Monday, November 30, 2009

Goodness, Gracious Me

Sigh. Saw myself nearly naked in a full-length mirror today. Chemo tiredness has not been kind to my body. I'm so misshapen. I never considered myself narcissistic, but I miss the strength and form of my former body. I was in this viewing predicament because I went shopping for clothes and decided to try them on before buying. It's good that I did. I didn't buy anything I had selected. Everything I put on made me look mannish. Maybe it's the hair. My hair looks just like Dad's hair. I look so much like him right now it's disturbing.

Thanksgiving marks the one-year anniversary of my diagnosis. There's nothing like a cancer diagnosis to knock one out of mourning. I was mourning Dad, then suddenly was faced with my own death. I stopped mourning and started, I don't know, shock therapy? The shock of my diagnosis and all that entailed (and entails).

Prior to my diagnosis I was obsessed with getting pregnant. My plan at the time was to get pregnant while Dad was in the bardo so I could reincarnate him as my child. As disturbing as that may seem, it was the result of grief and many thought processes, and the continuation of the last conversation I had with him. He told me he was fascinated by my relationship with Randin, because we are able to hold so much space between us, and yet not cheat. (My father was a famous philanderer). He wanted to witness our relationship as a fly on the wall. He also told me he wanted to study yoga, the philosophy (My father was a closeted philosopher), and understand how it informed my world view. He appreciated my equanimity and suspected my studies influenced it. When I got the news Dad had died, my first thought was: If I raise him as my child, we'll be able to continue our conversation. How sweet and innocent of me. Between September and November I tried like hell to get pregnant.

I succeeded in a sense, I got pregnant with Leukemia. Now, a year later I've given birth to myself and I look like Dad. Be careful what you ask for. You never know how the Universe will interpret it.

I want to feel more feminine. I want to embrace my softer side. My whole life I've spent trying to be Dad's son. Or at least co-opting masculine traits to keep myself contained and in his favor. Responsible. Trustworthy. Solvent. I just don't trust softness on myself. I don't like how it looks. I sure like it on other people though. Certainly I prefer to be held and comforted by soft motherly arms. I want to be soft on the inside, hard on the outside. Like an M&M. A purple one, purple being this week's favorite color. Oh well.

Thanksgiving, my favorite holiday, has come and gone. This year I spent it at Mom's, and not in the hospital. Randin and I set up our Christmas Tree. After 11 Christmases together this is our first tree. No ornaments as yet, just lights, rainbow colors: red, orange, yellow, green, blue, purple from top to bottom. What can I say. I'm the rainbow girl. I suspect I want a tree now because this is our first christmas living in a wintery place. Sure the hospital room last year was wintery, but too small for a tree! Plenty of rainbows though.

I read Ken/Treya Wilber's Grace and Grit. This is the story of Treya Wilber's experience with breast cancer. Not to spoil the ending, but, she doesn't make it. Her story is lovely though. I cried. I'm glad it didn't depress me. I could relate to much of her inner experience and conflict. She identifies the same conflicts cancer has brought to the fore for me: balance between male/female, doing/being, fighting/allowing, aversion/acceptance. As much as I wish I could have avoided this experience, I remain grateful for it.

I'm so full of wondering, after looking at death this year, how will I die, when it comes time? Part of me wants assurances that it won't be cancer, or at least that it won't be more chemotherapy. Who can tell? I suppose I say to the Universe, "Surprise me." I know in saying so I won't be disappointed.

Thursday, November 12, 2009

The Boys in Angio

Hello everyone, I weigh 113.5 pounds! Just received my chemo to start Cycle 10 of Consolidation II. This is the last round, and then hereafter it is Maintenance. So what's Maintenance? Basically its the core of Consolidation II, with less, much less, steroids. Hopefully this means my face will return to regular size, and that I will continue to feel more myself. Doesn't this sound lovely? Just for fun I took a photo of myself yesterday, to compare to a photo of I had taken exactly a year ago. Shocking. Probably not so great for my self-esteem. Actually it's okay. I can accept the changes because my personal transformation through this process has been fantastic. Although...

I have a friend who served in Vietnam. He told me that one time, when they were under fire and the circumstances were grim he said to his companions, "When we are old and we talk about the war, we'll probably talk about all the good times we had and laugh and joke about it. I want us to remember this moment too, when it was really bad, and that no matter how much fun we may have other times at the core this experience really sucked." (or something like that).

