Weekend Update

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Thanks to everyone who wrote emails and comments of support regarding my latest update.

I don't blame the nurses. It is obvious to me that they care deeply about their patients and do their best under complicated pressures. If I had been clearer about my needs from the beginning, I'm sure things would have gone differently. Live and learn... I did leave messages for both my regular chemo nurse (who wasn't in that day) and the nurse in charge of my clinical trial explaining what was difficult for me about the experience and how we might remedy it in the future. (I suggested we save the conversation for the phone if we can't get a room. If space is indeed the issue, I offered to write letters to whomever might be in a position to change that.) About my side effects, thanks also for the insight and suggestions. Though I'm sorry to know my experience is common, I'm glad to understand that there are things I can do about it.

I am feeling better. Yesterday (Monday) was the first day I could say I felt more like myself than not. Weak, weird in the gut, but not terrible. I hate that I have to go through it all over again on Friday, but for now, all is well.

I will probably lose my hair in the next week or so, but in the meantime it was getting too long. On Saturday evening, my brother A~ (social worker by day, kitchen stool beauty salon superhero by night) gave me a trim.

Saturday night, home, showered, and receiving my daily dose of Millie-love.

J~ gets some too.

Sunday night: a jewelry-making date with my Mom.

Millie love for everybody!

Down

To celebrate the one-week anniversary of my first chemotherapy treatment, I visited the cancer center today to be weighed (down three pounds) and have my blood counts checked (also down).

To discuss these findings, and my experience and concerns about side effects, I was ushered into a space the size of a modest living room lined shoulder to shoulder with tired and sickly looking folks in reclining chairs, IV poles at their sides.

"I'm not getting chemo today," I said, hesitating at the door.

"I know," said the nurse's aide, pointing to a single chair at the end of the gauntlet. "You can sit there."

I tried to disregard the audience as my vitals were taken, as a nurse, sitting in an unoccupied chemo chair, told me I had only about 400 white blood cells in my entire body and detailed the precautions I need to take to avoid infection.

With a second nurse, I tried to discretely express my concerns about some digestive challenges I've been having. I was becoming increasingly uncomfortable, struggling to explain but not making much progress. "How do you know it's not your colitis?" she asked. With that word, I hit my limit. I'm not sure I know what colitis is, but whatever trouble I've had in the past has been remedied entirely by changes in diet. The problems I'm having now are most definitely chemo-related.

I don't know why I was so uncomfortable in that environment when I can say in this public forum without hesitation or hedging that I have inflammation from my mouth and nasal passages down through my entire digestive tract, including, in one instance, enough rectal bleeding that, though modest in the scheme of things, nonetheless caused me to feel alarm.

It must have something to do with the word colitis. I guess I just don't like that word.

Nor did I like that room, a room I did not know existed, I'll call it the Economy Class Chemo Lounge, where friends and family who might come along to lend support would have to stand at your feet, or wait in the hall.

There is another group chemo room, I've seen it, where there are acres of space between the chairs, a veritable lawn of white linoleum tile. Why is one room so spacious and this one so cramped? I have no idea.

"You know, I just realized, I don't feel comfortable talking about this in front of all these people," I told the nurse.

"I'm sorry," she said. But she did not offer another venue. And so, before long, I wrapped up the conversation and took my leave.

I cried for a long time in the car, gut-wracking sobs like I haven't had yet in all the time since my diagnosis, about myself but also about all those people in that room, alone with their books and magazines, how all of us are suffering and none of us know, not really, if this grueling treatment is actually going to work. I have a growing worry about my other breast. What if, after this hard six months is behind me, they find cancer in my other breast? Then what? And what about the bleeding, hell, call it colitis if you like, but what about it? What if it comes back worse next time around? What else could happen? I used to think that was a rhetorical question. Now I know it is not.

Flow

Today I am thinking about water. Partly because while on chemo, I'm supposed to drink a lot of it. I drink in order to flush the drugs out of my system. On the breast cancer support forums, over and over I read urgent messages about staying hydrated in order to keep myself regular. But also I'm thinking of sweat and tears and tides and rivers, snow and rain and evaporation and condensation. Such a precious, vital and versatile substance, contained in a glass, slipped down a throat, permeating cell walls and moss beds and ancient underground earth.

