Thursday, March 28, 2013
Of the three kids, I worry most about how Evan's processing what's going on right now. Lauren is young and mostly obvlious. As long as I can hold her, she's fine, plus she's increasingly reliant on Matt and other caregivers, like Grandma this week, for her snuggles. I can talk to Tobin and answer his questions. But Evan's lost somewhere in between. When I cut my hair nearly a month ago, his reaction was, "Oh no, Mom, go look in a mirror! You have to fix your hair!" And then he teared up.
Evan warmed up to my initial hair cut, although he would tell me he didn't like my new hair from time to time. Yesterday, I got my hair cropped even shorter as it's started shedding rapidly lately. Before I left, I talked with him about it. I told him I was going to go get my hair cut shorter. He pointed out, "But you already did that." Then I tried to explain that I needed to cut it because soon it would be all gone and I would then wear all those pretty hats that arrived in the mail last week (made and sent by my dear friend Kari). I told him about the special medicine I was getting and showed him my port site, which he thinks is kind of neat. I explained how the doctors give me a special shot on that special "bubble" and it will make my hair go away but it will help me get better. Evan said, "Ohhh...can you pop that bubble?" I answered, "No that wouldn't be a good idea. It would hurt me." He replied "Oh, but your bubble looks like a race car ramp?!?" and showed me how he would drive a car over it. I took that as the perfect, happy place to end the conversation.
When I came home with the new, even shorter cut yesterday, Evan looked at me warily and declared, "I don't like it, Mom!" He kept his distance for about an hour. But later that night, I got plenty of snuggles and unsolicited hugs and kisses. So I think we're cool.
And as I understand it, that's the thing. Evan will take his cues from Matt and me. If we're okay, he'll be okay. I'm definitely sad and anxious about losing my hair but I try to put on a brave, happy face for him. I imagine he can sense my reservation plus it really is a dramatic phsyical change to watch his mama undergo. So I'm keeping him close and taking it one moment at a time.
Apart from my fretting, Evan is still living the fun life of an almost four year old. We've gotten into a routine of taking a walk and bike ride after his nap. He loves going on adventures with Mimi, Ashley, Grandma or whoever's in town helping us. He's very excited about going to Tobin's baseball practices and games. Matt's downloaded some fun counting and math games on his tablet and Evan enjoys playing those with Daddy before bedtime. Earlier this month, Evan got a spot through the public school lottery at Tobin's school's pre-K program! Yay! So we registered him and now he has plans to "go to Tobin's school when I am four!" In quieter times, Evan hovers around me, sometimes checking, "Are you okay, Mom?" I assure him I am, because, well, I am. One very special routine we've begun since my chemo started is we share an afternoon nap. He sleeps on his pallet on our bedroom floor and I sleep in my bed. I usually read on my Kindle while he plays in his bed a bit but eventually, I hear his light snoring, and that's my cue to try to catch a little snooze too. When he wakes up, if I'm still in bed, he'll climb up in there with me to snuggle. And we chat, usually about superheroes and riding bikes. Then he says, "It's time to get up now, Mom." I say, "It sure is. Let's go." And I follow him out of the bedroom into the rest of our day.
Posted by allison at 11:13 AM
Sunday, March 24, 2013
Yesterday was opening day of Tobin's third spring of baseball. This year he's playing real baseball--i.e., not T-ball--where the hitters hit off a machine and they keep score. I didn't get to go to his first game because I stayed home with a sick Lauren, but Matt reports he had a great time. Tobin didn't get a hit but made good contact on his two groundouts. He also fielded the ball well, with one put-out. We're looking forward to another fun season. Go White Sox!
Tobin even loves baseball practice. At the end of this week he had two practice in a row on nights when the temps dipped into the forties. On one of those nights, he begged Matt to stay and play on the field after practice was over. Matt asked what he wanted to do and he said something like, "I don't know, I just want to stay and play on the field."
Although he loves to read and, of course, play video games, Tobin indeed loves to just play outside. He plays soccer nearly every day at recess. (Sometimes his teacher joins in the games "on days he doesn't have meetings at lunchtime.") He's enjoyed some of the warm afternoons we've had lately and the extra energy of a visiting Mimi--perfect conditions for a little afternoon football.
Of course, I'm paying extra close attention to Tobin these days. He seems to be handling things well. Before I started chemotherapy, I let his teacher know about my diagnosis. Matt and I were heartened by his response. He sought advice from the school counselor and they decided just to wait and see; they didn't want to scare Tobin by approaching him to see if he wanted to talk about it. He observed that Tobin is a curious, confident kid who isn't afraid to ask questions. And then we all agreed that we'd just be in touch if he noticed anything unusual about his behavior in the classroom, and we would do the same if we saw anything at home. Tobin hasn't really asked me any questions. He has asked Matt what would happen if I didn't take the chemo medicine, concerned that it made me feel bad. Matt explained that the doctors think the medicine will make me better eventually and if I don't take it, I will get sicker. Tobin also sweetly offered that he could go play outside when I was feeling tired from the chemo. I tolerated my first round of chemo very well. My main symptom was probably fatigue, but with my mom and sister here to help when I was most tired that first week and Tobin in school during the day, I wonder if he noticed much. I'm also grateful that my kids really like their doctor and that they've been blessed with good health. Tobin hasn't spent a lot of time in doctors' offices over the years, but when he does go, he isn't scared and knows that medicine (e.g., antibiotics for strep) helps him feel better. I'm hoping that these positive experiences with doctors as well my not appearing too sick this first round help him feel good about what the future holds.