...I feel this way about my chemo experience. Yes, I've had spectacular realizations, but chemo sucks. It really sucks. It is hard, and it is scary, and it is dangerous. It is war on your inside parts. I haven't wanted to say anything bad about Peg Aspariginase, mostly because I wanted it to work out and I didn't want to jinx it. Not everyone can tolerate it. So far only one other person participating in our study has completed all fifteen. It is an elite club! But, I can feel now, 6 weeks after my last dose, Peg made me feel awful. Really awful. It has a half-life of 12 weeks. This means it will be half-way out of my system on Christmas Eve! And fully, mid-March.

Now on to the meat of this posting! I want to tell you about the process of a lumbar puncture (LP). It is really fascinating I think, and today was the best, most painless, and quickest LP to date. The doc was Dr. Jacobs, (not pictured right, these photos are from the LP in December of last year) who was also the surgeon who removed my portocath, installed the new PICC and sewed up the hole in my chest which has finally, thankfully healed! Anyway—I'm a fan of his work.

When I have the energy, I hop up on the skinny table and lay on my tummy; otherwise, I use a ladder. The nurses (one of the Boys from Angio) prep my skin with an orange disinfectant and then place a blue cloth with a hole in it on my back (picture 1). I think this has something to do with creating a sterile field, but I can't help thinking of the movie Like Water for Chocolate where the hero makes love to the sister he's been forced to marry through a hole in a sheet. Not very romantic, not that there's anything sexy per se about an LP, but I do feel vulnerable, and there is something going into my body. Sometimes I wonder of the surgeon can't find the spot on his own, and the hole in the sheet helps him narrow it down. That and the X-ray machine. Today Dr. Jacobs wore a tin-filled apron with tiger stripes. Tin is lighter than lead. And I confess the tiger stripes were a little bit sexy. Maybe I can convince them to get satin sheets! Kidding.

The only thing that is painful really is the lidocaine. After that, the lumbar puncture can begin. They use X-Ray to be sure the hollow needle goes between the lumbar vertebrae, usually 3 and 4, and does not nick any nerves. When the surgeon is good you don't feel a thing. They draw off 2 CCs of spinal fluid to verify there is no Leukemia in the spinal column (picture 2). The spinal column is a haven for sneaky lymphoblasts because most of the chemo can not penetrate the blood/brain barrier—they go there to hide. The LP is an extra precaution against relapse. A relapse in the spinal column usually means don't answer the door because death's a knockin'. But look at the spinal fluid, (picture 3). It is beautiful, clear, and crystalline. Just like the yogis describe the sushumna nadi. You can see how it is a conduit of light.

After the spinal fluid comes out the chemo goes in. The chemists shake me a cocktail of Methotrexate, ARA-C, and hydrocortisone (picture 4). The surgeon then pushes it into my spine through the needle he used to drawn the spinal fluid. As it enters, I feel a weightiness and a dull ache usually down one leg, sometimes down both. Today it was the left leg. They put a little more chemo in then the spinal fluid they take out. Bonus! (picture 5) Finally, I ask the surgeon to draw a picture on my band-aid (picture 6), and amazingly they always oblige. I figure a little extra mojo can't hurt. I have quite a collection of these band-aids, they are the only souvenirs I seem to want to keep from this experience.

You may also notice some bruising and a very tacky tattoo on my back. I can explain both. The bruising is from bone marrow biopsies. Thankfully I didn't have to have one of these today. The tattoo is from being 18 once. When I am through this, I asked Randin to buy me tattoo removal for my birthday. It wouldn't be so bad to keep it, if it were legible, but as it is now, it is just a blob. I'm also embarrassed to admit that some model somewhere has the same tattoo, and that is where I got the idea in the first place. The tattoo itself is very pretentious. It is the symbols for man and woman interlocked. Bah. Like I said, 18.

Okay, so you often hear me refer to the Boys in Angio. Just who are they?! Here they are. Almost every time I go down into the bowels of LDS Hospital for some horror treatment in angiography these three guys are there looking after me. Kent, Dan, and Chris—I am deeply grateful. I always have a great time thanks to you. And Chris, next time I'll be eager to see your photos from U2!