Sunday, September 16, 2018
Saturday, September 8, 2018
"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.
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
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
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
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.
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.)
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.
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.