Hello friends, family, and everyone who has shown care for Heather in her health situation! The last update we sent out was on a bit more of a sad note, if still hopeful, so it’s time we came along with more news.

First, I feel I should address any concerns and say that yes, Heather is doing much better. We’ve made peace with the treatment she needs and the time it’s going to take, and we continue to focus on being grateful for the many blessings we’ve received, and the general fact that we caught the cancer early. Her doctors have a good handle on what they’re doing, and we have a pretty clear road map at this point.

Yet we still had another surprise, in that they moved Heather’s plastics surgery to be much sooner—this past Monday, in fact. This was the fourth time she’s been put under anesthesia in about three months, and by now she’s an anesthesia veteran. Fortunately we won’t be doing that again for about a year.

Having the breast implants installed so soon definitely wasn’t planned, since they had ordered radiation for her treatment (more on that in a moment), so this was definitely a boon regarding Heather’s comfort. We’ve talked about the “expanders” she’s had in place, which are under the skin and maintain the shape of the breast area. They also happen to be very stiff, and are sutured to the pectoral muscles. It’s been very uncomfortable for her physically, with limited movement and pain, to the point of not being able to hug Aoife as enthusiastically as she likes (or me for that matter, but I can take it), and she had not at all been looking forward to the initial plan of keeping them for an entire year. With the change of doing plastics now, it was such a relief to get those expanders out. This has been a major part of the morale boost that Heather, and all of us, have felt since our last update.

The doctors went ahead and did this because they scheduled Heather for a different sort of radiation, called proton therapy. This is a newer form of treatment, more localized than typical radiation and able to target the problematic lymph nodes more directly, and they needed the expanders to be gone in order to proceed with the treatment. Moreover, the proton doesn’t risk destroying the implants.

Looking back at our previous updates is a great reminder for how much progress we’ve made as a family. I’m here talking about the expanders that were causing discomfort; meanwhile, the last thing I wrote was mentioning the drain tubes that were coming out of her chest—ghastly things that she’d had to delicately manage when moving around, and emptying the vessels of plasmic fluid regularly throughout the day. With such a clear, visible reminder that she’s a “patient”, it was pretty tough to maintain spirits at the time. But we pushed through. Heather also tends to be so lucid regardless of what state she’s in, that I myself will often forget that she’s recently been through anesthesia, or that she’s on medication with some mind-altering effects, and that has led to some surprising miscommunication here and there. We’ve managed that with a sense of humor, though; all it takes is a little bit of leaning-in to some degree of surrealism.

I should also point out that these “dreamlike states” brought on by the anesthesia and such have uncovered some latent mental health issues in Heather. It’s an interesting way to make discoveries, but it worked, and we’re now addressing them. Essentially, Heather has PTSD from childhood experiences, and though she’s had help for it before, we have a more clear and defined nomenclature, as well as a new avenue of resources that will bring her to a much greater step forward in healing from it. Mental health is a learning experience that sort of shows that no one is perfectly and completely free from any sort of trouble. Even the most stable people who had a great upbringing will have knots they need to untangle throughout their life, and I have found myself being a witness to this, learning where I can do the same for myself. Through Heather’s health crisis, we have all discovered ways of healing each other as a family.

Our daughter Aoife keeps on growing. She’s 4 and a half now. We can tell that she’s starting to be more affected by Mom’s medical situation. It’s displaying in ways that are emotionally aware and astute, usually, like asking about her being at the doctor, wondering if Mama doesn’t feel well, saying, “She has to feel better,” and doing a great job identifying her feelings, like when she misses her mother. Even if Aoife seems sad some days, it’s all coming out in healthy ways; so we’re very glad about that. We work at creating an environment where expressing feelings is safe, as long as everyone’s boundaries are respected. Aoife’s emotional vocabulary is expanding, with her humor, awareness of the people she’s close to (empathy), and her expression of affection (especially for Mom), and I think we’re just seeing her develop into a fully integrated, healthy child.

Music and dance go a long way for keeping her spirits up. One afternoon, when Heather and I were working in another room, Aoife burst in all excited shouting, “Mama, Dada! Come and see! You have to watch!” The fervor was contagious, and we were intrigued.

We all piled into a cuddle puddle on the couch to watch an episode of Aoife’s current favorite show, “Pete the Cat”. The episode was all about how Pete the cat wanted to express gratitude toward his parents for all the wonderful things they do. And then it culminated with a song called, “Rock on Mom, Rock on Dad”. She was hugging us tight, and holding onto mama’s arm especially, during the song. I don’t know if anything else could compare to how touched we were by that, and given the time of year, it was a live valentine’s message.

It’s interesting to point out that we’re watching our daughter, and ourselves, become better through difficulties. By facing the challenges and letting go of the fear, we’re discovering pathways leading to a better place in life. Now, I don’t want to be presumptuous and sugar-coat this idea; we have an appreciably good prognosis for Heather’s outcome, and that’s not always the case for people. We simply count ourselves blessed and want to make the best of the situation.

