Anyone hit the playa while on chemo?

[ohCarie]

Hey all, I searched and didn't find much from firsthand burners going to the playa while being treated with chemotherapy.

I will be on my third cycle of four during TTITD. So far it's been manageable, no port, so no opening to keep clean. I'm in good health otherwise and have been preparing for my 5th burn long before my diagnosis 3 months ago.

I would love some advice, tips, and generally words of encouragement on how to deal with side effects, fatigue, biking, and if I shorten my time out there, what days do I forgo, etc. I am traveling with a group and want to lessen the impact of my condition on their burn.

Normally I go for 9-10 days and bike continually, and we do take a trailer that we are arranging for a swamp cooler so I can chill during the day.

Thanks:}

[AntiM]

I did not have chemo with my cancer, but I did go two days after finishing brachytherapy radiation. I had small open wounds and had no problem keeping them clean. I attended the entire week, although I was very fatigued and taking a lot of painkillers.

We had a four wheeled bike to haul me around. Afternoons were spent napping in front of a friend's large swamp cooler, evenings were always early to bed. We were prepared to leave if I got too fatigued. Be easy on yourself, rest often and as needed. Scale back activities if you feel tired. Make friends with someone with an RV so you can retreat if overwhelmed. Have an exit plan to Reno so you can stay in a hotel if you need that.

Stay out of the sun, hydrate, and stick to a good nutrition plan. Sleep and rest. Do not push yourself, it is alright to scale back for a year.

I hope this helps.

[GreyCoyote]

Can I just say for the record, "YOU ARE AWESOME!!!!"

I don't know beans about post-chemo needs on the playa, but here is the part of your post that grabbed me:

I am traveling with a group and I want to lessen the impact of my condition on their burn.

You are simply amazing. Some people would be whining and bitching and making their entire camp miserable (or at least demanding/requesting special considerations), and here you are worried about everyone else. Post chemo. In the dust.

Carrie, I have never met ya, but I sure as hell hope I do!!! With an attitude like that, all I can say is "YOU ROCK, GIRLIE!!!" and you would be a most welcome guest in our camp any dusty day of the week.

[ohCarie]

Aww, thanks GreyCoyote. I am only a student of the great Maya Angelou who said, “I've learned that even when I have pains, I don't have to be one."

(Although my non-burner friends may not agree, as my incessant talking about TTITD I think can be quite painful. )

[tamarakay]

I have no experience with chemo at the burn, but I have a swamp cooler and love to pamper. You are always welcome.

[jneilvindy]

I hope you can make the eplaya forums meet n greet Wednesday evening during the burn!

Cause I wanna give you a big hug.

Be sure all your medication is clearly prescribed in your name and in their prescription containers with labels ect. when you arrive at gate.

Check everything for sun warnings. Some medication can make you extremely sensitive to sunlight and cause some painful skin reactions.

Keep up on your hydration and nutrition and most importantly just listen to your body and take care of yourself first!

It's your burn, do it the way your body lets you!

See ya in the dirt!

[VultureChow]

I am traveling with a group and want to lessen the impact of my condition on their burn.

Contrary to what your instinct may be, the best way to do this is to ask for help and communicate your needs early and often. Everyone genuinely wants to help, and the easiest way for things to get out of hand is to wait until a problem gets worse. You want to nip any problems in the bud before they grow.

[mosquito]

I am traveling with a group and want to lessen the impact of my condition on their burn.

Contrary to what your instinct may be, the best way to do this is to ask for help and communicate your needs early and often. Everyone genuinely wants to help, and the easiest way for things to get out of hand is to wait until a problem gets worse. You want to nip any problems in the bud before they grow.

I think this is going to be the best single piece of advice: Let your people know. The knowledge allows prevention.

Similar thoughts are to do the "buddy system" thing this year where if you're away from camp you always have someone with you who knows details about your condition and can communicate these with others on the small chance that your condition will worsen and make it difficult for you to communicate.

Also, I might want to check in when you arrive with your nearest Emergency Services Station, just so they know that you may have special needs.

Personally, I don't know what special needs you'll have, but can you arrange for a hexayurt? Seems like the biggest need would be to have a really good place to rest. I would also ensure that I took 24 hours' worth of medication with me whenever I left camp, just on the off-chance that a bad storm comes in and you can't get back.

--

And yes, I have to apologize: I *don't* know what needs someone receiving chemotherapy might have, so I'm not really answering your question.

