This is your brain on chemo drugs...any questions?

It's been awhile. Things have certainly been happening. Big things, and little things, too.

Cancer is full of gifts; there is such a universe of caring and kindness during the treatment, and so much pain and confusion and despair that everyone involved in the process works to resolve.
But what happens after the treatment rolls to a close? Not many people talk about this, or maybe they do, and it is too hard to hear during the crisis.

Once I began to feel physically better, more like my former self, the more I began to notice the cognitive effects of the whole process: chemo brain.  I've never experienced anything so frustrating, or real.

As a hard-working college professor, I have some baselines in place: how long it takes to learn all my students' names, how efficiently I respond to their emails and questions, giving grades and feedback, and being sure each student feels like I'm paying attention. Can I make spontaneous leaps in sharing content because I know it so well? Do I support my colleagues as a department chair, finishing the myriad of tasks efficiently?  I have the before-cancer baseline, and then, the spring semester of 2016  2015 (see?) benchmark revision: not good, sometimes shambolic, especially learning names. And it goes beyond my work; gradually it became a daily struggle to think of words, names, why I came into a room, what I meant to do next. My typing is scrambly and I burn myself on the hot stove, putting me somewhere between being geriatric, and a toddler.

Now couple this with the opportunity to spend a year on a breathtakingly exciting project, working with ed-tech pioneers, a project that rallies all of my energies, instincts, experiences, and interests. Imagine the fear of diving into a project like this, not knowing if your trusty brain would be there to support you.

I decided to do research, and approach my doctors with ideas from only the best sources: Mayo Clinic and MD Anderson Center. For the first time, my cancer treatment became a bit wacky. A call to the oncologist's office turned into over-the-phone-nurse-advice resembling a game of "Telephone" from childhood. I started all over again, and booked an appointment (more co-pay) to discuss this in person. The Oncology NP thought it was worth a shot to try a medication. The next day, when I saw my internist, she seemed shocked that the NP prescribed that drug, and implied that it would probably make my head explode (she didn't use that exact term, but...) and she thought a different drug would be better. I filled that prescription, too, only to have her nurse call two days later and say that it might interfere with the Tamoxifen I take to prevent a recurrence of cancer. She put me on a drug similar to the one the NP put me on in the first place.  So far, my head has not exploded, and the meds may be making things considerably better.

The new job is so filled with learning curves, every day is a winding road, and sometimes my brain responds to this and cooperates with stored knowledge and muscle memory. Everyone here (well, there - they are in Portland, I'm in VA) is younger than I am, so I've cultivated the sage-like slow answer (madly scrambling in my head for thoughts) and other times, it seems I can coast a bit on my instincts. I do think that jumping into a new world, given the past year, is pushing my brain back into shape, along with medication. I'm loving the adrenaline of challenge. Maybe the adrenaline, along with the prescription, will bring me to an even newer baseline, one well ahead of my pre-cancer self.

I'll keep you posted.

Therapy dropout....

I tried. I really did. But I had no faith. The lymphedema therapist was brand-spanking new. Super friendly; a little school-marmish. She had to do everything three times to get it right. Which is fine if you are an intern, or trainee. Unfortunately, she has been turned loose on patients with no visible supervision.

Both times she wrapped my arm in the bulky layer of bandages, I was awoken in the night by stabbing pain, purple fingers, red blotches. Her main training has been on arms, and so she wanted to treat my arm. But my arm is not the problem - it's my breast, and around it, which is more rare. It reminded me of an old Bill Cosby routine about a football player hit in the groin while on TV, and he is told he has to grab his head, instead, which they bandage.

So I talked to my oncologist and he gave me enough of an out to quit. Today, I went to my much loved and trusted massage therapist, Zaida,  and told her the story. She worked on me for 90 minutes, in her focused, intuitive way, and the swelling was already down when I left. Zaida has gifts that go hand in hand with her deep faith, and I've never known a healer like her.

