Saturday, October 13, 2018

It’s poison, I tell ya, it’s poison!

I'm one of those people who needs to know everything I can about my own healthcare. I have patients who tell me, "My doctor put me on a new medicine. It's a white pill. I'm not sure how many milligrams." That just blows my mind. How do you not know what medication you are taking? I'm home now after my third chemo round and waiting for the neulastin to infuse tonight. And bracing myself for the string of sucky days that will follow. In the meantime, I'll give you a lay-person's overview:

My own particular chemotherapy regimen is just two chemo agents once the pre-medications (antiemetics, corticosteroids, anxiolytics) are in. When I first told my younger son I'd be on Cytoxan and Taxotere he said, "Wow. Kind of scary when they include the word 'toxin' in the drug." Cytoxan is a trade name for cyclophosphamide and was named because it's a cytotoxic drug. Cells go through a cycle of growing, dividing (mitosis), resting, and then starting over again. Normally, cells know when to stop that silliness, but not cancerous cells. They are marked by out-of-control growth, rapidly cycling through the phases over and over again. That's where chemotherapy comes in. Cyclophosamides are alkylating agents that alter the cell's DNA and slow cell growth. They act on cancer cells particularly during their resting phase, leaving them unable to replicate. The more rapidly a cell divides, the more useful a chemo agent is. The downside, of course, is that they also go after other rapid-growth cells like those in bone marrow, hair follicles and the mucous membranes of the mouth and gut. Yay.

Anyway, there is an interesting history behind the development of these drugs that goes back to World War I and the use of the first chemical weapon, mustard gas, by the Germans. It was nasty stuff, able to be absorbed through the skin so that gas masks weren't adequate protection. The troops hit by sulfurous clouds of mustard gas liquid would, at high enough doses, become blind and develop ulcerating necrosis of the skin. If inhaled, hemorrhagic pulmonary edema developed. As you can imagine, death from mustard gas was a miserable affair. The soldiers who didn't die went on to experience nausea and vomiting, hair loss and suppressed immune systems. Sound familiar?

So during WWII, Nazis again used mustard gas. Because screw the Geneva Convention prohibiting chemical warfare. A couple of pharmacologists thought, "Hey, if this stuff can kill people, maybe we should use it to fight cancer!" You can't make this shit up. And it did work, to an extent. Unfortunately, it was also near-lethal and only temporarily effective. But chemotherapy was born and nitrogen mustards like the Cytoxan being infused into me every three weeks are still being used.
And then there is the Taxotere, one of a group of chemo agents called taxanes. The first was paclitaxel, derived from the bark of the Pacific yew tree (the genus for yews is Taxus, hence the name) in the late 60's. Apparently it's a relatively rare tree, and so twenty years of research later, another agent, docetaxel, was synthesized from the needles of the more common European yew tree. Docetaxel is more effective than paclitaxol but also more toxic. That's why on my first round it was infused very slowly to make sure I would not have a reaction to it. Taxanes work by binding to the  microtubules which control the communication within cancer cells, causing mitosis to be inhibited.
So there you have it, conifer needles and sulphur mustard. Kind of sounds natural and outdoorsy, doesn't it? Okay, no, no it doesn't - it is definitely no picnic. But with any luck the combination of a microtubule inhibiting taxane and and DNA-disrupting alkylating agent will do its job on any rogue cancer cells in me without taking me down in the process.

Saturday, October 6, 2018

Who are the people in your neighborhood?

We live in an old neighborhood with a range of houses, both in style and price. Little post-war ranchers like ours, old brick houses from early in the last century, newer stone houses. I love the variety and much prefer it to living in a cookie-cutter suburb. But this house made me gasp when I saw it. We were on our way to meet up with two other couples right after it had been painted. It was the topic of conversation when we got to the brew pub: "My God, did you see that aqua house? What were they thinking?" and "It's too bright even for Jamaica!" and "Whoever owns that place HAS to be colorblind!" On the one hand, they have the right to paint their house whatever color they want. But I had to feel badly for the folks across the street trying to sell their house. Good look with that now.
My theory is the owners got stoned one day, found the paint on the clearance shelf, and just went nuts. Why else would they slap paint onto parts of the window frame and even the glass of the windows? And the benches are a weird mix of sage green, aqua and some dark green, applied apparently at random. There's also a bright blue bench on the other side of the house.
My favorite thing is that they've chosen to accent with bright yellow, including a Hotei statue (what some people call a Laughing Buddha), guarding the steps alongside a tiny American flag. I'll give the home's owners this - it's eye-catching. No one is going to miss this house. Except, of course, my color-blind husband. It looks normal to him.

