F*** You, Cancer! Catch all

So, dad update.

He is at home. No more catheter, and just waiting for the oncologist to order more scans and tests to see the state of his cancer. Full kidney functions, and he is feeling better day by day.

Walking further every day.

Great news mudbunny!

Well, my one year PSA test results came in.... Still undetectable! Treatment is working. Such a relief. Thanks everyone for your support this past year.

YES! Thank you for keeping us posted on your progress <3

Dad update, and I quote: "Still walkin, still pissin'"

No more walker, using two walking poles. Up to about 40 minutes a shot, a couple of times a day. The effort now is to get him to not push his body too hard and hurt himself.

mudbunny wrote:

Dad update, and I quote: "Still walkin, still pissin'"

I don't know your dad, but I like your dad - reminds me of my own. Glad to hear things are going ok.

Robear wrote:

Well, my one year PSA test results came in.... Still undetectable! Treatment is working. Such a relief. Thanks everyone for your support this past year.

This makes me very happy to hear!

And the one year bone scans look good! Treatments are working.

Woohoo!

One of my closest friends’ daughter was just diagnosed with medulloblastoma. She’s four f*cking years old. She had surgery to remove the tumor but it spread to her spine so it looks like she’ll need months of chemo and/or radiation.

I feel as though there’s nothing I can do or say to ease what they’re going through. Such a helpless feeling. I know they have a good family support system but it looks like they’re in for a long long battle.

If anyone has any advice or ideas on how to help them I’m open to them. I know they just set up a GoFundMe and are working out the details of where treatment will be, their work, etc.

Set up a meal plan - Cooked meals delivered to their door.

Mow the lawn, shovel the driveway, clean the house.

Make it so that it is easier for them to spend time with her.

^ This right here. And don't ask what you can do: make a very specific offer. "I'd like to drop off a lasagna on Friday, is that cool?" If they're dealing with the grief of realizing that this is what their life is going to be like for the foreseeable, trying to distinguish between which "let me know if there's anything I can do"s are serious offers and which are just being polite can be more emotional effort than they are capable of.

PaladinTom wrote:

One of my closest friends’ daughter was just diagnosed with medulloblastoma. She’s four f*cking years old. She had surgery to remove the tumor but it spread to her spine so it looks like she’ll need months of chemo and/or radiation.

I feel as though there’s nothing I can do or say to ease what they’re going through. Such a helpless feeling. I know they have a good family support system but it looks like they’re in for a long long battle.

If anyone has any advice or ideas on how to help them I’m open to them. I know they just set up a GoFundMe and are working out the details of where treatment will be, their work, etc.

I am so, so sorry to hear this. I was looking at pictures from my son's first year of diagnosis (June of 2016, also at 4 years old) just the other day, recalling how much of a rabbit hole we were falling down, that we're just now finding our painful bottom of. My wish is that their journey is met with success at each turn.

He was 5 years older when he made this, but Dev actually put together a video of his hospital tips if they're interested:

We made the hospital as much like home as we possibly could. HIS bedding, pillows, stuffed animals, games/books, etc. We decorated and celebrated for every holiday.

Keep a calendar/schedule, make sure life goes on as much as possible even if scary stuff needs to happen during the day...goals you want to accomplish each day, times to wake up/brush teeth/etc. morning and night. Consistent eating and bedtimes. Moving around as much as possible and taking every advantage to get the heck out of the room (hallway, play room, family room, whatever - don't let the walls close in)

Be careful about seeking perspective via other people's journeys on Facebook, Caringbridge, etc. to compare it to who their child is, what she has, and all that...EVERY KID IS DIFFERENT, EVERY KID'S CANCER IS DIFFERENT, THUS OUTCOMES ARE GOING TO BE INDIVIDUAL despite statistics about surviviorship...big data/bioengineering hasn't gotten medicine to where every TREATMENT is individually tailored - yet. This will be a very frustrating reality. We have a Caringbridge from all 6 years if/when they are ready. I'd advise against it until they have saddled up and veterans of the war a bit.

mudbunny wrote:

Set up a meal plan - Cooked meals delivered to their door.