On the pragmatic side of things, I have had some work cropping back up, and some time capacity to actually jump into it. It’s been tough with Heather mostly unable to physically handle household and child-related tasks. Thankfully, with a lot of grit and determination, we’ve continued to make progress on our independent creative work that we can do from home. Here’s a link to our latest release, which we’re excited to share (fair warning, the music gets loud):

https://twistedcrow.substack.com/p/kryptomagna-ohm-e?r=1ila24

Meanwhile, we have another round of appointments coming up here soon. On top of that, Heather is soon going to be away from home on the weekdays for five weeks, during her proton therapy (much thanks to Crickett for offering her a place to stay during that time!). This is to say that I’m about to be engaged in “single dad” lifestyle fairly soon, which may affect my work capacity once again.

Financial obligations hanging over us right now include some back tax payments, credit card payments, and another payment for our CPA; currently it looks like raising another $2,000-$3,000 would go a long way in getting us through this next stint. We are fortunate to have friends and family helping us with additional financial challenges, so this estimate is mainly to address the pending tumult while Heather is away.

We appreciate all your donations and support, and we’re praying that everyone who has blessed us will be blessed in their own lives ten-fold. Thank you all; we feel very good about how things are going, and we’ll be in touch!

It’s been a few weeks since we’ve sent out an update on Heather’s cancer treatment, and plenty has happened since then. We feel like we’ve moved house about three times in one month, between staying with friends and family near the different hospitals, and holiday activity. We were able to do Christmas at home, make a nice dinner, and give four-year-old Aoife a special day.

Last time, we mentioned that Heather’s surgical doctor had ordered an extraction of her axillary lymph nodes—scheduled on her birthday, ironically. This is the last set of lymph nodes along the chain that can be extracted; there are other nodes in the chest and elsewhere that aren’t reachable. So, this left us with particular apprehension about what they would find. The results didn’t take too long to come in. We were at my parents house, staying for a few days to get help with our daughter and Heather’s recovery. Then the call came, and Heather relayed to me the news: there was some cancer found in the axillary nodes. It had metastasized.

Doing my best to stay composed, I had to take a seat on the couch. I think the only words I could get out at the time were, “I’ve been in denial.” Relentless hope and optimism have done a lot to carry our family through this situation, but it seems important to keep in perspective the reality that this is cancer, and it doesn’t care.

Now, the shock of that announcement did not beat us down for too long, because the follow-up meeting with Heather’s pathology doctor reinforced that the prognosis is still the same, and she’s still just at Stage 2, or 2B. But it still gave us a few rough nights wondering whether the situation was much worse than we had thought. We went through all the discussions about mortality and the transience of life, focusing in a lot on Heather’s fears (all justified) of leaving our daughter with the memory of her mother as just “someone who is sick.” She doesn’t want Aoife to feel she needs to avoid her mother because of all the big feelings during this time.

Even if that fear doesn’t appear to be as close around the corner as it might have been, it was important to talk about. The ultimate takeaway was that underneath all the difficulty and struggle, Heather has given and given and given a continuous flow of love and care to Aoife that the truest of mothers give, and no matter how infirm Heather gets—whether in five years, or ten, or thirty-five—that love, that confidence in being loved, is what Aoife will carry with her, her whole life.

So, next Heather’s preparing for... the third painting in this triptych, as it were. Chemo, Surgery, and now: Radiation. (Hieronymus Bosch would be impressed). After the last drain tube from her surgery is able to come out, she has been ordered six weeks of radiation—that’s, every day, Mon-Fri. And, another year of immunotherapy, once a month (think: “chemo lite”). Fortunately she can transfer the radiation treatment out of Hopkins’ network to a closer hospital, and the procedure only takes a few minutes.

We’ve gone through the long-distance run, the sprint, and now we’re in the cross-country part of the race. (Some say too many metaphors is bad for your writing, but we’ve lived these metaphors). Heather continues doing her diligence in learning which health supplements and medicinal herbs are safe for her to take with hormone-fed metastatic cancer. Much of this information is excruciatingly difficult to find, because everything comes with the disclaimer: “not enough data” / “not enough research”. Thanks, FDA. I’m not really here to delve into that can of worms (yeah, more metaphors…), but I can say Heather’s frustrated about having to forgo some supplements in her diet. And frustrated is good; it means her spirits are pretty high, considering.

Along with the not-very-bad news, we’ve been having the occasional meals brought to us by friends in the community. This process has done so much to make us internalize ways we want to give back and give forward, once Heather’s stabilized and we’re more on our feet again. As always, we take this next step in gratitude, and hope you all find yourselves blessed.

Hey folks, I wanted to fill everyone in about Heather’s second surgery this week.

