Necrosis? Yes.

The results of the MRI are in. I have necrosis in my hips, and a 25% compression fracture at L4. The next steps are to find out how to modify the Dana Farber Protocol to prevent any more damage from steroids, and to involve an orthopedic surgeon in determining how to repair the damage that has taken place. Yes, I may require hip replacement surgery. The irony? The past few days I've noticed significant pain reduction.

I'm upset, I suppose. A little sick to my stomach. I think it is the word Necrosis—it is gross. The main vein in the hip just didn't supply it enough blood and now part of it is dead. Part of me, inside me is dead. I'm part dead. A zombie? Oh well. Had I not taken this treatment I would be all dead. Everything I get beyond leukemia is gravy, right?

I had a very special pal in Arnhem Land. She suddenly took ill and died in a matter of months. As she deteriorated, I found it harder and harder to let her go. I would say things to try to convince her to stay. I'd say, "Don't forget Gunga!" and she'd answer, "Gungawu! Gungawu!" (Gunga is the plant fiber we collected and weaved into baskets). I thought she was calling out in defiance of death. I understand now she was lamenting something she would miss.

What is happening now isn't life threatening. It is quality of life threatening. Nonetheless, I've been thinking about death, and realizing the hard part about dying is all the things of beauty and joy, particular to your unique life, you will miss, that will end with you. I love to write, I love to make things. I love my home. I love Starfall, and my Starfall family. I love the promise of plans for the future—even simple ones like upcoming farmer's markets and promising to use less plastic. And particularly I love the life I've created with my beloved husband Randin.

I wrote previously that death is another word for the unknown. And yet death is the only certainty. Death will happen, assuredly.

Sigh. I'm morbid today. Sorry. There's something dead inside me.

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?