Mow the lawn, shovel the driveway, clean the house.

Make it so that it is easier for them to spend time with her.

This right here is on the money. Assume they'll need to uproot their life to help her through this...do they have other kids or anyone else at home that have needs - transportation to/from school and other activities? Breakfast/lunch/dinner?

Any pets that need care, either at home or if they need to live elsewhere for a while?

What about yard service/stuff around the house than needs doing (my neighbors and father-in-law handled lawn, filters, changing batteries in detectors/bulbs, fixing leaky faucets, getting the trash out etc. All that little stuff that piles up)

If she is in pre-school, ask about being able to Facetime/Zoom in with the teacher and the class to break things up.

Don't neglect the parent (or both parents) at the hospital either. Getting a nice dinner delivered that isn't hospital fare - which can be done even if they aren't getting treated locally nowadays - and if they are local, making sure they have decent pillows and a foam bedroll for the crappy pull-out bench! I'm still working through muscle/nerve stuff from all the years sleeping on that thing.

Picking up their laundry, getting it done, and bringing it back!!

Tell them to write EVERYTHING down and review it. Attend every round outside in the hall, even if they're tired. They will play an instrumental role in how all this goes, and it will be tremendously scary at first, but they are arguably the most important members of the medical team that will treat their child, and the ONLY ones who can represent and advocate for their child's unique needs, personality, mental/emotional wellbeing in concert with the physical side of what she will endure. This is an angle hospitals just don't cover as well as they should, the parents are the way it happens.

If they have decent nurse navigators and social workers, tell them to become fast friends and lean towards being vulnerable and just saying yes to everything even if they don't think they need it. They and the organizations they partner with are there to enrich life as much as possible given the circumstance. Don't turn stuff down. Take the gas cards, the meal cards, the offers from organizations for things, events, trips, etc. Their own ability to plan for, pay for, and execute all this stuff is going to vanish, but it doesn't mean it can't be a part of life.

Gofundme is a great idea too, especially considering someone's work/income is going to be disrupted and the bills are going to be ASTRONOMICAL. Hopefully insurance is a part of the picture.

Ok I realize I'm rambling right now, I'm a mess as I type now, and I'm sorry. My wife and I could probably write a book on how to be the fiercest advocate during all this and lessons learned during our 6-year nightmare. They will be overwhelmed for some time, but if the parents ever want to chat please just message me and I'll call them or we can start swapping emails.

Thanks all for the incredible advice - especially WizardM0de!

The frustrating bit is that I’m not local so I can’t help out with any yard work, chores, etc. This is a college friend that I only get to see a few times a year. I’m told their freezer is packed with tons of food from local family and neighbors right now, so I sent a cash card for gas. I also bought them an iPad and extra long charging cable for the hospital. My wife and I are discussing how much money we might be able to send them to help out long term as well.

We’re doing a Zoom call with our small group of college friends later this week, so I’ll definitely bring up the great advice above.

Again, many thanks.

My dad's ACE enzyme numbers are way up. Over 200 (over 9000!! #BadJoke) according to the blood test he took a couple of weeks ago. His oncologist figures the cancer has metastasized in general full-body cancer.

Full body scan tomorrow, followed by another meeting with his oncologist on the 25th, where decisions about what treatments he will take* and the whole quantity vs quality decision.

*If it is even possible

I hope they can find some treatment that's not too dire. And that you and yours find some peace in the situation.

Robear wrote:

I hope they can find some treatment that's not too dire. And that you and yours find some peace in the situation.

After his last round of chemo/radiation, he was told there were no more treatments possible, only pain management.

We don't know yet where the cancer has spread to, so it is possible that it will be in a spot where treatment will be a realistic possibility, but I know my dad, and he will take a short life where he can live as opposed to a long life where he is bedridden or unable to do things because of the side effects of treatment.

