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?