Every Night After and Every Day Since…

Anna died at 5am on Saturday, June 8. I have to remind myself of this fact most days.

I went back and read a few of her posts here with the self-imposed expectation I could try to write this final post with a similar spirit and voice. But then I laughed. I’m not as good of a writer as Anna, nor am I in a place where I can write with the levity (it’s all relative) and perfect wording she had in some of these posts. I miss all of that about her and all of her.

In the last weeks of May, Anna had increased difficulty breathing. While this was initially thought to be due to treatment-related inflammation, her breathing worsened and by the time she was admitted to the hospital, her medical team suspected either pneumonia and/or tumor growth of her lung metastases.  When she leaned forward, she could take only shallow breaths and when she leaned back, she’d cough. Her breathing became so labored and her body was working so hard to take breaths; her body would soon be unable to sustain this level of work. She was uncomfortable, exhausted, and needed a break. The decision, with her buy-in, was to be placed on a ventilator, which would breathe for her, give her the reprieve she needed, and buy some time for antibiotics and chemotherapy to hopefully address the possible root causes.

The ventilator took away her voice, but it did not take away her ability to write. She would motion for a pen, and she’d write what she needed, what she was thinking, and everything else, in complete sentences and with appropriate punctuation. Classic Anna. What was practical in the moment is now a cherished, one-sided transcript of her final week. I’m grateful for those writings.

After being on the ventilator for five days, we learned that her condition was not improving. The options were comfort care or longer-term ventilator support to “wait out” the oral chemo, in the chance that it would be effective enough to restore her lung function. Faced with the reality of not returning home, Anna was clear this is not what she wanted: for her, living on machines was not living. She wanted to be home with Sam and me more than anything.

Anna wrote us personal, hand-written notes and was able to say good-bye to her parents, her sister, Sam, and me. She asked me to stay with her that night they took her off the ventilator. She and I had almost 90 minutes of uninterrupted “conversation” before she went to sleep on that Friday night. I held her hand. I didn’t leave her side. I was there for the journey only she could be on and couldn’t have been more present (with the exception of picking up my phone to snap the photo below).

I am sharing all of these details because I want everyone who knows Anna to know that Anna’s death was beautiful. It was sad. It was painful (for us). It was painless (for her). It was her decision. It was an experience we should be comfortable talking about. And I am so grateful that we got to say good-bye. That is a gift and privilege very few of us get to have in our loved ones’ final hours. This can also serve as a reminder to let everyone in your life you love know it. The experience of death is important, and outside of Anna’s birth and her delivering Sam into this world, I can’t think of a more intimate and beautiful thing I could have been there for with her.

I’m understanding that our family’s story is kind of tragic. I look at two empty chairs at the dinner table every night now as Sam and I hold hands to say prayers. Exactly three years ago at this time, Anna was pregnant with what would have been a daughter, Lily, and we were bracing for the roller-coaster that comes with being a family of four. Anna, Sam, and I have had years now to grieve our losses along this journey, some incremental some monumental. We haven’t shied away from many hard conversations and done what we can to help one another with our own grief journeys (I’m realizing I’m still not used to writing some things in past tense). So, in Anna’s final written words, it actually wasn’t surprising when she reminded me that Quincey’s heartworm pills needed to be refilled; that also lets you know how lucid she was. It also wasn’t surprising to me that she and I had little else to say. We’d said it all. We were aligned during and about these final days – even if we didn’t know how or when it would happen.

We didn’t need spoken words. And if you know Anna, she could say it all with her eyes and never needed to over-explain anyway.

I love you, Anna. I’m going to do the best I can to be a good dad for Sam and continue to be the good human you’ve helped me know I can be. I carry your heart with me.

“Be kind. Be generous. And seek fun.” – Anna, June 7, 2019

Anna’s memorial service will be August 10, 2019 at United Church of Chapel Hill at 1 or 2pm. If you need more details or just want to reach out, feel free to call, text, or email me (tim.schwantes@gmail.com).

Tim’s short syllabus for grief, loss, death, and dying (I’m not an expert, but these were my guides along the way):

This and that

Wow! I knew it had been a while since I’ve posted, but didn’t realize how long! My intention when I started writing here was to write without editing – to let the words and thoughts flow in a way that I have long found it difficult to do. I have always struggled with the idea of a crappy first draft. I want to get it right, right away. Or at least close enough to right to need only light editing. So I get stuck on sentences and can’t move on to the next one until the one I’m working on makes sense to me. I’ve tried to just write here, and mostly I’ve done it. But lately I’ve realized that I’ve been doing so much pre-writing in my mind that when I finally sit down to type I’ve already edited to some degree. And all the pre-writing seems to be getting in the way of actually writing.

All that to say that I’d like to get into a more regular habit with this space, rather than waiting for some big medical news to prompt me to update. Writing helps me get out of my head, and I enjoy it. And nobody here is obligated to read anything I post, right, so I should just do it. Here I go.

Since the last post, I’ve finished both the exercise program and the meditation class. I joined a gym in early April and had a couple of great weeks enjoying doing what I could. Meditation….not so much. Nearly every night when I fall asleep I think, “tomorrow, I’m getting back on the meditation train.” The intention is there. And I have been using some of the basic mindfulness skills, which continue to be really helpful, especially during some of my various hospital appointments.