Having been the compliant patient throughout, I took it hard that I didn't ace lymphedema therapy. But I have learned lessons here. Instinct matters. Trusting myself. Combining the allopathic and the wholistic/integrative world is positive. I do believe there are many different ways to keep on healing and strengthening my body, if I focus on making them happen.

I even had a green juice today.

What's next? (Again.)

When I was growing up, my mother often told stories about how colicky my oldest brother, her first child, was, and how, had someone come to the door certain nights to take him, she would have handed him over. (She didn't, and he outgrew it, and she had three more children, so I guess it was possibly worse in hindsight.)  When I became pregnant, pretty much my only big fear was that my child would have colic. So of course he did, and I survived it, too. (I didn't have three more, but that's a different story...)

My biggest fear in having breast cancer surgery was that I would get lymphedema. I know, it sounds ridiculous, given the other horrendous possibilities, but there it is. I dreaded the idea of it, and I watched for it. Then at some point, I stopped worrying - lots of other bits and bobs came up to distract, and I thought I had dodged the whack-a-mole mallet on this one.

So recently. when I went to see my radiation oncologist for a follow up, and he told me the swelling in my left breast was lymphedema, I felt blindsided. Wait - I don't have a giant marshmallow arm. My skin is not rupturing. No. Nope. Not. Kindly, Christy the nurse walked me over to the physical therapy office and helped me set up my first appointment. Surreal things were said: I would have "bandaging" and "garments" which sounds like both Egyptian and Mormon religious rituals. But there is no getting around it by disassociating: what's next is physical therapy for lymphedema, which is a big, ugly word for swelling somewhere because of blocked lymph flow in a body. My body.

After a few missteps in making time for treatment again, I went to my first appointment yesterday. My therapist is new and well meaning. She measured me up and down my arms and confusingly described the coming treatment. There will be massage (good) and big bulky bandaging, briefly (bad) and spandex sleeves, which I can get in black, hot pink, and leopard, according to my internet search. None of this is a big deal. Truly not. So why did I sit there nearly having a panic attack about the whole lymphedema mishegas?

Because, for the first time,  I started to feel like I had something wrong with me. Bear with me. I know that I spent last year in aggressive treatment for cancer, and it should be transparently evident that I have something wrong with me. But, honestly, I never thought I did. I thought it was obstacles, and hurdles, and hard work, and I put my shoulder into it and did it, as we do. I always thought I would go back to being me after, with weirder hair, but me.

This diagnosis made me wonder if, should I decide to, I could up and train for a 100 mile bike race (as I did, twice) or an 8K run (did) EVER AGAIN.  And I'm not ready to think of myself that way yet, as someone who could not do that. Do what she wanted to with her body, if she chose to.

So I did what any panicking woman should do: I went to a yoga class.

The World is Too Much With Us...

I may teach English, but I don't quote Wordsworth much; nonetheless, this line keeps popping into my head. The reasons have nothing to do with what this William meant. Or at least not so much.

It is in my head because I'm feeling too much of the world, too much of the sorrows and sadnesses, so much loss and death and hurt. My dear friend's brain tumor has taken her away; except for the occasional smile, she is lost. I can hold her hand and talk to her, but she is no longer there. A steady and spiritual woman, she comforted me over the years far more than I comforted her, and now the roles are reversed; when she seems anxious and confused, I can calm her. But I cannot calm myself.

Maybe the "getting and spending" part is about this, the realization that the quotidian slog of the profession means we don't say "I love you" enough to friends, or go out for a fun, gossipy lunch of laughter and forgetting. We don't push to enjoy the connected moments like we push for other things we think mean more, the success things. This is not a terribly original complaint, but now it is so evident, in every waking minute, suspended in the air like those four acres of cobwebs in Delaware. Loss is miasmic: personal, associational, flooding the media with tales of terrorists and terror.

