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

Momentum

No more feeding tube. For now. I hope never again. And nothing permanent installed either. But if it becomes necessary, I'll happily put it back in. My pride is not that great. It's simply wonderful to have a break from the ongoing noise of the pump and the constant toilet trips. Now I am sleepy. I'm catching up on REM sleep. Oh! but my eye doesn't look like this from lack of sleep!

After we removed the feeding tube from my nose, it was time to go up stairs to East 8 for PEG Asparaginase #5. During the long trek down the hospital corridor I had a bit of a trip and a fall. Flat on my face. So, in place of a feeding tube taped to my face, I had a big, black eye. Will there ever be time where there isn't something for people to stare at when they see me? Although during the worst of the black eye healing they were staring at Randin, too. People assume so much! Even Dr. Peterson teased Randin, to which I replied, "Hey, this happened on your watch."

How did this occur? How did I fall? A combination of birkenstocks, shuffling while walking, trying to keep up with the nurse (because I simply couldn't have asked her to slow down a bit), appearing perhaps a little stronger than I actually am, and momentum.

Before I go into momentum, I have to say that the aftermath of the fall itself was very exciting being in a hospital and near the emergency room. There were alarms, and lots of people rushing about, code this, code that. I didn't black out, I just kept repeating "I tripped on my shoe." You'll all be glad to know that after this incident I got new shoes that strap to my feet. Securely.

Momentum

Momentum is slow when you are in it,

but happens quickly when you look back at it.

In that moment of falling I had time to decide.

And to think.

I thought, now if I had just taken martial arts

I would know how to roll out of this fall.

As it is now—I'm going to hit the floor with my face.

And bear it.

And say, I tripped on my shoe.

Because I did

But it really happened because I was too proud

to ask the nurse to slow down.

Is there ever a moment when we aren't in the midst of momentum though? Moving like a wave in acceleration, and then slowness. Every moment, stillness bleeding into the next? What changes our trajectory? There where many moments along that fall that could have prevented the injury. First being, "Please slow down, I'm unable to walk that fast." All the way to regret " If I had just studied Martial Arts." And finally the floor. Funny that. Why don't I remember all the time that from moment to moment I guide my experience. What comes before me is a gift how I open it is entirely up to me. Momentum never stops it moves in waves however miniscule. I push it in the direction I want to go. This is my first black eye, now, isn't that an adventure? And now I've a story to tell!

Listening

Paying attention

Brandi, keep listening and paying attention.

There are fun places to feel momentum though. Where you can't miss it. Like in a count down or a count up. 3-2-1 PEG Asparaginase to go! I'm halfway through Cycle 7. That means 8-9-10 more Consolidation Cycles to go! I really feel so much better without the Doxorubicin. I wonder, will I feel better without PEG? With less Dexamethasone?

Paying Attention

I've been wanting to write, for days now, but I haven't been able to isolate that cohesive thread that so nicely brings the essay to an entry, body, and closure. This past cycle has been more a list of observances, some enjoyable, some remembered from previous cycles, and some that simply had to be embraced as they occurred.

Cycles

Now that I am gaining weight and filling out I have the mental capacity to pay attention to what occurs during the 21 days in each cycle. It was my original assumption that I would feel the effect of the infused chemo drugs immediately, by the very next day. That really isn't the case. It takes 5 days for the drugs to reach their nadir, which means I feel a decline in muscle strength and energy beginning then. This also coincides with the gradual tapering of the steroid Dexamethasone. A good thing about Dex is it increases both my energy and my appetite. It masks the nasty taste in my mouth left behind by the 6 MP. The downside is Dex causes my feet and knee joints to swell, and the day after I take my last dose I am stunned with 2-3 days of the most intense leg pain I've ever experienced. Imagine the feeling of your muscles pulling away from your bones. Excruciating. I take the pain pills! I have 2 days of 6MP after Dex stops, low appetite on those days. Oddly enough, I also have hot flashes during this time. Originally I thought I'd isolated that experience to growing. Then I thought it was menopause, brought on by chemo. Now I wonder if it is the result of not getting enough calories during this period, and the chemo robbing my muscles for nutrients/protein. In short days 5-14 of the cycle are the least pleasant.