Sunday, September 30, 2018

Even chemo doesn't stop time ticking on by.

Is it just me, or is it a little creepy that The Google noticed my birthday on its homepage? At any rate, whether I wanted to notice it or not, another birthday rolled around. My husband's did, too, during my first round. We felt pretty uninspired for both.
This is from my 5th birthday. We'd gone to Panama that March and my grandparents' housekeeper, Josephina, had made us kids traditional Panamanian costumes. That trip made an indelible impression on me. I was 4 ½ at the time and I remember walking in the jungle with my Granddaddy and seeing spider monkeys and looking through the open air market with my Gangeen and asking what the turtle eggs were. There was also a gardener named Balbino who was stung by a scorpion while we were there. It was an interesting trip. Anyway, in the photo, I'm the one looking ambivalent on the left. I guess I've always had mixed feeling about birthdays. My big sister looks unimpressed but my little brother was totally in the spirit! He looks like he's about to break into a flamenco dance.
Friday when I was feeling semi-human again, my younger son called and said he had the stuff to make bottle terrariums if I thought I'd like to do that. He came over bearing a couple of whiskey bottles, pea gravel, potting mix, and coconut coir. We scouted around in the back yard for moss and small plants, then assembled the terrariums, adding an earthworm he'd dug up to each. When we were done he said, "Yours looks good, Mommle."  It reminded me of projects we used to do when he and his brother were young, but with him in the parent role. Mostly, though, I love that he'd come up with something he thought might lift my spirits.
Later that day, after he'd gone to run errands, he met up with me and my husband for a pint at a local beer market. Hard cider for him, an IPA for my husband, and a pale ale for me. The weather was great for sitting outside - very lightly overcast, breezy, and in the 70's. (Incidentally, while I like beer as much as the next person, questions about it don't make me get defensive and say over and over that I like beer, become belligerent, make up pretend drinking games, or sniff like I'm coked-up. Just saying.)
On Saturday, my birthday, we let Hödr in for a bit to doze in a chair while we had asiago cheese bagels and lox for breakfast.  She was so happy to be inside she didn't even harass us about not getting any lox.
The foul taste in my mouth was completely gone and my appetite had returned with a vengeance. I wanted carbs and fat. I had a bowl of lobster bisque followed by fettucine alfredo with chicken and spinach. There's a freedom that comes with knowing it's my job right now to eat as much as I can.
It was just blissful to sit outside both days, soaking in the warm air and enjoying the taste of things again.
We watched a silly movie that night - "Heaven Can Wait" - a ridiculous 1970's movie I'd missed when it came out. Which is odd since my Dad was a dyed-in-the-wool Rams fan (see what I did there?) having gone to UCLA for a year before going to the Naval Academy. Oh who knows, with this chemo brain it's possible I did see it back then and just don't remember. We had a snack of cheese and crackers, raspberry tarts, and champagne. Remember I said I was going to live normally between rounds rather than fretting about the tough times ahead? Well, this is it. Cheers.

Thursday, September 27, 2018

So planning for this round to be better may have been wishful thinking.

I thought if I knew what to expect and how to medicate in advance, I'd do better this round. You know, because I am that capable of warding off bad symptoms through my keen intellect and strength of will.

"Ha ha!" replied the Universe.
I was, in fact, able to ward off the bone pain by taking claritin and aleve in advance and through the first several days. And I'm grateful for that. But otherwise, this round was worse. I'd been warned that the effects of chemo are cumulative and each round is generally harder. Turns out, that's true. This time I had a few really bad days where I did not leave the couch unless I had to. I couldn't focus enough to read, so I've been watching a lot of movies and television shows on Netflix, choosing things that don't require much attention. And this round, I had nausea for the first time. Yay. Thank goodness that among my arsenel of prescription meds, I have bottles of zofran, phenergan, and compazine. And I'm so bloody tired. It's like slogging through mud.