Tobin's been working on a fun project the last couple months. He's written his own comic: The Adventures of Color Man. He started with an origin story, Jack, which tells how Jack became Color Man when he encounted a fairy in the woods. Color Man battles villains such as The Eraser, The Pencil, The Red Monster and The Witch. He also has a sidekick named Color Dog. So far, Tobin's written eleven adventures in the series. If you come visit, he'll makes sure you read each one.
Posted by allison at 9:56 PM
Saturday, March 16, 2013
Within just minutes of getting my diagnosis, I also learned that I would have to stop nursing Lauren. Like her brothers before her, my baby girl was very happily nursing into her second year. I had no plans to stop anytime soon, unless she did. But with chemotherapy suddenly pending, that choice was taken away from us. In the grand scheme of things, abrupt weaning is far from the greatest of our challenges. But still. Having to end our nursing relationship so quickly made for acute mama heartache.
I found out about my diagnosis on a Friday. On the following Monday, I nursed Lauren for the last time as I put her down for her nap before heading out for my PET/CT scan. For the scan the medical staff basically gave me a radioactive agent intravenously and, as I had read they would, cautioned me against breastfeeding for 48 hours. I figured that I wouldn't be tempted to nurse Lauren if I thought my milk was, well, radioactive and that this was just as good a time to stop as any. Plus, Matt had taken the week off work and could put her down for her naps and even took over her bedtime routine, times when she would probably most miss nursing. My parents were in town, so there were ample fun distractions for her. She handled it all so well. She'd ask me to nurse first thing in the morning but I'd just tell her "Mama's milk's all gone" and she'd just suck her thumb and snuggle closer. By the end of the week, she stopped asking. I was relieved and sad at the same time.
I feel like there's been a lot of relief and sadness about my relationship with Lauren over the last month. Last Friday, I had my chemotherapy port placed and as part of my recovery, I couldn't lift anything over ten pounds for a week. Ugh, it's hard for me not to scoop her up--even with my mom and Matt around to help. I was relieved that I had help and that she quickly took to Mimi as her primary snuggler. Indeed, just a month ago, I kind of longed for some space from Lauren's seeming constant need to be on my hip. But the physical distance felt so strange and sudden that I couldn't help but feel sad about it. In the last day or two, I've been able to hold her more and that does my heart so good. All the while, I've been grateful that she's had her Mimi and Daddy around to love on her too.
As is her toddler prerogative, Lauren's world is full of such big feelings. She is overwhelmingly happy and adventurous. She loves being outside, collecting rocks, leaves, sticks and tree bark on walks. And more often than not, she prefers to run than walk--no doubt trying to keep up with her brothers on their bikes. But she also gets mad if things don't go her way. Say, if you remove her bib or hoodie when she's not ready, or insist that she sit in her high chair to eat, or take off her most favorite pair of shoes in all the world. She definitely lets us know when we displease her.
We mostly abide her displeasure by letting her flail about on the floor if she won't let one of us hold her. Given some space, we are usually back in her good graces in just a few minutes, often with the help of a snack, toy or book. She eats well and often and is showing no signs of becoming pickier. She loves to play with cars right alongside her brothers and is very excited about throwing and catching "balls!" Lead her to the bookcase in her room, and you will likely spend the better part of an hour going through her favorites. She's also learning to count to five and loves singing the ABC song. I feel like my baby's had to grow up a lot this month and I'm so very impressed with her grace and strength. And especially her smile.
Posted by allison at 2:12 PM
Monday, March 11, 2013
A couple hours ago I got home from my first chemotherapy infusion. Matt and I were at the hospital from 7:30am to 1:30pm. I had an appointment with my oncologist and then went to the infusion center on another floor. Everyone we encountered was so kind and helpful.
I feel mostly okay right now. I took steroids and anti-nausea meds already today to help with the side effects. That said, I decided to skip out on an after-school trip to the playground--mostly because I didn't want to have to be far from the restroom in case I needed to pee. (I've been very diligently hydrating.) I did seriously consider going because I kind of wanted to be outside watching my kids play on this gorgeous almost-spring day. But I figured a better option might be a short evening walk if I'm feeling up to it. I know I'm going to be faced with those choices a lot in the coming months as to when and how I expend my energy. My heart wants to just keep going as long as I feel fine, anticipating that there are going to be a lot of times when I don't feel fine very soon. My head counters that I need to be careful and wouldn't I be better off on the couch, "working" on clearing my DVR?
Looking ahead is hard. It's a long road and there are so many emotions in play today as we take what feels like the first huge step on this journey. So I have to just focus on today, sometimes just right now: sitting in a quiet house waiting for my kids, Matt and Mom to burst through the door with all their energy and noise. Then we warm up something made by a dear friend for dinner.