Weight, Eating, Feeding Tubes

Last weight in came in at 106. Everyone was very encouraged. I'll be interested to see how I maintain during week 2. Dawn is back, Tess my sister has taken and interest in cooking, and my good friends and foodies Sophia and Kenvin have picked up friday nights. A fellow Cancer survivor told me it takes an army to keep a cancer patient alive. I believe this now. I can manage to consume 1700 calories, and 90g protein most days, but given how hungry chemo is I really need 3000 calories and heaps of protein. Little me! At least until November, possibly December when my doses go down. So something more permanent may be in order. A direct line to my intestine. Ew gross. I know.

Turning 36

My birthday was July 24. It started beautifully, with a ring at the door and a bag of of fresh veggies hanging from the handle. I caught my friend Kenvin out of the corner of my eye and called out to him. Of course, he didn't want to disturb me, but truth is it was just what I needed. He said, "oh Brandi, I love you so much." and of course, I replied, "I love you, too!" Goodness is there anything better, richer than that kind of exchange?! The veggies were wonderful. Nourishing, beautiful, bright! I received many phone calls, and cards, and gifts. On saturday I spend the day with my family in Lindon. Eating, blowing bubbles, chatting, loving. I'm so blessed! By the way, also saw the latest Harry Potter flick. First of all, it is terrifying to be in a crowded movie theatre when you are immunosuppressed. I have to wear my mask. But more than terrifying is the realization that with your mask on there's no way to safely eat your popcorn and drink your drink. So the movie amounted to 3 hours of boring, terrifying, hunger-panging filler.

I have Gardening Angles. Have I mentioned this before? I don't often catch them in the act. But when I wake in the morning, some mornings, my garden has been weeded, new plants added, some new landscaping. It is so beautiful. I love a well tended garden, but it is simply something I can not do, too much bacteria in the soil. These are people who I have only met at the yoga retreat in Sundance this past April. People are so kind. So deeply kind. My heart bursts.

Cycle 6

This new cycle began July 30. It also marks the end of Doxorubicin, the bright-red, beautiful but highly toxic, anti-metabolite chemo therapy. Finished, check it off the list, done. I can never in my lifetime have any more of this drug. It will be replaced by weekly low-dose methotrexate. I hope this will be better? I also have only 5 more doses of PEG Asparaginase to go. Nothing will replace that one. When I'm done, in 10 weeks, I'm done. October hopefully.

Exercise

Well, I'm doing it. Across the street from my home I have a nice set of stairs to climb up and down. The avenues itself is an excellent walking obstacle course with uphills, downhills, uneven pavement, crazy gardening. After an excellent bit of bartering on my part, we bought a classic Schwin Airdyne, and I have a few one pound and 3 pound weights. At this point I'm trying to find my body again, and build some momentum. The stationary bike is very relaxing and motivating at the same time. Sometimes Randin and I walk to the local cemetery, look at it, and turn around back to our home. Sobering? Well, I never want to buried in a place like that so it doesn't really resonate deeply. It's more a thumb the nose gesture.

Mental State

I think I'm past the hopelessness. I don't seem to be dying. I seem to be tolerating. Could I be a cancer survivor?

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.

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.

Back in the Hospital Again

Apparently, I have a nasty bacteria (Gram Negative Bacteria) that will kill me if we don't kill it first. I feel fine, so I think we're on top of it. It makes me feel great that Sharon, the nurse who spotted my erratic fever on friday followed through and took the cultures that revealed the bacteria. And I thought it was just my nice woolen cap overheating my ears!