But the side effect I like the least is the weird taste in my mouth. And by weird, I mean putrid. It tastes like something died in my mouth and start rotting. No amount of tooth-brushing or saltwater or biotène rinse takes it away. As a consequence, most food tastes really bad. Even plain water tastes fetid and water has no flavor at all. I would think of something I might be able to eat, my husband would make it for me, and I'd take a bite, gag and throw it away. That was fun for both of us.
I'm climbing up out of the pit now and resigning myself to this happening with more intensity each of the next two rounds. But I'll get through it. Even if I have moments in the next round where I think, "I can't do this anymore." I will finish. And at least I have the view of my yard and feeders and the small rascals who visit them.

Sunday, September 23, 2018

Second verse, same as the first.

Round 2 was Friday. Two therapy dogs made their way through the crowded waiting room, patiently stopping and soaking in the petting and compliments. The other was a fluffy white Great Pyrenees wearing an orange tank top. Yes, football game day here. My oncologist had on an orange tie.

The routine is blood work first. I turned my head and held tissues over my eyes until the kind nurse was completely done accessing my port, even though this time only hurt for a second. She told me I did great and I shrugged. She said, "No. Look at me. LOOK at me (pointing to her eyes). You did fantastic. Say it." I was laughing by then and dutifully said, "I did fantastic." I quickly offloaded the bag of blood samples she'd handed me to my husband so I wouldn't have to look at them as we walked them to the lab. Fortunately, my WBC was within range, so I was good to go for that round of chemo.
Next up, the visit with my medical oncologist. He asked how things had been going, noting that he hadn't heard much from me in between rounds. He said, "You're smiling, you must be feeling okay!" He also told me he would be out of town three Fridays from now and and offered a few options: I could push the next round back to the following Monday, wait an extra week if I wanted to keep it on Fridays, or keep my scheduled appointment and see one of the NPs. I told him I'd like to push on through and stay on schedule. He said he didn't blame me and since I was doing well, I could skip seeing anyone and make it a shorter visit and then we'd meet again in 6 weeks. I liked that plan. He also asked if I felt like the ativan in my IV was adequate, adding, "Because I could drug you through to next Tuesday." That made me laugh, but I told him it was fine at the low dose - just enough to relax me a little.
Because during chemo I eat lunch, I talk a little to my husband, but mostly I doze or look idly around the room. I did plug into my iPad briefly to listen to music while they tried several times on both arms to get one man's IV started. This is nightmare material for me and I can't watch or listen. They were able to infuse the taxotere a little faster this time because I hadn't had any allergic reaction the last time. The total infusion was only three hours instead of four this time. The snap of the neulasta injector still surprised me. I'm guessing I'm going to curse under my breath each time. But I am learning and when it went off at home last night, instead of just lying there feeling the sting of it, I watched old tv shows to distract myself. Afterwards, my husband had made new potatoes with sour cream and caviar and it was nice to have a treat waiting.

I know my worst days for this round are still ahead, but I also know I'll get through it. The weirdest part? Seeing my balding head in the mirror and thinking about how much I look like my Dad.

Sunday, September 16, 2018

What we do when the days are good ones.

