State of the Schafer: All work and no writing, but planning to reverse that soon

 Right, so, here I am realizing again that it's been many months since I last updated this little blog, and I should probably at least tell people I'm alive! I'm much better about updating and posting pictures on Facebook, mostly because everything in our area of New Zealand runs off of Facebook & Messenger, from local businesses to hobby groups to school notifications to friends talking to each other. (I don't necessarily think this is a good thing, but it's definitely a thing.)

So, for those of you not on Facebook (oh blessed souls), here's the deal - I am indeed alive and almost fully recovered from last year's big mastectomy + DIEP flap reconstruction surgery. I say "almost" because I'm still working on regaining some flexibility, but other than that, I'm pretty much back to where I was before in terms of fitness and core strength, hooray. 

First major proof of recovery: going powder skiing in Japan. I was more cautious than normal, and occasionally needed a hand up after falling in deep powder, but Japan's terrain is relatively gentle so I could still charge pretty hard through the trees. 

Another major step in recovery: climbing a very steep trail to Liverpool Hut in Mt Aspiring National Park

So happy to be out in the mountains again

I had a little scare recently at my first follow-up surveillance scan, when ultrasound picked up a new cyst in my remaining "normal" breast, and but happily that proved to be benign (to my great relief). I do have one more small surgery coming up in early June - this is the "phase 2" of my reconstruction, where the surgeon will smooth out the scar around the flap - but it's supposed to be a much easier recovery, only a week off work instead of months. 

Speaking of work, running both the data science and atmospheric science teams at MetService has kept me extremely busy since last year's surgery - too busy to do much with writing or publishing. But! Going through major surgery and recovery has made me realize there are a bunch of things I've been putting off for "some day" that I had better hurry up and do while I am healthy and energetic enough to do them. None of us are guaranteed a future, and I feel that all the more keenly now. 

I've decided to leave MetService and focus for a time on all the things that have had to get pushed aside in recent years in favor of work. Writing is in this category, along with a whole passel of active adventures. I've still got several weeks of work to go, since I'll be finishing out the NZ fiscal year, which ends 30 June, to make the transition easier on my teams. But soon, I'll be shifting focus in a big way. I'm really excited about diving into creative endeavors again. 

We celebrated our 24th wedding anniversary recently, and are hoping to have many more adventures together during the year ahead

State of the Schafer: All good news

 Very happy to report that all is well with me! I had my big surgery back in August and my recovery is going along fine. It was indeed a major surgery - 11 hours on the table, and many weeks stuck in bed afterward waiting for the incisions to heal - but I didn't have any serious complications. (Just some minor ones. For example, I've never had trouble with surgical tape before, but in the aftermath of this surgery, my skin suddenly decided that all types of adhesive were the work of the devil. I was blistering up under most types of tape like a vampire exposed to holy water. This was decidedly not awesome, especially with a huge hip to hip abdominal incision that needed dressings on it to stay protected and closed. But! With some creativity on the part of the medical team, I made it through without any infection or other more serious trouble.)

A certain bed hog dog kept thinking the comfy pillows were all for him

Now my incisions are finally healed over, I'm back at work, and in another week, I get to start on rebuilding my core muscles and regaining fitness. Can't wait to get out on trails again. Best of all, the pathology report on removed tissue and lymph nodes showed no sign of any higher stage cancer, whew. I'm in the clear until my next follow up scan, which will be early next year. I'm delighted to not have to think about it anymore until then. 

Enjoying some winter sunshine with my husband at a beach near Dunedin

Thanks so much to all of you who messaged me with book and TV show recommendations. That definitely helped keep me happy and distracted during the long recovery. Now that I've got some energy and mental focus back, I've started writing again, and I'm finally getting off my butt to seek a cover artist for The White Serpent. I'm also exploring the possibility of finally getting an audiobook made for The Labyrinth of Flame. I've always felt bad when audiobook fans email me asking why the final volume of the series isn't available. It would be cool to fix that. 

State of the Schafer: in which there is more cancer (but also more mountains)

 If you follow me on Facebook or BlueSky, you might've seen that I've been posting pics from recent adventures in California's Sierra Nevada. The Sierra, of course, are the mountains that inspired the Whitefires in my Shattered Sigil trilogy, and oh gosh, how lovely it was to walk in them again. I do adore NZ's majestic Southern Alps, but the Sierra remain the mountains of my heart. There's just something about their jagged white granite silhouetted against indigo sky and reflected in turquoise lakes that never fails to exalt me and leave me in awe.