Even though I'm back in the hospital, my spirits are high and I'm feeling better. I decided to go ahead and have a feeding tube just to help me get those extra calories while I'm sleeping and to take the pressure off of worrying about food all the time. I'm a worrier. I can't say having a tube up my nose is the most comfortable thing, but it is a fashion statement of sorts. My whole appearance these days is a fashion statement: I'm a cancer patient. No hair, no eyebrows, no eyelashes, tube up the nose and looped over the ear, chubby steroid cheeks, geeky hat, swollen feet, no butt, chicken legs, tri-catheter. I've moved from despair to comedy. I just couldn't look much more ridiculous. My ideas about my outward appearance are certainly radicalizing. I am this new thing, and I most certainly am not.

In my search for myself in all this chemical induced haze I received some helpful advice from my yoga teacher Kalika. She said:

You my Dear are the teacher.
Listen Brandi,  Keep listening.  I know it's the hardest
time to be able to hear but you've got it.  Keep listening.
Slow down.  "Be" in nature.  All the things that make you Brandi.
Be Brandi.

Brandi is in my heart, and when I listen, I hear that she is very, very tired right now. Not just from the experience of this Leukemia and the chemo, but from her life lived up to the diagnosis. Previous to this much needed rest I packed three simultaneous lives in one. Brandi the director of Starfall.com. Brandi the yoga teacher. Brandi the wife of Randin Graves living in a remote village in the Australian Outback. I've been giving out, for a long time, but I haven't made much room for receiving. For listening.

All tied up in receiving is this terrified corner of my heart that never wants to be indebted. Indebtedness equates to weakness, vulnerability, and ultimately the risk of intimacy. Again, experiences I learned to avoid by mimicking my father. I'm not blaming Dad. These are the experiences I chose to value in order to protect myself. And they served me very well, made me strong and independent. Until now, when suddenly I was thrust into the flip-side, real world of dependence. I am humbled, I am humbled, I am humbled! I am grateful, I am grateful, I am grateful!

So my thoughts are, prior to this illness, I experienced the extremes of independence. During this illness I will experience the extremes of dependence. And then, I'll have the rest of my life to understand and navigate interdependence? And true intimacy?

P.S. I weighed in at 104 lbs today!

Something's Happening that Doesn't Suck

This is the Angel Card I drew while I was visiting my sister. These angel cards are eerily meaningful. Whether or not they are predictors, or if they just happen to give you the nudge you need when you need it—well, I guess it doesn't really matter. Crystal had the news I needed to hear, when I needed to hear it. My wonderful sister Kim framed this card for me. 

I have energy. Its not long, long lasting, but it is palpable. My strength is returning. Yesterday, while walking up an incline, I felt the smallest stirring in my glutes. I may get my butt back yet!

Yesterday Randin and I hired a chef to come a few nights a week to cook, (obviously), but also to instruct us. This woman, Dawn, has also experienced the terror of low, low weight. She's been to 85 and back, and so knows what I am up against. I really believe she can help me through my weight gain, to do it healthfully, and most importantly sustainably, intelligently, and lovingly.

Yesterday was also a chemo day. The doctors were surprised that my blood counts recovered enough to receive it. They tell me there is nothing I can do to effect my counts, that it is simply something that happens on its own. But I'm not sure. I'm not sure because so much has changed for me in the last few weeks. I'm eating for one. I'm not really depressed anymore, for another. 

Today I went to see the acupuncturist. It mellows me out. I'm so remarkably tense from my top of my head to my belly. I'm probably tense body wide to be truthful, but I feel the rigidity primarily in my upper body and jaw. I think it is because I am angry at my body right now. My heart is wrapped up and closed, and that includes my arms. (They often do the wrapping). 

I think I'm ready to open my heart again, and to trust my body again. To listen to my body. I must remember that this sickness is here to teach me something. It is using my body as the metaphor. I love metaphors. I love poetry. I love language. I love to examine and interpret, and share what I have learned with others. My eyes are opening. I no longer have them clenched shut.  I'm blinking and looking about like a newborn. And I'm just as hairless! More! 