This sounds despairing, but truly it is the opposite. I'm so flooded with daily gratitude I practically slosh: my friend has excellent care, as does a friend's brother who is in hospice. They have loving family and friends. I have loving family and friends who got me through some terrible times, frightening times. The comfort lies in knowing how much it helped, so I can possibly help now, choosing not to lay waste my powers.

Feeling is healing...

Two surgeries and then radiation for breast cancer left me with large areas of numbness on my left side, in my arm, armpit and shoulder - nerve damage from cutting and zapping. This is strange to live with, but not hugely disruptive until recently, when some of the feeling has started to come back. Sometimes it is almost painful, a waking up - what the cancer world calls "zingers"  -  like small electrical shocks dancing up and down my arm or shoulder. Sometimes it is almost a Charley-horse: a cramping, or spasm, like after you've mucked out a dozen stalls in a barn, or carried tons of book boxes in a move. Distracting, but not unwanted, and it serves as a reminder that I am healing, coming back to a new normal, to a new life. Feeling is healing.

This week, I realized the same was happening, being married again. When my late husband died young and very suddenly of a heart attack, it was like an amputation of love, a massive severing of nerves and feeling.  I did, eventually, for survival, go completely numb to the intricacies of intimacy with someone so beloved, someone with whom all the joys and pleasures of coupling seems endless, but clearly isn't. Luckily, I soon had a child and found rich fulfillment in the kind of love we can and do grow with our beautiful beings, these lovely incarnations who deserve the lavish outpourings of our hearts and minds. Not the same, but a gift.

Now I am married to my dear husband, my mate, the feeder of my heart and soul, and I feel the numbness quickly abating, the nerve endings knitting up and healing after so long. It isn't that I didn't begin by loving him, almost from the start, but now, living in a true marriage of two, I feel the tingles of deep intimacy, the joy and laughter, with the sensation of truly being known and cherished that comes in this kind of pairing. I once told a friend that I delight in marriage because it is like being in a private and exclusive club of just two members. I feel those zingers of intimacy, the tingles of deep love - the joy of being in that club of two. Feeling is healing.

Eat the peanut brittle...

My friend has a brain tumor. This happened: she worked incredibly hard, innovatively, teaching math in classrooms and online, mastering instructional design and technology, gathering data and perfecting what she did, until she could show that students can learn math online, often better than in the classroom. She chaired committees with intense organization and productivity. She took on a five year project with me that influenced the college's re-accreditation - you know, the ones that wake you up at 3am, heart pounding - and propped me up when we had little idea of how to go on, or tell unpopular truths in changing a culture.

She did all this for years and years, also supporting and caring for a disabled husband, a mother with Parkinson's, a daughter with mental illness challenges, and her own bad knees. In mid-December, at the end of the fall semester, she officially retired, seeking the rest and reward that is meant to bring. On December 16th, we gave her the small luncheon she requested instead of a large party, and gifted her with bags of art supplies; she is a math teacher who paints and draws beautifully. Last weekend, she was admitted to ICU with a large tumor, causing blood to accumulate on her brain.

Getting this news on Monday made me feel worse than I had felt all throughout my cancer adventure. I never once asked "why me?" but this has me screaming "why her?" I don't know what is going to happen next, as if I ever did, but something did happen.

My dear friend Liza sent us back from North Carolina with the Christmas gift of the most delicious homemade peanut brittle. I ate a few pieces when we got home and thought, whoa - that is just too good. I'm going to begin this new year with some restraint, some constraint (those "ain't" words...) and ration out that peanut brittle. Something that good needs to be controlled.

Monday, after hearing about my friend's hospitalization, I ate the peanut brittle. A few pieces; not all. But I gave myself permission to have that pleasure, a pleasure given by another friend. This is the only possible lesson - enjoy all the good you have, especially the good that is a loving gift, because the time comes when you can't, and you don't know when that time will be. This lesson so often needs retelling. Eat the peanut brittle.