Medically, things have been so-so. I had multiple follow-up appointments related to several metastases in both of my breasts, some of which are really bothering me. After multiple ultrasounds, mammograms, and biopsies to establish that they are “just” NET mets, I met with a breast surgeon. The short version of that is that surgery is not an option at this point, as I’d have to come off my immunotherapy treatment. We will revisit it down the road if needed. As much as I want less cancer in my body, I had already gotten myself pretty freaked out about having a mastectomy. I mean, that’s kind of a big deal. Also I was going to be really mad if I needed surgery now and it got in the way of my summer. That may sound petty in the grand scheme of things, but dang I want a good summer after last year’s ridiculousness.

I had some great stretches of feeling well and having good energy and was even sometimes getting up in the morning with Sam and Tim like a normal person. But I got knocked down hard during our spring break trip to Utah – good timing, no? I was beyond fatigued, slightly nauseated, and completely without appetite for most of the time we were there and a few days after we got home. I rallied enough for Tim, Sam, and I to get to Zion National Park for a couple of days and was able to spend one really good afternoon doing an easy hike with them. And we had some great time with Jessie and family.



But, it was so very discouraging. It’s one thing to get a stomach bug or a cold, and know what’s going on. Not being able to pinpoint what’s causing these kinds of down swings is unbelievably frustrating. Maybe it was a bug that I just couldn’t clear. Maybe it was related to changes in my thyroid medication (we’ve since made more changes based on that theory). Maybe – and this is the most discouraging option – it’s just this treatment, or the cancer itself, and this is just how it’s going to be. It’s hard not to fall into a pit of dramatic despair when my mind gets stuck on the last option and fixates on questions like “How will I ever plan/do travel again? How will I manage being with Sam this summer? How will have fun as a family if I spend half the day in bed all the time?” With some distance, Tim and I can talk through this and know that we just have to keep planning fun things and moving ahead the best we can. But in the moment, it’s stressful for both of us.

It’s been nearly a month and I’m still recovering from that spell. I lost the few pounds I’d managed to gain, which stinks. But my appetite is better and I’m doing the best I can to start gaining again. My breathing has not been great and I’m back to needing a break when I get to the top of the stairs. That’s slowed me down a lot, but I’m trying various things to help and trying not to lose hope that it will improve again and I can get back to doing things and moving at a pace that I’m happy with. I have my three month scans next week and will finally see my oncologist (instead of his fellow). I have a long list of things to talk with him about, including whether taking a break from treatment is an option we need to consider to help my lungs heal. Hard questions ahead…

As always, there’s lots of good stuff going on amidst all this medical noise and frustration with my body. We’ve had a beautiful, slow spring and have been enjoying lazy weekend afternoons in the backyard, alternately puttering and just sitting. Sam is about to finish his first season of soccer that involved actual games. He’s loved it and proven to be a natural defensive player. Also, he skips on the field when he’s not actively running for the ball, and it’s just the best thing. Somehow, he’s also nearing his sixth birthday and the end of kindergarten! My parents built a deer proof garden for me, and I’m having fun getting plants in and dreaming about having fresh tomatoes this summer. Tim and I have gotten out on a couple of good date nights, and have been having fun planning a big trip for our 10th anniversary this fall.

All of this has been happening in the context of deciding that making my leave from work permanent is the right thing to do at this juncture. It’s a hard, good, complicated thing and I’ll write more about it separately. My work family gave me a beautiful celebration last night and I am still processing all my feelings about it.

More soon. Love you all.

Good Things

I haven’t written in a while, mostly because I’ve had shingles for the past four week and all I’ve wanted to talk about is how crappy it is to have shingles. That’s pretty boring. But, also: get a shingles vaccine if you can get one. Don’t get shingles. It’s miserable.

But! There have been so many good things happening too, and I’ve been letting my cranky itchiness get in the way of acknowledging them until today, when a big good thing happened and I learned that my three month scans look great! Everything appears to be stable and the inflammation in my right lung that got everyone all hot and bothered around the holidays is much improved (which I knew based on being able to climb our stairs without needing a break at the top). We will continue with monthly immunotherapy treatments and keep fingers and toes crossed for another good report in three months’ time.

As always, I feel so relieved, and able to take a big breath and a step back and recognize other good things happening in my life. Let’s start with the obvious. My Tar Heels beat Duke at Duke last night. That is always a good thing. It’s an even better thing when I get to watch the win with my sister! Jessie and Lexi arrived yesterday and will be with us for a week. It’s such fun to have them!

Tim and I took our first weekend away in many many months in January. We spent a cold but fun two days exploring Richmond, VA, eating and poking around a few of the beautiful neighborhoods and funky stores. It was good to take some time away from the day to day and go somewhere new with no real agenda. We’ll definitely go back – there was so much good food and lots of outdoor stuff that we didn’t get to enjoy.


Amazing Cuban food in Richmond – these were just the apps


I’ve been continuing to get back into regular exercise, and started a program for cancer survivors through our local YMCA. It’s a small group of people of all ages, stages and types of cancer/survivorship, and experience with working out. I missed a couple of weeks but have been getting back in the swing of things. I’d forgotten how much I like doing exercise classes and having someone tell me what to do instead of just doing the same old same old. There’s a great atmosphere of being willing to try things even if we feel like it may be too hard or we might look too silly – on Monday we did Zumba, which I was terrible at but loved! I left with the first exercise high I’ve had in longer than I can remember. It felt amazing.