Boredom

Here's where I am now: I'm tired of waiting to feel better, so I'm doing things anyway. I'm exercising anyway. I'm eating anyway. I'm washing the dishes anyway.  Dr. Asch seems to imply that I will and should be feeling better soon, that there is some latency from Consolidation I and the CNS phases that I need to shed. I admit to feeling a bit stronger, but again I think it has to do more with my do it anyway policy than anything else. I just can't imagine feeling better than this, when the schedule says chemo weekly? I may as well adjust to a body that is poisoned all the time.

Life has been awful and terrifying this past April/May. I stopped eating. Went to 85 pounds. Dr. Peterson said, "It's as if you are disappearing on us." The truth is I was. I had lost the desire to live. I checked myself into the hospital. Was threatened with a feeding tube. Please don't panic. I'm not in such a dark place as I was. But I was in a dark place, and touched a level of hopelessness I'd never experienced before:

Life is mundane. People's conversations are inane. Going anywhere and doing anything is pointless. Everything we do as humans is to stave off boredom another day.  Humans are hopelessly bored or boring. Why do any of us bother living, and why should I bother when it is so hard and I all I do is sleep and get poisoned?

I realized that a feeding tube would do nothing to inspire me to eat again. It wasn't food, it was my outlook. We went with the Mom plan. Mom pulled me from the hospital, took me home and happily force fed me for 3 days. I've never eaten so much pork. I swept the walk, it felt great to use my arms. I sat in the sunshine. I held mom's little dog. I let go of the terror.

Mom and I went for a drive to examine the changes in the neighborhood. My high school has doubled in size and Pleasant Grove is a construction zone! On the way home we ran into (very nearly literally), my sister Vicki, who had just found the perfect tree for her yard.

I went to Nephi and spent a sunday with my sister Kim and her family, little grand-kids, doing lovely little grand-kid things, such as showing off for great aunt Brandi while running through the sprinkler. I spoke with my Brother-in-Law Cory, who I know has seen this dark place, and in whose eyes and arms I knew I would find understanding and compassion. I watched my nephew and his wife cuddling on the grass and felt proud of them, and their beautiful family. I felt the joy working on and improving Dad's house brings to my sister. I felt the anticipation of a baby horse expected in just a few days. 

I enjoyed the surprise visit by Uncle Jerry and Aunt Pat (Dad's sister), and even let Uncle Jerry trim my fingernails.

I remembered I like little dill pickles.

The experience enlivened me. I still feel like our lives are hopeless attempts against boredom, but the quality of our attempts, what we choose to do to not feel bored, there's a magic there. Particularly if it builds relationship, to each other, to land, to animals.

I've been weeding my garden, some. It's full of grass.

Masked Identity

Today at the local Whole Foods, while shopping for quick sushi (cooked varieties only! don't worry Dr. Asch!), I startled a little boy. Startled, intrigued, fascinated, I don't know. Actually it wasn't me it was my mask. He stared, and then he got his brother to stare along with him. Finally I said, "You are probably wondering why I am wearing this mask. (he nodded.) I'm wearing it because I have a disease, called leukemia."

Suddenly he moved away from me, behind his mother's legs. I said, "Oh no, no. You don't need to be afraid of me. I can not give you leukemia. Its me who has to protect myself from you! You see I can get sick really easily, when I am out and about I wear this mask to protect myself."

Kids are so good. They at least look for the reasons why, and hem and haw until they get at them. Adults just stare, unless they have a good reasonable, mature cause to ask. Apparently the two TV news spots have been sufficient. On the way out of the store a patron walking in asked, "Aren't you the woman that was on the news last night." I affirmed. As it turns out, his wife has cancer, too. I asked the type (cancers and their treatments are so specific, asking the kind gives insight into their treatment). And we said, good luck, and went separate ways. Compassion. One of the best side effects of Leukemia.

I'm thinking about making T-Shirts that say, Its okay. I have leukemia. Feel free to ask. I'm nice except when on Steroids.

