Do What I Say

I have often said, quite vehemently in fact, that cancer is a random piece of shit with no deeper meaning to be gleaned.  But when I sat across from my dad on Sunday while he told me that he was diagnosed with cancer, I reconsidered.  Maybe I am meant to help him through this.  Or, at least, as a former cancer patient, I have an obligation to help him through this.  But what do I say?  When he says, "They said it's very treatable," do I tell him that "treatable" is hell on earth?  Do I tell him what he is in for, or will that kill his spirit?

(Really.  I want your opinion on that question.)

A few days later I realized that lying on the bathroom floor crying wasn't helping my dad much.  So I went back into my tried and true Cancer Mode.  Emotions Off, Actions On.  Like so many times before, I used my pain as fuel for Getting Things Done.  I called all my doctors and found nominees for The Best Damn Medical Oncologist Ever.  I bought presents.  I made comfort food.  And I wrote some things down that I hoped would be helpful.

Always Get a Second Opinion

Always.  Just, always.  A good doctor is never insulted if you get a second opinion.  If they discourage you from getting one, then you need it more than ever.  Always get a second opinion!!

Know When to Turn Off Your Computer

Information is power.  Information has powers, too: the power to cripple you with anxiety, the power to give false hope, and the power to take all hope away.  Acceptable internet searches: information on and side effects of medications you are or soon will be taking, networking and personal stories, and new treatments only when it is confirmed that you will need to switch.  Ignore any article that contains any of the following: study shows promise for new cancer drug, used for centuries by the Chinese (or "wise men" of any stripe), all natural with no medicine or side effects, miracle, five-year survival rate, or a percent sign anywhere.  Limit your focus when researching.  If you want to know about immunotherapy options, look for that and only that.  Don't get distracted and start clicking on links willy nilly.  Once you veer off your original goal, it is nearly impossible to reign yourself back in, and you can spend literally days on end going down a spiral of increasingly irrational information expeditions.

If you find something you are interested in, write it on a list of things to discuss with your doctor at the next appointment.  Don't research it any more until then.  Ask your doctor a lot of questions so you don't have to hunt for answers yourself.  She is the one with intimate knowledge of your exact case, not Google.

Set a Quality of Life Minimum and Enforce It

I wish I had known this one ahead of time.  Oh, how I wish I had known.  If I could do it over again, I would have set a quality of life minimum for myself at "I am able to get out of bed and take a shower every day."  There were many days I wasn't able to get out of bed and take a shower, and I am a very changed person because of that.  It is different for each person and may evolve over time, but it is paramount.  A life without quality is not a life at all.  If a doctor recommends something that would violate your minimum, refuse.  It is not worth it.  I know this is especially hard in our family, since we have all spent the majority of our lives in hospitals in some capacity, and have great respect for doctors.  But they are not in your body, so you have veto power every time.  I realized my propensity to blindly follow doctors when I voluntarily let one pump arsenic directly into my bloodstream.  Draw the line somewhere.

When in Doubt, Go to the ER

Always err on the side of caution.  They're there all night regardless.

Feel Sorry for Yourself

Don't fight the urge.  If you want to mope around a few times a week, just do it.  And if buying yourself something you don't need seems like it will make you feel a little better, just buy it.  Who gives a shit?  If someone gives you a hard time, play the cancer card and make them feel bad.  Maybe they will buy you something out of guilt.  You are owed this much by the universe.

Get Over Yourself

Your pride is going to take a hit sooner or later, get it over with early.  Accept help.  It will make you and the helper feel good about yourselves.  You will not be able to do all the things you used to - but you are the only person who cares.   No one will mind if you don't work overtime, or full-time, or at all.  They won't be put out if you can't give them a ride or cosign a loan.   People are much more understanding than we give them credit for.  Allow humanity to show you how wonderful it is.  Don't be a stubborn jackass and try to prove to the world that you are still the same, strong super-person.  You're not.  But everyone loves you just the same.

Get a Healthy Dose of Mumbo Jumbo

Do some kind of alternative treatment.   Nothing big, and run it by your doctor first.  Personally, I have a tea for everything.  Immune System tea.  Digestive Health tea.  Sleepy tea.  Energy tea.  Who the hell knows if they work.  But it makes me feel like a contributor to my care, not a passive plaything for trainee phlebotomists.  And there is something to be said for the placebo effect.  If I take my De-Stress tea, I feel less stressed.  Maybe it is the desire to feel less stressed, or just the fact that I am sitting still for ten minutes worrying about burning my tongue instead of more pressing issues.  Or maybe it works, who knows.  Regardless, a routine and a desire to feel better can, many times, help you feel better.

Avoid Chemo at All Costs

If you get a chance to take a targeted therapy, immunotherapy, vaccine, or any normal-tissue-sparing therapy, jump through whatever hoops are necessary to get it.

Did I Mention Always Get a Second Opinion?

Comments

[uberimma]

Oh, God. I'm sorry.

[A fan]

Really sorry about your dad, but he has an excellent daughter to see him through this.

Good thoughts to you both.

[Jen]

My first response to reading this, was "ARE YOU F**KING KIDDING ME?" "CAN'T SHE JUST CATCH A BREAK FROM THE C-WORD" I am so sorry, but what an aamzing support you will be to him because not only what you have been though, but WHO YOU ARE. I totally can understand your switching over from emotional to "cancer action mode." I know that a time comes in all of our lives where we start to become more the caregivers than dependants of our parents. And though I am sure you dad doesn't need caretaking, in this instance you have a lot to offer and I know you will do the best you can to provide him with love and care. And your list is totally right on, I would add to that list - treat yourself to little things that make you feel better. Like every day that I felt up to it, I had some chocolate icecream or I took Peanut to the park, or I watched some stupid comedy. Anything that made me smile, I tried to do as much of that as I could. The small stuff you know - can make a big difference. Please please keep us posted as to his progress and how you are holding up. You are one of the strongest people I have met, and no doubt you will be strong for him too.

[Rani]

Tell him everything you know. I wanted to hear all of it. The bad, the ugly and the uglier.
Great post.

[bee]

wishing you and your family strength, recovery and peace, rae. hugs to you.

bee.

[Robin]

I'm so sorry to read about your father. I hope you'll be able to come back soon and let us know how he is.

This list is fantastic. Thank you so much for it. Especially setting the quality of life minimum - I wish I'd had that info a couple of months ago.

[A fan]

How's your dad doing, and you? Fingers crossed.

[A fan]

How's your dad doing, and you? Fingers crossed.

[Lauren]

Oh are you fucking goddamn kidding me?!?! Jesus Christ. Wtf?!?!?

Thanks for this list. A very dear friend of mine was just diagnosed w/cervical cancer and I shared it w/her. She laughed out loud. She needed that. So thanks.