I’ve also been doing an eight week mindfulness based stress reduction course through UNC’s Program on Integrative Medicine. It’s something I’ve been looking at for years but never made the time commitment. It’s good stuff, and I’m remembering how hard it is to develop new, good habits. We’re supposed to do a good bit of meditation each day on our own as “homework.” I’m not being a very good student in that respect, but I’m trying.


My furry meditation partner


Lots of smaller good things too. Our few warm sunny days earlier this month. Quality time with Sam, who taught me how to play checkers (really – I somehow never learned to play). Celebrating my 38th birthday. A quick visit with some of my best ladies. A few really good reads – one for my wonderful book club, whose meetings bring me so much joy each month. Longer days that allow more time for after school/work family walks.

Lots to be grateful for, as always. Hope there’s lots in your lives too. Much love to you.




Happy New Year!

Happy New Year! I hope you all had good holiday seasons and that 2019 is off to a good start. We had a wonderful Christmas, with celebrations at both the Schwantes and McCullough homesteads. Sam was in Lego heaven and we were all happy for some relaxed time with family and especially excited for time with sweet baby Lexi (and her parents, of course).


The start of the New Year brought changes for both Tim and me. Tim’s office has gone virtual, so he’s been splitting work time between home and a new co-working space in town. And I’m now officially into my non-working waiting period for short term disability benefits. So on this workday, I’m writing from a warm, sunny corner of Weaver St Market, our local food co-op, where I treated myself to coffee and a chocolate croissant and a binge read of the new Louise Penny mystery this morning. Welcome to the world of not working. It feels good. And still strange. As I’ve been enjoying my treats this morning I’ve also been half listening in to a conversation between two women discussing some kind of maternal child health research study. And as much as I feel like I’ve made the right decision to step away from work for now, there’s a part of me that already misses being in that world and feeling like a professional. But only a part of me – the other part just laughed to myself when they started talking about IRB applications and I thought about how I can just sit and read my novel instead of worrying about something like that.

All this to say that I’m giving this work break, which felt like it really began last Wednesday when Sam went back to school, a “so far, so good.” I’ve been resting well and doing some very gratifying organizing in our house. Most importantly, I’ve had the energy to do the things that make me happy – reading a lot, cooking actual meals, walking Quincey, and enjoying time with my boys. Last weekend we took advantage of an unseasonably warm day and went to the NC Zoo. We walked a ton and when we got home I was able to keep playing with Sam instead of having to spend the rest of the day in bed. It felt amazing.

Many of you will not be surprised that the fact that I’m feeling good and more energetic means that I have been having thoughts like, “well, if I feel this good I should be working.” Thankfully, there are wise people all around me to remind me that the whole point of not working is so that I can have energy to do the more important things in my life – resting, healing, being with my family, and enjoying my life – instead of spending so much energy on working that I don’t have enough left over for the important things.

I know this, but it’s hard to step back from both the societal expectation and my own desire to have a professional identify and to do it all. I’ve been wrestling with what it means to not work. Who am I and how do I answer the inevitable get to know you question of “what do you do?” or the small talk of “how’s work?” I’ve never felt overly attached to my work in terms of it being a huge part of my identity. But stepping away from it makes me think that I have in fact been more attached than I’ve allowed myself to believe. Who am I if I’m not working? What does it mean to have worked so hard for professional degrees (and still be paying for them?) if I’m not using them?

At the root of a lot of this angst, I think, is that I feel like using a disability leave means the answer to the “what do you do?”/ “who am I” questions is “I’m a full time cancer patient.” Again, rationally I know that I’m a lot more than that – I’m a mother, a partner, a friend, a person who is tired and just needs a break. But my feelings, which are often much more powerful than my rational mind, often leave me feeling like more of a cancer patient than I want to feel.

I’m working to re-frame this for myself. It’s true that I am someone living with cancer, and I try to think of myself as someone LIVING with it, rather than as a patient. That means that right now my job is to do everything in my power to continue living well and to support my body in recovering, getting stronger, and protecting the health that continues to outweigh the disease that exists in it.

I feel like I’m on the path to doing all of this. My energy has improved and my appetite is back to normal. My breathing continues to be impacted by the “schmutz” in my right lung (which we now know is both inflammation from the immunotherapy and another metastases that appears to be stable), but I think even that is improving some. I’m getting a little stronger as I get back into light exercise. Having the energy to enjoy time with Tim and Sam has improved my mood and mental outlook tremendously. And my blood counts from a couple of weeks ago showed big improvements for the first time since last February! I was shocked – really considered checking with my nurse navigator to see if they were really my results.

It’s hard to rest in the not knowing of this time – not knowing when or if it will feel right to return to work. But it’s good work for me, and I’m so very grateful to be able to test this out as something that I’m choosing instead of something that’s being forced on me during crisis mode.

Thanks for listening, and for all that so many of you are doing to support us in making this work! Love to all of you.


