Sunday, August 26, 2018

Universal prayer.

I had a bit of insight the other day that all prayer  - whether directed at a personal god or toward the universe - can be winnowed down to two categories: "Please" and "Thank you."

All requests are "please." Help me, give me strength, let me pass this test, bring my child home safely. Or my recent request of the universe, "Please just don't let this new oncologist be a dick." Sometimes it's an unreasonable demand, one that brings harm to another or one that seeks to change an outcome already decided. Other times it's the wordless fear-based plea of the broken, when you are too overwhelmed to even know what to ask beyond, "Please..." Asking often doesn't get you what you want or think you need, but it's so human to ask anyway. To plead, to try to bargain, to just wish with every fiber of your being.

And then there are the "thank yous." Answered prayers or unasked-for mercies, reverential silences and jolts of joy or love.  Gratitude can strike without warning: when an infant curls his tiny perfect fist around your finger or you hear the delighted giggle of a toddler, when you gaze up at the star-speckled night sky or out at the vast gray ocean, when plants burst back into life each spring, when you receive an unexpected kindness or compliment, when you look into the face of someone you love. You can be appreciative in small, quiet moments of contentment or in events that take your breath away.

I can think of so many instances of both, but two spring to mind. The first is a time when I was at my 5-year-old's soccer game, one of probably half a dozen games in a very crowded park. I sat with a few other moms watching my 2-year-old play in the sand pit. I turned my head for less than a minute to watch another child approach and when I turned back, my little boy was gone. Just gone. I jumped up and scanned the park and couldn't see him anywhere. I will never forget running around frantically asking everyone if they'd seen him, while people stared at me blankly and cars came and went in the full parking lot. If there was ever a "please" moment, this was it for me. Finally, someone who'd seen him pointed the direction he'd headed and I found him across the parking lot. He'd seen his dad and had run to meet him. I'm not sure when I've ever been so desperate to have my plea answered.

The second took place on a trip to the Serengeti during the great migration of nearly two million wildebeest. As far as we could see in either direction, for miles from one horizon to the next on that flat savannah, an endless stream of animals. Several wildebeest deep with zebras flanking them, barking at each other over the wildebeest's backs. Our guide nosed the jeep into the running herd so that they spilt and ran on either side of us, never pausing. It was just us and millions of animals, driven to run by the changing grazing availability. As I stood in the jeep, with all those beasts thundering around us, I wept - a silent "thank you"for being able to witness something so amazing.

In my adulthood, I often see a hawk just when I most need a reminder of my own strength. They seemed to be everywhere when I was pregnant and also in times of turmoil. Last week, I got home from seeing the new oncologist and was staring down the certainty that I would be doing chemotherapy, a process I absolutely dread. I parked my car in the garage and stepped back out into the sunlight and yelled up at the sky, "I could sure use a hawk sighting right about NOW!" I turned to walk back inside and heard the distinctive screeching cry of a raptor. Over my head, a hawk wheeled into view. It remained circling long enough for me to grab my camera and get one shot before disappearing, leaving me teary-eyed in gratitude.

And thank you.

Wednesday, August 22, 2018

The goldfinch in the last photo is also in the first two, perfectly disguised. Camouflage. Sometimes it's a beautiful thing, sometimes it's horrifying.

My breast surgeon had told me she was sure I wouldn't need chemotherapy, only endocrine therapy. After all, in spite of the fact that my cancer was invasive, the margins were clean and there were no cancerous cells in the sentinel nodes that were dissected. So I set my sights on working through the surgeries and tried not to worry about worst case scenarios. I met with the oncologist a month after the mastectomy and honestly didn't like him all that much. He went over the criteria for chemo and and was awfully dismissive about the side effects. But he also estimated I'd have a mid-range oncotype score and wouldn't need it. So if it was just a matter of getting my prescription for tamoxifen, what difference would it make if I wasn't wild about his poor bedside manner?

