Hitting the Wall

Thank you Amy and Olivia! You made me cry, which is a good thing.

"If you had cancer in the sixteen hundreds, they would have bled you," J~ said to me a week or two ago. "They believed cancer was an excess of black bile." He was reading The Emperor of All Maladies: A Biography of Cancer.  His tone conveyed amusement, or perhaps relief that we're not in such barbaric times, but I felt none of that.

I felt, instead, the weight of the future, when new knowledge casts today's approach in a similar light. If I'm lucky enough to live a long life, I expected I'd have to contend with that.

I just didn't expect to have to contend with it now.

Two days ago it was all over the news: a new study shows that if breast cancer is in the lymph nodes, it doesn't necessarily support your future health to remove them. Lymph nodes are an important part of the immune system, after all.

This study points to a paradigm shift in cancer treatment: getting all the cancer out surgically is less important than once thought.

Hearing this latest development, I recalled how I imagined telling the surgeon, "Just take the cancerous nodes, leave the rest." I knew she would not have been okay with that. I pictured her shaking her head, smiling sadly at me. I would have felt foolish to even suggest it. If only we'd known. Though this study addresses cancers less advanced than mine, there could have at least been a conversation, a possibility... But what can be done? We all make the best decisions we can with the information we have at the time.

Anyway, it's chemo that's got my attention now, and these last few days, I would be dishonest if I didn't tell you, it's been really really hard. I feel twisted and squeezed from the inside. It's difficult to stand upright, a strain to focus my eyes. Everything in me, every cell says stop this poisoning. It's killing me. It's suffocating me. I cannot endure it.

The thought of another cycle leaves me whimpering.

From what I hear, many cancer patients describe their chemotherapy side effects as "manageable." What does that mean? I cannot fathom...

With the latest news, all my doubts rise to the surface. How long will it be until we know that chemotherapy is barbaric too? There must be a better way. There will be a better way.

J~ stayed home from work to be with me today. As I write, he is cleaning the kitchen. Next, I will shower and dress and we'll go out with the dog. As my friend K says about her daily run, "fresh air and forward motion." That's all there is. Get through today.

The Law of Averages

1. My stomach is a mess.
2. No sugar-coating, it's not just my stomach. I feel terrible.
3. My car broke down in my neighbor's driveway this morning.
4. Millie's line for outdoor romping broke today too.
5. And just now I heard via email that somehow, presumably by mistake, all the water was drained from the pool last night. It will take days to refill.

On the other hand:
1. An owl in the backyard this morning. (I stand corrected - it was a red-tailed hawk.)
2. Walked twice, morning and afternoon, with Millie and friends.
3. K and G brought groceries over, kissed Millie, hugged me.
4. A knot in Millie's line has rendered it at least temporarily functional.
5. TWO care packages in the mail today. Thank you R, thank you C!

PS. It's time to admit it: I've uploaded videos to YouTube. So far they're almost exclusively short-short poor-quality videos of Millie as a puppy. But you're welcome to look at them. Cuteness cannot be overrated.

Daily?

I'm sure it doesn't make sense to enforce any new disciplines right now, but I'll admit, I've been thinking about making this a daily practice, this blogging thing. No promises. Just thinking about it. It seems to do me good...

Savory soup for breakfast from dear friend N: spinach, tofu and sesame, plus a wad of sour pickled red cabbage from the fridge, to enliven my taste buds.

I'm in the thick of the chemo-mire today. Foods taste off, my stomach feels funky, energy is low. Luckily, I was blessed with visitors and phone calls which helped pass the time. And though food didn't exactly go down easy, at least it went down, and it was beautiful to look at.

Later: onion, potato, spinach, mushroom, ketchup - whatever it takes.

Millie, on the other hand, would simply like for it to stop snowing now.

 

Another Day in Chemoville

To add to the weekend series from my previous entry, this evening's picture I think makes the trend apparent: it's been a downhill ride.

I got in the pool this morning, out for a walk with the dog too, but the rest of the day has been super low energy, spent on the couch. Food is seriously unappealing, though there are three exceptions:
 
1. Home fries and ketchup.
2. Plain vegan borscht (beet and cabbage soup) with  a squeeze of lemon and a spoon of miso.
3. Mint chocolate chip Rice Dream.

N~ helped me make the home fries today. The soup is in the fridge awaiting the energy or some help to heat it up. And J~ is headed home with frozen treats.

It is easy to sink into feeling like a victim of cancer, and a victim of the treatment. I can get into a mindset that I'm somehow a failure in that I'm submitting to this torture willingly. I suppose it's a similar feeling a parent with a sick child must feel: powerless, impotent, like I should have been able to protect my child/self from this.