P.S. Most of you likely saw my Facebook post about our work with Alex, a wonderful UNC senior photojournalism major who we’ve been so lucky to get to know. After losing his father to cancer several years ago he wanted to do his senior project on a family experiencing cancer. He is incredibly talented and we love how his project turned out. If you missed seeing it on facebook, you can find it on his website: https://www.alexkormannphoto.com/annas-story.html

Here are a few of my other favorite photos he took this fall that didn’t make it into the final project.


Good, great, wonderful news!

Hello from my cozy couch. I’m in my fuzzy slippers, under a soft blanket, looking at our Christmas tree and enjoying the extra heat from the fireplace. Life is good. Life is actually extra good, because today I got the wonderful news that my scans look good! There is no progression in areas where we know there is cancer, no new areas of concern, and one of the areas where I have a bone metastases appears to actually be healing.It seems the immunotherapy is working. My oncologist is pleased, and said it makes him feel less guilty for putting me through the initial double drug rounds that made me so miserable. Ha!

I’m excited, too. But mostly, I’m relieved in a way that I can’t find adequate words to describe. The lead up to scans is always incredibly anxiety provoking, but this time around felt much worse than usual. I haven’t had scans since July –  a longer than normal interval – and that probably contributed to higher than normal anxiety. But mostly I think it was a combination of having felt so bad for so many weeks, which really dipped into my hope and resilience reserves, and feeling like this immunotherapy is kind of the last frontier in terms of treatments other than surgery.

The plan is to continue with Opdivo once a month and do repeat scans in three months. In the interim, I’ll be able to go in and do just the relatively short infusion without seeing Dr. Pecot’s team. This will cut down on the overall time I’m in the hospital on treatment days by A LOT. Dr. Pecot finished our visit saying that he hopes I can just start seeing him four times a year for a long time to come. Me too. That sounds amazing.

Going into this appointment, I had given some thought to asking for a treatment break to let my body do some healing. I’ve read about other people doing this with Opdivo, and it’s something that the team mentioned back in August. But given the positive news today, I am hesitant to do that just yet. I now have two Opdivo only treatments under my belt, and I’m curious to see what the next few weeks are like…wondering if they’ll be easier than the last few the further I get from having that nasty other drug in my system. In other (dorkier) words, I’m still in data collecting mode.

There’s also been another variable thrown into the model that needs to be reckoned with. My scans showed some “schmutz” (really the word the fellow used) mainly in my right lung but also a bit in my left that they suspect is some kind of bacterial or fungal something or other. Dr. Pecot said it looked like pneumonia would look on a scan. So we need to get that figured out, and I’m going in to see the pulmonology team and have a bronchoscopy on Tuesday as a first step. I know this could turn into another crappy adventure with interventional medicine and drugs, but right now I’m not feeling too down about it. It seems possible that part of my lack of energy and certainly my lingering (and disgusting) smoker’s cough could be related to whatever is going on. Possibly the chill/fever cycles I continue to have once or so a week could as well. So for now I’m focusing on just figuring it out and going after it as part of my overall return to feeling good.

Another big part of that return is my decision to take some time fully away from work in the New Year. After much angsting and talking with Tim and my bosses and my therapist (who is my literal voice of reason when it comes to self care), I’ve decided to put in for short term disability, which will allow me to step away from work and keep part of my salary and my health insurance coverage for up to a year. I’ve been beyond fortunate to have had the flexibility and donated leave to work only as much as I could since I returned post-chemo in April, 2017. But since everything fell apart in July, I feel like I’ve barely been pulling my weight at work (a feeling that I completely put on myself, not based on anything I hear or feel from my bosses or colleagues). It’s a bad feeling, as is feeling like work is hanging over me when I really need to be resting, or that a nap is pulling at the edges of my focus when I’m really trying to work. But worst of all are the days when I do manage to really work for most of the day and then have nothing left to give Tim and Sam or myself at the end of the day. Often, if I do two fullish work days in a row I end up feeling terrible and having to spend a large part of the next day in bed.  Something feels like it has to give, and work is the place that feels easiest and wisest to let go of for a bit.

I’m going in with lots of possible outcomes in mind, but little expectation for what will actually come out of this. I’m going to focus on resting and doing the things that I know make my body feel happier and stronger and that bring me joy. I’m still holding out hope that my platelets and blood counts can get back to normal ranges, and I feel like I have to give my body a real chance to do that kind of deep healing. I’m open to the possibility that I’ll be out of my mind restless and ready to jump back into work within a couple of months. I’m also open to the thought that this break might lead to a more permanent change in how I integrate work into living a good life with cancer. We shall see. I’m grateful to be in a job that continues to be so supportive of my choices, and to have tools like this to use.

That was much more than I intended to write tonight. I’m pooped after two very long days at the hospital and one night sharing a bed with a pitiful five year old whose ear hurt. Hoping to sleep the sweet sleep of deep relief tonight. Wishing you all cozy evenings too. Much love!

It’s been a minute

Hello. It’s been a while. I’ve been sleeping for most of that time.

Well, that might be an exaggeration, but not a huge one. As many of you know, it’s been a rough last six or so weeks. After my second treatment in late September, I started having night time fevers that ultimately landed me in the hospital for a few nights. When you’ve got a compromised immune system, it doesn’t take much to earn a stay on the 4th floor of the Cancer Hospital. They worked me up thoroughly and could find no good explanation for the fevers, so they set me free. The fevers resolved, but I kept feeling crappy. Nothing super acute or specific, but I was fatigued beyond description and completely lost my appetite/was totally turned off by food much of the time.