And then my oncotype report came back and everything changed. The oncologist's PA met with me first and asked if I'd seen my oncotype score, and told me it was 38. I already knew the cut-off for chemo was 25, and I was floored. She said, "Aw, were you hoping it would be under 25?" Well, no shit. Are there actually cancer patients who hope to find out their cancer is extra aggressive? And then, in response to my tears asked, "What are you worried about?" Oh, I don't know - dying?

Then after a conversation in the hall that I could partially hear, the oncologist came in. He told me what sort of chemo I'd be doing and asked if I wanted to start that day. That. Day. I was there by myself. I told him that no, I needed to think about it. I asked him to explain what went into my score and about some discrepancies between the tumor pathology results and the molecular results of the oncotype and he brushed away my questions. I apparently didn't need to know all that, I just needed to start chemo.

I was less than a week from my exchange surgery and finally getting the very painful expanders out. I made an appointment for the following week and left. My younger son was at my house when I got home and opened the door for me because I was crying too hard to work the keypad for the lock. My big-hearted boy sat next to me, held my hand and cried with me. He offered to cook me something or take me out to dinner, and to shave my head when it was time. (I can only say that his response let me know I've done something right in his raising.)
I called my breast surgeon to ask about a second opinion and she said she'd arrange it but also said she thought my oncologist was excellent and said, "He thinks about this disease more than anyone I know." And he may be amazing in terms of experience. But I'm not a disease. There is a person wrapped around the cancer and you can't treat a disease in isolation. My surgeon encouraged me to start chemo and said, "Your tumor is a wolf in sheep's clothing. It's the reason we do the oncotype." As you know, I went ahead with the surgery. Three days later, I took a friend as back-up and went in with a list of questions and the intention of scheduling chemo in a couple of weeks. The oncologist was clearly irritated that I'd had surgery and demanded to know why expanders hurt and implants didn't. I explained about the external seams and tabs of the expanders but he just shook his head. Each of my questions were answered shortly. At the end of my visit, I told him about the unkind way the PA had delivered the oncotype score and he smiled tightly and said, "Thank you for the feedback. Okay. Okay. Thank you for the feedback." He obviously didn't want to hear what I was saying.

The most difficult part for me was the prospect of the IVs. I explained that I have a serious needle phobia and he said, "Just don't look." Yeah well, that's not how phobias work. I can still feel them. So they sent the chemo nurse in to talk with me. She told me that unfortunately taxotere is hard on veins and they'd have to find different ones each time, including the deep tiny veins on the underside of my forearm. And since I've had lymph nodes removed, I can only ever have IVs or blood draws on my right arm. And that yes, that would make future blood work more difficult. I went home in a pure blind panic, then called back to ask if I might have a port installed for the duration of the chemo. Nope. "Not necessary." Basically, the message was that I needed to shut up and do as I was told.

And that was the last straw for me. I sent a message to my breast surgeon and told her I HAD to have a referral to the other oncologist she'd recommended, as soon as possible. Please.
You know, I actually set the bar pretty low for the second opinion. I was just hoping against hope that the guy wouldn't be a dick. His profile on the group's website said "He finds that the most rewarding part of his job is the bond that he is able to form with his patients and their families during such a difficult time." Surely he wouldn't say that if he didn't value his relationships with patients. I went in today, holding my breath and looking for mercy.

I liked him right away. He carefully walked me through the oncotype report, explained why I could be estrogen receptor positive in terms of my cancer but not on a molecular level, talked about the fact that my particular profile made my score not within the actual research cohort. He talked about the potentially life-threatening effects of chemo and the seriousness of the decision. This was in stark contrast to the first oncologist who told me the chemo was "only four rounds" and "not a big deal." He told me, "We can talk statistics all day long but I'm not here to tell you what you have to do.  I'll be honest, if you were a family member, I'd force you to have chemo. But you're not and at the end of the day, you have to decide what is right for you and your own life." 

I explained my needle phobia and that I'd asked for a port and was told it was unnecessary and I couldn't have one. "That's ridiculous," he said, "You absolutely can have a port. Absolutely." In fact, he said he'd have recommended that for someone like me.

