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.

Sunday, February 2, 2014

Wagon Train

The wagon train must have been hard living. Depending on the point of departure, it would take many months or more than a year of challenging travel in peril of disease and certain discomfort, bandits and hostile indigenous populations, hunger or even starvation; I'm sure the list goes on. Out in the great prairies, travel-weary or worse, people must have looked to the sky at the flocks of migrating birds and wished they could fly, maybe even wondered whether there would ever be an easier way.
Perhaps I should ask these guys about it.
I am going to tell you some things about chemo that aren't comfortable to hear. I'm not going to tell you anything about cancer because cancer is not chemo. Now that I'm through the first round, the cancer is supposed to be eradicated although we won't know that until the biopsy. The first time I had cancer, I felt so horrible by the time I got treatment that it was a relief to just lie there in the hospital. This time, not feeling nearly so bad, I've had more time to reflect.

And by reflect I mean, in no particular order: rejoice, relax, rage, cry, moan, fear, whine, embrace grace, fall apart all over again, and a few other variations on the theme. To be honest, even though I knowI'm much less sick than I was the last time, my mind has partitioned off the pain of the experience such that I'm trying to remind myself that this isn't the worst I've ever felt. 'Cause it sure seems like it.

Set aside your usual expectations of my sunny aplombitude for a few paragraphs here.

Chemotherapy is Hell. It feels conceived, truly, by the devil. It kills you slowly, from the inside, while your body helplessly and continuously inflames from its already impaired status in a futile attempt to defend itself from the best allopathic medical science has to offer. You might be done in a week, but you won't be, because the neutropenia of the declining white blood cells causes a fever which the doctors then blast with intravenous antibiotics. These are every bit as miserable as chemo. No one would be subject to a course of chemo this long, but somehow antibiotics are different, I guess. Oh, well, they are just doing their best.

For me, appetite disappears, the mouth turns to dust and chalk, every mouthful causes a rebellion, but hunger doesn't necessarily go. So nights can be sleepless agonies of starvation and even convulsive abdominal pains, but the chemo and the antibiotics have conspired to destroy the digestive tract so there are no enzymes, acids or flora to help break stuff down. Every bite is followed by stunning heartburn. The mouth can fill with painful sores, and the bowel looses toxic diarrhea. Of course, there are drugs for these things, which have terrible side effects for me in terms of rebound symptoms and self-perpetuating discomfort. The topicals also are full of lovely chemical flavorings and aspartame, just to make sure I don't stand a chance.

My body is strong and noble, and it fights against this assault with relentless vigor. I spend long hours trying to talk it down, explaining that the messenger may have had a point to make but his methods were destroying the host, that cancer may be information for my body but my body can't endure it and all I have is a bulldozer for assistance at this point. 

In 1911, Dr. John Beard published his research on the cause of epithelial cancers and developed a successful enzyme protocol. In 1967, Dr. William Kelly published his continuation of Dr. Beard's research. Dr. Nicholas Gonzalez continues in their footsteps today, and the clinical successes continue to mount. Drs. Gerson, Budwig and Burzynski have incredible verifiable testimonials of miracle stories associated with their work, all of which rely on building on the body's strength and giving it tools to repress the cancer itself. When I had cancer the first time, I didn't know enough about these organizations and I didn't feel I had time to find out. I've learned a lot since then, so I felt some relief that at least, should I receive a repeat diagnosis, I would have alternatives.

But I don't. These organizations don't treat my type of cancer, it turns out. I don't even want to know why, really. I have found lots of tantalizing tidbits, natural therapies that seem promising, but no clinics. There are a few scattered, unsubstantiated claims on the internet (which isn't to say that I doubt them, I just am not willing to stake my life on them), and lots of people making pronouncements who have never actually had or treated acute myeloid leukemia successfully. I recognize that research requires risk, but I only have one body to work with, as was pointed out to me. I can't just throw stuff at the wall. I need some kind of argument for why something is going to be effective. I am wide open to the idea that there are powerful healing modalities that work outside conventional paradigms, but I need something to hold onto. I have a husband and two small children. I will go to Hell for them if I have to. And I have to.

As recently as the seventies, more than half a century after Dr. Beard's work, no one knew what to do about leukemia. Acute leukemia was a death sentence. The mechanism behind it doesn't act like the mechanism behind epithelial cancers, so the increase in incidence is an opportunity for smart and insightful doctors outside the scorched earth school to assemble the existing work of far-flung healers and the powerful research tools now available to find a better path. Now, however, although we won't dance with the numbers, the medical docs have got something. My odds are very, very good. I am going to walk away from this cancer-free, and in the years to follow I'll lose the limp as well. The current batch of therapies does cure this cancer, not for five years, but FOREVER, when it works. And it is going to work on me. I have a fabulous physician, who cares deeply about his patients and is genuinely open to customizing treatment as much as is possible within his framework. I am strong enough to go through this. I plan to outlive him, and he expects it, too.

I can fall into this abyss, and float there, and endure its torments because Love carries me. I can feel it coming in, all the time. I am an engine of it. Do not be confused when you call or send a text and I tell you I'm good, and then you read this. I can be well and sick at the same time; good and not-good. I can rejoice that someday this will be history, not just for me, but for anyone who has this diagnosis. "[We] cannot decide [what times we live in]. All we have to decide is what to do with the time that is given us."-JRR Tolkien.

All I've got is a Conestoga Wagon. No passenger jets yet. Still, it will get me to California, and there's gold in the hills.