On Tuesday, Heather had her expander implantation procedure. This is where they put devices under the skin of the breasts that will expand and maintain the skin’s integrity, until she’s able to get the reconstruction done. Getting Heather checked in went smoothly, but she had to wait around for a while due to the patient before her taking longer than expected. 2.5 hours later, they got her in and everything went alright. Apparently the surgeon, too, was still in good spirits, despite the busy day. Thankfully my sister was also able to stop by and play with Aoife for a bit, since there was no way a four-year-old can hang out in a waiting room that long.

A feature of this step in Heather’s treatment involves having two thin tubes coming out of her rib area, ending in vessels that collect fluid. They had installed the same devices after her mastectomy, which I forgot to mention. So we've been through this once already. She’ll have to empty the drainage vessels two or three times a day. Wearing these things was among the greater apprehensions she had towards needing more treatment, and to be honest it is fairly uncomfortable. Fortunately, we had thought she would need them long-term, but in fact the tubes will get taken out in a few days.

Coming out of this procedure left Heather a lot more sore than the mastectomy, as well. Especially for the first 24 hours. She’d been doing well with being fairly independent and not needing too much help from me to get around; this time, however, there’s a bit more pain in moving around, and she has instructions to limit the movement of her arms. But, she has me here, and we’re taking it a day at a time. With enough small pillows, Aoife can still sit on Mama’s lap as well, with enough coaxing to be very careful. And that’s what matters, ultimately.

Next up, Heather was supposed to have a test procedure on her auxiliary lymph nodes on the 23rd. Unfortunately, Dr. Broderick (the reconstruction surgeon) needed to talk to Dr. Tran (mastectomy surgeon) to recommend postponing, so Heather can recover more. So now, the lymph node test is scheduled for December 30th—Heather’s birthday. I could try and say this is a present any girl might want, but I don’t know about all that.

It’s probably the hardest year we’ve ever had (knock on wood...). Here we are, barely scraping by and going for broke. But Heather’s in good hands and coming through. And we have each other, along with being surrounded by love and care. We all get to be together through the entire Yuletide season, and we’re very thankful for that.

Love to you all – Erik.

Good Christmas, Yule, New Year, and otherwise holiday season to you all! We’ve had all sorts of excitement over the past few weeks, starting with short-term moving ourselves into the home of our friend and Aoife’s Godfather, Chris. And we have news to share about Heather’s surgery.

The double mastectomy procedure went well. Towards the end of my wait, Dr. Tran came out to tell me it went “better than expected”. I still don’t know entirely what that means, though we later learned that the triple-negative tumor (the more aggressive one) got pulled out in one easy clump. Sitting in the waiting room, finally hearing the call that she was awake and they were bringing her out, brought me a palpable reminder how much I love this woman. And there she was, pushed along on the hospital bed with her bald head, making funny quips about everything happening around her in her half-conscious state.

We spent a rather comfortable evening in the hospital, and they let her go the next day after crossing all the i's and dotting the t’s. Or however the saying goes. Then we were off to our friend’s house where Heather has been recovering and awaiting the next surgery.

Aoife has been doing remarkably well with the situation. Four year-olds and toddlers in general understand a lot more than many people realize—especially if they’re spoken to with honesty in terms they can understand. We’ve spent the entire process telling her, “Mama has booboos, and the doctors need to get them out. They’re like monsters living in there.” She usually responds by agreeing, “Got to get the monsters out.”

The hardest part for her, quite honestly, was our quarantine. After the surgery got postponed due to us being sick, Aoife stayed with her grandmother, while we remained apart at Heather’s patron’s house (thank you again, Kevin!). Heather and I did Thanksgiving together, while Aoife joined the extended family. Aoife loves her ‘Gammy’, and had a lot of fun, but it wound up being about six days that she was away from us—the longest she’s ever experienced yet. It was tough, but we just couldn’t risk Heather getting sick and postponed again.

We reunited for the entire day before surgery. Aoife cried a little bit, crossed her arm and acted angry that she didn’t get to see Mama for so long. But, she quickly worked through it and was giving hugs again.

Now for the news about the pathology. Her smaller, more dangerous tumor from the left was completely knocked out by the chemo. No issues there. The right side had gone down to about 2mm, but it still had some live cancer cells there. So, it looks like we’ll have to do what we were afraid of, which is some combination of radiation and/or immunotherapy. After querying doctors, however, Heather had her fears put to rest pretty well.

The main trepidation was over the expanders: temporary devices placed under the skin of the breasts to maintain their health during further treatment, before reconstruction. The trouble is implants will get destroyed during radiation; that’s why the expanders get used. So, after asking around, Heather learned that the process won’t be quite as cumbersome as she had initially thought.

Heather’s next step is going to be her second surgery to get the expanders put in. That’s happening on the 17th—so, in a day. (I might have had this update out sooner, but for one of the busiest work weeks this year, only a few days after her first surgery). Then on the 23rd she has another surgery to get a pathology on the second set of lymph nodes, which will determine her exact follow-up care. Heather’s getting incised and prodded by doctors all over the DMV—not to mention she’ll have a surgery in 6-12 months for reconstruction.

