1 down, 5 to go

Chalky. I feel chalky.

It's Monday afternoon. Four days, 96 hours, since my first chemo session, and I'm feeling the edges of the Texatore, Carboplatin and Herceptin working it's way into my cells and rejiggering the marrow of my bones. There's no one thing that's screaming out. Instead I feel a dull but persistent buzz like that feeling I have when I walk through the Tenderloin at day's end--the hustle of dozens of focused covert conversations negotiating the terms of how the things are going to go down. If I listen carefully, I can just make out who's talking and what terms are being set. In this case, I can hear my cells wheeling and dealing, each hoping they'll make the cut.

Luckily, the first few days brought only small ripples of low energy and flu like aches. A little bit of wheezing and tightness on my 15-mile bike ride the first day, but yes, I did ride 15 miles. As I will today in getting to and from work. My oncologist encouraged to keep up the exercise. "Do what you do but do only 80% of it." I admit though, chemo brain has a hold on me. If I really focus I can feel the electricity firing in my brain. It's a low sizzling that makes it hard to be completely present. Doesn't hurt. Doesn't cause numbness or dumbness, but it's a queer feeling that lets me know there's something going on up there.

The texture of my body is changing. My mouth is a little drier. My hair is a bit more brittle. My skin is chalky but looks surprisingly healthy (well it did yesterday...today a small bit of Herceptin-influenced rash and acne are breaking out). I was jokingly calling it a case of "Chemo-brasion." I'm sure some anti-aging specialist will figure out how to make a cool buck on lightweight, skin enhancing chemotherapeutic treatments. As for flavors and appetite it's all changing. Are my taste buds being newly minted and cleared of their filmy layer, or am I being restored an adolescent's palette that can only pick up the basics of bitter, salty, sour and sweet?

The biggest thing I feel now is the soreness in my bones, as if I've been moving stones for days on end or sleeping on a park bench for nights in a row. It's hard to get comfortable. It's mainly in my back and thighs. Walking, biking, standing helps. It's not crippling just distracting. Chirp chirp chirp. Something's going on. At least I know this is supposed to be happening. It helps knowing this is normal, to be expected, and most importantly, temporary. Bill and I fence about the value of endurance. We usually think of it is a stop gap tactic for an otherwise unsatisfactory condition, but it's also a mechanism for putting things in perspective, temporally speaking. This may consume my now but it is not forever. Hell is not knowing if and when suffering will ever end--far worse than pain itself. I am not in Hell.

Bill and I went to the opera two days ago, two days after chemotherapy. We were driving around Hayes Valley looking for parking. I was hoping for coffee before the show. Perfect temperature. Blue skies. You know, a typical San Francisco day in October. I was sitting in the passenger seat, and just lost my breath thinking about everything that it has taken for me to be able to sit in that car two days after treatment and worry about nothing more than coffee. It's not guilt but gratitude and humility thinking about the tens of thousands of people who came before me, the history of experiments, trials, cocktails, all of the minute advances and tragic set-backs that have gotten us to a world that isn't without cancer but one that makes the burden bearable. 

In the two hours I've been writing this I've become bananas uncomfortable. Every part of me itches. I'm standing because sitting is intolerable. My bones are fighting to get out of my body. I'm calling it a day and am going home to try to find some way to get this discomfort off of me.

.....

Within seconds of pedaling my bike home the pain started to ease up. Movement seems to be key. On the way home I decided to get a cookie. Yes, I have a kid's logic that a cookie will make everything better. Total cookie monster, that's me. So what. Maybe a little kid like comfort would do me some good. I stopped at three places. Nobody had what I wanted or they were closed. But at the final stop, next door was a Thai massage center. Without a moment's hesitation, I walked in and said what the hell. If nothing else I can lay down for an hour in a calm warm place and get some hands on me.  I ended up getting a hot oil massage. Deep tissue massage just didn't feel like the way to go. Between the long, gentle strokes on my body and warm oils and towels that I was covered in, the pain lessened. I can't help but think I needed comfort as much a change in position to find relief. 

By early evening with the help of the massage, 7-mile bike ride, a high protein dinner made by my friend Susan and yes, a valium, the bone aches had started to let up. I feel blessed that I have always noticed and appreciated those sublime moments when dis-ease disappears. That moment when the absence of pain is its clearest. Such happiness I have when I don't have to endure another moment of strain. My head hit the pillow at 9:30 and for the first time since chemo, I slept through without waking. 

Chernobyl Mouth

Mucositis, mouth sores, Chernobyl Mouth...these are a few new realities that have been creeping into the sideview mirror lately. I started thinking about this corner of Candyland this week when my oncologist connected me to a woman, Cat, who is also going through chemo after having tested positive for the HER2NEU gene and having undergone breast cancer surgery. After asking her for a few tips (she's two treatments ahead of me), she spent a good bit of energy explaining the now infamously named "Chernobyl Mouth" which is the result of chemo drugs mingling and reacting with the gastro-intestinal system. The Oral Cancer Foundation provides a solid overview, preventive measures and tips on dealing with mucositis during chemotherapy. As the chemo works to destroy quickly replicating cancer cells, it's also breaking down healthy cells  and reeking havoc all over the body. In this case, the lining of the gastro-intestinal track is getting compromised all the way into the mouth, and like brush burned skin, left exposed, is ripe for infection and irritation.

