The Glade 4.0

This month
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Author:  TheRiov [ Fri Sep 29, 2017 6:25 pm ]
Post subject:  This month

This month has been a pretty shitty one. In fact i pretty well had the worst week of my life and I’m still reeling from blows. Tried to avoid ranting but what the ****.

September started with my daughter complaining about trouble swallowing/breathing and a lump on her throat. She ended up at the doctor and they did a CT scan which showed she had a large mass in her throat/chest which the doctor suspected was cancer.

About that time I came down with shingles which took me out of commission for a couple of weeks. That Friday the doctors came back with a preliminary diagnosis of thymic carcinoma.
Monday my employer laid my entire team off.

The last two weeks I’m scrambling to find a job while managing my rising panic about my daughters diagnosis. We had a surgical consult on last Friday and were told we really have no options but surgery . The tumor was pressing against the aorta and her vena cava.

The good news was no detectable metastasis but none of the blood tests were consistent with lymphoma (a much more treatable form of cancer.)

Yesterday was another hard but good day. The surgery turned out 90% good news, 10% bad news. Dispite all prior evidence to the contrary, she does “just” have Hodgkin’s lymphoma. The surgery got almost all of the tumor but because lymphoma responds so well to chemo they did not risk damage to the heart/veins/arteries. My daughter probably won’t graduate (it’s her senior year) because she is facing 3-4 months of chemo.

But she survived the surgery. That’s the important first hurdle. Hodgkins has >80% cure rate. (That seems horribly low to a father, but it’s lightyears better than the carcinoma survival rates)

So now I just have to finish recovery from shingles before chemo knocks out her immune system and find a new job in a market where GE just flooded the market with Unemployed IT pros.

Author:  Müs [ Fri Sep 29, 2017 9:42 pm ]
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Ugh. That's a shitfest.

Heal well to you and your kiddo.

Author:  Screeling [ Sun Oct 01, 2017 7:16 pm ]
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Man, that's rough - sorry to hear that. But you're right: it's lucky she has Hodgkin as opposed to the non-Hodgkin variants. Much better prognosis with the vanilla. Did they say what subtype she has (nodular sclerosis/lymphocyte rich)? If you want any forms of reading on the diagnosis or chemo drugs, just let me know.

Shingles spreads by respiratory droplets, btw, so it might behoove you to wear a mask whenever you can.

Best of luck on both fronts. I hope both of you recover swiftly.

Author:  TheRiov [ Sun Oct 01, 2017 8:03 pm ]
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Nodular Sclerosing Hodgkins Lymphoma, stage 2a is the official diagnosis pending a bone marrow test tomorrow morning. They’ll upgrade to 2b if the marrow test is positive.

Because of the location of the tumor they had to crack her sturnum and treat this like open heart surgery (she had a thoracic surgeon and a cardiac surgeon doing the surgery)

The downside is that because chemo affects bone regrowth they don’t want to start chemo for a while. (4 weeks) on the other hand the oncologist wants no more than 2 weeks. The surgeon and the oncologist are hashing out the optimal timing.

Author:  Screeling [ Sun Oct 01, 2017 9:03 pm ]
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I see. That's the most common form of Hodgkin lymphoma, so at least there should be very few curveballs getting thrown at her doctors. I'm sure they will take excellent care of her, but if there's any information you need, let me know and I will get you whatever I can.

Author:  TheRiov [ Mon Oct 02, 2017 8:30 am ]
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I’m lucky enough to have a mother who’s an OB/GYN and a cancer survivor herself so she’s been a big help with research and asking questions we don’t know to ask.

We’re also a family that BEATS cancer. my father, mother, both my grandfathers have all had cancer ( several of those people have had multiple unrelated cancers) and are all still kicking it 15+ years later

Author:  Aethien [ Mon Oct 09, 2017 4:24 pm ]
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Wow, I'm late, but good luck, man. Sorry to hear about the crap, and I hope it gets better.

Author:  Arathain Kelvar [ Sun Oct 22, 2017 11:31 am ]
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Jesus, that's rough. Hopefully things improve dramatically.

Remember to take care of yourself in the process. Seen too many times cases where people neglect themselves. Can't help your daughter if you go down and out.

Author:  darksiege [ Mon Oct 23, 2017 11:54 am ]
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Just reading this for the first time: Sorry to hear about your troubles man. I hope all of your family is able to get through this shit-fest together and grow stronger from it.

Author:  TheRiov [ Sat Jan 06, 2018 12:44 am ]
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So a quick update. The last few months have been a total rollercoaster. Her chest incision did not heal well initially and got infected, which meant delaying chemotherapy. We also had some delays because my daughter decided to stop and try an 'experimental' (not exactly experimental; its been in use in some countries for about 10 years) fertility preservation option. (this particular chemo regimen has about a 50% chance of causing sterility)

After futzing around with a variety of delays she finally started chemotherapy 3.5 weeks later than initially intended (so 7.5 weeks after surgery) They had to stop and re-stage her cancer because of all the delays.

Then once she finally started chemo she ended up having a 1-in-a-thousand allergic reaction to Etoposide (one of the primary chemo drugs for this type cancer)
Mercifully there was an alternate formulation (Etoposide Phosphate) without the side effects (its not the drug itself, its the solution apparently that causes the allergic reaction.

So we proceeded with the alternate formula only to get 2 days into it and realize it, and the hospital (and all other hospitals in all of Louisville KY) ran out of the alt. Formulation.

So we delayed again while they got a new shipment in (hard, the stuff isnt that common and not produced like the 'normal' Etoposide is)

Then 2 days before she was supposed to start Round 2 Chemo (each round is 21 days, 3 days in the hospital, 4 days rest, 1 day in the clinic, 13 days rest, rinse and repeat x4) -- her wiped out immune system meant that she got an abcess in her gums meaning emergency dental surgery and another delay in chemo while that infection was taken care of. (you dont wipe out the immune system of someone who already has an infection. Its bad (tm))

All that was taken care of FINALLY and Round 2 went off okay after that.

This Wednesday she had a status-update PET scan, and we got the results today:

Totally clear.
They're talking about not even doing Round 4 chemo (we still have Round 3 starting Monday) and they've taken Radiation off the table. This is pretty much the best possible news we could get. So breathing a sigh of relief on that front.

I started a new job in November, on a contract basis and a couple of financial windfalls kept me well in the black... and two days ago, I got a job offer for literally 250% of what I was making before I was laid off, needless to say I jumped at it.
So things are STARTING to feel more normal around here (even better than normal in some ways. ) Still some hurdles to jump, but so far 2018 is a hell of an improvement on 2017.

Author:  Screeling [ Sat Jan 06, 2018 6:43 pm ]
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Sorry for jinxing you with saying "few curveballs," man, but great to hear things are turning out better. That is indeed good news.

Author:  Rynar [ Sun Jan 21, 2018 5:12 pm ]
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Will keep the prayers coming.

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