For now, Heather’s relaxing as much as she can until Tuesday. She has some pain from the mastectomy, which has increased gradually as days go by, but it’s still manageable. She seems to be most sore in the lymph node areas under her arms. What’s most worrying her is the possibility of lymphedema. That’s a side-effect of removing or otherwise tampering with the lymph nodes; because their function is to circulate fluids, without them the fluid can build and damage areas around it. This is her right hand we’re talking about, and she is right-handed. Thus, there’s a fear of losing some function in her right arm and hand, and not being able to paint anymore.

There’s roughly a 60% chance that Heather does not experience lymphedema, and if she does, there are yet ways to avoid severe repercussions. Ultimately, she’s doing her best not to think about that until everything else has been dealt with.

Christmas, Yule, and birthdays etc. are going to be fairly lean this year. We’re glad to have Heather still with us, and very fortunate. Family, friends, and patrons who care for Aoife have begun to pitch in on gifts for our daughter. If you feel you would like to contribute, we once again can’t thank you enough. We can hardly thank you enough for what you’ve already done. The generosity of loved ones and caring strangers has got us through this year, and given our family much to think about and be grateful for next year and thereafter. Blessings to you!

Happy Thanksgiving to friends and family, Happy Yule season, and a blessed start of winter to you all!

Our family's journey these past couple of months has been nothing short of harrowing, and we have more to be thankful for than ever before. So many people have pitched in to help us with our struggle that we cannot stop reflecting on how much we're loved. It's been a while since we sent out an update on Heather's condition, and that's absolutely owing to a burst of activity.

October was a month of challenge and growth. It marked the last round of chemotherapy, and Heather is very glad to be done with that process. Fortunately, the doctors removed one of the drugs from the procedure in the last two doses, to ease up on the overwhelming nausea she was experiencing with vomiting and all that -- it was bad.

It was also the month we launched our Substack page under the label "Twisted Crow". Somehow, whenever "extraneous life challenges" face us (yes, I'll relegate cancer to that category...), Heather and I have a tendency to buckle down on our creative endeavors and focus even harder on the things that make life worth living. Through an amazing twist of fate and perhaps some Divine intervention, we finished a music video in time for our hard deadline of Halloween. It was an incredible bonding experience for husband and wife, especially because we intend to partner with each other as much as we can throughout our art career.

As the date of Heather's surgery approaches, we even managed to record her singing on another track, and filmed the footage, starring her, in our next video. This project was much simpler than the first, and did not require so much running around (though there was some—because, neither her nor I can ever do anything too simple).

And, about Heather's surgery—it was actually supposed to be last week. Unfortunately, Aoife got a chest cold the week prior, which she gleefully passed on to mom (and me, but that's no matter), which led to the doctors postponing her mastectomy. Aoife has gotten mild colds about every other week on account of preschool, but Fate decided that the absolute worst one of the season would be... now!

Heather was understandably upset about the postponement. We had arranged family childcare, and lodging with friends near the hospital, for the two weeks of her operations, and it all had to get pushed back. And, of course, she just wants to be done with the process. So we're taking it one day at a time, and as of now her double mastectomy is scheduled for Dec. 5th, in two days. The people in our life who love us continue to outdo themselves, and will not let us say no to giving more time to help out. Chris, Mom, Michele, Em, Jo, Brian, Uncle Andrew, and the entire retinue with whom Heather is in contact and I'm not even fully aware—you know who you are. I do need to keep thanking Mom's family as well—Nancy & Tony, MaryAnn, Susan, Jim, and Zio Mark—we love you guys.

We hope and pray that the surgery goes well. We know Heather is in good hands, above and below. Ideally, we hope that the removed tissue comes back with minimal cancer cells in it, so that it's below the margins for further treatment. If it's above that margin, Heather will need to get expanders under the skin of the breast, and undergo a year of immunotherapy. She's apprehensive of that possibility, due to Aoife being four years old and in a sensitive time; basically Heather doesn't want to be unable to hold her child. Still, we recognize that many, many people have had a much more severe prognosis, and had to experience years of therapy and life disruption; so we are nevertheless grateful that our situation is as positive as it is.

Some have said Heather's cancer journey is near its end, with the completion of chemo. They're almost right; but it's more like that part of the movie where all the simmering tension pulls together and the action amps up to the next level. Act 3 is about to start, in other words.

We can't thank you enough for your donations and support through it all. If you feel compelled to give more to our campaign, we appreciate it immensely. Or you could even go to https://twistedcrow.substack.com to follow and support our work there, if that's your cup of tea. It's a new page where we post and talk about art, in our respective niche, and we're going to keep making it grow!

The photo I included is Aoife and I with our messy hair, and one of several flower garlands Heather made with the last marigolds before the frost. The painting beside us is one of Heather's, also; Heather is very much present in this photo. Thanks again for your support and prayers, and we will let everyone know how the surgery(s) go!