The main challenges are coping with the lingering taste of chemicals and keeping the mouth clean and moist. From Cat's description, the height of this junky experience lasts about a week and lessens to normal just before the next session.

A few tiny bits of advice included staying away from acidic, spicy and extreme flavors. When sores do break out, washing with a bi-carb/salt rinse before and after meals will help keep things clean and moist. Or rinsing with hydrogen peroxide might be a good way to go. For dryness, I decided to pick some dental products that weren't highly flavored and contain Xylitol to help to keep things moist and pain free. I'll keep a few hard candies on hand as well. And finally during the treatment itself, I'm going to suck on ice chips just to anesthesize the area to help ward off the flow to my mouth. In a nutshell--I'm going to do my best to keep it clean, moist and mild....and most importantly, simple.

Like every topic related to care during chemo and radiation, the information is overwhelming, contradictory and ironically, usually fairly vague. I like the Oral Cancer Foundations pages and it was helpful to read over. In the end though, I want to take the simplest and least expensive route I can because my guess is there is no such thing as "right" on this journey. I'm not going to spin out from choices.

Fluxus Maximus

45 days since I've been here last. Six and half weeks that's felt like three life times filled with blind corners and slippery surfaces. It's all happening too fast for me, a person who likes to set her boundaries firmly, deeply and clearly defined. It's also happening too slow for me, a person who knows what needs to be done and feeds on productivity and taming chaos. 

But those 45 days have past and here I am today fresh from my fertility clinic visit this morning trying to see about my options. Because if having cancer isn't enough, having it at a certain age means addressing the issue of early onset menopause. Chemo, you see, kills not only the replicating HER2NEU cells that want to devour my body, but tends to kill any healthy dividing cells that are happily going about their business--from my reproductive system all the way up to those itty bitty strands of hair perched atop my head.

Cancer is an accelerant. It is a substance that can bond, mix or disturb anything it touches and cause an increase in the speed of a natural or chemical process. It accelerates decisions, relationships, values, emotions...it accelerates everything it touches. 

For weeks now, I've been trying to grab a hold of anything that looks familiar, not fighting change but trying to apply standard patterns to keep familiarity close at hand. I've been trying to control anything within my grasp, be at the helm to regulate the speed and direction of the current. "No, I've got it." "I'll do it." "I'll take care of it." "It has to be done now." And so on and so on and so on. 

But the fever's broken. I'm sitting here now stunned at how much I couldn't see. My view has changed and the metaphor has gone from steering through the chaos to floating with the current. You don't float by holding on but by letting go, by feeling and responding to the water's minute gestures. It's no longer about fixing things but rolling with the flux -- constantly flowing, continuously changing, unbounded experience. No beginning. No end. When I'm awake I know this. When I'm half conscious, it's incredibly hard to remember let alone embrace. I'm not exactly sure how I got back but I think through pure exhaustion reality was given a little room to shake me awake. Oh and also, the man I love, Bill, the one who means the most to me, reached his limit in the unsolicited role of bridled whipping boy. Bless his tall white boy sense of privilege to think he could mandate how I should start behaving, barking out how it's going to be from here on out. My annoyance turned into rage. Plates went flying and with that, the last bit of fighting in me went out the window...or into the window if we want to get the facts exactly straight. Thank you, my love, for demanding that it's time for me to wake up.

I know who I am. I know that I'm much more at ease if I have some edges to what's lurking in the distance. And I'm much more comfortable if there's enough order and clean surfaces that I can get done what I want, when I want. That's not going to change. But the true reality is that what I know and what is in place is good enough. There's time. Enough has been done. No one's dying here. Well, at least not me and not quite yet. Suddenly magically, look how simple it all has become. Stay awake. Pay attention. Participate. And even with cancer, I can have a little bit of fun. Maybe even a lot.

Big breath again....

So where are we for those who are just catching up?

30 days ago I had an out-patient lumpectomy where a 1.5 cm ductal carcinoma was removed from my left breast and a biopsy was done on a sentinel lymph node to see if the cancer had migrated to the lymphatic system. It had not. But what is known about cancer is that it is relentless and pitiless. Treating it locally through removal of what can detected is not enough. Cancer must be treated systemically, which means, even though it may appear I have a clean bill of health, it shouldn't be assumed this is the truth, especially with HER2NEU lurking in the wings. So where am I then? I'm in the holding pen with my release papers in hand. But first there are a few gauntlets that need to be run. Four more steps in total. The first three completed over the course of a year with the final step running over another 3-5 years. 

Today, October 14, 2013 I am assigned Stage 1, Grade 2 ductal carcinoma. Post surgery now, I will follow a standard course. 
Step 1: Slash and Burn (Beginning 72 hours from today). Six rounds of TCH chemotherapy treatment (Taxotere, Carboplatin, Herceptin). Every three weeks until late January 2014. Fatigue, mouth sores, baldness, brittle bones. A new normal.
Step 2: The Easy Bake Oven
4-6 weeks of daily radiation administered locally to the left breast. Using an awesome bit of technology, the ray is sent on the exhales to avoid radiating my heart. Like a tanning salon but even better.
Step 3: A year of IVs 
Herceptin treatments every three weeks for the remainder of a year to keep the HER2NEU gene in its rightful place. Totally do-able.
Step 4: Hormone Therapy
3-5 years of daily meds which hopefully will not result in obesity, depression, personality change and/or hot flashes. But we'll leave those concerns for another day.

more to follow indeed....