But then I remember that this is a fight for my life, that undergoing chemotherapy and then radiation and hormone therapy will raise my chances of being alive and cancer-free ten years from now from a measly thirty-five percent to a much more promising seventy.

Then I think about everyone cheering me on and helping me through, and it hits me that there is a crew engaged in the fight with me.

It's incredibly touching to feel on such a visceral level that my life matters.

Thank you all.

Chemo Aftermath Weekend #3

Saturday night, doing surprisingly well.

Sunday night, tired and a bit sick to my stomach.

When I was first diagnosed with breast cancer and coming to terms with the road ahead, I thought about an annual winter weekend retreat I've attended for many years running. It's a workshop attended by a state-wide community of peer counselors, some of whom I've known and loved and felt loved by for close to twenty years.

By pitching myself forward in time, picturing these people as my witnesses, I was able to grasp a few strands of the reality that faced me: I would soon be bald and scarred and sickly. I would still be myself. I would still be loved.

All of this was so hard to fathom. But every time I put my mind there, it became just a little more real and I'd break down crying.

The workshop was this weekend.

In spite of chemo on Friday, I managed to attend most of the event. I let people take care of me, fetch me tea and pillows, ask questions and care and really listen to how I was feeling. I lay in the arms of trusted beloveds and repeatedly cried my heart out.

In a burst of well-being Saturday evening, I joined a group of beginners practicing Capoiera, a Brazilian martial art set to music. I'd been introduced to it in my twenties, enjoyed it, but hadn't played since.

And at one point, I got to share mastectomy war-wound show-and-tell with a woman who'd gone through her own breast cancer saga thirty years ago. Her scar was just the thinnest silvery line. It didn't occur to me that mine could ever look that tame. It was very encouraging.

When the weekend came to a close, it struck me: It's true. I am bald and scarred and sickly. I am still myself. And I am still loved.

And I'm fighting for my life.

Three Down

Chemo #3. Earrings were a gift from B~, my chemo nurse. She made them herself.

I quit the Avastin trial today. More bad press put me over the edge. The doctors I talk to are passionate about this experimental treatment but I have been on the fence. They've seen amazing things happen - in SOME people, and serious side effects rarely, and only in people with other health problems complicating the picture. Coming from a place of fear for my ultimate survival, it seemed worth the risk. But then again, I don't always want to come from that place.

It was an emotional decision. It is very hard to walk away from anything that might just maybe save my life. I can't say I'm 100% confident in my choice, but this walk away felt right.

And this time my night-of side effects are significantly milder than they were the first two cycles. Almost no nausea, no heartburn either. Just tired. Going to bed soon.

I had M, K, and G with J and I at chemo today, and their presence made the whole thing almost fun. Came home to a gift of food left by P, and then a visit, and more food brought by W later in the evening.

One last thought:

Buddies are good.

Millie agrees.

Epiphany

Sunday evening sky.

Earlier this week as I drove to the food co-op, I was brooding about cancer and chemo and side effects and my possibly shortened life. I had Halima Bashir's memoir  Tears of the Desert: A Memoir of Survival in Darfur playing on CD. It's a gripping story, but that's all it was to me at first, a story.

Suddenly it hit me that it was real, that this woman was real and her experience was real and, in a certain and very tragic way, it was not unique.

And then it hit me that my experience is not unique either. People get cancer every day, go to chemo, shave their heads, make the best of it.

It wasn't a bad feeling. I felt no shame as I noted my self-involvement, nor bitter despair contemplating all the suffering in the world.

At the same time, I realized that comparatively, what I'm going through is not so bad.

And then I felt something inside me brighten and expand.

Rain and sleet last night and today. The world is sealed in ice.

I'm not sure I can rightly describe the shift. It reminds me of that day when J~ and I came across the car accident. I realized that I am still very much alive, very much a conduit of the pulsing electric current that is life itself. I remembered that I still have plenty to offer to this world, and plenty of pleasure to take in the process.

Back in October when I was first coming to terms with the fact that I have cancer, when my prognosis was not yet determined and the prospect of death loomed large, I shared a thought with J~. It may sound trite, but here it is: More than anything, before I die, I want to give away all the love in my heart.

Of course I will fail, I realized as I spoke. The more I express, the more love I'll feel, so I know this is a losing proposition.

But hell — as someone recently reminded me — none of us gets out of here alive.

Sometimes success is not the point.

No holding back.

My brother's kitten, named after my surgeon.

Millie and my neighbor.