Hello everyone! The Heather Joi family wanted to get back in touch just to let you know -- chemo sucks, y'all.

It's not the usual kind of "suck" -- like a tough job that you have to get up and go to, or training for a marathon, or driving in traffic. This is more of an unnatural, whole-body experience kind of "suck". It's like: if "holistic health" had an inverse evil twin on the other side of some quantum dimension, this would be it. And to think we willingly opened this portal...

"But it's fast! And effective!"

/Rant.

As it stands, Heather is responding as well to the treatment as one could hope. The larger of the two tumors started at over 7cm, and now it's less than 2cm. That's about a 75% decrease, and we've been really happy with the development. Her next infusion (Round 5 of 6) will be this coming week, so when we go in for that visit, we will explore if there are other options for how we proceed with the treatment plan. On the one hand, we want to see if we can forego the need for the rest of the chemotherapy; on the other, we're at the point where it should seem like she can just get a lumpectomy, instead of a full mastectomy. We'll discuss all this with her doctor.

Heather's biggest challenge has been everything food related. After Round 3, diarrhea and nausea got worse than ever. Round 4 has been an exercise in her trying to find anything at all she can eat or drink without throwing up. This got bad enough to send us to the ER. She had gone for three days straight eating almost nothing, had lost about 15 lbs., and by now she's probably up to 20 -- and she didn't have that much weight available to lose.

This is all to say that we're at that point where this process has become extremely hard for her, physically. And yet, she's still been great with keeping her spirits up. Frustration comes in waves, but that's to be expected; otherwise we've been doing everything to stay positive.

Meanwhile, the kinder is swell. Aoife has started preschool, and she's loving it. Our plan has been to homeschool her for her primary education, but the preschool opportunity was timely, between Heather's health and my work. The program revolves more around planned toddler group activities than "school", so it's a chance for us to have help in giving her structured activity with other kids, while mom and dad's hands are a full. And I'm not sure whether most young kids are like this, but she even loves riding the bus!

When Mom was in the ER and it was about time for us to pick her up, Aoife and I arrived a tad early. Fortunately the health center in Winchester is a fairly sizeable complex, with a park area that has sunflowers, a small pond, and -- willow trees. We took our time hanging out there while waiting on Heather's release, and I explained to Aoife that, "These are Weeping Willows. They're weeping because they're sad."

Next, she found some fox-tails -- the grass plants that have bushy seeds on the ends -- and naturally, to any toddler they look like a device for tickling someone. We chased each other around with them for a minute and then I said, "Hey Aoife, I bet you could cheer up those Weeping Willows with these ticklers!" She thought that was a great idea, so we went up to each and every one of the willows, she did "tickle tickle tickle!" with the fox-tails, and I shook the branches saying, "Hahaha!" And that way, we cheered up all the Weeping Willows at the park.

It's amazing to see how resilient kids are, through all this -- especially at Aoife's age. As long as we keep being the best parents we can be, and she has all the food, attention, time, and sleep that she needs, she's hardly phased by the times when Mom is unwell.

For me, keeping up with work has still been tough. The previous bout of kind donations we received did enable me to purchase a laptop, which has been exceedingly helpful in making me more mobile between the work and health schedule. There's just so much pulling on our time now, it's a lot to keep up with.

But we're seeing a light at the end of the tunnel with this process. Heather and I made a good step towards kicking off a new stage in our personal business ventures, and it feels good to say that even though we're in the middle of a debilitating health predicament. I just finished designing a round of tee-shirts that we'll use as part of our health fundraiser, and it's the first batch of more that will be connected to our Substack and ongoing content creation. More to come, there! Big thanks to our brother in-law, Zach, for helping us by making the up-front payment for the merch.

We also want to thank Zeb Lewis, our financial advisor, for helping us focus on good economic decisions during this time. If any of you out there need financial advisor who knows his stuff and cares about your wellbeing, reach out and we'll see about putting you in touch with him.

Every day we're reminded of how fortunate we are, and -- despite needing to run through the gauntlet -- how positive Heather's prognosis is. We also continue to be blessed with the overwhelming kindness and support everyone has shown, and we can't stop thinking about all the ways we want to remain conscious, remain grateful, and pay it forward. Thanks to all of you, and we'll see you around!

Happy Father’s day to all the dad’s out there! Our daughter’s a real swimmer, and we’ve been spending the day at a local (indoor) swimming hole, which today happens to be not very crowded. I expect that’s because it’s an indoor pool, and most people want to be outside in this nice weather. We just wanted to avoid any sunburns this time.

And since we’re on the topic of sunburn… the past week or so has brought us interesting news regarding Heather’s tests. I believe we already let everyone know that her cancer may be HER 2 positive, which would mean she needs chemotherapy before surgery. Well, not only did that happen, but we also learned that the small tumor on her left side is triple-negative, which is the really aggressive form of cancer.