Things got a bit better, just in time for my third treatment. I managed a happy weekend visit from friends before the process started all over again. I managed to stay out of the hospital that time, as my medical team was by this point satisfied that they were likely a side effect of the treatment. This time the fevers were more intense but didn’t last as long. But the fatigue and difficulty eating and general feeling of being run over by a truck persisted.

I had my fourth treatment last week, and got two units of blood to help perk me up, as I’d gotten pretty anemic by that point. It was supposed to be the last of the two drug regimen, but after asking me to tough out the third round, my oncologist decided to drop the drug that seemed to be causing most of the problems. It does seem to have helped, and I had a couple days this week of feeling like I was almost myself again. I’ve also had a couple of days where I’ve gotten severe chills late in the afternoon and spent the rest of the evening in bed warming up and then sweating out the fever that follows – including last night when Tim and I were supposed to go on our first date in months.

Things have not been great. I’ve regularly been sleeping 10+ hours a night. Functionally, this means that I have been missing mornings with Tim and Sam. Another way of saying this is that Tim has been doing get ready for school routine alone. For weeks. Some days I’ve been able to do stuff, but there have been days when I’ve gotten out of bed at noon and spent the rest of the afternoon on the couch doing nothing because that was all I could do. The better days I’ve been able to hang out with the boys in the afternoons, or (gasp!) do some work. I’ve rallied for some big events – a friend’s wedding and Sam’s first field trip, but sort of barely made it through them.

Tim has, once again, become super-Tim and kept everything going and Sam happy with intermittent co-parenting/partnering from me.  When you see him, tell him how amazing he is. My mom has come up to take care of me and help out several times. And our friends. Oh my, our friends have been incredible. It felt hard to ask for help this time around, for lots of reasons. So our friends and sisters just made it happen. We haven’t yet been made privy to the list of people who’ve been in on this movement, so I’ll put out a blanket thank you here as a starting point. My sweet neighborhood book club family has also been most attentive with meals and books loans and checking in one me. I love where we live! One of the amazing silver linings of hard periods like this one is that you’re reminded of how much you’re loved and how very lucky you are to have good people in your life.  

But it’s been hard, and I don’t want to make it look rosy just for the purposes of this space. When I’ve been in the hospital this year, I’ve spent a lot of time doing nothing. I mean, really nothing. Lying in bed not thinking or feeling or anything. I just shut down. I don’t know that it’s a healthy way to cope, but it’s just kind of what happens. I’ve been doing some of that at home these last weeks too, especially when I wake up but can’t motivate myself out of bed and into the day. I don’t like it, and it kind of scares me that I seem to have an “off” switch. I think it’s a way of hiding from it all, especially from my worries that this is some sort of beginning of the end and that I’m just going to continue feeling crappy from here on out. I need this treatment to work, so it feels like I don’t really have a choice about staying on it, even if doing so means that I feel crappy a lot of the time and sleep through much of each day. But thinking that this is how I’m going to live is really depressing. I can’t be with my family the way I want to be. I don’t have the energy to go out and do things, much less travel. With the exception of trick or treating, which exhausted me, I haven’t taken a real walk in weeks, or been to yoga. Eating remains challenging, and I am struggling to put weight back on. But I can’t even think about the possibility that this treatment isn’t working. It’s far too scary.

However (says the positive talk fairy on the other shoulder) I’m only a week out from the last treatment, and I did have some good days this week. So I’m trying to cull some hope from that and to remind myself that this whole thing is not a linear process. A good day doesn’t mean it’s all rainbows and sunshine from here on out (and it doesn’t mean that I can just jump back in full speed ahead), and a bad day doesn’t mean that I should just take to my bed and fill out my disability paperwork. My job – if I can remember to focus on it – is to take it a day at a time, make my plans for living, and hope the good days start outnumbering the bad. There are visits from friends to enjoy, Thanksgiving feasts to eat, and y’all it’s basketball season! I slept through last night’s game and I don’t intend to let that happen again!

Still. I could use some borrowed hope if you have some more to spare. I know I’ve asked before. I have scans on the 28th and I can already feel the anxiety building. So please keep sending all the good energy you’ve got to share. I appreciate it down to the last drop.



Breakfast of champions. Is it still breakfast if you’ve just gotten out of bed but it’s 11:30?



Keeping it real, y’all. This is what two day post-fever bed head looks like. I finally achieved the bang volume we were all looking for years ago.




And, of course, a cute Halloween picture. I was happy he didn’t keep the mask on very long. Spiderman muscles with Sam’s little elf face was way cuter.


Just checking in

Happy Sunday evening, all. I hope you’re all coming off a good weekend and looking ahead to a Monday that isn’t too much of a Monday.

It’s September, which used to be one of my favorite months – the promise of fall, memories of epic running adventures in the Blue Ridge mountains, getaways to celebrate our anniversary. As I wrote here one year ago, September is now a month full of different kinds of anniversaries. When I wrote about it last year, I talked about how angry and sad and drained I felt. I’m happy to say that, at least so far, things feel so different this time around.