I can see entirely where he is coming from. It actually helps me be calm in my mind about whatever comes, and I hope it does the same for your dad. I love knowing that there is an off-ramp that will keep my pain to a minimum, when the time comes. (I hope.) Probably he does too.

With luck, they could knock back a small spread with radiation and maybe some chemo. We can hope he gets more quality time!

Anytime you want to chat, I'm here (as are all of us who post here, I suspect). Just drop me a PM.

I'm sorry, I'm hopeful, and I wish him love and peace, are the only words I can find at the moment.

f*ck cancer, indeed. All the love to you, Mudbunny. <3

Just received news about my own dad that I'm still trying to process. It's all so hard and stupid and unfair.

It's another phase of life, that's all Amoebic. You'll work through your emotions and be able to support your day, and the learning from that experience will inform your own situation, whatever it turns out to be, down the line.

Mors venit ad omnes. Memento mori. This is something our culture lacks an understanding of, but it leads to a treasuring of every day we have together, not in sorrow, but in joy.

So, what with the meeting with my dad's oncologist on tuesday, and the very probably news the cancer has metastasized and is general, what questions should I be asking? Here are the ones I have so far:

- Is there any chemo/radiation treatment possible?
- If so, what are the side effects with a view towards quality of life vs quantity
- What is the life expectancy?
- What is the likely progression (if it can even be predicted)?
- What signs should we be on the lookout for as an indication that it is time to go to the hospital/hospice?

Chemo/radiation/immunological/clinical trials? If chemo, can a PICC or midline catheter be used (to spare all the painful sticks and irritation at the injection site)?

Don't bother with the life expectancy stuff. It will not be accurate. You could ask "How will we know when it's time to consider hospice instead?" Too many patients take the "book" life expectancy answers to heart and die right on schedule, is what I hear.

...and I see you have my question above already.

And one for you - does your dad have an Advance Directive/Living Will/Power of Attorney in place to specify his wishes in case of a sudden medical crisis? Have you gathered the necessary info on accounts, bills, debts, etc?

Quarterly PSA is still hanging out at <0.1ng/dl! Result! I'm still on the happy train!

Great news, we love the happy train!

To pile on the happy(ish)-train, news from my dad. Spoilered, because of medical information that some people might not want to see.

Spoiler:

They’re pretty sure his cancer has generalized, but the radiologist who did the first scan couldn’t rule out some other inflammation, or something like that. The oncologist on the other hand is almost 100% certain that the cancer has generalized into his lungs, and has put him in the terminal stage of cancer. They’re going to do a PET scan to make sure. At the same time they’re going to start chemotherapy.

This chemotherapy isn’t to kill the cancer, but to slow down the cancer.

Radiation therapy is not possible because the radiation therapy he did previously maxed out the amount of radiation that he’s allowed to get.

With the current plan of treatment that he will have, the estimate it’s about a two-year average life span. It is far too early to think about hospice care. The chemotherapy he will be doing will be every two weeks.

When the oncologist asked him if he wanted to do the chemotherapy, it was in instantaneous yes.

Once they start the chemo, he’ll be getting PET scans every three months to track the progress. At some point in time the chemotherapy will no longer be effective against the cancer, and they’ll have to look at other options when it comes to that time.

tl;dr - For sh*tty news, it is the best sh*tty news one could get

Two years! Nice. Time to enjoy life some more.

Yep. The big question will be how his body handles the chemotherapy the last round. He handled it pretty good. No nausea just some general weakness. But some of the chemicals he’s taking this round are going to be very different, and there’s no way to reliably predict how any individual person will react to the combination.

I hope it goes easily.

Seriously. You guys are troopers. I am at a lost for words this morning but I planned to say something more heartfelt than "hang in there". But that is the only thing I seem capable of typing

Thanks Fang! Support from friends and the community is very important.