Health: Much Ado about SOMETHING–Eye Surgery booked!

I have amazing news–news that I am bursting at the seams to let everyone know: I have booked my crosslinking surgery for my eyes!!!! It is one of the single exciting moments in my life: to know I can halt the Keratoconus condition that has caused my eyes to deteriorate so much. And it is only possible because of the amazing fundraiser my boss, Shahid Mahmud, organized, and because of all the wonderful people who shared the link and donated to the GoFundMe account he created in my name. (The link to the fundraiser is here.)

Fundraiser goal metWe made the original fundraising goal, $8000, within days (with donations made by many writers in the community and even Game of Thrones showrunner, David Benioff!) and I am STILL overwhelmed by how generous my friends and complete strangers were. One thing I found out was the sf/fantasy community really does look out for its own. I realized I was truly part of a family in this writing field.

Originally, I was planning to fly back to Australia for the surgery, since the crosslinking procedure there costs only $2500 per eye (it is $4000 per eye in the US). So the boss estimated the amount I would need, and a fundraiser total of $8000 was raised with that goal in mind, including the amount for my flights, too. Well, as with everything, it wasn’t so clear cut as we had originally thought. The surgeons in Australia wanted to see me first before committing to do my eyes, and if I flew in to Australia for that appointment to redo my eye scans so they were current, there was no guarantee they could then schedule the surgery while I was there. And they would not confirm a surgery appointment without approving the scans first. That meant I would most likely have to fly to Australia just to get my eyes rescanned, then fly back into Australia a second time for my surgery. Two flights were not covered by the amount raised in the fundraiser.

So I started to look here for surgeons in the US to treat my eye condition, knowing I had most of the money raised to get it treated here, but in the meantime I fell incredibly ill. I developed a major flapping DVT (clot) in the superior vena cava (major artery) leading to the heart. I was with my boss at the time, during a work convention, and all I knew was that my pulse was racing and I had a lot of sudden pain and sensations down my right arm. He put me on a plane that morning to get me somewhere safe, and I went straight to the hospital to get diagnosed. I then spent two months of long recovery that was never quite complete: I had lingering racing/jumping heartbeats, high blood pressure and a lot of enlarged lymph nodes (and one that had “changed”) to deal with–let alone passing a very painful clot. I was told not to organize any procedure, even an eye procedure, until we knew what was going on with my body.

Then a few months later, just as I was starting to get fit again, I collapsed and had a TIA (small stroke caused by a clot fragment in the brain!) and I experienced my second near-death scare moment within a handful of months. The new thinners I am on were stopping me from creating new clots, but old clot debris was still floating around, so to speak.

Anyway, that brings me to the medical diagnosis I had two days ago. I had another fall (got a concussion) and the docs were alarmed at how high my blood pressure was, which has been abnormally high since I had the clot diagnosed in November. I was sent to hospital, and long story short, I was rushed into the Cardiologist appointment two days ago. I will have a ultrasound next week to check if my lymphs under my arms have returned back to their normal size, but at least now know what is going on with the rest of my body. It appears I have a heart condition on top of a blood pressure condition on top of my two blood clotting conditions!

Yes, you read that right. Apparently the reason I am having so much trouble regulating my circulatory system is because multiple conditions are (while not necessarily bad by themselves) reacting with each other and creating a perfect storm in my body. My newly diagnosed heart condition, supraventricular tachycardia (SVT), causes a fast heart rate that begins in the upper chambers of the heart. With SVT, abnormal electrical connections to the heart cause it to beat too fast or jump. My heartbeat has been too fast since I first got the clot (usually 100 beats per minute, and up to 160 beats per minute, even when asleep). And apparently, if the conduction of blood around the body is uneven, this arrhythmia can also cause clots because the blood is pooling when it shouldn’t or isn’t being pumped smoothly or properly around the body. With my blood clotting conditions, it could have increased the risk of me creating that deadly clot last November. 

So as you can imagine, the docs had a reason to not want me to have any elective procedures until I sorted out my body. I also found out from the cardiologist that, usually, a racing and irregular heartbeat brings down blood pressure (and causes interrupted oxygen, hence my dizzy periods), so she said she would hate to think how high my blood pressure would be without the heart condition dragging it down–it was 210/90 in the hospital last week, which is way too high.

