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.

Sunday, July 29, 2018

More than half-way on the No-Shopping challenge.

Let's just say the no-shopping year challenge hasn't been the primary thing on my mind of late. But I haven't posted about it since the end of April, so I'll just do a quick update. In May, in advance of the mastectomy, I bought some of the things I was told I'd need for recovery - a wedge pillow, straws, soft pj's the open in the front. The things I would need to sleep propped up and navigate with extremely limited arm range. I came home and dutifully colored in that date's square in pink to show I'd shopped. Then my husband stepped in. Those were not discretionary items, he insisted, those were medical expenses. And he was right. And I was even temperate about those expenditures - one thing I bought was an old school zip-front house dress for $7. I cut holes in the pockets from the insides to put the bulbs of my drains tubes into. That thing was flat ugly, but cheap and practical. I tell you though, when I wore it I felt like I was a cigarette and a glass of sherry away from being my Gangeen.

EXPENDITURES
   May - July         Year to Date      Category                              
      $0                       $0                    Clothing                                                   
      $0                       $0                    Shoes                             
      $0                       $0                    Accessories                                       
      $0                       $0                    Cosmetics         
      $0                       $0                    Kitchen items                 
      $0                       $0                    Gadgets/electronics 
      $0                       $0                    Furnishings
      $0                       $0                    Books 
      $0                       $0                    Shrubs/trees
      $0                       $0                    Non-necessary household goods 

We're almost to the end of July, so I'm including it since I feel confidant that I won't be shopping in the next couple of days. For gardening, I'd only included shrubs and trees and had planned to buy some annuals for a couple of pots out front the way I do every year. And then decided that even that wasn't necessary.
For the pot that I usually put mums or other seasonal flowers into, I dug up a patch of mystery plants that weren't a good fit for where I'd originally put them. At the point that I stuck them in the pot they'd not yet bloomed, so I was very pleasantly surprised when these beauties emerged.
I had one other empty pot on the front porch and I decided to make a topiary-like thing. I had a set of three pieces of bamboo wired at the top that had come with some other plant. I cut some ivy from the back yard and twined it up the bamboo poles. It's grown quite a bit and adds a little height to the plantings. And all free!
Food was never part of the no-shopping year and while we mostly eat at home, yesterday we'd spent all day working on various projects and decided to pick up some catfish and onion rings at the neighborhood diner. Apparently the fish was so hot that it melted right through the container. My husband said, "What are the chances that none of that styrofoam is melted into our fish?" I just shrugged and said, "I don't know. Maybe it will give me cancer."

Sunday, July 22, 2018

My adjusted life.

In between surgeries, I have returned to something approaching normalcy. (Note this photo has nothing to do with anything - it's just Hodr being weird.) I went back to work too soon, for a couple of very short days after four weeks. It was a mistake. But the next week I was a little more ready worked four mediumly-full days. The biggest issue was just being able to drive the 45-minute commute. Fifteen minutes of my drive are in heavier traffic and I had to wait until I could extend my arms in front of me. I keep a folded up towel in the car to put between my chest and the seat belt. It's been nice to see my patients again and to hear that I've been missed. I've scheduled myself a break in the middle of each day to nap, which helps.
After weeks of staring at the weeds taking over my gardens, I decided to tackle the worst of them last week. For the bigger limbs on shrubs and wisteria vines, I showed my husband where to cut and he wielded the loppers. I pulled up a bunch of weeds, but only things that came up easily from the ground. Other weeds I just cut off at ground level and I will deal with their roots after I'm recovered from my second surgery. I ended up with this pile to be hauled away by the city. And no, I didn't lose my shoe, it's just there for scale.
As I've been able to focus a little more, I've moved away from the stash of free books I'd been storing on my ipad and picking up some books that require a bit more brain power. My current read is about how human exceptionalism in the field of paleoanthropology leads to sometimes absurd theories about evolution. Not that I'm not also reading novels, of course.
And I have spent a great deal of time just watching the little world of my yard. Out every window, there are birds and small mammals to keep me entertained. We keep the bird feeders filled and set out peanuts for the squirrels and blue jays. And of course, the rabbits love the clover lawn.
So that's where I am these days. Working a little, watching the world go by, and waiting for my next surgery in a couple of weeks.

Saturday, July 14, 2018

The Cancerland Diaries (with apologies to David Sedaris)

When I first got diagnosed, I did a little light reading. And even with all the guidebooks, it's still like being dropped off in a foreign country you've never heard of. The currency in your wallet has no value, you don't speak the language (which has a strange grammatical structure all its own), you don't know the customs or the laws. And when you step off the plane and into this new land, the authorities confiscate your passport so that you cannot leave. Welcome to Carcinomistan, and you'd better plan on staying.

