Fuck Cancer

[buttahflake]

I just checked the results, it’s hyperplastic.

[Dantheman]

Just found out AC's aunt has Stage 4 bone cancer. Terminal, 2-5 years tops

[old goat]

I just checked the results, it’s hyperplastic.

Those aren't the kind that become cancer. But still check with your doc.

[buttahflake]

Thanks, will do.

[I've seen black diamonds!]

Got a CT scan yesterday afternoon. Doctor called immediately after I got home and said I have significant colon cancer that has spread to my liver. Also said I have a couple spots on my lungs.

Likely the cause of the back pain I’ve been experiencing.

I’m not really ok right now. I just hope it’s treatable.

Prepare for the worse and hope for the best.

So sorry to read this.

6 years ago my step dad got a similar call. Doc thought he had a year or so left of low quality living. He has skied hundreds of days since. Just bought a new pair of boots at age 74 because he wore the old pair out.

One of his best friends has had been living with incurable lung cancer for 11 years. He's a sculptor. 79 years old. Still carving naked ladies out of big old hunks of marble. Those stone titties never sag but he keeps carving new ones anyway, because that's his thing.

Keep fighting, mag.

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[Beaver]

Mother in law was feeling really shitty, went to the hospital last week. Had almost no liver function. Liver is solid cancer, kidneys full of cancer. The doctors gave her 3 weeks. Wife saw her a month ago and she seemed normal if just a bit tired. Wife is visiting her now, says it is like someone turned her off.

[ötzi]

Jesus that's rough. Also for your poor wife. Sorry.

Maybe I've just become more sensitized to it but this shit seems to be everywhere. My BIL is going through the wringer with lymphoma, he went through chemo and all was good. Seems fine, he was out playing tennis three weeks ago. Now they think he has lymphoma on the brain, brain biopsy today, wtf.

[Game Over]

Heavy thread. Always avoided it. So many highs and lows from the victories and losses. I really don’t have much but to say I appreciate you guys. And I’m so sorry for all the loss pain suffering and heartbreak.

I’m moving along. So many appointments since last Monday. Surgeon, oncologist, colonoscopy/biopsy, blood work, another scan… Got my port today.

It’s in my blood but a biopsy of my colon didn’t yield any cancer cells so FWIG I don’t have a actual diagnosis yet. But we are still moving forward with chemo starting next week.

Been journaling. Something happened today that I’d like to share and maybe get perspective on.

I’m feeling uneasy and borderline awful. The chemo consultation nurse called and asked if it was ok to reschedule my consult from Monday to Wednesday because another patient was urgent.

She had thought we talked just yesterday (we had not- the appointment was made earlier in the week on Monday) so I replied to her are you sure it’s not me who is urgent—> I am supposed to start treatment next week and my Dr. had put a rush on everything we’ve done up to this point and that I had already been called earlier in the day to schedule even though i was already scheduled.

She went on to say everyone is urgent, that I wasn’t yet approved for treatment and that she’d call back.

When she called back she said that I had been approved but that I would not be able to get in for treatment until Wednesday because Monday was full and Tuesday was out because of the holiday.

I was relieved to have been approved and she asked if I could switch to Tuesday. I was fine with that and told her that I had assumed after we talked that it was a mixup and I was the rush patient she was referring to (again due to everything up to this point being extremely rushed) I told her that it’s been nuts-> a whirlwind of appointments.

She then randomly mentioned “how my life will never be the same and that it is forever changed, it really is” in a very solemn borderline condescending tone. It was honestly depressing.

Then she started looking thru the schedule for times and I started thinking of how we are going to have to rearrange things for Tuesday.

I then asked couldn’t this guy just take a Tuesday spot with no harm since Monday’s chemo appointments are full and Tuesday is closed? Wednesday is the earliest possible treatment day, correct? We would both make that date regardless of who is consulted on Tuesday. Or is there maybe anyone else that could possibly be by bumped to Tuesday instead of me?

She was pretty adamant that the only way was for my appointment to be moved. That there are 13 doctors here. everyone is urgent and that she was told to bump me. I asked-> my Dr. told you to bump me? She said her supervisor did. It was then that she realized Tuesday was full and said “let’s just leave it.” In a devastated like tone that I assumed implied that it’s my fault the patient was not going to get the urgent care he needs.

I thanked her and she hung up without a word.

This conversation was the polar opposite of every interaction I’ve had since my cancer ordeal started 12 days ago. Everyone has been so wonderful, positive and uplifting. It was a major bummer going into the weekend.