I was really starting to rebound by Friday so we decided to get out a little this weekend. Saturday, my husband and I went to a brewery with a tree-shaded outdoor beer garden and had a gooey gruyère and gouda grilled cheese sandwich on sourdough with a couple of pints - one of their IPA and one pale ale. My husband buzzed my hair down to next to nothing last weekend so now it's so short I'm self-conscious about it. I wear a cap when I'm out or at work. One of my partner's patients asked him if I was Muslim. I found that really funny. And I don't bother trying to cover up my port. It's just part of me until the chemo is over. I'm sure people wonder about it though because it looks weird - the big lump and jagged scar, then the tube that snakes under my skin over my collarbone, up to the bottom of my neck and into my jugular. Sometimes I catch sight of it and am taken aback.
See that left foot carefully not touching the bathtub? Still not working. The neuropathy causes my foot to sense anything cool as icy cold. Standing in the shower is impossible for me, so I take baths. And if I'm going to do that, it's going to be a lovely lavender-scented bath with candles. I saw my PCP last week because it had been a month with no improvement and he has put in a referral for neurosurgery. And I go see my plastic surgeon next week for a follow-up from the reconstruction and I'll ask her about it, too, since the problem happened in surgery. I would just like to be able to walk and stand without intense pain. By the way, I tried the CBD oil for a few weeks and took it religiously. Didn't help with the pain or tingling, didn't help me sleep, didn't make me any calmer. Nothing. I stopped taking it when I started chemo. When I got out of the bath and the water level dropped, I saw it - a ring of my 3/4 inch hair. So it's finally started. I'd read that hair usually starts falling out in earnest by day 14 or 15, but this is day 17 for me and it's the first hint of my hair starting to eject. Honestly, I'm relieved. If the poisons are killing my fast-growing hair cells, it means they are also killing any rogue cancer cells that might be in me.
Today has been mostly overcast with light rains. It only got up to 73 today, in contrast to the near-90's we've been having. We decided to get out again and this time we met up with two other couples in our neighborhood at another brewery nearby. Interestingly, both of the women in these couples have had breast cancer, so they've been a great help to me. It was good to sit in the breeze, talking and laughing with friends. I know that in another five days I'll start the downward slide again, but I also now know that it gets better and I can have fun during those windows. I'm going to live life normally during those times and enjoy whatever good days are given to me.

Saturday, September 8, 2018

Jagged little pills.

Prior to starting chemo, I did a lot of research about side effects of taxotere and cytoxan and neulasta. And I was careful about which websites I visited. So when I found a publication on the NIH website about the amino acid L-glutamine and its apparent protective effects, I read it throughly. Particularly the section on glutamine supplementation in chemotherapy. The study showed some neuroprotective effects for both cyclophosphamides and taxanes. The studies conclusions included this gem:
"Supplementation with this inexpensive dietary supplement may have an important role in the prevention of gastrointestinal, neurologic and, possibly, cardiac complications of cancer therapy. These complications often negatively affect the quality of life and may also lead to changes in therapy, which potentially alter efficacy. Glutamine may also improve the therapeutic index of both chemotherapy and radiation, increasing cytotoxicity while concurrently protecting against toxicity."

Additionally, women on a chemo support board recommended biotin for nail changes (the hair is going regardless). I went searching again. Another NIH study said antioxidants and vitamins don't decrease the efficacy of chemo. The evidence is unclear about whether biotin can actually help but it does not seem to hurt.

So did I rush out and buy the two supplements? No, I did not. I sent a message to my oncologist about what I read and asked if he was on board with me taking them. When I got an affirmative answer, THEN I bought them. Glutamine was trickier to track down, so I ended up at a health store, with shelves stocked with all manner of pills and mystery potions. When the woman behind the counter found out why I wanted them, she pushed pamphlets on me with information about some supplement combo. She told me that "No matter what they tell you at the chemo center," everything in it was safe. Well, that sounds to me like practicing medicine without a license. I left with just the glutamine, the pamphlet with its crazy ingredients and wild claims, and a vow never to go back.

Cat's claw, sheep sorrel and slippery elm, anyone? Yeah, I'm not taking the word of a shop clerk over an oncologist either.
So the first couple days after chemo weren't bad. Even the infusion from the onpro neulasta delivery device on my belly only stung a little for about 15 minutes of the 45 it took to empty into me. When I rolled through the next day without a hint of bone pain, I was optimistic. And then day 4 kinda sucked. No nausea, ever, but they are really good these days with medicating that. But fatigue, and an upset stomach, and headache. That night I didn't fall asleep until after 4 am. Day 5? It didn't kinda suck, it really sucked. Now I felt like I was slogging through mud, my belly twisted into knots, mouth sores developing, and my thigh and hips bones began aching as they started to churn out new white blood cells. I'll be honest, it was a pretty weepy day for me.

Fortunately, I turned a corner the next day and I'm learning. I have my own little pharmacy now, both prescription and oncologist-approved OTC meds and next time I'll know what to take in advance. Like doubling up on my usual loratidine and throwing in aleve ahead of the bone pain. But the effects are cumulative and I already feel myself bracing for the next round.

Swallow it down (what a jagged little pill)
It feels so good (swimming in your stomach)
Wait until the dust settles
You live you learn, you love you learn
You cry you learn, you lose you learn
You bleed you learn, you scream you learn
You grieve you learn, you choke you learn
You laugh you learn, you choose you learn
You pray you learn, you ask you learn
You live you learn

- Alanis Morissette

Thursday, September 6, 2018

Radio silence.

