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.

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?