Thursday, July 9, 2009

Made It Through

Before I get too tired (maybe I won't this time?) I wanted to answer a few questions, and let you know I survived the day alright. The staff at LDS Hospital is top notch, they always manage to make a day like today tolerable and, dare I say, maybe even a little fun! Two important procedures have outcomes I'm very anxious to receive. The bone marrow biopsy will reveal if I am still in remission. The lumbar puncture will confirm whether or not any little blasty-nasties have gotten past the blood brain barrier. I'm not too worried. My blood counts show good recovery, but it will be nice to be sure in spite of the discomfort of both procedures.

  • Feeding Tube: I agree, it is a little bit sexy. Except it makes my nose run.
  • Power Port: Got to use it today. It is freaking awesome. It will make my life so much better. I already feel less vulnerable. Basically they poke a needle into the center of the port. The port has a flexible material that seals around the needle, then the needle is clamped into place. when the needle is pulled, the flexible material seals and I just have a little poke in the skin covering the device. It is GENIUS.
  • Pride: Lots of comments on this point. Pride and control. What is remarkable is new phrases are entering my vocabulary. Like, "I can't", "I need to rest", "Yes, you can help me.", "Would you help me do such and such." They are awkward as yet, but eventually they will roll off my tongue. And when I am strong, I will help others in a new way. In the past I helped others primarily to build up equity in the relationship, to create a power differential where I owed them nothing, and they owed me heaps. Because that way, I was sure not to have any debt. Not having any debt is a big deal to me. No debt=success. But in the help from friends (and even strangers) department I'm in way over my head now! I'm not afraid of this anymore. When I am strong, I will know better how to help others from a place of compassion, not power. What a gift!
  • Fat Face: Hey what's up with the fat round face? Is that an indication of weight gain? No. It's the result of steroids. Doesn't my mouth look freakishly small in the middle of all that roundness!?

I also neglected to mention that while I was in the hospital the second time I had some great visitors all on the same day, and even better wound up getting three unsolicited foot massages each day. Roger Wilson and his lovely wife Kris arrived in the morning, and Stefan Gruber, April Greiman, and Michael Rotondi in the evening. I hadn't seen any of the evening guests in many years so it was a real treat. April brought me a Wednesday Buddha. He is represented with his heels held together and an alms bowl at his waist. Stefan brought me a copy of his animation show he is touring across the country. If you are not familiar with Stefan's work, you should absolutely check it out. You can get info on his tour here. A sample of Stefan's grooviness.

Off for now to enjoy the effects of poisons in my system.

Tuesday, July 7, 2009

An Overview

Let's see now. I think there is some kind of pattern to when I feel like I have the capacity to write something. It has to do somewhat with where I am in my chemotherapy cycle, right now I'm on an off week, coming to the end of an off week. Last time I wrote I was just at the beginning of a cycle, so still in the "wellish" feeling stage. I really must keep a log of how I feel from one day to the next, I wonder if there are patterns and predictability?

No More Access
So, since last I wrote I had just been admitted to the hospital. I never ever felt ill. Never even had a fever. The second time they took a culture, I showed a gram positive bacteria, but that was later suspected false. Then, on Sunday the 28th the PA Nicole called and said the next set of cultures showed another gram negative, and asked if I felt well. Well I didn't. But my symptoms were completely unusual, and inexplicable. The truth is I didn't know how I felt, the only way I could describe it was: I feel like I am burning from the inside out, but I don't have a fever. And I'm scared.

So back in the hospital I went, for more cultures, more IV antibiotics. We decided to pull the tri-catheter, just in case it was harboring the bacteria. They sent me home, but with the mystery of the hot flashes unsolved. Was it menopause? What was happening!

It's Always Darkest Before the Dawn
Dawn is a new friend and chef we've been hanging out with lately. She's a wonderful person, truly, I feel so blessed to have had her come into my life. It was over dinner that I described to her the sensations I have been experiencing. She said, "Oh, that feeling. I hate that feeling. That is a horrible feeling." See, Dawn has been to 82 pounds and back. She explained that what I was experiencing was my body turning back on. My metabolism kicking in. Me, expanding. 

Its was a profound "Aha!" moment. What should I have expected? After all, I shut my body down, and now I'm packing it with food. Like an infant, or toddler I'm having growing pains. I'll tell you, it hurts and is scary because it is unfamiliar. Now that I understand what I'm working with, I'm much less stressed. 

Feeding Tubes and Other Methods
The feeding tube is a fantastic success and I am so grateful for its support as I learn how to eat again. I wish I had started it sooner, but my pride prevented it. See, I really saw it as a failure. It's funny. I feel the same way about all kinds of "artificial" support. I'm ashamed to take anti-nausea medication. I'm ashamed to take pain pills. Pride is a mean thing. Is there ever a time that it serves you? Or perhaps it is misnamed? Misapplied? Maybe I don't even understand the word. How often do you hear about people suffering needlessly just on account of their pride? I do it regularly.

As it stands now I get 1500 calories while I'm sleeping and do my best through the day to supplement it. Some days, my appetite is strong. Others not so much, but at least my body can rely on those 1500 until my appetite improves. Plus tubes up people's noses is very, very attractive. You should see how the heads turn!

Chemotherapy of the future and beyond!
For one week I had only one tube. The feeding tube. Apart from the growing pains it has almost been a vacation from cancer. That ended a bit yesterday, with the installation of my new Power Port. Back down to Radiology, where they installed the tri-catheter, I was expecting a similar, very conscious, very present experience. Not this time. They must have missed the knock out drugs last time. Because this time, Dan asked me, "Do you feel the effects of the medication yet?" I said, "I don't know, what should I feel?" he said, "Ok, no." The next thing I remember is "We're all done!" 

I am so grateful to have experienced the first installation. It really gave me an appreciation for the skill of the surgeon and I even felt glad that they get paid so much for their expertise. But this time—I was equally grateful to have missed it!

Where does this leave me now? I have a new port, it is healing. I'm feeling nauseated now and again. I'm trying to snack through the day on nuts and things. I'm trying new textures. 

This thursday will be a mega mondo chemo day. Everything, including a Lumbar Puncture, and bone marrow biopsy. To be honest, I'm not really sure what this will do to me.

Weighing In
I was not allowed any food for 12 hours prior to my surgery, so when I weighed in on monday, I feel it was my "true weight" without water from the IV or a 10 lb breakfast in my belly. 94 lbs.