Days 3-5 thoroughly sucked. And I'll get to that in another post, but right now there is something else on my mind: my family. If you aren't in the mood for a rant, avert you eyes now.

I have a great support system. My husband is phenomenal. My children warm my heart. And I have friends who have gone above and beyond for me. But... I still long for support from the family I grew up with. Right after my first surgery, I got cards from most of my siblings, flowers from my mother, and a gift from my stepmother. And after my second, flowers jointly given my two of my sisters and chocolate-covered fruit from my brother. And trust me, I appreciated all of that. And it's true that all of those people have said they wished they could do something, to let them know how they could help.

But here's the thing - none of them live close to me so I don't expect them to actually be at my house helping. And I don't like to ask for help anyway. I'd cut my own throat before I asked someone to send me something, no matter how much I might like it. But I did let everyone know that it helped me to have people check in on me. Did they? Rarely. And when I'd reiterate that I needed to hear from people, I'd be told that no one wanted to intrude. Each time, I'd say again that it wasn't an intrusion to check in with me, that I needed to know people care. And.... [crickets]....

If I text or email one of my siblings, they'll answer. But rarely does anyone contact me first. When I emailed all my sibs to let them know I would have to have chemo, my stepmother felt moved to message my husband and ask why I'd excluded her. In fact, my last message from her had been, "Would love to be able to help but I know some things you just have to wade through yourself." Not exactly an encouragement to stay in touch. So I let her know that I didn't have the energy to exclude anyone, that I was mostly responding when people reached out to me. And then yet another round of an insistence that she just didn't want to intrude, me saying caring about me wasn't an intrusion, and no response on her part.

The most recent example is my chemo. Two sisters I heard from last when I texted them to tell them chemo was going to start in a few days. They responded to say they'd be thinking about me. Nothing since. Another did wish me luck on the day of. Nothing since. And another did check in the day after, but hasn't reached out since. Nothing from my stepmother, and my mother checked in after I got my port placed, responded to a text I sent her and then nothing until yesterday. My mother finally texted to say she'd been thinking about me. I said I hadn't known, and she told me she'd been thinking of me constantly. I texted back that somehow, everyone's thoughts don't actually make their way to me. She ignored that and said she hoped it wasn't awful. I said it had been. She texted, "I've been reliving those days." Which makes it all the more astounding. She remembers her own cancer but can't find it in herself to keep in touch with me at times she remembers were hard. I read that text exchange to my younger son when he came by to visit yesterday and when I finished he said, "But... you're living it NOW." Yeah. How is that a 21-year-old gets what a 79-year-old doesn't?

And I know, none of my siblings have had cancer. I probably wasn't as attentive as I could have been when my mother had breast cancer 25 years ago. I had a brand new baby and a new career and was busy. I understand being busy. But even in the midst of that, I know from my journal that I called her regularly, that I took her grandson to visit when she was doing chemo, that I bought her a cashmere hat to keep her head warm. So even without personal experience of cancer, I knew it was important to make the effort to stay connected.

I've thought and thought about why my family is so disinclined to be involved in my cancer. Maybe for my sisters there's some feeling of whoa-that's-too-close-for-comfort? Maybe not wanting to think about it happening to them? Maybe people perfer asking if there's anything they can do in lieu of actually doing anything? Maybe my cancer is just a blip on the radar? Maybe they figure I'm just the story they'll tell someday about how they had a sister once who died of breast cancer? I don't know. I'm tired of thinking about it and I'm tired of suspecting that my family feels that if they "like" my status update on facebook, that absolves them from the need to contact me personally.

So here's what I'm doing. I've stopped posting on facebook, for one thing. If anyone in my family wants to know how I'm doing, they all know how to contact me. Because I'm also not going to be texting or emailing updates. If no one is asking, I'm assuming they don't really want to know. And I'm turning my focus, as much as I can, to the good.