Our group rounding Royce Lake, high in the Sierra

And boy did I need some exaltation. Earlier this year, I got some unwelcome news from yet another biopsy. I've got more very early stage breast cancer lurking in the same breast that had the lumpectomy 2 years ago. Like last time, it's contained in the duct and therefore not considered invasive (yet), but as this is the 2nd time around, the doctors want to be more aggressive. All at once, I was looking at a mastectomy, and trying to decide between a plethora of options. Single? Double? Reconstruction or not?

I'd always assumed that if more cancer was found, I'd just tell the doctors to chop both breasts off. I've never felt that breasts define me as a woman. Nor do I care how feminine I look, or how I fill out clothes. (I pretty much live in t-shirts and hiking pants.) Yet I do care about functionality of my body, and that brought a stumbling block I hadn't previously considered. Mastectomy means losing most sensation from the area due to severed nerves, even if you have reconstruction - unless you go to one of a very few surgeons that offer "resensation" nerve grafting, which is still rather experimental and has a relatively low success rate. 

I found that sensation was actually important to me, and so I decided to do only a single mastectomy and keep the "healthy" breast, given that genetic testing found no evidence that I have any mutations relating to increased risk of cancer. That doesn't mean I don't have a bad gene lurking, since there's still plenty left for scientists to discover, but it makes it less likely. I'd learned that cancer-related decisions are all about weighing likelihoods and probabilities. There's no crystal ball, no way to obtain certainty about the future. As one doctor said to me, you just have to make the best decision you can with the information you have at the time. 

So. Given that I decided to keep the healthy breast, I found symmetry was also important to me - not because of looks, but due to function. I didn't want to worry about muscle imbalances. Yet I also didn't want implants - I've known too many women who've had a lot of trouble with them, everything from painful capsular contracture to autoimmune issues. That led me to considering DIEP flap reconstruction. This is where a skilled microsurgeon takes a big ol' chunk of your abdominal fat & skin, reshapes it, and essentially transplants it up to the breast area. When it works, it works really well. The fat is still you, meaning real living tissue; it's pretty much the same as the fat that used to make up the breast. The downside is that the transplanting turns the mastectomy into seriously major surgery, with correspondingly higher risks. It means ten hours or more under anaesthesia, and a long, tough recovery thanks to a hip-to-hip abdominal incision. 

The surgeons say I'm a good candidate. I'm "young" (in cancer terms, at least - I figure this is the last time in my life when I'll be told by multiple people how young I am!), and fit, and healthy apart from the abnormal cells lurking in my breast ducts. I've decided to go for DIEP, as it offers the chance of the best outcome. If I can slog my way up challenging passes in the Sierra, I can endure a tough recovery. (I hope!) 

Climbing sandy slippery terrain toward an unnamed pass we nicknamed "Mordor Pass"

Tomorrow is the big day. Single mastectomy plus immediate DIEP reconstruction is the plan. I'll be off work for two months to recover. Since I won't be able to do much exercise while healing, I figure it's a good opportunity to catch up on books, movies, and TV shows I haven't had time to enjoy. I've been asking friends for recommendations, and accumulated quite a list already, but I'm always open to more. If you have recs to share from the last few years, please do leave a comment or get in touch! 

And cross your fingers for me. If I'm honest, I'm pretty scared they'll find the cancer has turned invasive when they do the pathology. But that's part of the future I can't control. All I can do is take one step at a time, and hope I will one day enjoy more moments like this:

Loving life on top of Feather Pass

State of the Schafer: Starting a new chapter

More happy news to share! I am all done with treatment and have a clean bill of health. The results of the DCISionRT test done on my samples from surgery came back saying my risk of recurrence was very low and radiation would make no difference. Whew! That meant I got to avoid radiation, which was quite a relief. No more worries over risks of heart and lung damage, plus I didn't have to temporarily move to Dunedin or Christchurch. (Radiation has to be done every day for many days, and the nearest center is 4 hours away from where we live, so the logistics were a bit daunting.) 

Back when my initial biopsy was performed in February, the nurse assured me that "all this" would likely just be a "blip in your rearview mirror" by July. I don't know if blip is quite the right word, but I am definitely delighted to be done with everything medical and back to more or less normal life. 

First ski day of the season!

This isn't the only big milestone I'm celebrating. Last week, my husband and son and I all officially became citizens of Aotearoa New Zealand. Now I truly get to call New Zealand home! 

