I'm supposed to receive my final chemotherapy treatment on Friday. What a long road since I was diagnosed last October. Like a dream, a meandering, colorful, bad but poignant dream, it seems like it both took forever but also passed in an instant. Like a frame around a painting, setting it apart from anything else that might distract the eye, the preciousness of my life feels framed by this experience.
I am determined to find pleasure every day. To give up rushing, cramming one more task into each five minute increment, pushing myself relentlessly forward into the next accomplishment. At the same time, I am also determined to stay conscious of how I am passing my time. Accomplishment feels good when it's in proportion with rest and exercise and pleasant companionship.
For those of you coming up behind me on the cancer treatment path: I remember fearing food would never taste right again, that I would never again feel a joyous bubbling over of healthful energy. I am here to testify that both experiences are possible, even while chemotherapy is still in full-swing. Taxol is not Adriamycin. All chemo is not the same. Trust your own resilience. You will get your life back.
Though I feel great in every other way, the neuropathy got a little worse this week - nothing super-uncomfortable, just a little numbness in my toes. But apparently this raises enough of a red flag to possibly postpone chemotherapy again.
The verdict came in late this afternoon: Assuming my white count is better. I'll get chemo tomorrow, again only 80% of the standard dose.
Of the ten Taxol treatments I've received so far, only two were full-dose, one was 88%, and the rest were eighty. Who knows what that means in terms of my future cancer prognosis. All I know is: just two more chemo treatments remain and I'm VERY eager to be done.
Another thing – In the three weeks after chemo ends and before radiation begins, I'm going to do my best to cordon off entire days just for me. A lot of them. No deadlines, no appointments, not even social commitments. I had a surprise day like that Tuesday when chemo was postponed and I was happier and more relaxed than I've felt in a long time. I need more days like that.
Every time I go to the cancer center there is a preliminary routine beginning in the outer waiting area. First, I'm festooned with a lovely plastic wristband with my very own personal barcode. I'm then called to a little room with three chairs to be weighed and to give a blood sample. From there, I go to a second waiting room, and finally, on to the business at hand.
Today's business was a checkup with my oncologist.
This happens every few weeks and the routine is also predictable. Nurses aides come in, two at a time, to take my pulse, temperature, and blood pressure, one working on each side. Jim calls them the pit crew. And then I strip to the waist, put on a scratchy cotton gown and wait wait wait. The doctor comes in, asks some questions, and examines me head to groin. After which I'm allowed to put my clothes on and ask my questions.
Today I was told six things I have not heard before:
1. The risk of recurrence with my type of breast cancer (hormone receptor positive) actually gets WORSE after five years rather than better.
2. "You WILL be taking aromatase inhibitors, there's no doubt about that." This was delivered with bug-eyed emphasis. My doctor had mentioned these drugs before, typically given to HR+ women who are post-menopausal. When she brought it up before, it was a possibility, something to consider, once my five years of Tamoxifen are behind me. Apparently there is no longer a gray area.
3. "It's not like the old days when you'd see those scary pictures of women with their arms blown up huge." I've seen those scary pictures and didn't realize that lymphedema didn't necessarily result in that. She says she mostly sees it in her heavier patients though occasionally in thinner women. "I'm not God," she tells me, "but I don't think you're going to have lymphedema. But if you do have any swelling, you'll call me right away, and we'll manage it."
4. One of my cancerous lymph nodes had a cute, crafty-sounding nickname. It was a "macro-met" or macro-metastasis. In other words, a big one. (Not good, but I knew that already.)
5. "Your white blood count is too low." Actually, this tidbit was delivered by voice mail as I drove home. Apparently the doctor didn't get around to looking at today's blood results until after I'd left. I was supposed to come back for chemo tomorrow, Tuesday. Now it's postponed until Friday. And next week's is postponed until next Friday.
6. When treatment ends, I am to see my oncologist every three months for two years, then every six months "for a long time" thereafter. Some doctors do less after five years, but mine does not. "Not with my younger women anyway," she said, eyes bugging again.
I know, I know, breast cancer is more aggressive in younger women. Five years does not mean free-and-clear for me. I was node-positive. I had a macro-met.
Tamoxifen. Lymphedema. Aromatase inhibitors. Will my vocabulary ever cease this incessant expansion?
Wild edibles, hummingbird, house cleaning, and a spontaneous dance party... More of my videos here.
