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.

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!

Snowdrift

First snow in the valley today. Here comes the mail carrier. He's wearing shorts. Shorts in winter. How Utahn.

The snowfall has made me giddy. I love living in a place with seasons, but it really only works when you have a whole year under your belt and experience the transitions. Randin and I arrived in mid-winter, and to be honest I found last year's cold and snow to be overwhelming and depressing. Like being dropped naked into a snowdrift. I felt some dread that this upcoming winter would set me back. Instead I'm thinking of Christmas trees. Yes, this year I think I'll have a small tree and decorate it with the hindu pantheon (that's a lot of ornaments!).

I'm starting to move around and exercise with some regularity. I have a physical therapist who, for this month at least, visits me and has given me a list of activities to start building strength. I'm a little embarrassed by this. Me, a yogi, a hatha yoga teacher no less, doesn't know how to build strength on her own? Not from this place. I am graced with compassion thanks to this experience. I have not been the most compassionate yoga teacher. The level of physical strength I assumed in my students was considerable. I've never had a student who couldn't do a lunge for example (or that I didn't assume could do one). Now I am a student who doesn't have the strength to do a lunge. I'm beginning from an unfamiliar place and I don't know the way! I'm grateful for my guide, Adam.

I'm a little more than midway through Cycle 9. I will probably begin Cycle 10 November 12th. After that, maintenance for a year. 2009 has been a year of confusion and disorientation! You can tell, just look at my hair!

Wet or a Warm Blanket?

On Thursday evening I was a wet blanket. I was mad because no one outside of the hospital other than my Sister Kim seemed to remember my big PEG #15 day. I was mad because my big PEG day was marred by faulty port-o-cath. I was mad because I'm not in charge of every little thing at Starfall anymore. I was a wet blanket, embodied, tears and all.

Sometime before midnight and dawn on Friday I woke with a moment of clarity. Deep inside I've always known that my port-o-cath was in the wrong place. It had been installed during the lowest trough of my treatment, when I was malnourished and depressed. My skin was simply not healthy enough to stretch to accommodate this 1/2" x 1" device. When you know something is wrong, there is just no denying it. I wasn't looking forward to having the device removed and something else installed, but realized I have a year and three months of weekly chemotherapy before me. The device must be as healthy and stable as possible.

Essentially, because the skin wasn't healthy enough to stretch part of the suture scarred open, leaving a 1/4" hole. A hole is a very dangerous potential for infection.

The latest status? Port-o-cath removed. PICC installed. Here's the lowdown if you want it. PICC will remain in left arm until cycles 9 and 10 are complete, and PEG Asparaginase has completely left my system and I can go off of blood thinners. This is roughly 6 weeks from now. At that time, a new Port-o-cath will be installed, left side, but lower.

Now as for Friday, and all the procedures, I have to say it was one of the best, most blissful days of my life. See I asked for warm, not wet blankets. Hospitals are famous for their abundant supply of warm blankets.

I had the strangest offer when I arrived at Angiography. The nurse asked if I preferred to be sedated or conscious for the procedures. To be sedated would have added another 2 hours to the event, and I would have missed all the action. I've been sedated once, when the port-o-cath was installed. I liked missing that. I really had to think about this choice, after all it is nice to be oblivious when potentially painful things are happening to your body. But, I really love the team in Angiography, I like to hang out with them, they make me laugh. The surgeon's are skilled, and I like to appreciate their work.

I decided to go through it consciously. It's more my style, after all I'm trying to become as conscious as possible, right? What an opportunity to practice. And not in a masochistic way! The numbing is really incredible, no pain, just a little pressure, thankfully, no IV!

First they cover me with as many warm blankets as I like, next they tape me under a big blue tent so I can't see what is happening, then they numb me up with lidocaine and the adventure begins.

We had a great time while pulling out the port-o-cath. We all shared stories about some of our travels, especially into the wild. One person actually witnessed orcas catching and eating sea lions off of the ice! U2 was requested—one of the nurses had created a play list of the current tour. I asked, "Won't you be bored at the concert having heard all these songs in order already?" He explained, "My wife and I memorize the play list, then sing along with the musicians. It's a spiritual experience." I really got where he was coming from, and my heart filled with the joy of the two of them, sharing their voices with each other, and everyone else there.