I’m still aware that this is the time two years ago when my world fell apart. And I have spent some time most nights calming my mind from replaying some of the worst moments from that time. But, overall, I feel like I’m in a good place. I can look back and feel the fear and sadness of two Septembers ago without being completely swept up in it. And even as I start this new treatment regimen with all the unknowns that go along with that, I’m finding it so much easier than it’s been in the past to compartmentalize that piece of my life as I need to, so that I can be present with the rest of my life.  

I think some of this is a product of time, and some of it is a product of the work I’ve put in to taking care of myself emotionally and spiritually. Also – being realistic – all this feeling on solid ground could certainly fall away at any point as some of the more difficult specific anniversaries roll around.

But, while I’m here, I feel like I want to use this space to be intentional with celebrating the things that are filling my cup. Hopefully some of the good will overflow to all of you.

We spent Labor Day weekend in Boone with Melody, Ray, and Brixen. It had been way too long since we’d all been up to visit, and Sam and Brixen are always super pumped for cousin sleepovers. It was a lovely, low key visit. We made it out to Price Park on the Blue Ridge Parkway one morning and hiked a ways up the Boone Fork Trail – my very favorite hiking trail. Sam, Brixen, and Q dog splashed around in the river for a while. I love hiking with Sam. He is a natural trail runner and he was all about “swimming” in the creek, as was Q. We made it back to the car just as the skies let go a torrential rain. That made for a perfect afternoon of naps for all and hanging around the house.

We were home this weekend, with plenty of time for just kicking it around the house. It’s so easy to let weekends get overly full, and these relaxed hours at home are the best. Know what else is the best? Weddings! Yesterday we went to the wedding of my excellent former co-worker, now PhD student Clare. She and her husband Eric are great, and so was their wedding. It was extra fun for Tim and me because they used the same caterer and photographer we did. I finally got to actually enjoy the butternut squash ravioli we had at our wedding, and it was fun to see our photographer, who we’ve kept up with via social media. Sam went nuts over the extensive dessert bar and we worked some of that sugar high out on the dance floor before calling it a night.

This morning we met my cousin and his (wonderful) wife for brunch. They moved to the area a couple of years ago and it’s been really fun to get together from time to time, especially as we saw him only once or twice a year when we were kids. I’m lucky to have three cousins in the Triangle – even if we don’t see each other that frequently it feels good to know that we have family close by.

Those are the big things. But the smaller things have been just as important for helping me feel present and aware of joy over the last couple of weeks when it would be easy to fall into a funk. Sam continues to say that his school days are “great,” and I love seeing his big smile as he runs towards me at pick up in the afternoons. He’s going to bed an hour earlier than he had been, and Tim and I feel like that makes our time in the evenings SO much longer. Because Sam’s so tired at bedtime, he’s also been extra snuggly, which is the best. This morning he spent at least 15 minutes riding his scooter through the same puddles over and over again, making a big circular track on the pavement. Simple joys. This afternoon, Q and I took a nice walk on the local trails and didn’t see another person the whole time. Introvert dream come true! (Also, I’ve been eating a lot of ice cream. So there’s that.)

I believe there’s more joy ahead this month, even if there are also some darker moments mixed in. I feel like I have more space to accommodate both, without giving the dark times more space than they deserve.




Ready for his trip up the mountain. He thought being in there was a hoot – I tried it out when it was on the ground and, while I could fit, did not enjoy my experience 🙂




Sam refused to wear a prop but was very excited about to have Squad Goals

One Down

Well, that’s done. Today was highly uneventful in most ways. I basically sat in various stages of waiting from 10:00 until a little after 2:00, when I finally got to sit down in my chair and get all hooked up. The actual infusion took less than two hours. By the time I made it out of the parking deck it wasn 5:15. Long day! Thank goodness for a good (read: entertaining, easy) novel and a well packed bag of snacks for the day!

Unlike chemo, these drugs have no immediate side effects, so there was no need for things like the tons of anti-nausea drugs that knock you out, and I don’t feel wiped out from having poison coursing through my veins. Basically I feel normal. Or as normal as one can feel after spending a whole day in a hospital.

Whenever we fly, Tim marvels at how strange it is to wake up at home and just a few hours later be in a completely different place. It kind of feels like that. This morning I got up like normal, with nothing particular special happening inside me. Some hours later, I have what I’m thinking of as super power juice running though my body. Kind of bizarre.

Thbaks for all the good wishes and messages of encouragement. Y’all are the best! Now, off for that frozen treat I promised myself! Xo

A New Season

Hello! As always when I haven’t posted in a while, I’m struck by how much can change in a month’s time, especially when it comes to how I’m feeling – both physically and emotionally.

We had a wonderful trip to Wyoming. Grand Teton National Park is stunning, and the small area of Yellowstone we spent a day exploring was fascinating. We ate well and my parents treated us to all kinds of fun things, including an incredible two hour float on the gorgeous Snake River. I rode a horse with my sister, and watched Sam love on Lexi. It was healing. And frustrating. After overdoing it on our first hike out (a slow three miles during which I lagged well behind the rest of my family), I had to listen to my body and slow way down. It was hard to look up at those beautiful mountains and know that I wouldn’t be hiking even a little ways up them, much less to the top. But when I had to bail on our second hiking effort and found a sunny rock to stretch out on by a waterfall as everyone else hiked on, I reminded myself just how recently I’d had heart surgery, and how even more recently I’d had another surgery. I got calm, and present (and yes, perhaps a little over-sunned). After that it was easier to focus on accepting and finding beauty in exactly where I was. There was certainly plenty of beauty to be found.

