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 Post subject: Getting back on track
 Post Posted: Thu Aug 30, 2018 10:19 pm 
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QUICK NOTE OF THANKS: I’d like to thank those who were able to celebrate our 1st wedding anniversary with us in Columbus, OH on such short notice! I know there were many who wanted to be there but...logistics. Totally understandable. Thank you for being there with us in spirit. Maybe we will get to see you for our 2nd wedding anniversary in Dublin 2019 when we go to WorldCon 77. This time we’re planning to do it right! I was joking with Rob the other night and pointed out that we didn’t even dance at our wedding in Finland. He said, ok then, we’ll have a Dublin’ Dance Party, as he started to jump aimlessly as if dancing an Irish jig. XD

- - -

Much has happened since my last post, but at the risk of repeating myself to those who already know, I’m going to completely reiterate but summarize it here for those who haven’t heard yet. And it will help me to get back on track as we continue this journey.

- - -

On April 2nd, I was diagnosed with adenocarcinoma of the liver with unknown primary origin which means, I have stage IV cancer in my liver but it didn’t start in the liver and they don’t know where the cancer came from.

In a nutshell, my local oncologist said there wasn’t much that could be done for me. Your days are numbered.

We decided to seek a second opinion from a specialist in a hospital that specializes in cancer research.

But in order to get that second opinion we needed our local hospital to ship my slides and biopsy material to them so their pathologists could conduct their own tests.

While we patiently waited for that to happen, it was recommended that I start chemotherapy treatments of FOLFOX to “buy me some time”.

FOLFOX is administered in two phases. The first phase is a two hour infusion that takes place at the cancer clinic. For the second phase, they hook me up to a softball sized pump that is connected to a port-a-cath that’s implanted in my chest. This infusion takes 48 hrs so I get to go home with it. When it’s finished, I go back to the clinic to have the pump disconnected from my port. I have a ten day “resting” period then we do it all over again.

Between my first and second treatments a series of unfortunate events took place which led to an extremely long delay of my biopsy slides and material being delivered to the specialist we wanted the second opinion from. But eventually that important information made it to its destination.

I was in the middle of my third round of chemotherapy when I got a phone call from the second oncologist. After weeks of handwringing torture waiting to get that second opinion this oncologist gave us some jaw dropping news. I had been misdiagnosed.

I do not have adenocarcinoma. I have a rare form of cancer called neuroendocrine carcinoid tumors (NET). The oncologist stated that there are treatments available for NETs with a high success rate. The possibility exists that I could be cured of this type of cancer. If not cured, the cancer could be neutralized.

I did not need chemotherapy. The chemo that I had would not help this particular type of cancer but it wouldn’t make it worse either. The misfortune of having been on the chemo is the harmful cumulative side effects. Some of which I’m still experiencing but hopefully will eventually go away, forever.

After that phone call, there was much crying and rejoicing. The following day we went to the clinic to have the pump disconnected. We walked out the door and never looked back...

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     Post Posted: Thu Aug 30, 2018 10:52 pm 
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    Print Book 2 & Draw Book 3 Supporter This user was a Tool before it was cool Pin-up Calendar and New Art Team Supporter Here for the 10th Anniversary Has collected at least one unit This user is a Tool! Erfworld Bicycle® Playing Cards supporter Mined 4 Erf Won Mine4erf for the Marbits Was an active Tool on Free Cards Day Won Mine4erf for the Gobwins For when you need it most Diamonds Suit Pip Hearts Suit Pip Clubs Suit Pip
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    "You didn't actually need to pump your body full of poison because your cancer is actually something with a much better prognosis and treatment plan" has to be some of the best bad news I can imagine receiving.

    That said, it really sucks that you're still having unpleasant side effects from the chemo; I hope you're right and it goes away soon, and for good.

    We're all pulling for you, because you're awesome (and because fuck cancer).

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     Post Posted: Fri Aug 31, 2018 3:05 pm 
    Here for the 10th Anniversary Has collected at least one unit This user is a Tool! Won Mine4erf for the Marbits Spades Suit Pip
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    THIS IS WONDERFUL! I am so glad you got that 2nd opinion. I have watched my wife over the years deal with doctors who think they are right and they overlook what she is telling them or ignore symptoms right in front of them.

    I am so excited for you! Keep up the fight!

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     Post Posted: Fri Aug 31, 2018 3:07 pm 
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    Print Book 2 & Draw Book 3 Supporter Pin-up Calendar and New Art Team Supporter Here for the 10th Anniversary Has collected at least one unit Erfworld Bicycle® Playing Cards supporter This user is a Tool! Mined 4 Erf Won Mine4erf for the Gobwins Was an active Tool on Free Cards Day For when you need it most Clubs Suit Pip Won Mine4erf for the Marbits Diamonds Suit Pip Hearts Suit Pip Spades Suit Pip Erfmover Supporter Arkenhammer Supporter Royal Scepter Supporter
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    I am so releaved to here this. Hang in there!

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     Post Posted: Fri Aug 31, 2018 4:15 pm 
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    While I was tempted to just write "WOOOOOOO" until the 'O' key broke on my keyboard, despite the hurdles, I'll settle instead for repeating what's been said above: That's not the BEST news ever (which of course would be 'everyone's cancer everywhere is cured, and instead of chemo, you get cotton candy and a puppy') it's great to hear that your situation is better than originally believed!

    We're all here, we're all rooting for you, you're wonderful, you're brave, you're strong, and that's true even when you don't really feel it or believe it.

    Wishing you lots of good fortune and positive vibes!