But looking ahead a little bit is helpful for me. Chances are I'll feel okay today but then I've got a pretty strict regimen of anti-nausea meds and steroids for the next three days. My doctor expects my nausea side effects to be most intense on those days, hence the schedule. Then I'll manage symptoms (mainly nausea and fatigue) on an as-needed basis. I hesitate to anticipate too much because I honestly don't know how it will go, but I'll be taking notes when I can, trying to determine if there's a pattern to when I feel better or worse. Or at least I think I will. I know I plan to spend lots of time in my bed probably watching Netflix while I ride this out. My next chemo infusion is scheduled for two weeks from today.
So that's the micro view. The macro view is this: there's now something in my body killing cancer. It's good to feel like I'm doing something instead of just waiting for whatever's next.
Speaking of doing something, if you're reading this, you've done a lot for my family and me. You have loved us so well--with your kind words, prayers, caring thoughts and food. And what I'm finding, each step so far, is that love and gratitude push back against fear and sadness. Those feelings remain, but they're not at the forefront like they were two weeks ago. Thank you.
Posted by allison at 5:14 PM
Saturday, March 02, 2013
I cut my hair today because I start chemotherapy soon.
This has been a place where I've shared stories from our overwhelmingly happy life. Mindful of these blessings but with a heavy heart, I need to share how our story is unfolding in a most unexpected way.
On February 22, I found out I have breast cancer. My journey to diagnosis took several months and seems to have been complicated by the fact I was still nursing. For a while, the doctors I saw thought my symptoms were related to blocked milk ducts and a possible lactation-related infection. A vigilant surgical oncology nurse practitioner pushed for more aggressive imaging and a radiologist finally said I should have a biopsy to rule out cancer. Unfortunately, it was cancer.
Because my breast had been symptomatic for several months, I was very afraid that the cancer had spread. We already knew it had spread to a biopsied lymph node under my arm. On Wednesday, we were relieved to find out it has not spread beyond that. Matt and I met with a team of specialists at UNC Cancer Hospital to discuss a treatment plan, and we received (relatively) good news.
Here is what we know right now:
- A PET/CT scan showed no spreading of the cancer beyond what we knew from the pathology report.
- The type of cancer I have is invasive ductal carcinoma (IDC), which is the most common type. About 80% of all breast cancers are IDC.
- The cancer is estrogen- and progesterone-receptor-positive, which makes it in the words of my medical oncologist "very treatable." As we understand it there are very good drugs for treating this kind.
- At least one of my lymph nodes is positive for cancer.
- I will start with chemotherapy, most likely as soon as March 11. I will receive 8 treatments over a 16-week stretch, with a week off between each treatment. There are several reasons why I will have chemo before surgery: (1) because of the lymph node involvement, I would have to have chemo after surgery anyway; (2) chemo buys us time for my breasts to "normalize" post-breastfeeding, which in turn allows my doctors to "see" the cancer in my breast better; (3) chemo may shrink the cancer and (4) chemo also provides time for my genetic testing to come back.
- Surgery will follow chemotherapy. Ideally, by the time I finish chemo the doctors can better assess the size of the cancer to make their recommendation of lumpectomy versus mastectomy. The results of genetic testing might also affect my surgical options.
- After surgery I will have radiation therapy, which aims to kill any cancer cells remaining after surgery.
We have been deeply touched by the immediate and overwhelming way in which people have reached out to us. We know we are not facing this alone. We feel very loved.
Our kids are happy and necessary distractions. Life just goes on for them, and we're making every effort to keep their lives as normal as possible. At nearly seven, Tobin knows that something is going on. We've been talking to him about it as we can. Right now he knows I have a sickness called "cancer" and I have doctors who are working hard to help me get better. We've introduced the idea of chemotherapy and how it might make me extra tired, nauseated and change my hair. He seems only mildly interested in it for now but we've encouraged him to ask questions if he has them. Twenty-month-old Lauren has handled abrupt weaning from nursing very well--better than me in fact. It was especially helpful to have Matt, Ashley and my parents around for support and distraction. And three-year-old Evan is very excited to be hosting so many of his favorite out-of-town people. We know things can and will change for them, but we are grateful for how things are right now.
We will likely keep you updated right here at this blog, where we always have. I like the idea of sharing this story alongside our happier ones because together they make up our life. I wake up each morning wishing things were different, but if this is what we have to face I'm glad we're in it together and, for the time being, we know what we can do about it.
Before today, I hadn't cut my hair in over a year. It's as long as it's been in ten years. When my hair stylist asked if I was ready for her to cut off my nearly foot-long ponytails, I said, "Yes." It occurred to me that cutting my hair off was one of the least scary things I've done in the last month. (In case you were wondering or planning a dramatic hair-chopping yourself, I want you to know I'm sending my hair to Locks of Love. Pantene Beautiful Lengths accepts donations of 8 inches if you don't have the 10-inch minimum for Locks of Love. Also, my salon cuts hair for donations free of charge; yours might too.)
Here's hoping I'm writing happier stories here soon enough.
Posted by allison at 9:10 PM