And now I’m feeling heavy guilt/worry, What if this guy doesn’t get the treatment he needs because of me? What if this lady holds a grudge and my treatment is sub-par because of it?

The last phone call was at 3:44. I’ve wasted almost 3 hours since worried about this crap. Lame….
.

Re reading this made me think—> had she said “we have to bump you” Id have been totally fine with it (although disappointed my treatment was pushed back).

But she asked if it was ok and I was honest and straight forward. But I still feel guilt like I did something wrong.

[easyrdr]

You did nothing wrong. Keep doing what you're doing. Sending positive vibes.

[billyk]

G.O., at this point you have every right to stick up for yourself.

Your experience reminded me of when I went in for my first colonoscopy. At the end, when I was in the recovery room, I overheard a doctor taking to another patient and told her she had advanced cancer in a very matter of fact manner, like it was a bunion or something. Seemed pretty cold to me at the time, but I guess these doctors see it all the time, and it becomes routine.

Edit: Oh, and good news about the negative biopsy! Although, I guess they now have to figure out what is actually going on.

[John_B]

Keep us posted GO. A friend is 10 months into remission from stage 4 lymphoma with it in her back, blood and a few lung spots. The treatments are incredible these days even if I don't understand them.

It's for sure not a certain game over but like your doc said it's going to be a helluva event for a while

[happytimefunbox]

DTM Beav millsie I’m feeling for you guys…..

Game Over…. put your head down and move forward (thanks iceman). Don’t feel guilt for some else’s situation YOU are the most important patient. I am sending you every positive vibe I can muster buddy!



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[jono]

Steep, you're gonna have more schedule snafus. Keep journaling and being your own advocate (you'll probably learn how much your insurance company cares about you soon, too).

Be firm but take it in stride. Some of the insurmountable problems will work out better than you expect and being calm can be super helpful: I got to witness my liver biopsy because my HR was too low to drug me any more. Turned out to be a very useful memory. Don't get frustrated, you've got important stuff to do. (It took me about two days to finish watching this movie Surviving Terminal Cancer--ya get busy.)



Oh, cancer loves sugar. Just fucking Loves it. Good luck. Kill that shit.

[berko]

This is long. Sorry.

As a physician who has helped treat cancer, performed biopsies, and placed ports on a lot of patients, as well as being diagnosed with late stage colon cancer (3b) at 52, I feel like I have some perspective on the subject.

As a patient, the whole process can make you feel like youre getting swept down a river with a swift current. It’s imperative to find a team you believe in, because once you get going it comes thick and fast.

I did 8 rounds of folfox chemo plus radiation and then low anterior resection. From being dxd in oct ‘17, I was done with the whole thing in july of ‘18.

Chemo was not nearly as miserable as expected. My hair didnt even fall out. I basically felt moderately hung over for half a week after each bimonthly treatment. The only that really sucked was the drug oxaliplatin. It makes you feel like youre touching dry ice anytime you touch anything cold. This includes your throat, which completely fucked my plans to eat a shit ton of ice cream to make myself feel good during this whole thing.

From talking to other people, It felt like I got off a little better than most. Im not sure if it was because I kept as active as possible, going to the gym and getting a big walk in or even a run every day, or the copious amount of cannabis ingested. Both helped immensely.

Radiation was easy. It was more annoying than unpleasant. Hardest part of RTx (radiation therapy) was the fucking waiting room. It was good in that it kept me from feeling too sorry for myself but you see the same people day after day and its easy to tell who is winning and who is losing. Its brutal.

Surgery sucked. I actually had two. First one was to cut out the tumor and create a diverting iliostomy to allow the reconnected part of the colon heal. The second, 2 weeks later, to get rid of the ostomy. The physical pain wasnt too bad, but mentally and emotionally was pretty tough. Up unto this point, the whole thing still seemed a little abstract. I had never actually had any symptoms from my cancer, only from its treatment. I had never really felt that bad, so at times I would wonder if anything was really wrong with me. After looking down and seeing scars and drains and bags makes it really fucking real, really fucking quick.

All in all, not something Id want to repeat but not nearly as bad as I anticipated. Im not the same, and I never will be, but it beats the alternative.

Im sorry you have to go through this.

My take aways are:

1. Be comfortable with your plan of care. For me, I knew most of the providers already so I just asked other docs who’d they use or who they have used and were happy with and went with them and let them do their thing. For better or worse, I’m nowhere near a ‘control’ guy so I just did what they said. For a civilian, Id recommend asking around. Once you find a dr, ask a ton of questions.