At the end of the visit we had this conversation:
Oncologist: "I'm not in the practice of stealing other doctors' patients, so if you'd like to take all this information and continue to work with..."
Me: "No! I canNOT work with someone who doesn't even like me."
Onc: "Okay, then we're going to call an audible here."
Me: "That's a sports reference, right? I don't understand it."
Onc (laughing): "Football. We're going to change the play at the line of scrimmage."
Me: "Still not sure, but I think I've basically got it."
Onc: "I'll get your surgeon's office to schedule you to have a port placed and we'll tentatively schedule to start chemo the following Friday."
Me: "I can go with that plan. I was never saying I wouldn't be willing to do chemo, only that I needed someone who could work with me around my needle issues."
Onc: "Well, I wish all my appointments were this easy! Very nice to meet you and I'll see you again before your first round."

I'm not happy (she says, putting it extremely mildly) about the idea of being pumped full of poison, but I feel safe and heard with this new oncologist, so I'm as ready as I'll ever be. I called and cancelled out all the scheduled appointments with the other guy and breathed a big sigh of relief.

Sunday, August 12, 2018

On the mend, sort of.

Tuesday's surgery went reasonably well - it lasted 3 ½ - 4 hours and I was home by mid-afternoon.  I'm sore, but was able to take half-doses of the pain meds the first night, and start stretching out the time and further subdividing the pills so that I took my last quarter of a tramadol about 5 pm the next day, and switched to tylenol after that. Don't get me wrong, I hurt. But it's manageable and is far preferable to the expanders. I also have deep pain in my thighs and belly where fat was harvested to fill in low spots. You'd be surprised how much of your upper chest, no matter ribby, is breast tissue. And that's all gone now. Prior to the surgery, the surgeon came in and asked if I'd been eating ice cream like I promised, then checked my stomach for usable fat. "Hm. Nothing really here," she said, "Let me see your legs." While I was in recovery, she told my husband that she'd taken all but the last three droplets of fat from my belly. So now where the expanders were are highly cohesive silicone gel implants, known as "gummy bears," wrapped in alloderm. That's right, I have a couple of 400 cc gummy bears wrapped in cadaver tissue sewn in under my own skin. It's a little unsettling, to say the least.
I'm healing as I'd expected and planning to go back to work on a light schedule tomorrow. Except one thing. There's the small issue of my left foot. Looks normal enough, right? But the bottom of it is completely numb. I can feel the top of my foot and flex my toes back, but I have nothing on the bottom and can't bend my toes down. The first night I nearly fell a few times getting around. It's like I have a cold, tingly marshmallow attached to the bottom of my leg. I went to see my primary care physician and he said inflammation caused when fat was harvested through my groin is pressing on a nerve. He and the surgeon both agree it should resolve in time. But I've been stumping around for 5 days now and it's not a bit better.
Rest isn't helping, ibuprofen isn't helping, and I'm not all that patient. So today I crossed a new agey, hippie-dippie line that is very unlike me. I'm trying the CBD oil recently legalized in my state. We went to the brand new store that is marketing to older customers who don't feel comfortable knocking around a head shop. It was comical, really - there were two small shelves in the store with various vials and packets of candies. And, weirdly, dog biscuits. I guess if you have a yappy dog this might settle it down? The rest of the shop consisted of two comfy chairs, a couch, rugs, lots of nature-themed decor, and soft music. Their motto is "help without the high," referencing the nearly non-existent THC in the stuff. The co-owners let customers sample water with some of the soluble drops mixed in and I can only describe the taste as "nasty." I will be mixing mine with juice. Will it help the neuropathy in my foot? Who the hell knows? The little bottle has a 30-day supply and it can't hurt. I'm a skeptic by nature and I had to stifle a laugh listening to one customer in dress slacks and tasseled loafers explain that his ex-wife problems were very real and he needed it. Buddy, even a joint isn't going to cure THAT problem. But as we used to say in grad school, "placebo effects are real effects." If I start to get some feeling back in my foot, I'm not going to care what actually brought that about. I would just like to be able to walk steadily again.