My husband. My god, did I hit the jackpot with him. He's running on empty these days but endlessly devoted to me. My sons. My older son and I text and he's talking with me again about his life and his new girlfriend. My younger son, a boy with a heart as wide as the world, who texts frequently to see how I'm doing and visits every couple of days. Oddly, one sister-in-law. My husband's brother's wife, who I've met only a few times, has jumped in with a vengeance. Both her parents had cancer and she has made a point of texting me every few days when things are going well and daily when they aren't.  Even my ex-husband, who checks in with me every couple of days to see how I'm doing. My friends, near and far. I get emails and texts and feels so supported by them. I've gotten small gifts in the mail from people I hardly know which provide a bright spot in what is often a difficult day. The friends who are local have ferried me to appointments, texted, brought gifts and food. One friend-of-a-friend talked to me on the phone when I was first facing chemo, then we met for breakfast and then, amazingly, she took me for my port surgery, hugged me before they took me back and was there when I woke up. She helped me dress and then stayed with me at home until she was sure I'd be okay. Another friend brought me a cap for when I lose my hair, another sat with me through an appointment with the first oncologist, others brought us dinners. In fact, a friend stopped by while I was writing this because on a visit home to Georgia she'd passed a boiled peanut stand and knew I liked them. All wanting to know how I'm doing, all willing to hear that it's hard. Blessings, every one of them.

So yes, I know. And I'm deeply grateful. And still, I can't help but wish the people who I've loved and known the longest were there.

Saturday, September 1, 2018

And so it begins.

First up, on Wednesday, was the port placement. I had a very kind nurse who used a numbing shot before inserting my IV, which really helped. And she also wrapped me in three toasty blankets. I'd been told it was done under "conscious sedation," an idea that made me uneasy. When my breast surgeon met with me beforehand I asked how far out I'd be. "Completely!" she said, "And you know why? Because I like to do things they way I'd want them done to me and I'd want to be completely out for this." Whew!  I was still awake when they wheeled me to the OR and had to scootch myself onto the operating table and watch as they strapped me down. Fortunately, that's the last thing I remember. I woke sporting a powerport, with a cannula that runs up over my collarbone and into my jugular vein. Not something I like to dwell on but I'm glad it's there. I was covered in tape the first two nights, which made moving my head difficult, but now it's not too uncomfortable. I worked the next afternoon, a dumb decision. When I scheduled people for that day, I just wasn't thinking about how it was surgery.  But I crawled through and got to Friday:
First round of chemo. I've marked each one in my schedule book so I can count them down. My husband worked a couple of hours that morning and then got home in time to get us to the cancer center. I will not lie, I was scared. Really scared.
I'd covered my port site in EMLA cream but the nurse told me it was so newly placed it would still be tender. And ouch! Yes it was. But very quick. They drew blood first through it and left the apparatus in place for the chemo. Then it was off to meet with my new oncologist. We reviewed what would happen, he answered my questions, and then he smiled and said, "And now we proceed."
Proceed we did, to the "Daisy Cove," one of the six flower-named chemo rooms. I got a big comfy recliner while my husband had to sit in a regular (but at least padded) chair. I brought my own soft fluffy blankets and had them put one of their warmed blankets over it. This was my set up, which I could pull to the bathroom with me if needed. At the moment, they were pumping in Taxotere (docetaxol). After that Cytoxan (cyclophoshaminde). First in were just fluids, ativan, and benedryl. We ate lunch during the four-hour infusion and a couple of good friends stopped by to visit. Mosty, though, I listened to music and slept.
In fact, they had to wake me to unhook me and put on the neulasta patch and "on-body injector." After a few minutes, I felt a sharp pinch as the needle went in and back out, leaving a tiny cannula inside me. It felt like someone snapping me hard with a rubber band. And now it sits on my belly, flashing a green light at me every five seconds. Apparently 27 hours after chemo (so in an hour or so from now) I'll hear a warning set of beeps and then it will spend the next 45 minutes infusing neaulasta in me, to stimulate the large bones in my body to start making white blood cells to replace the ones the chemo has killed off.
In the meantime, my husband gave me my pre-bald haircut. I felt like it would be less jarring to lose my hair from a very short haircut than from long. And you know, I kind of like it. Feels very light.

I saw a movie once, D.O.A., where the main character was a college professor who was poisoned with something for which there was no antidote. This isn't that dramatic of course, but the poisons are in and I'm told the worst days are usually days 3-5. So now I wait.

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.