Some of the things that happen are inconsequential, but odd. Among other things, the hospital sent a walker home with me when I was discharged. It wasn’t until later that day that I looked at it and wondered why on earth they’d done that. After all, it was my arms that weren’t working - my legs were fine. What they should have sent me home with was an adult-sized version of a baby walker. You know the ones with a hard plastic tray all the way around, a sling seat, and wheels? Those are leg-powered and I remember my own kids scooting around in one. Plus I could have snacks, meds, and my iPad within easy reach at all times. It would be helpful to have a tray in front that swings out and a high-backed, cushioned seat that reclines for naps. I think there is a definite marketing niche for these.

Another strange thing is that part where upper body nudity becomes very casual. Every specialist I visit has me gown up and then spends some time examining my incision scars and in-progress reconstruction. I joined a couple of Facebook mastectomy support group and suddenly my feed was filled with pictures of mismatched breasts, necrotic nipples, ragged scars, and tattoos. I've had to unfollow the groups so that I only see those posts when I go to that group's page.
And pain. It's just my constant companion. Apparently it varies depending on where tissue expanders are placed, but mine are under the skin and hurt all the time. All. The. Time. The tabs at the top have curled up and poke into the underside of my skin, the stitches into the soft tissue pull with each breath,  the edges are sharp all the way around, and my skin feels stretched to the breaking point. In fact, it's almost become a curiosity to me, so I made a count-forward calendar on my phone to see how long the pain will last. All I can do is hold on until it's done.
And then there are the electric shocks, which I'm told are the nerves in the skin regenerating. We'll just say it's both startling and unpleasant. One day I picked up my phone and touched the home button to unlock it when a wave of shocks went through me. I reflectively clutched the phone and gasped. Siri thought I was laughing and he helpfully laughed back. Thanks, Siri.
Finally there are the weird, clueless and downright inconsiderate things people feel moved to say. I can't count the number of times someone has immediately told me about someone in their life who has died of breast cancer. Not helpful. Or suggested that it's "so easy to cure these days." Well, actually, it's not a curable cancer. The best you get is "no evidence of disease" because there is always a chance that rogue cells have bypassed the lymphatic system and are quietly setting up a colony in your bones or liver or brain. Or people who tell me how they would feel or what they would do in my situation. As if anyone can know that. Or the "free boob job" jokes that make me want to pick up anything within reach and clobber the person. Or this classic that was said to me, "Oh, that's terrible. Will they have to cut both your breasts off?" What the actual fuck would compel someone to make that comment?
But, there are blessings. Friends who have landed in this strange country before me and can offer invaluable support and advice on navigating this disease. Other friends who give me rides to doctors' appointments and sit with me while the oncologist talks about possible treatments. Flowers and cards and gifts that started arriving my first day back and continued for a couple of weeks. Food delivered to lighten the load. People checking in by text and email to see how I'm doing. Well wishes and prayers from too many people to count.
And this guy. Because when I got pulled into the cancer vortex, my husband took my hand and went under with me. In addition to taking care of me, he has shouldered all of the housework and cooking in the weeks since the surgery. He flushed my drains tubes and changed dressings, looks at my mangled body without flinching (something I cannot yet do myself), and is endlessly patient and loving in the face of my fear and grief. And when I apologize for being in constant pain and a burden he stops me in my tracks, wiping away my tears and telling me, “I am ALL in. No matter what happens. We can do this.” I can’t imagine a better partner in this strange land.

Friday, June 22, 2018

Emerging from the vortex.

Well. I guess I was even less prepared than I knew. The hospital experience was, you know, a hospital experience. We had to be there at 5:30 a.m. for a nuclear medicine ordeal that was grossly under-represented as being "like a couple of bee stings." I'm going to call bullshit on that and let it go. Three hours later, radioactive material snug in my sentinel lymph nodes and prepped with an IV, I went into surgery. Which, although I didn't know until later, lasted seven hours. I spent another three in recovery while they gave me bag after bag of fluids trying to get my BP to an acceptable level.

My husband and my son's fiancée sat with me that evening, and my husband spent the night sleeping in a chair next to me, a reversal of our experience after his stroke. And then they discharged me around lunch time. I was so glad to be home and wrote a post on Facebook saying so.