[theCryptofishist]

Yes--have a clear sense of your needs. You may not know them yet, but best guess, with medical imput. Write them down and make copies. Make sure that your information (insurance, doctor, etc.) is available to one or two (at least) responcible people in your camp so that if something happens, time isn't wasted. Don't be afraid to add to that list once you are on playa and things manifest. And yes, ESD will be happy to have you let them know. (If they aren't, you might try another shift.)
You have talked to your doctor, right. S/he might not know the playa, but he does have a lot of knowledge about you and your responce to the chemo. And have an exit plan. (Someone did say that? why can't I find it? oh well.)

[Ratty]

Ohcarie, I bow to you. Do come and do keep an eye on yourself. I admire your consideration for campmates. If there is ANY possibility that you may need professional help, (beyond what the BRC hospital gives for free), buy insurance. Even if you have your own medical insurance being air-lifted to reno ain't cheap. Please come to the BDC&WB meet & greet on Wednesday. I would love to meet cha.

I'm a guest of the meet & greet myself. But they are a wonderful camp/village and would speak up if they were present.

[Dr. Pyro]

Ratty, OhCarie is part of our Village! She hangs out with the Meerkats.

[VultureChow]

Ratty, OhCarie is part of our Village!

Make friends with someone with an RV so you can retreat if overwhelmed.

[misfit]

[email protected] with all of your medical questions please..........

[Jovankat]

Ratty, OhCarie is part of our Village!

Make friends with someone with an RV so you can retreat if overwhelmed.

That took me a sec but BAHAHAHAHAHA!!

Best of luck OhCarie it sounds like you're getting some stellar advice here. Enjoy your burn!

[pink]

Life-flight insurance would be good to have. I can't remember the details, but perhaps someone else can chime in. It's cheap and good for a year (not just for the playa).

My first year with my camp our camp matriarch was 5 dYs off chemo when she got to the playa. She had a lot of other Heath issues like COPD (lucky it wasn't a dusty year) and didn't leave camp much, but still had a good time. I did hep C treatment at a music fest (chemo-lite at playa-lite), maybe a little bit similar? I had a really bad time with the treatment. I got easily confused, was exhausted, and spent a lot of time listening to the music from camp. Had no appetite either.

I second all the advice you've received; dial back expectations, don't compare this years burn to others where you could bike all day and dance all night, and listen carefully to your body. Take lots of whatever it is you have an appetite for (mine was Cozy Shack rice pudding; couldn't get enough of that stuff!). You sound like you are planning well, and I applaud you for not giving up your burn!

[VultureChow]

One last thing I thought of, though it might not apply to you.

I can foresee a problem if you really want to go out, exploring, entertaining or whatever, but your body just can't do it.

Not sure what you guys have planned for any interactivity, but having some way to lure people in and socialize might be nice. Food, beverages, games, gifts, whatever... That way you don't have to be sitting at home alone and sad at missing the excitement. Bring the excitement to you.

[jneilvindy]

Are new people attending the meetngreet considered guests or victims?

Cause it's not really clear to me!

[theCryptofishist]

Well, you've made 78 posts and we've seen your avatar. Don't wear the sweatshirt. You'll probably be okay.

Just Kidding! There is No Post Number Requirement!!

[FIGJAM]

I thought it was "1".

[jneilvindy]

Well, you've made 78 posts and we've seen your avatar. Don't wear the sweatshirt. You'll probably be okay.

Just Kidding! There is No Post Number Requirement!!

Is this to pretentious?

[theCryptofishist]

Are you bringing the television?

[GreyCoyote]

Well, you've made 78 posts and we've seen your avatar. Don't wear the sweatshirt. You'll probably be okay.

Just Kidding! There is No Post Number Requirement!!

Is this to pretentious?

I'd be concerned someone mistakes you for a Scrabble board and goes for a Triple Word Score driving south from the navel. Just sayin'. Then again... hmmm!!!

[jneilvindy]

Are you bringing the television?

32" in the bedroom and a 47" tv for the living room/outdoor pavilion area of my RV.

And a 3tb hard drive of movies, comedy routines and warner brother's classic cartoons to keep myself and the masses amused at camp.

[ohCarie]

You guys are silly. But I am kinda shocked that there are so few of us in this special club of BUIC, Burners Under the Influence of Chemo. With your bad habits and low standards and all.. I must be a certain kind of special.

[gyre]

There are cooling vests that use evaporation and some that don't.
Might help.

If you can go to altitude a few times, 4000 to 8000 feet and start acclimatization, it will give you an edge when you get there.