People always say to make sure ‘you get all your questions answered’ before you proceed with a treatment plan, but the truth is you probably wont know the right questions to ask until its too late. Key questions are: Am i a typical patient for this type of cancer? Does the particulars of my case change the typical treatment plan? Are there any alternatives to x? What can i expect from x? What are the common responses to x and how will the plan change if they occur? Be specific and encourage them to be as specific as possible. Do your home work and if possible seek out people who are undergoing the same thing and ask them questions.


2. Have a good attitude. Im not talking about power of positive thinking, which is undoubtedly beneficial, but more about not being a dick to your providers. Its just not a smart move. It is understood that these people are paid to heal you, but it is unrealistic to expect anyone to care about your life as much as you do. Give them a break. These people are humans and they do a better job when they feel good about what they’re doing. In my case they were all surprisingly great. In return, I tried to be as pleasant as possible and would often bring donuts and lunch to the infusion nurses and RTx techs. They felt appreciated and made my interactions with them happy ones. Win win.


3. Profit from the experience. By definition, this is an existential crisis. Lean into all the thoughts and emotions and let them take you where they will. It will get dark and it will be scary. Seek therapy if you need. Now is not the time to shut yourself away. Talk to people. Tell the people you love that you love them. Get right with god or what ever life structure that suits you. Let people do things for you. Do things for other people. I certainly did not reach total enlightenment, but I did learn a lot and I feel like im a better doctor and person for the experience.



Well fuck, that kinda poured out. Started as a note for Steep. Ended up as therapy for me.

I hope this helps, and I wish you all the best.

Happy to talk about it more or listen.

Be well.

[jono]

Thanks for that. My experience was similar to many of the details on chemo and surgery (no rad) and it's good to be reminded about the upsides of that existential crisis. I may never be comfortable thinking it's over, but many days I'd do better to remember the whole thing instead of just the lasting minor irritations. Well said.

[Danno]

Wow, Berko, had no idea. Glad you made it to the other side!

[ötzi]

Thanks for sharing that Berko. My situation was parallel but a little opposite. Surgery sucked but wasn't that bad, I mean it sucked but it was a one day deal and I have a ton of experience having to rally from physical stuff and I'm okay with it as long as there's progress being made even if it's slow and not completely linear.

Radiation really sucked, it was 5 days a week for 6 weeks and it just kept getting worse every day. They burned the living fuck out of my neck, the pics I have are pretty gruesome. They warned me going in that it would get worse and worse because it's cumulative and that the worst week would be the week after treatment ended and man were they right, I was miserable. It hurt a ton. Really fucking hurt. But after that week it started getting better slowly. 6 months out my neck is still fucked up with lymphedema and fibrosis. I go to PT and massage therapy every week and it's slowly getting better.

But despite the fact that my neck is still pretty messed up I feel great. I'm still alive, and I'm in probably the best shape I've been in since maybe college? A long time anyways. I lost a fair amount of weight, I was at 212 when it all started and I'm at 185 right now and plan to keep it this way.

I'm not a God guy in the least but for lack of a better word I feel blessed. I got so fucking lucky. If I had ignored it I would be in a world of hurt by now and left to my own devices I probably would have ignored it for a long time but my dentist saved my ass. Might have saved my life.

It's been something to go through, and I'm still going through it in some ways, but it's all good. One thing that helped me was researching the hell out of things. Not so much the course of treatment (although I did get a second opinion from another hospital) as ancillary stuff outside of the hospital, like diet (for example as Jono said above, cancer loves sugar) and additional stuff that helped, like acupuncture, and other stuff that they just didn't mention.

It's like the Docs have blinders on, they're focused on what they're doing and they're good at it but they're not thinking about what happens outside the hospital walls and of course most of your time is outside the hospital. Probably the best example I have of that is Manuka honey. A very common side effect of neck and mouth radiation is mucositis, essentially sores that develop in your mouth and the lining of your throat from all the burning going on. It's important to control it because if it's bad enough you basically can't eat and a lot of people get put on feeding tubes because of it.

Well there's a study from NIH that shows an 80% reduction in mucositis with a course of Manuka honey (I'm now kind of an expert on Manuka honey btw, it has unique and potent antibacterial and antifungal properties, but much if not most of it is counterfeit), with a teaspoon of it immediately prior to radiation and another immediately afterwards and a third before bed. And it worked. No mucositis for me.

When I asked the radiation oncologist about it she kind of shrugged and said, yeah, some people say that helps. Well NIH isn't exactly just some random dude on the street, so wtf? I dunno, but I'm glad I found out about it. So be your own advocate when it comes to the treatment, but don't limit it to that. Let google be your ally. Don't start doing wack shit but if there's science out there you want to know about it. Good luck mang.