In a way, the initial discovery of her non-aggressive tumor was a blessing, because it warned us about the bad one that was hiding on the other side. This newly found tumor is only stage 1, and as mentioned last time, only 8mm in size. But, all this does mean she needs to get chemotherapy (and immuno-therapy). We had been telling a lot of people that her surgery was going to be this past week, but that’s been fully swapped out at this point. So, now the plan is for her to be in a round of chemo for about 4 months, and then get the mastectomy.

Heather has always been a health-conscious person, something we focus on a lot in our family, and she supplements her diet with as many herbs and micro-nutrients as fits the situation. But chemo is an oddly counter-intuitive process. Cancer is essentially a group of cells that have gone rogue and work against the rest of the body, like a rebellion in a country. Whatever is good for the security force of a country – be it weapons and food supplies – is good for rebels too. Cancer is made of cells: whatever is good for your normal cells is more or less good for cancer cells. So Heather has to reject practically all of the supplemental things she does to keep herself healthy, and she’s been reading and asking around for pointers on the best diet to maintain while under the treatment. It’s going to be a challenge.

In preparation for her first round this week, however, we decided to have a little fun. Heather had become concerned, wondering, “Maybe having my hair fall out in clumps will make Aoife feel weird and just a little disturbed, so how should we deal with that?” The answer: we got together with some guy friends who like to keep the hairstyle generally known as “bald,” to help shave her head pre-emptively. And we didn’t stop there. He also used some henna to add patterns up on her dome, based off of runes from old folklore.

Interestingly, we discovered Heather looks good with a pixie cut, so maybe she’ll go back to that once the hair comes back. Meanwhile, I think she still looks completely like her ‘natural self’ as she is right now, with or without the hair. Except now, I have the added bonus of having more quips to make. For example, being at the pool: she had her head sticking out of an inner tube and I pretended she was a whack-a-mole. Then I pretended she was a bowling pin and rolled the beach ball at her head. She’s taking it in stride, I think (nothing unusual coming from me, anyway). I’m proud of her being a good sport.

We included some pictures this time to show off the process, which should appear in the gallery section of the campaign. Aoife had fun.

Thanks again to everyone who has been walking with us through this process. And that includes people who haven’t donated – your prayers, well-wishes, and love have all done a great deal to keep us positive through the challenge. I’m sure other father’s out there can fully understand how awkward it can feel to ask for help. You want to be able to provide, and in my case I’ve taken off some time from work and am still playing catch-up.

Plus, there’s a lot of ancillary cost to medical situations. With chemotherapy, she is going to be immuno-compromised, so we still need help with housekeeping to prevent her getting ill. And, diet: good food is expensive, frankly, and just the right diet will be very important for maintaining her health over the next four months.

At the end of the day, this is what my family needs right now, so definitely please consider donating to our campaign. It’s really gone a long way to keep us steady, and we’ve still got more distance to travel on this road. Definitely a special thanks to our people in our local Berkeley Springs community. We are immensely grateful. Thank you so much!

Hello to family, friends, friends of friends, and generous strangers. We wanted to keep everyone informed on the status of Heather in her confrontation with breast cancer. With so many appointments, and an energetic toddler, there’s barely been time to stop and send out an update!

For perspective, the appointments she’s been going to are strewn across the DMV, usually located 1.5-2 hours away from home. There’s the center in DC for her surgery, a center in Baltimore for her reconstruction, and it’s been about 2 out of every 3 days that she needs to go in somewhere.

Once again, we’ve been so grateful for people's support. We are extremely blessed to have a family who cares as much as they do and can pitch in.

Fertility Treatment

Adding to our busy appointment schedule is a fertility treatment Heather’s been receiving. The backstory to that is: we’ve been trying to have another child for a while now. This took us through having 2 miscarriages in 2022. It was a difficult time. After that, we opted to go through IUI treatments, which have been this past year’s adventure. For those who don’t know, Heather is almost past child-bearing years, and while we understand the difficulty of getting pregnant past 40, well... we’re stubborn, and wanted to try and do anything to give Aoife a sibling.

With the onset of breast cancer, we consulted with her fertility doctor, who recommended retrieving her eggs before the cancer treatment. Given that the cancer is hormone-fed, the hormone treatments will effectively draw the curtain on her reproductive system. So, egg retrieval is a choice of “better to have it and not need it.” At least we’ll be able to… clone Heather down the rode, or something.

Upcoming Surgery

Currently, the surgery looks like it will be in mid-June, with a caveat. As Heather’s doctor has ordered additional tests prior to operation, one of those was a PET scan.

The results from the PET scan showed most of what we expected on the right breast, where the large tumor is. As it turns out, there's also a small (8mm) tumor appearing on the left. We had already been leaning towards her getting a double-mastectomy as a prophylactic measure, but now it appears this will be absolutely necessary.