I suppose there's no hope for stardom, since no one will recognize me without a mask on my face. I could be like a super hero in disguise (who writes and loves people and who has very little energy beyond that) Who wears a mask over her nose and mouth so she can see and hear things more clearly without being fixated on what she might say, or distracted by some new diversion. Seeing and Listening are both very good means of touching the subtle.

In Other News

Oddly, the first word of the news clip is pornography. Once the story ends, if you don't stop the player it keeps loading in news story after news story. I think this is very rude, but haven't figured out how to prevent it.

And, my alma mater cheersquad won a national award!

Strength

You might be wondering, well, what's going on with Brandi? Why isn't she writing and video making and all that stuff anymore? The truth is I never knew I could be so tired, or weak, or overwhelmed, or scared. Yes, its true, I've been having a hard time. Take a gal whose energy level is a ten, and reduce it to -2.5 and well, she starts to doubt. My life is a cycle of pills and tests to take, appointments to make, chemos to process.

I have been blessed with a very strong body, but in the course of my chemotherapy my strong body has become emaciated. I'm down to my essence. I ask: can I really do this? I get winded and my heart races going up stairs. I weigh 90 pounds. My faith is shaken, because my body is not strong anymore. I'm a featherweight.

I have finished Consolidation I and the Central Nervous System portions of my treatment and am currently in the midst of my week break before beginning Consolidation II, this thursday. Nothing has gone wrong. The protocol is simply aggressive and relentless. I remember at the outset meeting the two gents who are ahead of me. What I saw when I met them terrified me. I said to myself, "When I am there, I will not be like that." While it is true my complaints and despair are not like theirs, I am in my own valley of shadow and confusion. 

Consolidation I began in January and was composed of three, three week cycles (A, B, and C), each progressively more toxic and each featuring different types and combinations of chemotherapy over two weeks with a week break in between. By the end of Consolidation IC I was spending most of my day in bed, neutropenic, appetiteless, and nauseated, but certain this was as bad as it could get.

Let me tell you about the Central Nervous System treatment: 

• Day one chemotherapy (Doxurubicin, Vincristine)
• 8 doses of radiation to the brain
• 4 intrathecal doses of chemotherapy (Methotrexate, Cytarabine, Hydrocortisone)
• Bi-weekly chemo PEG Asparaginase 
  
• 2 weeks oral 6MP
• roughly 8 days dexamethasone (a steroid).  
  

I despise writing about this. By doing so I reveal my weakness and how I am feeling sorry for myself. I know many cancer patients with much longer lists and scarier possible outcomes. I know attitude is everything. And yet, this is what I have endured, when I believed I had already hit bottom. I confess, I don't think I could have handled even a fraction more! I'm not sure I've handled it yet! Over the past two weeks I thought to myself, "Can't I just sleep until this is over? One way or another I want this over!" I think this is a veiled way of saying, "I quit." But I can't quit. There is no out of this reality, only through.

What I am facing is so much more than cancer and chemo side effects. I'm dealing with myself, at my core. Who is experiencing this? Who will survive it? 

What I must accept is so far in this battle I've been hiding behind my strong body as if it were a fortress and have neglected stabilizing and fortifying my soul. Now that my fortress has crumbled, well, I'm lost, naked, bony, pale, and exposed. Ew, like Darth Vadar, or the Wizard of Oz. 

Slow News Day

• KSL Channel 5 News


• Desert News


• Salt Lake Tribune

The Strangest Thing

Today a total stranger said I was beautiful. This hasn't happened to me in years. This may never have happened to me. She said, "You probably hear this all the time, but you are so beautiful."

Wow. What a thing to hear.

Sure, my family tells me this. And my husband too, of course. And I'm sure they mean it! But the people you love are always beautiful. I've never considered myself empirically pretty.

This cancer stuff is really working for me.