[::: :::]

Thx for posting your stories, all
Humbling stuff for those of us reading along — I’m headed for a first colonoscopy soon (as i hit 50 this yr)
Wishing you all the best in your continuing recoveries, whatever the stage

[old goat]

Heavy thread. Always avoided it. So many highs and lows from the victories and losses. I really don’t have much but to say I appreciate you guys. And I’m so sorry for all the loss pain suffering and heartbreak.

I’m moving along. So many appointments since last Monday. Surgeon, oncologist, colonoscopy/biopsy, blood work, another scan… Got my port today.

It’s in my blood but a biopsy of my colon didn’t yield any cancer cells so FWIG I don’t have a actual diagnosis yet. But we are still moving forward with chemo starting next week.

Been journaling. Something happened today that I’d like to share and maybe get perspective on.



Re reading this made me think—> had she said “we have to bump you” Id have been totally fine with it (although disappointed my treatment was pushed back).

But she asked if it was ok and I was honest and straight forward. But I still feel guilt like I did something wrong.

Nothing to feel guilty about. Two days later won't harm the other patient. Chemo doesn't work that fast. Trying to bump one chemo patient for another doesn't make a lot of sense. My guess is that the other patient wasn't medically more urgent than you but was making a lot of noise about wanting to get in sooner. Sounds like the nurse was getting it from all directions--the other patient, the supervisor, your justified resistance, which may explain why she was less empathetic than she should have been.
The holidays are stressful for doctors and medical office staffs trying to schedule stuff--appointments, operations. Cancer doesn't care if it's Xmas. (Most of us can handle the medical emergencies well; it's time pressure that makes us lose our cool.) That's an explanation, not an excuse.

[jono]

Ice, that point about weight is super powerful, I think. I'm 25-30 lbs down from before and I wouldn't have aimed for this, but I feel like it was a net positive, too. Feels younger--maybe about 3 pounds per year? Lost a little muscle (more fat) but the cardio held on.

Best advice I got on research was to stick to NIH, Pubmed, American Cancer Society. I wasn't perfectly strict about that, but pretty close. There's way more than enough peer-reviewed research out there to use up all your time. And a ton of the less known stuff has been published, which is really helpful when you want to discuss it with the docs.

The sheer volume is also one reason you can find things your docs haven't seen, particularly stuff that's applicable to your own cancer. (Not the whole problem, standard of care is definitely too influential in poor outcome scenarios, too.)

So many rabbit holes, so little time. It would really help if some of these things were better discussed with the doctors. Stuff like not fighting oxi chemo with antioxidants, avoiding grapefruit--a lot of that would be good to hear about in a more open discussion. I definitely didn't tell my docs about everything I found or did and I still wish I had. My main medonc just said "eat whatever you want" so I decided I wanted to eat cancer killers. May have helped the appetite.

Steep, I can't find the article that got me into this one originally (it was a human study on metastasis of GI cancers IMS) but dandelion (for example) is a deep vein (practice your skimming skills):

https://www.ncbi.nlm.nih.gov/pmc/art...__ffn_sectitle

[old goat]

I would add Wikipedia to the list of reliable sources.

[jono]

Yeah, good point. Not necessarily the same depth, but almost always more succinct.

[Game Over]

Fuck- thanks for the info on sugars.

My doc also said eat whatever you want, and my patient portal even has a piece on how sugar is not bad…. So I’ve been eating a ton of ice cream and one or two milkshakes a day trying to put on weight.

Gonna stop that right now.

Edit- holy shit double thanks for this dandelion study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5341965/#__ffn_sectitle

Edit 2 - any particular type of dandelion root extract I should look for over another? Thanks again- greatly appreciated

[ötzi]

Shit I just bought a couple bottles of the Nature's Answer extract on iherb.com, they're only $10/ea. Why not?

[skiJ]

You did nothing wrong. Keep doing what you're doing. Sending positive vibes.

This ^^^ G.O. -

IMO things are different now -
regarding your treatment, you have to put You first.
this doesn't mean you can't still be courteous and Polite, but
a medical assistant that is trying to manage the schedules of 13 oncologists is not your advocate. they have to manage the schedule And if that means moving you. . .

I would say, no. You have an appointment. as goat says, the other patient can wait.


the 'journaling' is good ( your journaling is good ) -
A Good, positive attitude can be a tremendous asset.

There is a lot of good information - even just on this page !
get into your treatment. Be active - and eat as well as you can !

Good luck !
Please keep us posted. skiJ