The test also shows ambiguous results for Heather being HER2 positive. In layman's terms, this means the tumor could possibly be a type that will still need chemotherapy, prior to extraction. So we're bracing for the possibility that Heather will indeed need chemo very soon here. In a way, that may be better, because the reason for chemo prior to surgery is to shrink the tumor slightly, ensuring that the whole thing gets removed.

The silver lining is that the PET scan showed essentially no activity in the lymph nodes. So we're still not going to rule out anything unexpected, but things look pretty good in that regard.

Home Life and Budgeting

On the personal side, I'm certainly spending more time taking care of our daughter during Heather's non-stop appointment itinerary. No complaints from me there; Aoife is one of the most fun people to be around. We’ve also been getting good support from friends and family, so that I can be present with Heather during certain appointments. In any case, fortunately I haven't needed to scale back from work too much, yet. But once Heather's procedures start, things are going to get a lot more challenging – especially if we need to go in for chemo.

We talked it over, and figured the best route on that note would be for me to invest in a better laptop. The one I have currently can still type, but it does not suffice for the production software that I run on my desktop. If we were to get a laptop that was more up to spec, then my workflow could be more flexible. That would help me to keep supporting us during this challenging time.

After a quick budgeting session, it looks like the most cost-effective option here would run about $1,600. So, we'll put that in the cards for now. Any contributions will go towards helping us secure that asset, and allow me to keep working while staying around Heather and Aoife during her treatment.

The other thing we're budgeting for is holistic home remedies. In this case, one of the best things that would help Heather’s recovery would be a quality red light panel. This is a newer form of therapy that works by getting energy into the skin and tissue. After Heather’s surgery, the skin of the breasts is going to be much more delicate, and red light would be a great way to help bring blood-flow and energy to that area. The idea revolves around boosting the body’s ability to heal itself. It would be a great aid for her reconstruction.

After spending some of my designated car-ride hours researching legitimate red light solutions, it looks like the best option between cost and quality would run just over $1,000. Any help we can get to meet that goal will be exceptional for Heather’s well-being, as well.

The generosity we’ve already received has enabled us to make quite a few steps towards Heather’s treatment plan. So far, we’ve been able to acquire:

-A medical chair, which mechanically assists her to stand up from it, for post-op. This will enable Heather to see herself to the bathroom if I’m not available at the moment – or get herself one of her endless cups of tea for the day.

-Travel bedding, for when we will be having extended stays at family and friends’ houses during treatment. Fortunately we have a friend in the Baltimore area who lives a mile from Hopkins, and has a spare room we will use.

-And, considering we will be in Baltimore, I got us a membership to the National Aquarium, so that we have a good place to take Aoife during our long stay in the city. While the price is enough to make me wonder if I should feel guilty, at the same time this actually saves us money on finding ways to entertain, educate, and otherwise occupy our daughter through the process. She is 3 and a half after all, and we want her to have as positive of an experience as possible through this situation. We can tell she understands something is going on. She’ll sometimes ask where mama is, and she repeats back, “Mama’s at the doctor,” and she’ll make an expression that seems all-business like. We’ve been explaining everything to her in age-appropriate ways, and it seems to be getting through okay. Our hope is that she remembers this not as, “The summer Mama got cancer,” but, “The summer we went to the aquarium a lot.”

Apart from that, Heather got a gym membership and has been going regularly. A good bit of fitness before surgery will help with a swift recovery. She’s essentially living on mushroom coffee and dried cordyceps, presently.

Otherwise, we’ve been shelling out for fuel, and the rest of our monthly expenses. We are truly grateful to be spared any anxiety about making purchases that will help Heather be comfortable and supported during her recovery. This is all part of creating a healing environment, and the people who have offered their support are making this possible.

One More Thought, and Thank You

Heather has been in remarkably good spirits through her diagnosis, and she is attacking the situation head-on. We’ve had our difficult days, and been swept with emotions here and there, but overall we’re keeping strong together, and her fortitude has a lot to do with that. I am getting to witness first-hand her determination and commitment to good health.

This makes me glad, because I don't want to imagine anyone else raising our lovely daughter. Heather is a strong woman, and we will power through this situation one way or another. Thank you to everyone who's hanging on with us, and thank you for listening to our story.

First of all, we are overwhelmed with the support everyone has shared with us already. Between the donations, the conversations, prayers and the positive messages, we're really feeling cared for. We want all our friends and family (and generous strangers) to feel our utmost gratitude. This is going to be a fairly long post with all the info, so bear with us.

The first thing we did after hearing Heather's initial diagnosis was to finish a project we were working on. This is a music video we're putting together for a cover song, which is going to go out with the launch of our Substack. Heather is in the video, so we had to hurry up and finish all shooting before she gets sent into the gauntlet. Five exhausting days later, we had everything.

Then on to medical business. Heather had a day this past week where she spent at least 5 hours straight on the phone. This was to confirm and double-check every detail needed to have the V.A. transfer her to the Hopkins Sibley Kimmel Center, which is rated 3rd in the country. We are very fortunate to have the ability to send her there thanks to her military service (despite the logistical challenges of making it happen!), and to have it relatively close by.