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     Post Posted: Sat Sep 01, 2018 4:49 am 
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    Drache Graethe wrote:
    While I was tempted to just write "WOOOOOOO" until the 'O' key broke on my keyboard, despite the hurdles, I'll settle instead for repeating what's been said above: That's not the BEST news ever (which of course would be 'everyone's cancer everywhere is cured, and instead of chemo, you get cotton candy and a puppy') it's great to hear that your situation is better than originally believed!

    We're all here, we're all rooting for you, you're wonderful, you're brave, you're strong, and that's true even when you don't really feel it or believe it.

    Wishing you lots of good fortune and positive vibes!

    Personally, I'm not a dog person, so suddenly being responsible for a tiny ball of fluff and energy wouldn't be the best thing, but it would still beat the hell out of cancer.

    Anyway, this is still fantastic news!

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    I'm writing a sequel! It's called Finding Sanctuary. Please do give it a look. Last updated December 1st, 2016.

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     Post Posted: Sat Sep 01, 2018 10:10 am 
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    This is fantastic. I'm so impressed with your (both of you) determination in getting that second opinion. It can be so hard to second guess a doctor and harder to hope. Well done.
    Folfox symptoms can take a while to clear, a long while. Do not neglect your multivitamin. It's hard to tell what they're doing when you're well but seeing them actually help with chemo symptoms made me a believer. If you have tingling in your feet, thick, soft socks can help as can pillows under the covers to keep the blankets from pressing down at night.
    Do keep us informed.
    And if you haven't been to the Walter's Art Museum yet, go. They've kept their older collections upstairs in what is basically a gallery-sized, Victorian, cabinet of curiousities. Love!

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     Post Posted: Mon Sep 03, 2018 7:00 pm 
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    I'm still very happy about this, hasn't worn off. : )

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     Post Posted: Tue Sep 04, 2018 7:14 pm 
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    That's about as close to a Master Luckamancy spell as we're ever going to experience in stupid world. Maybe you should buy a lotto ticket while your luck is hot :)

    Having lost 2 grandparents to cancer (throat for my grandpa and something endocrine related for my grandma) and with a wife who has a mom and uncle who have survived kidney cancer, and an aunt and grandmother who survived breast cancer, cancer in general scares the crap out of me (a close second only to mental disorders). I'm glad you are on a path to be effectively cancer free.

    If you're looking for third anniversary sites, I highly recommend Prague as a vacation destination. It's pretty cheap to stay. Reykjavik is nice too.

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     Post Posted: Tue Sep 04, 2018 10:38 pm 
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    Wonderful news and certainly worth moving for. <3

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     Post Posted: Thu Sep 06, 2018 1:49 pm 
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    E is for Erfworld Supporter Battle Crest Pins Supporter Print Book 2 & Draw Book 3 Supporter This user is a Tool! Year of the Dwagon Supporter This user was a Tool before it was cool Pin-up Calendar and New Art Team Supporter Here for the 10th Anniversary Has collected at least one unit This user has been published! Erfworld Bicycle® Playing Cards supporter Mined 4 Erf Won Mine4erf for the Gobwins Won Mine4erf for the Marbits For when you need it most Was an active Tool on Free Cards Day Clubs Suit Pip Ruler of Erfworld Spades Suit Pip Diamonds Suit Pip Erfmover Supporter Arkenhammer Supporter Royal Scepter Supporter Sometimes They Even Fail
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    I wanted to chime in with my feelings of joy. I am so very glad that this all may well work out. Thank you for continuing to share.

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     Post Posted: Wed Sep 19, 2018 9:40 am 
    Pin-up Calendar and New Art Team Supporter Here for the 10th Anniversary Has collected at least one unit Mined 4 Erf Won Mine4erf for the Gobwins This user got funny with a rodent Was an active Tool on Free Cards Day Clubs Suit Pip Hearts Suit Pip
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    Very late to spotting this, got to only refreshing occasionally on this sub forum, but like everyone else said. Amazing news. Honestly been a little worried how you where doing with no update for a bit, but i figured you where probably just really rough with the treatment and stuff. Just couldn't help worrying, but then i'm a born worrier about everything.

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     Post Posted: Thu Sep 20, 2018 2:24 am 
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    This user was a Tool before it was cool This user is a member of Team Erfworld This user is a Tool! Has collected at least one unit Here for the 10th Anniversary Mined 4 Erf Celebrated Rob and Linda's 1st For when you need it most Clubs Suit Pip Erfmover Supporter Arkenhammer Supporter Year of the Dwagon Supporter
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    Carl wrote:
    ... Just couldn't help worrying, but then i'm a born worrier about everything.


    Hello kindred spirit! Worrywart is my middle name. ;)

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     Post Posted: Sun Sep 23, 2018 12:48 am 
    Pin-up Calendar and New Art Team Supporter Here for the 10th Anniversary Has collected at least one unit Mined 4 Erf Won Mine4erf for the Gobwins This user got funny with a rodent Was an active Tool on Free Cards Day Clubs Suit Pip Hearts Suit Pip
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    Linda Balder wrote:
    Carl wrote:
    ... Just couldn't help worrying, but then i'm a born worrier about everything.


    Hello kindred spirit! Worrywart is my middle name. ;)


    :lol:

    I really hope everything works out for you with this. I lost my grandmother on my dads side to cancer a few years back, and visiting her on that last night is still one of my worst ever memories. I'm glad i did it but i hate the thought of anyone like that. It gives every cancer story more of a personal edge than it really should, and it makes any success put a small smile on my face.

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