The rest of August has been just fine. I’ve (mostly) gotten back into the swing of things at work. Sam loved his first day camp experience at a local farm based camp (“Mama, I can’t tell you about it because it was so awesome I don’t know where to start.”), and had another fun week in Western NC at camp grandparents. Tim and I treated ourselves to sleeping late and dinners out that week, and even had a proper date night on a WEDNESDAY (!) all the way in DURHAM (!). It was amazing.

And now August is almost over and it’s time for a new season. Not fall, which despite my fervent wishes I know will not arrive for at least another month. It’s school season! Sam started kindergarten yesterday, as most of you know. I couldn’t be prouder of how excited about and open to the experience he’s been. From what we’ve heard from his teacher, he’s taking his typical time to warm up and open up to her, but he’s been happy to go and happy when we’ve picked him up both days. We definitely clung more to him yesterday than he clung to us. I got teary when he turned and walked over to play with a couple of kids at the Lego station without looking back at us – he seemed so small and so big at the same time.

But I held it together until we got to the car, then I ugly cried a little. Less about what was actually happening in the moment and more about thinking ahead to all the first days to come. I know that none of us know how long we have, but it felt like one of those times when the weight of cancer made that uncertainty feel unfairly heavy. I don’t know if it’s realistic to hope that I’ll be able to see the next 12 years of first days of school. Or his graduation, or starting college. Etc, etc. Often, it feels like too much to hope for. And that makes me terribly angry. And scared. And sad. The perfect combination for ugly crying.

As we were in a crowded parking lot, and as Tim likes to back into his parking spaces so I felt rather exposed to all the other parents (none of whom seemed to be ugly crying) walking to their cars, and as I didn’t want to start the day with puffy eyes, I pulled it together. Tim and I went to breakfast and I ate my feelings from the bakery case. It’s all about the coping mechanisms some days. (Full disclosure, I later engaged in some retail therapy at work too. I am not claiming that my coping mechanisms are all super healthy or soulful. Sometimes a girl just needs to channel her anxiety to finding a dress to wear to a friend’s wedding instead of incessantly googling dubious health information or bingeing on cancer blogs.)

As Sam starts school, I start another new season in my cancer journey tomorrow. As I mentioned in my last post, my local oncologist, Dr. Pecot, had talked with us after my second hospitalization about the possibility of immunotherapy as the next step in my treatment. While I’m not in crisis mode with my tumors right now, the changes to the met on my pancreas that led to the need for the biliary duct stent and the newly discovered presence of a metastases in one of my breasts means that I’m not getting the level of tumor control we’d hoped for following PRRT. This is not to say that PRRT didn’t help. My primary tumor is stable, and I believe that the combination of chemo/radiation and PRRT has been working to shrink and stabilize that beast. From my perspective, the PRRT may also be slowing the growth of these mets – there’s really no way to know if they would have been causing problems sooner had it not been for that treatment.

Regardless, Dr. Pecot is not one to watch and wait. Sometimes I find that really frustrating, and I’ve pushed back when I’ve felt I needed to. But he made a strong case for immunotherapy. He’s about my age, and also has a young child. He’s also a cancer survivor. So he has a better sense of my perspective than many oncologists might. As he put it, he wants a big win for me, rather than trying another treatment that may just kick the can down the road a bit. And while this approach is pretty far outside the box for NETs, he thinks it’s worth a try. From what I can tell, the NETs field is moving this direction and there will probably be immunotherapy trials starting in the coming years for NETs patients. Dr. Pecot has consulted with Dr. Wolin in NYC, who is on board. Lucky me for having a young, ambitious, creative oncologist who’s also a great advocate for me.

Can you tell I’m still selling myself on this a little? There are no guarantees this will work. At all. There have been amazing successes with these drugs for patients with certain types of lung cancers and melanomas. But, like I said, no wide scale research on NETS, and certainly not my rainbow striped zebra version of NETS. But…who knows. Dr. Pecot likes to explain this treatment as being either “water” or “holy water” for patients. While I’m afraid to be too hopeful, it’s hard to resist the allure of having a holy water outcome.

I’m also worried about side effects. If you’d like to feed your own worry, or if you just want to learn more and are able to rationally read drug information on the internet, you can google the drugs Opdivo and Yervoy. Both Dr. Pecot and Amber, the stellar oncology pharmacist who works with him, have assured me that the chances of terrible side effects are very low. Especially if I am vigilant in reporting anything that seems “off” during the course of treatment. Amber somewhat jokingly (but maybe not totally) told me to call her if I have a bad hair day and think it might be related to the drugs. This seems like a simple task, but I’m finally admitting to myself what many of you know – I can be a stubborn mess who prefers to push through than to admit that something may be wrong. I’ve pledged to get over myself in that regard in the coming weeks.

