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.