Funny how we value gold and jewels and coal and oil so much that we damage our water supply in order to get to these precious things. We can live without any of these things, but not without water. We are not bad or stupid, we humans, we are confused, wayward. We are sick. We have a lot to learn.

The connection between cancer and environmental pollutants has not escaped me. The toxicity of chemotherapy, modern medicine's best answer to this unanswerable question, is a cruel irony.

Before cancer, I was aware of these problems in society and had hoped that by being vigilant, I could keep myself clean and pure, hold myself apart from the diseases of the world. Of course this is not possible. I am of the world, and the world, with all it's imperfection, is me. And so, I must be gentle with myself, gentle with all of us. We are doing our best. And we are all vulnerable.

And so I invite you to join me in being gentle with yourself in all the ways that you feel you are not enough, not doing enough, not fixing the problems fast enough. Look around you at all your kin. We are one, all in the same watery flow.

I'll drink to that.

Snow Day

Chemo is No Joke

It feels like I'm underwater. Every motion, most every thought, takes a little more effort to complete.

At the grocery store today, I walked into the men's room by mistake. I stared at a urinal for several seconds, perplexed, before realizing my error. Luckily, there were no witnesses.

My scalp is achy and tingling. Though there are no physical manifestations yet, I can already feel my hair letting go. My stomach, my throat, my entire digestive tract feels wrong.

When I sit down on the couch, the idea of getting up again seems like a stretch. All this, after just one dose!

But there is a flip-side. For instance, at four this morning, I found myself lying awake, eyes wide, longing to play my guitar. I have not picked up the guitar in months, but this morning in the dark, though my body was heavy with fatigue, I was anxious to get to it.

I didn't. Not today anyway.

Instead I did this:

I joined J~ in his early morning-yoga routine. It's been a very long time; my guitar is less dusty than my early-morning yoga practice. Though my body still felt weighted, I was surprised to find reliable strength in my limbs.

  

After Jim left for work, I did a little work at the computer and ate a strategically orchestrated breakfast, exactly what my body seemed to be asking for, and exactly what my mind believed would turn my chemo-rusted digestive gears: cabbage, lettuce, avocado, broad beans, spicy kimchee, fresh-squeezed lemon, cracked pepper, and olive oil. (It tasted good, but it didn't work.)

 

At the pool soon after, I discovered that the aforementioned "reliable strength in my limbs" had vanished. I was leaden, but at least I was staying afloat.

After a shower and a change of clothes (I've been wearing the same outfit since I got home from chemo), it was time to drive brother D~ to the airport. We met another brother, A~, for lunch along the way.

D~'s Thanksgiving visit turned into an extended distance-working/cancer-helping stay. His presence was a pleasure. He will be missed.

California, keep him safe.

With a blizzard on the way tonight, I ran some essential errands and headed home, where I taught my stepson how to build a fire in the wood stove, paid some bills, kissed my husband, ate some dinner, talked on the phone, and updated the blog.

I'll admit it, dinner was hard. I wanted to sink into the couch and never get up. But my stomach felt like an acid black hole and I was afraid I wouldn't feel good for long if I didn't do something about it.

Luckily, Millie got her walks today from friends and neighbors, and J~ got a nap before heading off to the gym himself. If all goes according to hopes, there will be a snow-day for all of us tomorrow, and he will be around and energized so I can rest.

In the meantime, I will go once again to bed and hope tomorrow feels just a little bit less chemo-icky.

 

Good night all!

Things That Are Getting Me Through

What a strange thing to be poisoned, systematically poisoned, to be feeling sick while knowing that my immune system has no defense for this. How strange, also, to acknowledge that soon, as I begin to feel better, I will belly up to the chemo-bar and take another dose. And then another. Over and over and over, sixteen times in twenty weeks. And after that, there's radiation...

And another thing that's difficult to fathom; that so so many people have been through this ahead of me, without the aid of modern anti-nausea meds that make it possible to eat and sleep and function in a somewhat normal way. And many have been through it more than once. And many died in the process. And many still do.