Today I was uploading and annotating this latest video on Youtube, watching myself clear my throat mid-sentence. I do that a lot lately, never noticing the habit until seeing it over and over in my videos. It seems there's always just a little bit of fluid stuck in the back of my throat.
Jim says this began after my mastectomy.
Not a big deal, I told him, perhaps a leftover side effect from the anesthesia. It can take a long time to clear the anesthesia drugs from your system.
Or maybe it has something to do with the chemo.
But today a new thought stopped me cold: Could this be cancer? I was frozen for a long instant, as if a heavy weight were crushing my chest.
I've heard that a subtle cough, or a minor ache, persistent but not alarming, can turn out to be the first sign of metastasis.
But then my lungs sucked air and I shook off the fear, got back to the task at hand.
It's probably nothing, I told myself, and I believe it probably is nothing. But, just to be on the safe side, I'll bring it up with my oncologist when I see her on Monday.
I suppose this is part of life on planet cancer, a regular feature of the landscape - where red flags fly over every ache and gripe, and the gravity of the disease you're battling, the preciousness of the life you don't want to give up living just yet, hits you over the head.
Back story: Because of some troublesome side effects, my chemo dosage has been reevaluated each week. My nurse has me call her to communicate my symptoms on Sunday night, which she relays to the doctor Monday morning. I arrive at 1pm and never know what I’m going to get until I get there.
This Monday took that last sentence to a new level.
I made a video explaining all that happened, not this one, the Chemo Fiasco video isn't ready yet, but stay tuned, I'll get it up soon.
In the meantime, the Cliff Notes, minus all the emotional drama you'll see in the video: My regular nurse was absent (out sick) and her replacement gave us three different answers when I asked about the dosage, first leading us to believe it had been lowered, then that it was exactly the same as last time, then finally (and accurately) that it was raised. I didn't know what information (or misinformation) my doctor had, and the doctor didn't have time to talk to me directly, suggesting instead that I leave and come back another day when my regular nurse was in.
The nurse was impatient and confused. It became obvious that she was unable to provide the info I needed. I had to choose between going ahead with a raised dose of chemo without understanding the doctor’s rationale or feeling certain that the doctor even knew what I was currently experiencing – or else coming back the next day.
It takes a lot to gear up for chemo day. Emotionally, it’s harder and harder each week even though the chemo experience itself gets easier. Jim had taken the day off to support me this time. This has not been our usual routine, but because I was struggling on my own, we decided to sacrifice a vacation day so he could stay with me this time. On top of that, my car is in the shop, not to mention the fact that the hospital is an hour from home and I had plans on Tuesday. "Come back tomorrow” was not as simple as it sounds and by far not my first choice. But ultimately, it seemed the only viable option.
And it worked out just fine. I got to talk to the doctor directly on Tuesday morning, my good friend N~ drove me to the cancer center at noon and J~ met us there. Chemo went fine, just one needle stick, same dose as last week (I'm still at 80% of the standard dose).
Another day on Planet Cancer, and by far not the worst...
Two brothers, father, sisters-in-law, nieces, kiwi hair... More of my videos here.
Three more chemo treatments to go, one of them today. All the usual worries apply – neuropathy, infection, fingernails lifting off. But this is small potatoes compared to the Cytoxan and Adriamycin. And "just three more!" beats so much louder in my mind than the old litany of worries.
At the same time, with radiation around the corner and Tamoxifen on its heels, new concerns are cropping up, lymphedema, carcinoma, and artificially induced menopause.
Underneath all of this, of course, is the tiny little possibility of breast cancer recurrence, metastases, premature death. What? Death? That little thing? I don't think of it so often anymore, maybe just once a day.
When I first started down this cancer road, my brother D~ said something about the "new normal" and I snapped back at him that there was no normal anymore, nothing was normal. But yesterday I had a little flashback to the old normal, when the scariest health concerns I faced required little to no medical intervention: miscarriage, urinary tract infection, irritable bowel. Those were the days.
I remember hearing David Allen suggest in an interview once that we should all mark our calendars for a month from now, and mark his words. Something big was going to happen to change everything. Something big always happens and changes everything. So do your best living now. Give your gifts. Make that call. Take a break. Get new tires on your car. Whatever it is that you're overdue for, get it done. It's time.