At the citizenship ceremony presided over by the local mayor, we came onto the stage in groups of 10 to receive our official citizenship certificates and a native plant. The ceremony invitation said we were encouraged to wear attire from our birth country. My Aussie husband joked he should wear an Akubra hat. Even so, he couldn't have outdone the Scottish guy in kilt and gumboots.

Happy new citizens!

All 100 new citizens celebrating together. 

I do retain my U.S. citizenship, as both NZ and the US are fine with dual citizenship. (The U.S does not care what oaths you might swear to other countries--you'll stay a U.S. citizen and continue paying U.S. taxes unless you pay big bucks to officially renounce. On the upside, staying a citizen also means you still get to vote in U.S. elections, which I certainly plan to do.) But I love New Zealand so much that I am delighted to be more than just a resident, now. I hope I can give plenty back to my new country. 

I'll never get over NZ's beauty

So! Onward to a new chapter of life, which hopefully will include a lot more writing as well as a return to fun mountain adventures. I've got edits in hand for the Cara story, The White Serpent--thanks to the ever-awesome Mazarkis Williams for the keen editorial eye. No major changes are needed, just some smaller fixes, so hopefully those won't take me too long.

And hey, in the meantime, if you're looking for something great to read, check out Martha Wells and Ursula Vernon (a.k.a. T. Kingfisher). They are both incredibly talented authors whose work I adore, and both are now facing their own battles with breast cancer (see here and here). 

Martha Wells's latest release Witch King was one of the books that kept me sane during the agonizing wait for my results after my 2nd surgery. If you love fantasy adventures with interwoven timelines, complex cultures, lots of magic, and great friendships, I highly recommend the read. Or if you're into SF and haven't yet tried her highly-acclaimed Murderbot series, you're definitely missing out. 

As for Ursula Vernon, when I was waiting for results on the DCISionRT test, I re-read The Wizard's Guide to Defensive Baking, because it had just the sort of wit and warmth and empathy that I needed. My absolute favorites of her work are probably Summer in Orcus (so imaginative!) and Swordheart (so funny!), but honestly, every one of her many, many novels are delightful. 

I want to do a longer post about more of the books that proved to be excellent and enjoyable distractions while I was in treatment, but between work, my final pass on The White Serpent, and my delight in returning to the mountains, I dare not make promises about finding time. We shall see...

Comet is as excited for a new chapter as I am

State of the Schafer: Celebrating good news

Got some very good news last week: the pathology report for the tissue excised in my 2nd surgery came back clean, no evidence of cancerous or abnormal cells. WHEW. It was such a relief, it honestly took a little while to sink in. It wasn't until many hours later that I shed a few happy tears. I think I've been so braced against the possibility of bad news, I had all the emotional walls up high and tight. 

But now I can relax a little. No more surgeries! Chemo officially off the table! That is very good news indeed. I may still need radiation treatment--my surgeon will be discussing my case at a tumor board meeting tomorrow, plus he'll have my cancerous tissue from the first surgery sent off to an overseas lab for a special test that examines the cell characteristics and estimates risk of recurrence with and without radiation. 

Most women who have excision/lumpectomy surgery do go for radiation, but in my case, the cancerous area was deep in my left breast, close to my chest wall, which means an increased risk of heart and lung damage from radiation treatment. So, I will need to weigh the risks: potential damage to heart and lungs vs. risk of cancer recurrence. Having a really good estimate of that recurrence risk will be a big help in deciding, so hooray for modern medicine. (The test my surgeon has ordered is an example of AI used for good, in fact. My personal risk based on my tissue characteristics will be estimated by a model trained for accuracy on medical datasets. Note the part about "trained for accuracy"...as opposed to "trained to sound like a human", like ChatGPT. There's a tremendous difference there.)  

So....still a bit of waiting and uncertainty to go, but with far less worry and stress. That's a win in my book! Especially because now I can start planning to get out in the mountains again. The recovery from the 2nd surgery has been faster and easier than the recovery from the first, so I'm raring to go. Even if I do have radiation, it wouldn't happen until a month or more from now, because they'd want the tissue to be completely healed from surgery. That means I've got 4-6 weeks with nothing medical planned, woo hoo! It's not quite ski season yet, but the mountains are still looking mighty fine. Time to enjoy them.

On the Mt Iron trail overlooking Wanaka

Lake Hawea, with Mt. Maude behind

State of the Schafer: Back Under the Knife

This Wednesday I'll be having surgery again. Sadly, multiple surgeries aren't unusual for women diagnosed with pre-invasive breast cancer. Something like 25% of women having excision/lumpectomy surgery have to go back for a second time. Some ladies have to go back even more. Pre-invasive cancer is sneaky; it doesn't show up well on imagery, nor does the tissue look different to the naked eye. It takes a pathologist with a microscope to examine tissue at the cellular level and know if the margins are clean or not.  