Patient

pa⋅tient
n. a person who is under medical care or treatment.
adj. bearing provocation, annoyance, misfortune, delay, hardship, pain, etc., with fortitude and calm and without complaint, anger, or the like.

Okay. After this week I am officially over it. I am tired of taking pills x number of times a day and at certain hours; going to doctor's appointments and waiting; my body changing and worrying about every little change and what it might mean and if it is permanent; chemo therapy; the threat of hospital stays, and therefore hospital food; looking into the future and seeing more doctor's appointments, more chemo, more prescriptions. Bah. I want this to be over. I am not patient, so I don't want to be a patient.

I keep wondering how it is children are so successful at overcoming ALL and adults less so. My suspicion is children don't have calendars, nor do they read and understand the entire protocol, nor do they have much previous experience to compare this one against. For the next two years I will be on chemo therapy for two weeks and off for one. I'm not sure, maybe the doses lessen. Two weeks on, one week off, for two years. Oh, my, God. It has been 63 days since I was diagnosed. I'm still much closer to my old life and schedule than I am to this one. I'm clinging to a life where I didn't have to be patient. This is real, I can not go back. Not ever. I am a patient. I will have to cultivate fortitude and calm to offset my anger and complaint.

Fortitude. This word works well in hymns and scriptures, but what does it even mean? Dictionary please: Courage in pain or adversity. In other words I'm scared, but as there is no out, I will do it anyway.

What am I afraid of? I could die. I might die. I will die, someday. My life is currently happening, even if it is cancer flavored. Is death the thing I'm really worried about? Not so much, I think truly it is change. I will change through this process—but into what? What will I no longer be able to do? This is what I genuinely fear.

Calm. Can I be calm? Is mine a process of fighting to stay alive, or of accepting the way my life is now? Is this a fight or a surrender? 

What will I become after these two years? What new things will I be able to do? Maybe I'll be able to distinguish when to fight or when to surrender.

I am a patient (the surrender).
I can become patient (the fight).

Quick Update: Consolidation 1B

I'm back in the hospital, but just for 24 hours. I'm receiving a new type of chemo this week which may or may not make me nauseated. So far I've been lucky. Let's pray my luck holds, shall we? This chemo will be given as an outpatient, for 8 days, over two weeks (I get a 3 day break in between). And of course this will be in tandem with the sexy oral chemo 6MP. I'm not very happy to be back at the hospital, but I love the nursing and doctor staff here so much, it makes it tolerable. Plus there is indoor walking space here.

In other news, I can't believe how much better I feel since going alkaline. I'm a total convert. I wonder, if there is something I can do to bring FOOD to the hospital for the other patients. And of course the big question is, can they learn to love kale for breakfast? I sure do!

Overdue Report!

Song Bird

Speaking of bliss (and of course grace) some of you have asked for the song sung "Divine" by Sasha Earle at the end of the Silly Walk video. You can buy her album from her Myspace page—and hear the song there. Or, download this version of the song with instrumentation and vocals added by Randin.

By the way, someone put a very annoying song in one of the comments on Sasha's page, and it plays over her music, so scroll down and stop it from playing. Myspace. Bleh. By the way Sasha, love the "Kul-cha" and the very sassy 1920 beaded head piece!

Yes! Yes! Yes!

You never know just what will be the thing to change your mood. I never expected that a day in the hospital, undergoing a CT scan, a lumbar puncture with Chemotherapy, and a bone marrow sample would help put things back in perspective but, it did. I'm doing well, and I am very hopeful for the future. The LDS Hospital Blood and Bone Marrow rocks. I love my team! If you ever have leukemia, go here!

But the kicker was the package I found on my doorstep on returning home. My friend Jennifer Laffranchini Hane makes chocolate, or so I had heard. This woman does not make chocolate, she makes the most incredible shakti-packed morsels of bliss I have ever consumed. These items are magical, medicinal wonders. 

What ever you are doing, stop now. Order chocolates from Raw Chocolatier! 

New Year's Update