Millie is a Youtube fan in this one - hilarious. More of my videos here.
The apple tree in my backyard is afroth with blossoms. I open my eyes in the morning and gaze at it through the picture window in my bedroom. For the moment, anyway, I feel lucky about my life. I have a husband who loves me without reservation, a stepson with whom there is little of the typical teenage drama, a network of loved ones who care about me and show it. An apple tree and a garden and creative work. Not to mention the cutest poodle in the world. And, gosh darn it, for the most part anyway, I like myself too.
It helps that my hair is coming back, that my energy isn't bad, that I'm counting down so quickly now to my last chemotherapy treatment - just three more to go.
When I first found out I had cancer I thought about the the relationships I want to deepen or repair, my unfinished projects, the gifts I want to give. I weighed the measure of it all against the prospect of a shortened life, letting go of the parts that involve watching loved ones age, and my own romantic visions of old lady-hood, deep wrinkles and rocking chairs.
Eight years, I heard myself think. I can do it all in that time. Just give me eight years.
It stunned me to realize that all my goals and dreams seemed doable in such a short window of time. It surprised me that I was capable of such a humble wish. But most of all, it spurred me. Whether my life turned out to be short or long, there were things I really really wanted to do. It was time to get busy.
I am busy.
And I'm realizing one more thing: If everything I ever want out of life can be accomplished in eight years, then I'm thinking way too small.
My Flip Camera is lost somewhere in the Bermuda Triangle of my house and yard. I had it Sunday afternoon in my pocket while I was gardening. Half an hour later, as we were readying ourselves to take Millie out walking, it was nowhere to be found. Not in the garden or yard, not in the car, not in, on, under, or between any items in my home.
Luckily, not much has happened in the days intervening. Plus, I have several more videos in the cue to finish editing and uploading, so it's probably a good thing that I took a break from filming.
Here's a short one, with updates on my chemo side effect concerns over neuropathy, and the latest on my getting called to the principal's office for vlogging in the hospital.
There is much more to tell you, including the fact that I'm suddenly inundated with new work from old clients (three of them). But this means that further updates will have to wait. All my free time hence forth will go into turning the house upside-down in a desperate and probably doomed attempt to find the missing camera before I give in and go buy a replacement. At which time, of course, the missing camera will demurely peek out from its napping place in my sock drawer or potting shed or wherever it is so maddeningly hiding.
For now, I'll leave you with this apparently well-known quote. No one knows who first said it, but it's a good one. I saw it for the first time today:
"Life is not about waiting for the storm to pass, it's about learning how to dance in the rain."
This video about covers it - J~ and I debriefing after our first appointment with the local Radiation Oncologist.
Four more weeks of chemo (three more treatments - I had my most recent yesterday) and then a three-week break to get me set up to begin radiation. Five and a half weeks of that (twenty-eight treatments in all). If all goes according to plan, I'll be done by August.
Yesterday J~ and I ran into a friend while walking Millie in the park. Something in our conversation sparked the realization that I never think about five years out, how I might feel if I get to that point and I'm still cancer free. It's an important milestone in cancer survivorship, generally regarded as the threshold after which the chance of recurrence drops - doesn't go away, but drops.
In the midst of all that's going on now, it's hard to imagine that I will ever hit that milestone. It feels safer to keep breathing my way through each challenge as it arises, living in the moment, savoring all that is good and present in my life right now rather than pinning my heart on a future uncertainty.
Besides, what if I get there and then have a recurrence three months later?
Ideally, I won't notice the five year mark passing, I'll be too busy and healthy and happy and engaged in life.
I asked J~ if he thinks about the five year mark. "Oh yes," he nodded, "I told you before." And then he said something in a quiet singsong, his little dream for me. "Hartford Marathon, 2020."
Last time he mentioned this I laughed it off without making the connection that this date had any particular significance. This time I laughed it off again, assuring him in no uncertain terms that I will never run a marathon.The idea of running an entire 26.2 miles, not to mention all the miles of training leading up to it, seems to me grueling, boring, not at all who I am.
Then again, I never thought I'd run a half-marathon, let alone enjoy it. I never thought I'd ride a bicycle 100 miles in one day, let alone six times over in a single season. I never thought my life would take all the various unexpected twists and turns it has taken in the years since I began this blog. Who knows. Perhaps I'll be running that marathon after all, feeling strong and vibrant and joyously grateful to be alive, and sharing the journey right here on this blog.