My surgeon isn't happy with one of my margins. I too would like to minimize my chance of cancerous cells remaining and growing into something far more difficult to treat. So! Back into the operating room I go. I'm not thrilled about the prospect, but at least this time the surgeon only needs to take a little bit more, so it's a faster and less involved surgery. I'm hoping that means the healing will also be a bit faster, but on the other hand, the surgeon will be re-opening the original incision, which means re-injuring the half-healed tissue, so I'm not sure. 

I think the hardest part will be the wait for the new pathology report. It's possible that yet more DCIS (the pre-invasive cancer) could be found in the newly excised tissue, in which case, I might face yet another surgery, or even a mastectomy. I'm obviously hoping for the more happy outcome, in which the tissue is all clean and I'll be free to move on to the next phase of treatment, which involves decisions about radiation therapy. But until I get that pathology report, all the outcomes are still on the table, and that uncertainty is far harder than the actual surgery and recovery, at least for me. 

That said, the recovery is still kinda annoying. I was just starting to be able to hike and everything again! Oh well. I can still look at the pretty mountains, even if I have to wait a while longer to play in them. Some early snows have come to the high peaks, which always makes them extra beautiful (and makes me dream of skiing...fingers crossed I'll get some days in this winter.) 

Took these pics the other day while walking Comet. Winter is coming!

Anyway, once the surgery is done, I'm going to be looking for some great distractions to keep my mind off the waiting while I recover. Maybe I'll re-read Dunnett's Lymond series (my fav books of all time!), although those need a lot of concentration. Maybe I'll re-read some Diana Wynne Jones and Patricia McKillip. If anybody's got really fun absorbing books or shows to recommend, please get in touch. 

State of the Schafer: On the Mend

Welp, my excision surgery for my stage 0 breast cancer was on the 19th, and I'm healing well. As of today, my energy has returned, the soreness is minimal, and I'm even able to sleep on that side again. (A huge help to me, as I'm the sort of sleeper who turns from side to side during the night. Post-surgery, that led to a lot of waking up going "Ow!", despite attempts to brace myself with pillows.) I was definitely glad I took two weeks off work, so I didn't have to worry about trying to be productive. I've spent my recovery time snuggling with my dog and reading and catching up on TV shows that friends have been telling me to watch. 

Comet's been great about keeping me company during recovery

The highlights of my TV binging would include Ted Lasso--which, yes, is as heartwarming as everyone says. I resisted until now because I didn't want to pay for yet another streaming service (and Apple, to boot, I am not fond of Apple in general). But I'm kinda glad I waited, because it means now I've got 3 seasons of Lasso to enjoy, hooray! Another favorite distraction has been the new show Rabbit Hole, which is kind of like a cracked-out mash-up of 24 and Person of Interest. Kiefer Sutherland stars, and you know, I can happily watch Kiefer play spy characters all day. Although, what I like best is that the show has way more of a sense of humor than I expected, and never takes itself too seriously. Good times.

Speaking of kind people, my awesome co-workers sent me flowers, and a gift card to a shop that imports American foods and snacks. Jiffy corn muffin mix and Kraft mac-n-cheese, here I come.

On the reading front, I turned to some old favorites: Dorothy Sayers's Peter Wimsey mystery novels. It's always fun to read the whole series in order and see the build-up to the masterpiece of character work that is Gaudy Night. I also re-read Rachel Aaron's urban fantasy Heartstriker series, I think because watching Ted Lasso and his superpower of kindness made me want to read about similarly good-hearted characters--and Julius Heartstriker, Nice Dragon Extraordinaire, fits that mold quite well. I also re-read my own books, haha--in part because I wrote them for my own taste and so I thoroughly enjoy them, and also because I plan to do some work on the drafts of a Lena story and a Ruslan story., so it's good to immerse myself in the Shattered Sigil world again. I'd love to finish those drafts up while the Cara story, The White Serpent, is off with an editor. 

I'm returning to the day job tomorrow, which is good because I'll need some distraction. Today I heard from my surgeon about my pathology results (where a pathologist examined the tissue removed during the surgery). The good news: no higher stage invasive cancer found, phew! The bad news: more pre-invasive cancer was found than expected, so I may need to have a second surgery to take more tissue. Later this week, the surgeon is meeting with the pathologist and the "tumor board" (a group of doctors) to further discuss the results and make a decision about a second surgery.

