Tuesday, February 18, 2014

Brand New Pocketknife

I considered titling this post "Chemo Hacks" or "Hospital Hacks" but that felt terribly derivative. On the other hand, everyone knows what it means, so I'll put it here in the body instead.

This post is for anyone who wants tips on self- advocacy in the hospital, especially if you come from a background of holisitic treatment. A lot of this is about letting go of your biases and getting what you need in that environment, but also knowing when you can avoid the intervention cascade and when you can't and you have to ride it out with other techniques.

1. Doctors and Nurses Know Stuff! You might not expect me to advocate them first, but they are deeply concerned about your care and their suggestions have merit. Are you miserable with fever or anxiety and sleeplessness? Maybe you would never take Tylenol or Ativan at home, but they can ease the pain. You are in the hospital; make it as easy on yourself as possible.

2. You should still question everything. My friend Jess told me how she trained herself to ask, during her labors, is it necessary? Is it safe? Why should we do it?

3. You can decline a lot of things. If the intravenous antibiotics and antifungals are making you violently ill, ask to skip a dose. Or argue with the doctor about their necessity. You might lose, but you might win. And sometimes they ARE necessary.

4. You are sick, and the hospital is not home. The rules are different if you have no immune system. You cannot power it out. Tinctures and homeopathics need some vital force from you. When the chemo has brutalized you all to hell, they probably don't have enough to work with. Don't be afraid of the big guns.

5. You brought your crockpot and your fridge and all this food, but the aversions are so bad and the hospital food is such garbage that you are starving and cannot eat. If you can get food from outside that works, great. But sometimes you just can't eat. Ask for anti-nausea meds and forgive yourself.

6. Beware the throwing of stuff at the wall. When they come for the third set of blood cultures because they keep coming back negative and your symptoms haven't changed, you can say no. You aren't a pincushion.

7. Ask the nurses to help. Too weak to get up and brush your teeth? Ask for a basin to be brought to the bedside. They'll get your food. They'll get you a commode. They'll carry you if you need them to. They'll wipe your ass if you need them to. They're nurses.

8. Still hungry, losing a pound a day, getting bloated from malnourishment? Ask for a ppn bag. It won't help your guts, but it will get nutrients and aminos into you. It helps.

9. Nourish your soul. When I start a scary internal dialogue I stop myself and say "why are we telling this story? What other stories can we tell?" I also bring my attention and breath fully to anything that hurts. This can help a lot. Don't run from it, it just gets bigger. My son made a drawing of a worm for me. I used it to remind myself to inch along.

10. Just on fluids? Ask to be unhooked for a while, to sleep, to go to the bathroom, to shower.

11.Tell your visitors when you are tired, what you don't want to talk about. Tell your callers your voice is tired. Tell texters you are too tired to type. They'll understand.

12. Ask for help from friends and family.

13. Ask if you can wear your own clothes and have your own bedding.

14. If you are sensitive to pain, come up with some tricks. I open my throat and make a high, warbly sound if I'm going through something painful.

15. Believe in the treatment. You've chosen this path. Commit. Surrender. Find a way through. Write a beautiful narrative of healing and peace.

16. You WILL heal. All this crap they are doing; you'll recover from it. It will take effort and it won't always be fun, but you are not broken, just bent. The damage is significant, but the body is amazing. Learn about restoring immune and gut health.

17. It's not over when you leave. Take the weeks, the months, the years that follow to live carefully, conscientiously, joyfully. Get WELL.


  1. Sarah: Remember me, Claudia Fernsworth from TCP? last time I saw you, you were working at Granit State Candy.... I just got the news of your latest news...... I will work to mobilize the Boise and California folks I know to register to donate bone marrow......

    There is so much wisdom in this post. I am in awe of your sensible reflections.