And then all hell broke loose. Five days later, I came up for air long enough to post this:
"I was just glad to be home from the hospital. Sure, I was in a lot of pain and had limited mobility, but I had help and encouragement and I was ready to heal. And the Universe heard and said “You think you’ve got this? Ha ha! Fuck you! How about I see your breast cancer and raise you unrelenting migraines? How about I put your skull in a vise for days and reduce you to a shivering, puking husk of a person? Then how about I finally ease up for a few hours to give you hope that you’ve turned a corner, then wallop you again? Still think you’ve got this?”
Well, Universe, I can only say that If I were a prisoner of war, I’d have long since given up any secret I knew just to Make. It. Stop."

And then I retreated again, pulled back into the storm. I had spent nearly a week throwing up everything I ate and reeling in pain. Finally last Monday, my surgeon told me to come in and she suggested that maybe my narcotics were actually triggering the migraines. I switched to ibuprofen and very gradually life started to feel a little more like life. But only a tiny bit. I still hurt like crazy. I hate sleeping propped on the couch and maneuvering around drain tubes and having them flushed out twice a day. I hated setting an alarm to take an antibiotic every four hours around the clock. I hated lying awake with my skin on fire and counting the minutes until daylight.  In some ways I hit bottom Wednesday when I wanted to punch anyone who was telling me to be strong. Because I have discovered that people can react pretty badly when you aren't. I think it's overwhelming to be exposed to someone else's pain and many people just pull away. And hell, I didn't like me either. I didn't know if I even wanted to make it. I will tell you plainly that I was in a very dark place.

But yesterday rolled around and I went in to see the plastic surgeon. She was able to remove two of my four drain tubes, which helped a little, in spite of the fact that it was a remarkably painful procedure. It was quick, but an astoundingly sharp pain. I may or may not have yelled, "Fuck!" Even so, I am eager to get the other two removed and get on with the reconstruction process.

Even beyond the pain, which rolls over me in an electric way, it's just hard. I can't look at myself. I don't feel whole. I can't reach things or lift. I have a schedule loaded with appointments with surgeons and oncologists and decisions ahead about treatment. I have procedures and surgeries still to come and a long path of healing. I find myself reassessing relationships and thinking a lot about how I want the rest of my life to be.

Before you encourage me to look at the bright side, let me say that I am keenly aware of the blessings in my life. And I'll get to those. But this cancer business truly sucks with a suckage unimaginable. I feel like I am slowly making my way to calmer waters and letting myself just float for now.

Sunday, June 10, 2018

"The changing of sunlight to moonlight, reflections of my life."

The day after I got my invasive breast cancer diagnosis, I headed into work and flipped on the radio as I drove. They were playing a song I've not heard in many years, the only hit of The Marmalade, from 1969, called "Reflections of my Life." The lyrics at the moment I turned the radio on were:

"The world is
A bad place,
A bad place,
A terrible place to live.
Oh, but I don't want to die.
All my sorrows,
Sad tomorrows,
Take me back to my own home.
All my crying,
Feel I'm dying, dying,
Take me back to my own home."


I probably don't need to tell you I cried all the way to work. (And pretty much off and on every day after that for the next week or so.) But when I got home that day and looked up the song, I also found a recent remake by the lead singer, Dean Ford. It is much more compelling from an older voice and now the song centers me and brings me comfort. I hear it now as a rueful acceptance that life is tough and yet is still worth holding on to.

At the Joyful Flight exhibit, I was particularly fascinated by this mirrored hummingbird. The reflections caused its appearance to change depending on where you stood to look at it. At first, with all the green, I thought it was filled with holes and then realized instead it was covered in round mirrors. I want that to be me - not defined by cancer or what is taken from me, but reflecting back what is good and life-affirming around me.
People have assured me that I am strong and brave enough to handle the path I find myself on.  I have felt anything but that. Then I remembered what I have often told my own patients - that being brave isn't about being unafraid. When you aren't afraid, courage isn't even required. Bravery is about doing what you need to do in spite of your fear. So I am leaning hard into my fear and moving forward. My first surgery is in the morning, and again I ask for your good thoughts to guide the hands of my surgeons and carry me through whatever treatment and recovery is ahead. Life has been brought sharply into focus for me and I hope to come out the other side of all this stronger and more appreciative of life in all its messy glory.

"I'm changing, arranging,
I'm changing,
I'm changing everything,
Everything around me."

Friday, June 8, 2018

Home again.

So just briefly... we had a lovely time in Aruba, and made it back home (flight delays, blah, blah, blah) this morning instead of yesterday. But the travelogue will have to wait - we have things we need to do here this weekend to get ready for Monday's surgery and my son and his fiancée coming over Sunday. I will do the Aruba posts when I have nothing but time in a week or so.