All this to say that I learned this afternoon that the drug company has approved my application for off label use and agreed to provide the medication for free. That’s the only way this would be possible, as these drugs are beyond expensive. So, I start tomorrow at 10:00 am. How’s that for time to prepare?! The drugs are delivered via infusion, meaning that I get to return to the third floor infusion unit – one of my least favorite places. I feel a bit guilty, but I have benefited in the past from knowing one of the charge nurses, who made sure I got more private chairs and really good nurses, and I hope that’s the case again.

(Side note: this charge nurse is a wonderful, funny woman who treated me like a colleague when I worked there and took amazing care of me during chemo. She made my day last month when I was in infusion for fluids before getting admitted to the hospital via the ER. The nurse I’d had all day, who was fine but had kind of been getting on my nerves, said “well, at least you’ll be the healthiest person in the ER.” My angel nurse looked at him and said, “That’s the dumbest thing I’ve ever heard. Shut the f$%* up.” And then she came over and hugged me and said that she was sorry I was dealing with this and that cancer is just s@#^. I love her!)

Back to tomorrow: I’ll likely be at the hospital 4-5 hours between labs, getting set up, and getting the actual infusion. Then I’ll repeat this regime every three weeks for four cycles. After that we’ll do scans. If things are stable – or even better, have shrunk – I’ll continue on Opdivo every 2 – 4 weeks indefinitely. For tomorrow I am taking the full day off to do my best to relax into things. I have a fluffy novel, plenty of episodes of the Great British Baking Show, and plans for a frozen treat on the way home from the hospital

Look, I’m not excited to be starting yet another treatment regimen on the eve of my two year “cancerversary.” I had such high hopes for an extended period of calm and a break from treatment following PRRT. I am trying to give myself the space to deal with that disappointment, and to try to breathe through my anxiety about the uncertainties of starting something new. But this feels like the next right thing to do, and that’s really the only way I know how to proceed at this point.

More than ever, your good thoughts, prayers, wishes, vibes and love are appreciated. If you’re on the hope train because your gut is telling you to be, I’d appreciate hearing that too. It really helps to know that others are there when I can’t quite get there myself. 

Thanks for sticking it out through this long read. As a reward, here are some pictures for your enjoyment! Love to you all!

Evening photo shoot at Mormon Row. The mountains were hazy, but the evening light was beautiful



The boys overlooking Jenny Lake as I was getting zen on a big rock way down the trail.



That little puff of steam behind us is Old Faithful! It erupted a few minutes later, and it was spectacular. We were down wind and got a lot of geyster mist blown our way. It ruined the camera lens for the rest of the day, but it was such a cool experience!


Waffles at the top of the mountain (reached via a very European feeling gondola ride). We arrived at the top as some of the last runners in a trail race arrived via foot. Won’t say there weren’t some feelings of envy on my part. But whatever, I still got a warm waffle and Nutella sandwich. Life is pretty good.


Cheesing it up for the first day of school photo shoot. He’s so proud of his backpack, which he picked out himself. We think it’s kind of laughably terrible. If nothing else, it won’t get lost in a crowd.

Brief update

Hi all. Things have not been smooth sailing since I last posted, all happy to be back home and ready to recover and MOVE ON with things like having a normal day at the office and then going on our much anticipated vacation. Instead, I wound up back in the hospital for several nights. Short version of the story is that I got my monthly chemo shot on a Monday, felt quite ill on Tuesday, went in for fluids on Wednesday morning and spent the whole day there waiting to be admitted because my liver function was off and I was getting yellow.

Turns out that one of the small mets on my pancreas had changed just enough to start pinching my bile duct, which basically screwed things up. So I got to have another procedure to put a stent in to open it back up. While they were at it they biopsied the tumor just to be sure it was carcinoid (it is). Then I spent several increasingly cranky and uncomfortable days in the hospital before being discharged Sunday evening.

During that week, I hardly ate, from a combination of being ill, having to be NPO for various tests and scans, and then losing my appetite from pain/painkillers post-procedure. So I was a hot, scrawny mess by the time I got home. Tuesday I went in for labs and they kept me all day again to get my potassium levels up and to give me two liters of blood (which grossed me out but also perked me up quite a bit).

WE WERE SUPPOSED TO BE ON VACATION BY NOW! I clearly wasn’t ready to travel, so we decided to salvage what we could of the trip and Tim and Sam headed west, where they’ve been having good adventures and Tim has been earning his father of the year award. My mom stayed on in Chapel Hill with me as my nurse as I worked on training my stomach to handle food again and laid around watching a lot of the Great British Baking Show. Friday we headed home to Golden Valley, where my parents have continued to nurse me and fill me up with fresh garden produce.

And now we are finally getting ready to go on vacation. I’ll fly with my parents from Charlotte to Salt Lake City tomorrow and we’ll drive to meet my boys and Jessie and family in Jackson Hole, Wyoming. I’m still not 100% and am feeling a bit anxious about the long travel day. But I’m so ready to be reunited with Tim and Sam and we’re all excited for some rare time as a complete family. I am especially excited to see what Sam thinks of baby Lexi!

When we return there will, unfortunately, be more medical junk to deal with. My oncologist at UNC is advocating for trying immunotherapy, and we are leaning that direction. It’s daunting to think about starting something new. I’m hoping that I can shelve it for the next week and just soak up the mountain air and the time with family. Wish me luck.