' things n order to feel like we're hoping 'correctly'...I know, sounds dumb, but it's how I work, at least, and I think others too.

    I hope things improve for you in the near future, I hope the glasses get your sight right-on and things work well, I hope your eyes hold up well, your tumors shrink, you FEEL better...all of that.

    Thanks for the update and know that we (the community, though I admit I'm really just saying 'I' in this case definitively) wish you well, appreciate your time, are on your side, and understand if you choose not to write!

    Thanks and be well! Lots of good vibes coming from my direction, for both you and Rob!

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     Post subject: Re: Never a dull moment
     Post Posted: Mon Sep 24, 2018 10:06 am 
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    Linda,

    When you’d like some nice Rhymemancy for your journeys, may I suggest Truckin’ by the Grateful Dead. I think that it suits the oddities of your recent journey.

    Be well.

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     Post subject: Re: Never a dull moment
     Post Posted: Wed Sep 26, 2018 6:26 am 
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    Linda, I wish I could tell you that your experiences were rare, but in my experience, when it comes to rare conditions, your experiences are common. I don't think it is about money as such, because the same pattern can be seen in single-payer systems were the government (or the government's insurance company) is picking up the tab either way. And maltreatment not only bad for patients, it is also costly.

    What I think we're dealing with is a medical profession adapted for another age. Doctors are still expected to more or less be able to diagnose everything, or at least everything in their speciality. And that is rather impossible with the advances medicine has made. They are also in general encouraged to go for the more common diagnose when in doubt. You have probably heard the old "when you hear hoofbeats, think horses, not zebras". Which probably is statistically correct, but it also means the care is going to suck if you are a zebra.

    This model probably made sense when doctors were few and far between, medicine could not really treat much (and outside the toolkit, there was only doctor placebo) and communication with colleagues far away was slow and limited. We are not in that world anymore but the organisation of health care and the role of the doctor hasn't been updated.

    So, yes, you are probably quite correct that people will die due to maltreatment for this rare cancer. And it's so not ok.

    Ok, this wasn't the confirmation pep talk I intended it to be. Sorry about that. I work with patient organisations (not cancer, generally) and it's frustrating to see it confirmed time and again that people get the wrong diagnoses and treatment because the system is bad at steering patients to the right care. Hope confirmation that you are not alone can be a bit of confirmation at least.

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     Post subject: Re: Never a dull moment
     Post Posted: Sat Sep 29, 2018 11:47 pm 
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    All in all, I'd say pretty good news, though the macular degeneration diagnosis is a bummer. I'm so glad it's in the very early stages.

    I'm sorry to be so late commenting, but I've been out more than in lately. You know... stuff.

    Take care of yourself and keep us updated with anything you'd like to talk about. You're not restricted to just the "Big C," you know. ;)

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     Post subject: Re: Never a dull moment
     Post Posted: Wed Oct 10, 2018 8:26 am 
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    Just a +1 to "the eyes could be a result of your other treatments". I don't know what they all entailed, but I had a concussion that made my vision was blurry until my brain healed. Apparently, concussions (at least of the kind I had) are not structural but change the balance of chemicals in your brain, so it stands to reason that other random stuff could do that, too.

    (Estrogen and melatonin also affect your brain's resilience, while we're on the topic - I reckon if those things could then harsher things should. I learned I was almost on the exact worst day of my menstrual cycle to get a concussion when I got it. I mean, full caveats that this might not be your issue, but just saying, weird side effects happen.)

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     Post subject: Re: Never a dull moment
     Post Posted: Wed Oct 17, 2018 6:33 pm 
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    Stack me in with the "Woah I'm late commenting on this!" pile. I'm thrilled for you, I'm so happy that your diagnosis went from "start shopping for a coffin" to "Well now I have to worry about getting the correct glasses, because I'm going to be around a long time to use them!"

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     Post subject: Re: Never a dull moment
     Post Posted: Thu Nov 08, 2018 3:29 pm 
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    You know, it probably would be a good idea to transform The Saga Of Your Medical Stuff into a comic. Or at least a text-only story. You've already seen how many people are rooting for you here; it seems likely that the level of interest would be decently high.

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