Friday, June 1, 2018

Taking the surgeon's advice.

Prior to my diagnosis, we'd planned to take several days to go to the beach and our airfare and room were already paid for. As it happened, it was precisely when they'd have scheduled my surgery. We asked and the surgeon said, "Go." One week wasn't going to make a difference and I won't be going anywhere for quite awhile afterwards. So we're listening to her and heading out. Since the airline charges even for carry-on baggage, we are both taking only one "personal item" (a bag not to exceed 18 x 14 x 8 inches, including handles) and travel lightly. I plan to spend the next six days eating good seafood, staring at the ocean, and trying to get myself into a mental space for what's ahead for me. Back in a week.

Wednesday, May 30, 2018

More of the university gardens.

In addition to the hummingbird statues, we enjoyed just walking around the gardens and then out along the river. We walked about 4 miles that day and have made a commitment to walking some every day possible. The garden entrance has some lotus ponds, which had a variety of white and pink blooms.
A robin posed for me on this iron sculpture of roses.
The gardens are divided into areas, including a kitchen garden with herbs, vegetables and fruits.
There are ponds scattered throughout, including some with brightly-colored koi and others with large turtles. Later, as we walked along the river, we passed dozens of snapping turtles, sunning themselves on logs in the water.
I believe this is Quan Yin, the boddhisatva of compassion who represents the divine feminine. Yet another thing in the gardens, along with the carved wood hummingbird, that I had to refrain from stealing.
A juvenile squirrel caused its mother some turmoil, racing away and having to be corralled again. When we approached, they both darted up the trunk of a tree and then froze, pretending to be invisible.
In the children's section was a fairy garden, with tiny houses tucked in amongst the rocks and plants.
Nearby was an enormous iron grasshopper.
The kids' area included an exhibit of insect-eating plants. Because what child isn't fascinated by plants that can eat bugs? Okay, fine, I'm fascinated by it, too.
 No idea about this sculpture but it had some vaguely Celtic carvings and also reminded me of something you might see in Central or South American ruins. Maybe an altar of some sort.
Crape myrtle trunks. I planted a few crapes at my house and look forward to when they develop this beautiful peeled look.
Another young squirrel foraged near us while we sat on a hanging bench swing. When it finally found a nut, it ran up to snack in the branches above.
Back out by the lotuses again. May we all stay rooted in the earth and flower in the light.

Sunday, May 27, 2018

Good luck birds.

Surgery plan in place and a couple of weeks to wait, we decided to take part of our weekend to visit the new hummingbird exhibit, "Joyful Flight," at the university gardens.
Artists were provided with a wooden hummingbird form and could paint or decorate it as they wanted. Scattered around were signs with hummingbirds facts. For instance, a hummingbird's wings move 38-78 beats per second (more when diving).
This one looked a little melancholy in spite of its admonition to love life. Like me right now, I guess - I do love life, and I'm also sad.
I loved this ceramic-covered bird. It's hard to see but the pieces of ceramic that cover it are carved in patterns.
The sign for this one identifies it as a king, but when I saw it, I said, "Oh, I like the queen hummingbird!" I'm sticking with my interpretation.
This metallic-covered version includes spoons, chains and other odds and ends. The placement near an old truck and gas pump is perfect.
This bird was by a little pond. Weighing less than a penny, they are fast and can be aggressive. Indeed, I've watched tiny bold hummers duke it out over territory and mates and buzz my head when the feeder runs low. Hummingbirds will even use their long, sharp beaks like little shivs and stab each other in the throat when fighting. Now that's fierce!
At one with the trees around it on one side of this bird,
and decorated with delicate vines and birds on the other. Not all were decorated differently on either side and I appreciated the effort.
A modern bird, covered in CDs. As good a use for discarded discs as I've ever seen.
Another hummingbird fact - proportionally, they have the biggest brains of any bird. They can remember flowers they visited and often return to the same feeders each year.
This hummingbird speaks to the hippie in me, living life on its own terms. I especially liked the yarn fringe on his cap.
Cosmic hummer. A friend told me he'd be conversing with the Cosmos on my behalf so this is clearly his bird. In some traditions, hummingbirds are seen as healers, appearing to people in need.
Possibly my favorite, a hummer of carved and colored wood. I'd put this one in my garden if I could. Representing both fearlessness and lightness of being, these hummingbirds were a timely message for me. I will need all the courage and joy I can get for the months ahead.