Friday, August 28, 2009
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 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!
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?
Saturday, August 1, 2009
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.
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.
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.
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.
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.
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?