As you might imagine, I am not thrilled about the possibility of going under the knife again. But as cancer goes, this is still pretty low-key. No invasive cancer found means no chemo needed, which is a huge relief, so I plan to focus on that. Or actually, just focus on work and writing and family fun, until I get further word from the surgeon. Onward...

Glorious autumn day in Queenstown

Get your screenings, friends

"Hey, did you hear back about your mammogram yet?" my husband asked me. It was mid-February, the height of New Zealand summer, and we were having a spaghetti date night at long-time Wanaka icon The Cow.  (You might think a restaurant named The Cow would be all about steaks, instead of featuring only spaghetti and pizza. But no, the name comes from the original Queenstown location being built in a stone barn. The menu may be limited, but the spaghetti is pretty darn tasty.) 

"Nah. They'll text me if the results are clear. Last time it took a week or two." Even as I spoke, a niggling thought popped up. Hadn't it already been two weeks since my mammogram? Was it a bad sign if I hadn't heard anything yet? Well, but I'd heard everywhere was short-staffed since the height of the pandemic. Probably the screening people were just backlogged. With that, I dismissed worry. Our conversation moved to other, more fun topics.

But a few days later, when I got a call from a kind-voiced woman explaining that she was a nurse calling from BreastScreen Otago, my stomach sank. 

"Your mammogram picked up a small area of concern," she said. "A cluster of tiny calcifications. The cause could be benign, but we'll need to call you back in for further imaging."

I'd been called back once before, on my very first mammogram, back when I was living in the US. "Your breast tissue is very dense," was what they had said back then. "That's common in younger women, but it makes it hard to identify problems. We need to do some more imaging."

That call had come right after I'd buckled my toddler into his car seat, after a fun morning at a museum in Denver playing with a bunch of cool hands-on science exhibits. When I hung up and slid into the driver's seat, I looked in the rear view mirror to see my son already tilted against the side of his car seat, fast asleep. At the sight of his small face, a pang of visceral terror hit me. A friend of mine had recently been diagnosed with early-stage breast cancer off her very first mammogram. My own first mammogram was earlier than normal, because my mother had breast cancer in middle age.  She'd survived, but only after several painful and difficult rounds of chemo.

Please, no, was all I could think. Not while my son is so young. 

That time, I was fortunate. My further imaging came back clean. I continued to have yearly mammograms in the US, which then shifted to every other year after we moved to New Zealand, since that's the standard interval here for the free breast screening program. 

I'd never been called back again. Until now. And nobody had talked about calcifications before. I pored over the information sheet the nurse emailed to me. Calcifications are common, it said. Most aren't due to cancer. When breast cancer cells are detected because of micro-calcification, they tend to be either ductal carcinoma in situ (DCIS) – pre-invasive cancerous changes in the milk ducts of the breast – or small early breast cancers that have not yet spread.

Hanging up this time, I didn't feel terror. Only a kind of heavy resignation. My mother had been diagnosed when she was only a couple years older than I am now. But her cancer was not caught that early. Driving to Queenstown for my imaging appointment, I clung to the idea of "early" and "small." 

That proved true. After further imaging, a stereotactic biopsy, and an MRI, I've been diagnosed with DCIS, a.k.a. "stage 0" not-yet-invasive cancer. Baby cancer, the doctors tell me. Cancer on easy mode. 98% survival rate. No chemo needed, just excision surgery and perhaps a course of radiation. Assuming we don't identify any lurking invasive component when we analyze the tissue removed in your surgery. 

Assuming is a word that leaves a lot of room for worry. Uncertainty is always a challenge to handle, at least for an engineer like me. At least I won't have long to wait for answers. My excision surgery is tomorrow. If you're reading this, cross your fingers for me. 

And get your screenings. One of the reasons I decided to talk about this publicly was because it's helped me so much to know about friends who went through the same experience. 1 in 8 women will be diagnosed sometime during their life, the statistics say. In New Zealand alone, 9 women are diagnosed every day. And the ages are skewing younger. Both my doctor in the US and my doctor here in New Zealand mentioned that they're seeing far more breast cancer in 40s and even 30s, compared to when they began their practice. Perhaps due to better screening, perhaps due to something environmental, but the point is--don't put off that mammogram or ultrasound. If your mother or other female relatives had breast cancer, ask for screenings starting 10 years before their age of diagnosis, rather than waiting for the official age recommendation. The earlier an abnormality is found, the easier the treatment.