My mind floats to all the suffering we, the family of humanity, endure. Trauma, abuse, violence, disease... Everyone has their personal trial and tribulation. I don't mean to be depressing; I'm not feeling depressed. I feel lucky, actually. Not lucky to have cancer, but lucky to feel closer to the core, closer to compassion. And lucky, especially, for all the blessings I do have.

Such as...

Heartfelt messages of love and support from friends and readers. I savor them every day.

Cuties who like each other and like me too. (Here are two: my brother, D, and Millie the pooch.)

 An appetite and the ability to cook. (Today's lunch: curried pinto beans with onion, garlic, and summer squash, steamed broccoli rabe with balsamic vinegar, and marinated portabello mushroom. Oh, and some sliced mango for dessert.) 

Beauty and the mental space to appreciate it.

Time and energy on a Sunday evening to walk the dog with my beloved. And this land preserve nearby, one of my favorite evening-walk venues.

One Down, Fifteen to Go

Chemo day was wonderful and horrible. I got a swim in first, and then drove to the hospital with J~ and my brother D~. I sang to myself in the car, just a quiet, made-up melody, under the engine roar, that helped me relax my shoulders and fill my lungs, and communicate my heart's sentiments to the rest of my body: I'm sorry I have to do this. I'm so sorry I have to do this to you, to me, to us. 

The festivities took place in a private room with B~, a nurse I've already come to like and trust, and I was supported by a posse of men. "I like this," said B~, "most women have women come along with them. It's nice to see a group of men." I agree.

With me from beginning to end, I had J~, who held my hand, and my brother, D~, who took pictures and cracked jokes. My brother A~, who works down the street from the hospital, dropped by on a lunch break. I read them tweets from "Shit My Dad Says," which is like quoting our own Dad, only twenty times more vulgar and blatantly self-centered. So of course we laughed a lot. M~ (I talked about him here) stopped by to say hi and hug me between duties around the hospital, which made me feel like a superstar. And one of my regular RC co-counselors, C~, spent the first couple hours with us too.

In normal circumstances, C~ and I trade equal time as counselor and client, listening and caring about each other confidentially, and encouraging each other's emotional release. We don't have a typical social relationship - we don't go to the movies together and we won't start a business together either. But the connection is important and intimate. It's a sanctuary and a valuable tool for improving and expanding the limits of our lives. On this day, C~ did a lot of smiling at me and joking with B~ and held my legs in his lap. At one point, when the saline was in and chemo was yet to come, I kicked J~ and D~ out of the room so I could cry uninhibitedly, express my fears and grief and the feeling like submitting to chemotherapy is a big mistake. But how can I deny the statistics? Sixty-five out of 100 women with my profile who don't do chemo or hormone therapy have relapses within 10 years. Though there are avenues that show promise, I can find no solid statistics on what factors impact the other, lucky thirty-five. With so little information to go on, I must concede that not doing chemo would be a bigger mistake.

The choices suck.

So I did it. And felt basically fine, though perhaps a little woozy-headed toward the end, throughout the hours of infusions.

But shortly thereafter, the nausea started to creep in. The long car ride home required careful concentration on the road, controlled breathing, and as little talking as possible. I never did throw up, but I was pretty miserable for the entire evening. "How do you feel?" someone inquired as I lay on the couch with a puke bucket securely by my side, washcloth on my forehead. I had to think about it for a second. It's not like any illness I've ever experienced in the past. And then it hit me.

"I feel like I've been poisoned."

I took extra meds, put myself to bed early, and managed to sleep, for the most part – thanks to the drugs, certainly – through the night.

Today, I still feel kind of poisoned. The symptoms remind me of the flu - nausea and a low-grade fever, though there is no fever. It just feels like it. I did manage to get to the gym again this morning. I was nauseous getting into the pool, and nauseous coming out. But while I was in the water, it was the best I've felt all day.

Pictures by D~, see below

Bonus post today – see even further below...

Adriomycin begins...

Passing time with my bro while J and C go off to counsel.

On to the next drug, Cytoxan. Still feeling okay.

Me and the fabulous nurse B~ (with her permission, of course).

The miracle anti-nausea drug. Three pills, I'm told, cost over $300. I'm so glad I have good insurance, I got six of them, plus all the rest, for $25.

Home again, and feeling like crap.