While waiting for more information from the hospital, we've been giving Heather as much holistic treatment as we can. Her home regimen has involved: bio-feedback, a biomat, and a near-infrared targeted sauna (heat lamp on the affected breast), all thanks to Priscilla Jones. She's also been using frankincense, mushroom supplements, among other supplements and micro bio-machines. Thanks to Jannon for her recommendations in this area. With all of this, Heather has incorporated immersive sound therapy such as solfeggio frequencies. We've also had regular family mantras and prayer times, and have wasted no opportunity reading stories to Aoife and saying "Wheee!".

Aoife has had a bit of fun learning bird songs, lately. A fellow Master Gardener shared with Heather an app called "Merlin," which identifies specific birds from recordings you take outside (or inside, if you're the type to let the birds in).

With everyone's help, we've managed to stock the pantry with extra non-perishables ahead of time. Heather's cancer diet is going to be more restrictive than usual, and we've had to inspect every ingredient. As I've mentioned supplements, everyone's support has helped us with that, which will boost things like immunity, and stress management. And speaking of immunity, we also did a deep clean of the house.

Much of this we did with the expectation that Heather would be needing preliminary chemotherapy, before her mastectomy. As some probably know, chemo diminishes the immune system. So, we wanted to avoid Heather getting sick on top of her condition.

However, as it turns out, she will not be needing chemo as of yet.

That brings us to our meeting with Heather's surgeon, Dr. Hanh-Tam Tran. She is a recipient of many accolades in her field, and we are extremely lucky to have her working with us. Dr. Tran gave us a more detailed overview of what's going on with Heather.

The type of breast cancer that Heather has is called a "lobular carcinoma", which is more uncommon than the "ductal carcinoma", and the treatment needed is quite different. It is hormone-fed, and with lobular hormone-fed tumors, chemo has little to no effect. Heather will get to keep her hair at least a little while longer, fortunately. The tumor is also fairly large, but the Dr. is on the fence about classifying it Stage 2 or Stage 3, due to the kind of tumor, and the current lack of findings in the lymph nodes.

Initial treatment is going to involve, in short: a few more scans, tests, a single mastectomy, followed by hormone blockers to "starve" any lingering cancer cells, and a preliminary reconstruction. Any additional treatment will follow the pathology from the surgery.

During the mastectomy, Heather will have samples of her lymph nodes pulled to see whether the cancer has spread there, and/or how much. We are of course hoping and praying that it has not spread, but if it has, then radiation or chemotherapy will be in order (DISCLAIMER: again, these are things we don't know yet). We will keep everyone updated and cross that bridge [if] we get there.

Also according to Dr. Tran, a double mastectomy will not be necessary, but this brings up the other challenges to the breast cancer experience besides survival, which is quality of life.

If Heather does not opt for a double mastectomy, then there is always a danger of BC appearing on the left side. Because of this, the Dr. would order that Heather receive an annual MRI and mammogram for... indefinitely. For those who have had an MRI before, it's not the most pleasant experience. Nor are mammograms, from what I hear; but MRI's specifically require a chemical injected into the body that remains there permanently. While the medical industry says there's no data demonstrating adverse effects from this chemical, if there is some yet undiscovered effect, then Heather would be in the position of suffering from it.

Therefore it seems 'logical' to choose the double mastectomy and have both breasts removed. She would reduce her need for future appointments, and reduce some risk involved in cancer appearing in the other breast. Then there's the cosmetic aspect: if Heather were to get a reconstruction of both breasts, they would continue to look the same.

What's holding her back from doing both is knowing that she is going to lose all sensation in the breasts. A mastectomy is essentially a kind of amputation. A piece of the body is coming off. Yes they will be doing reconstructions on the breasts, but it will feel to her more like a heavy piece of clothing. Like a peg leg, but on the chest. A "peg chest", if you will. (I'll take this moment to remind everyone that Heather did not write this update...).

Heather is deeply affected by the prospects, in a way that only a woman can be. On my part, I will be sad to see the 'girls' go. But for her, the whole operation will have an impact on her sense of her femininity and how she sees herself. We're working through this, and keeping in mind the decisions that are best for her health, while not pushing anything uncomfortable on her if it's among the few things that are optional. Currently, we are leaning towards doing a double mastectomy and having everything taken care of at once. This means at least four surgeries, and then hormone therapy, plus any other unknowns.

Thank you again to everyone who's hanging with us in this challenge. Besides Heather's ol' existential canard (if you know Heather, this is SOP), so far the hardest part has actually been navigating the travesty of DC traffic and the medical/insurance bureaucracy. But seriously, everyone's support has been a tremendous source of strength and comfort, and we're taking as much time as we're able to enjoy peaceful moments. We will be keeping you all updated as we go forward, and in the meantime please consider sharing our campaign if you have the time.