Two posts today - the one below seemed complete without the videos, so I'm adding this as a PS: the days leading up to my most recent Tour de Chemo, and then the most recent treatment day, Chemo #12.
If all goes well I'll be done with chemo in just four more weekly treatments.
Next up: radiation, five days a week for five and a half weeks, 28 treatments in all. Originally, the plan was twenty-five treatments beginning two weeks after chemo ends, but the daily two-hour commute seemed daunting so I switched doctors, and now the plan is for twenty-eight treatments, and a three-week layover.
Putting aside the the fact that I won't be done until August when I originally thought June, it is still so good to know that there is an end to all this cancer hassle and that it is fast approaching.
Radiation scares me. It raises my chances of inducing another cancer by 1%, which doesn't sound like much until you consider that it only lowers my chances of a breast cancer recurrence, and only in the radiated area, by 5%. And there are other long-term risks to consider as well.
I don't have answers for any of this today, or even the mental energy to devote to contemplating the questions. So, for now, I'll focus on this moment's treasures. Four of them:
Abundance. I feel so gratified observing all the dry goods in my kitchen, the jars of rice and beans and noodles, nuts and dried fruit, spices and teas. I recently rooted through all of it, organizing and consolidating and cleaning. I felt good doing it, thankful that I have so much, that I live in a time and place where I never lack for food.
My husband. He holds me and laughs with me, creates a mellow, love-filled home with me, and feels, as I do, so blessed by our bond. Oh, and also, he's a really good kisser.
Friends. Today's example - I wanted a bike ride today but not alone. S~ not only showed up on short notice to ride with me, but with food he'd made just for me that morning: spicy chana masala (chick pea and tomato curry) and fragrant basmati rice scented with cardamon, neatly packed in a grocery bag and still warm. Plus a half-dozen eggs from his own chickens.
At home later, hungry and cold, I took a hot shower, threw together a side salad of spinach, jicima, and celery, and ate hearty.
Furry cuteness. You know who you are.
My life — granted, a bit more endangered than I once thought — is still quite sweet.
I wasn't in the mood. In fact, I was in a no good very bad irrationally angry mood. I was a hater.
I hated being at the cancer center, hated seeing all the sickly people and their wheelchairs, walkers, oxygen tubes in their noses, wearing terrible wigs, looking all shades of green-yellow-pale. I hated the patients who appeared to be healthy too, with thick, real hair as if chemo never touched them. Even one woman with short short hair but a full scalp of it, and a beatific smile. How dare she be flaunting that hair growth in front of me? And the doctors sauntering through in their sharp outfits and lab coats as if cancer could never touch them personally.
Of course this isn't true, but this is how it looked to me in my bad mood moment.
My hatred knew no bounds. I hated the chatty woman at the front desk who put the plastic ID bracelet on me so loose it fell off as soon as I put my arm down. I hated the television going on and on about the killing of Osama Bin Laden, the caption on the screen announcing that he'd been shot through his left eye. Why do I need to know that? I don't want to know that. It was all I could do not to hate my husband for his tender, tentative overtures of support while I sat seething in my waiting room chair.
Most of all I hated that I was allowing yet another needle, yet another series of pills. What I wanted was some brave voice of reason and authority, someone to come in and grab me by the arm and say, This is crazy, you don't belong in this place. Let's get you out of here! And I wanted to believe that fantasy rescuer really knew what was best. I wanted to take that hand and run and believe it was the right thing to do.
It felt like it truly was right to run but I wasn't brave enough to do it. No one was supporting me to do it. Therefore, I hated them all.
Especially myself.
At the same time it felt like I, if I let myself notice anyone's kindness, I would cry and cry and cry and collapse on the floor screaming. I'd get up and throw furniture through windows and hit people, shove them all, even the sick ones. I would blame everyone around me for what is happening to me. Leave me alone! It's not my fault! I hate you all!
Um, just a tad bit inappropriate.
So instead, I tried to diffuse the anger by letting just a little love in, letting myself notice just a little bit that people care and wish they could help, letting a few tears leak out.
And I submitted yet again to the dreaded routine.
And now it's done.
Four more to go.
Tonight. I'm convinced my hair is coming in white, or at least mostly white. J~ doesn't think so.
This is from a few days ago. Looks pretty white to me...