Suddenly the port was out, whiz, bang, bam, and then it was time for closing the wound. Dr. J had to trim off or shave off the edges of the wound to create a ungranulated surface that would encourage the sides to adhere to each other. As he sewed he told us the story of how play lists on the radio came to be. Apparently, some desperate radio executives were having a power lunch at a local diner with a jukebox. All day long as the executives discussed their predicament, people kept nickeling the same song over and over, right down to the waitress, who selected that song at the end of her shift. "Aha!" said the executives, "People don't want variety and change! They want the same thing again and again." So they (and shortly after every one else) changed their format to 25 songs and that is one of the many reasons the world is stuck in a rut.

Once I was sewn, Dr. J looked over his work and said, "I don't mean to brag, but that looks pretty damn good." and then strutted off into the other room to get a mirror for me to appreciate his handiwork. You know, it did look pretty damn good. Two days later, it feels great too!

With the port-o-cath removed they shuttled U2 and me, past Randin waiting so patiently, ("Hi honey! One down!" I said), into the room with the X-Ray machine for the PICC line.

I won't lie to you. The only thing pleasant about having a PICC (peripherally inserted central catheter) installed is the warm blankets. And, once a PICC is installed it isn't very comfortable. One of the fun things about the X-Ray room however is they often turn on and off the lights so they can see the images. You kind of feel like you are camping with a flashlight. And one time one of the nurses had to crawl under the blue tent to release the tourniquet so it was like camping with another person.

By 3PM and after 5 hours of waiting in Room 5 (AKA the Icebox) I was home, filled with Daptomycyn (systemic antibiotic for all my new holes and burns) and Methotrexate. No matter the drama, the perceived obstacle, there is no stopping this protocol when the chemo is due, you get it.

• Burns: Better everyday, but still, slow healing.
• Hair: I look like a person wearing a shaggy rug on her head,
• Hair: or like the grumpy old man yelling at kids to get out of my yard.
• PEG: YES finished! 6 weeks from now I'll know what it is to be PEG free.
• Chemo: No, not chemo free. Methotrexate, 6MP, and Vincristine will accompany me the rest of 2010. As well as Dexamethasone, but at a much lower dose after cycle 10.

Dawn and Lisa Marie came over for dinner. I'm not ashamed to admit we were mung bean munchers. The food was great. Lisa Marie and I talked at length about the day's experiences. She introduced me to a concept called contrast. When the distance between two extremes occurs, it creates an opportunity for seeing and experiencing on a much more profound and clear level. As she said this, she opened her hands to represent the distance and immediately I recognized the midline. In my spiritual tradition, it is the space in between the subject and object where the bliss of consciousness resides.

I'll tell you, I was in this space all day long. Yes, I was dealing with disappointing, sometimes even painful events but I had accepted their necessity as a blessing. I wound up asking for, and receiving nothing but warm blankets all day.

PEG #15

Today I received dose #15 of PEG Asparaginase. That's it. The last one. At last, I've reached a point in my treatment where there isn't a new drug to replace a previous one. Nothing new to come from that venue. About a month from now, I'll know what it feels like not to be on PEG and blood thinners.

It seems to be my course though, that a milestone gets met by a setback. My porto-cath has not healed properly, and will be removed tomorrow. I will have PIC installed. It will serve me for a few weeks, then we'll make another plan from there. This will give me some time to heal, without delaying my antibiotics or my chemotherapy.

I am tired, I admit, and sad. I wish things were different, but as they are as they are.

I am full of love, and gratitude.

Reprieve

Last week my platelet counts had not recovered enough to begin cycle 8, so I was sent home without my chemotherapy. Its nice to have had a break, I think. Today I go back in for a blood draw and we'll see what the future holds. I should probably have the boys in Angio (sp?) take out the stitches in my portocath, too.

So, I almost don't even want to write about this, because doing so gives ever more evidence that I am a masochist. But, two weeks ago, I managed to spill boiling water on my legs and feet. It went like this: We keep filtered water on top of the refrigerator. Thinking I am stronger than I am, I tried to bring it down, but dropped it on the cord of the tea kettle that been set to boil. This tipped the kettle off of the counter into the perfect pour position, which it did, on my leg.

I'm healing 2nd degree burns now.

Seriously, I ask, when will I learn patience! When will I stop, and just stop! I do think I've learned something this time. Yes, indeed. I've learned that I'm really tired of hurting myself. I've learned that Randin is a most amazing and caring wound dresser. I've learned that Silvadene is pretty gross after its been on a burn for 12 hours.

Momentum: The Movie