Monday, August 6, 2018

Here we go again.

I'm not a fan of surgery. Specifically, of me having to have surgery. But part of the reconstruction process requires that I go have the expanders, installed at the time of my mastectomy, replaced with implants. And I'm here to tell you that the tissue expanders hurt. Hurt enough that I sometimes wonder why I decided to go the reconstruction route. The edges press against my ribs, the tabs are sharp and poke into the underside of my skin, and the metal ports in them make me throb when I'm cold. And these days I am almost always cold. The pain of the expanders jolts me awake and I have not slept through the night in 58 days. They make moving and paying attention difficult during the day. So much so that I was eager to cut short the process, call it good enough, and schedule this surgery.
So wish me well, please, as I jump through this surgical hoop tomorrow morning and try to heal as quickly as possible to move forward with the next phase of this waking nightmare.

Thursday, August 2, 2018

In our yard.

I got news from the oncologist at my appointment that blind-sided me and sent me spinning into a dark place. But I have to first get through this reconstruction and don't even want to talk about it until I'm done with that. As a distraction, I'm posting about my yard:
After several hours of happily weeding last weekend, I wandered around taking a few photos. You might have noticed a little frog on my front step in the last post. I have a thing about frogs. Instead of a teddy bear, my transitional object as a child was a stuffed frog. Named Froggie, appropriately enough. So now I have them scattered around. This one's paint has gradually peeled off, but I like the muted color it has become and it lives on the end of our deck out back.
Just off the deck is our dogwisteria, a tree I've posted before. It's an ancient dogwood that has been fully engulfed by an enormous wisteria and ivy. I love that it has vines draping to the ground and is the home of a wide variety of birds. When I first moved in, my ex-husband said, "You should cut that thing down." I said, "What?! Are you out of your mind? That's the best this about this backyard!" I seriously love that vine-draped tree. It has white and purple blooms in the spring and provides an old, mysterious presence to the yard.
The hemlock garden, dry and shaded, is a bit of a problem child. Hemlocks are thirsty trees and so nothing that can't tolerate both shade and drought can live there. When we were cutting back shrubs last weekend, I asked my husband to cut down the small dead azalea and then noticed a few green leaves on one branch. I told him I wouldn't be replacing it this year anyway, so we'd leave it and see what it does. A week later, it's springing gradually back to life. Nature can be so resilient.
I spent some time this past weekend tackling the blueberry bed, which was over-run with weeds. A few hours and a run-in with a red ant hill later, and I had it all cleared. Small victories are my life these days.
The butterfly garden seems to be doing fine without tending this year and the Joe Pye weed has reached staggering heights. The variety is Baby Joe, which is clearly not true. But butterflies love it so it's welcome to get as tall as it wants. In front is a sizable cement frog named Jermaah.
At the gate leading from the back yard to the side yard, another frog stands sentry in front of this strange thing we found at the zinc mines by our old house. It's hinged in two pieces with a funnel shaped carved into the wood and has leather handles. No idea what it is, but I liked it. I also like that mushrooms decided to grow near the frog.
And out front, it's a crazy mishmash of plants. Brown-eyed Susan' that I don't remember planting, overgrown lorapetalum, blue-green bird's nest spruce with variegated lirope in front, and surprise begonia that sprang up out of nowhere in the middle. Somehow it all works together.
The crabapple I planted two years ago and then transplanted last year has three apples on it! I'm really excited about this. Next year I hope to get enough to make crabapple sauce.
Yet another frog nestled under the purple-leafed sand cherry out front. When I first placed him there in 2014, he was easily visible from the road. Not anymore. He's now the master of his own little kingdom.
So that's our yard, a lush little jungle oasis surrounded by tailored suburban grass lawns. I don't know what other people think of it, but it brings me joy every time I see it. And right now, I need all the joy I can get.