Monday, September 26, 2022

Stop fucking asking me "How are you feeling?" Cancer Tips to support me and others (maybe)!

So I'm working through some major stuff here. I've tried to be honest about it. It's not easy, or fun. I know that I don't have it as bad as others, but fucking fuckity fuck this shit is scary. And that's just the cancer.  

Since finding out that I've got melanoma in March, through surgery and recovery, immunotherapy, more cancer, and more immunotherapy, I've been trying to be strong. I am strong, dammit.  

I'm also scared, anxious, pissed off, sad, depressed, and overwhelmed. I have days when I can't get out of bed and other days when I can slow jog a 5k with my dear friend, Brian. Some nights I sleep more than 12 hours and others I just cry all night and can't sleep.  

I wonder if I'm going to make it. I try pep talks. There are mantra's written in dry erase marker on my mirror. I'm praying. I'm speaking the good. But this is still really fucking hard. That's just part of it. Like so many of you, I also have a job that needs me where I want to succeed. I've got family who loves me and have relied on me for years. I'm trying to get through the end of my marriage and juggle grad school. I want to be the inspiration, not the reason for worry. I'm trying to keep up with the things I love like singing, hiking, and costume parties.  

As I go through this, the hardest thing to answer up to a few hundred times a day is "How are you doing?" or "How are you feeling?"  

Do me a favor and don't ask me that. Please. I'm already reminded of the cancer with bouts of exhaustion, nausea, and vertigo. The random skin rashes that itch like crazy also like to pop up in case I forget. Do you really want to know all these details? Do you want to listen to me rant about the fact that my doctor's missed this through four appointments over six months? Hear about my anger? My sadness? My depression? My diarrhea? Even if you do, I don't want to talk about it again.  I am posting updates on my caringbridge if you really want to know.  

Instead, try: What's new? How's it going? What's going on? Then if I feel like talking about treatment or prognosis, I can choose to add it into the conversation. 

Otherwise, you'll get a pat answer that makes neither of us feel better: "good days and bad days." 

Also, for fuck's sake don't talk to me about a fad diet or something you read on the internet that cures cancer that you have no idea if it actually works because you DON'T KNOW ANY REAL PERSON who has tried it with success. Just because you read it works on the internet doesn't mean I should give up what trained medical professionals know about my cancer to try this stupid shit. Look at what you are sending me. See if there are any studies out there that show it works beyond those done by the same people who are selling this diet or that herbal supplement. And even then, I DON'T WANT TO SEE IT. I've got a team of doctors at two major medical centers. Both are open to alternate therapies. We are already talking through them all.  

It would also be lovely if you didn't tell me about the friends you had die of cancer. Or those that had a dozen surgeries and are still fighting melanoma or other cancers. Neither one of these things makes me feel any better. I don't want to be reminded of the fact that I might die or the fact that I might have to have a dozen more surgeries to fight this. One was enough. I promise.  It's good to tell me you had friends beat cancer, but please don't tell me a friend had a melanoma cut off and is fine.  These are very different things.  

And if I haven't talked to you in 20 years or we are only Facebook friends because I made out with you at a bar one night before I got married, your offer to be a listening ear is just plain creepy. Honey child, if I thought we were that close, I'd have talked to you about this and all of the other crazy shit with my failing marriage, my depression, my job worries, and my other problems over the years.  

Don't share my address with strangers and ask them to send me get well cards or gifts.  It's fucking weird to get a note in the mail from someone I don't know, or even worse one that isn't signed at all and just says "We're praying for you."  

Please don't suggest that I should be laying in bed wallowing in pity either. If you see me out at a concert or going to an event, cheer for me. Trust me I took an extra nap and will pay for it later with more exhaustion. It's much better for me to live my happy moments and sleep around them then fall into a depression because my health is declining.  

So what does help me in all this?  

Send me postcards or notes or cards. My cousin and a few friends have been doing this and it's lovely. Hell, it doesn't even have to be a postcard or note. I love kid art for my fridge and bathroom mirror. Or your own art too. You can still color me a picture from a coloring book to make me smile. 

Emails from old friends (like one of my college professors) also really make my day. Especially when they just say things like, "what's new with you?" It's ok to mention that you hope things are going well with my treatment. Tell me about you, too, though. I want to hear about your garden, your kids, your hobbies, your life. I want to be reminded why we are friends. I want to read about our memories together and the new memories you are building. I want to live vicariously through you as you run races and travel since that part is hard for me right now. I'll update you on my treatment/health on days I feel like it. I'm not shy, but don't want to be reminded about it. 

Post great photos, jokes, or send me funny tik-toks or instagrams. I love that stuff. Kittens, puppies, cooking failures, dad jokes......I'm all eyes and ears. 

Offer to meet me for a meal or set up a game night or craft night. As my treatment gets tougher, I'm sleeping more and getting out is no longer easy. If you know me, I'm a super extrovert. I'm usually the convener, the person making the plans, and I'm missing seeing friends right now. I've not got the energy or clear brain to make the plans to see people that I used to. Even just offering makes me smile, whether or not we set a date. 

I want to hold your babies, pet your puppies, and feel your cats purr too. Those are all good things. Some of my greatest moments of joy lately are playing with the puppies in my building on the elevator. 

Love on and with your loved ones. And tell me about it. Remember to live every moment to the fullest and not let work become your life. Just hearing those stories in a phone call, email, Facetime, or in person makes me happy.

Pray for me and/or send positive energy my way. I believe that it helps and buoys me up on rough days. 

Although not necessary, meal gift cards like door dash and grub hub are awesome. Even better if you are local is to offer to pick up a meal from a local place and come eat with me. Eating alone can be pretty lonely, and even worse when you are going through it.  

Accept and understand that for me, I'm going to probably be more self-centered than you've ever seen me before. Even if your life is horrible, I'm working on focusing on me. That might mean that I'm not the listener I once was. It may also mean that I seem short with you. I may cut you off when you start to talk about something that I know will trigger tears or anger, sadness or depression. Indulge me in this for a bit. I feel like I've been a pretty good listener for the first 45 years of my life. I'll try to get back to it once I'm through this hard stuff. 

Tell me I look great and you are glad to see me, preferably without mentioning the fact that you are surprised I have hair.  

Offer to meet me for a walk, hike, or stroll.  

Make sure to advocate for yourself and your family members in medical care. You know your body better than any doctor or nurse. If something feels off, trust your gut and get checked. Insist on that biopsy or test rather than being poo-pooed by a doctor.  

Those are my own personal wishes for how you can help me beat this. Maybe they will be helpful to others too.