But surprisingly this all GOOD news to me. Don’t get me wrong, it is not good I have a heart condition. What is good is that I have a diagnosis and while these various conditions have coalesced to make me a currently very sick girl, all these things are treatable. I am already on the right tablets for the blood clotting conditions, and now they know what to put me on for the blood pressure and SVT. If the heart doesn’t slow down, they can even go in and delicately burn those errant nerves (a fascinating procedure to have explained), so I know I will not always feel this warn out and sick. There is a light at the end of the tunnel, even if I’m too exhausted to reach it at the moment….

Which means I could finally book my eye surgery! I will still feel miserable for the next month or so, and will be on a heart monitor until I even out the regulatory systems of my body, but they say I will be one of the healthiest humans on the planet once my meds are working, because I don’t drink, smoke or drink (I even stopped having caffeine when these problems first started). All I need is a little help to get my body in balance again.

So I started researching eye surgeons–including one I met on Instagram: Dr. Brian S. Boxer Wachler, who is a Keratoconus treatment pioneer.

According to his website: Dr. Brian Boxer Wachler is a leading keratoconus treatment expert. He is considered by many as “The Keratoconus Guru.” He was the first in the United States to report the results of Intacs® for Keratoconus in 1999. For over 19 years, he has performed many thousands of Keratoconus procedures on patients from all over the world. He published the largest study to date on Intacs® treatment for Keratoconus. Due to his pioneering work, Intacs® is now recognized as a treatment for Keratoconus. He invented the non-invasive Holcomb C3-R® Crosslinking System in 2003 and has the largest experience with crosslinking in the world outside of Germany.

Dr. Brian is a best-selling author of three books on Keratoconus and is known as “America’s TV Eye Doctor”, appearing regularly on shows and in news appearances about his Keratoconus procedures, some of which he pioneered. He was also the first doctor outside of Germany to perform corneal collagen crosslinking and I soon realized that if I was going to trust anyone to do the crosslinking procedure on my eyes, why not trust the guy that created the procedure (Holcomb C3-R), one that is less evasive than most, ensuring minimal chance of infection.

Watch Dr. Brian being interviewed on a news station, where he gives a great description of Keratoconus and how it affects his patients, talks about his treatments and how he saved the sight of a future Olympian below:

So once I decided to get my eyes done by Dr. Brian I contacted his office this week (I had already talked to him personally a couple of times over the last few months and he had very sweetly taken the time to answer my questions) to book my surgery.

Here are details of my crosslinking surgery (squee!), according to Irene, Dr. Brian’s administrative assistant: 

Monday, Feb., 4, 2019. Arrival time of  8:30  a.m.  INITIAL EXAM this day. Plan to be in the office for 3 hours. 

Tuesday, Feb., 5, 2019. Time to be determined on the day of the exam (4th). This day would be the SURGERY DAY.  You would need a driver or we can release you to an Uber, Lyft or Taxi Cab.

Wednesday, Feb., 6, 2019 would be the day of your POST OP and that would be at arrival time of 8:45 a.m. Plan to be in the office for 1-1.5 hours. You would need  a driver or  we can release you to an Uber, Lyft or  Taxi Cab.

Here’s a breakdown of the cost:

Below you will find the updated breakdown of pricing for the time frame when you do come out for a 3 day visit (Feb., 2019):

Exam              $410

C3-R               $4,000per eye

INTACS          $5,200/per eye

ICL                  $5,800/per eye

At the time of scheduling appointments, we collect a non-refundable $100 appointment booking fee that would be forwarded to the initial exam appointment. In addition to these fees, patients would need to be prepared to purchase all necessary prescriptions. Typically prescriptions can vary from $80-$400 (depending on the recommended treatments after the initial exam). Also, Dr. Brian ask that patients start a supplement regimen of Optimal Flax and Optimal Eye (antioxidant) for at least 6 months post operatively. The  6 month supply each typically run around $264 and will be added to your surgery fee.”

So that means, by getting the C3-R crosslinking procedure done (link here), which would stabilize my eyes and prevent more deterioration, the total cost would be $9064, not including flights and accommodation for those three nights, which is estimated to cost approximately another $1000 to fly (from Ohio) and stay for a few nights in Beverly Hills, California, where Dr. Brian operates from. That means I will need a total of $10,000 to get my eyes done.

While I would also love to get Intacs during the same procedure (plastic inserts that reshape the cornea to improve vision and lesson the doubles; link here), or ICL (kind of like contacts inserted IN the eye that could bring 20/20 vision back; link here), the EXTRA $5,200-$5,800 cost per eye would be impossible for me to save on my salary, and especially not before February. The most important thing is I halt my keratoconus, so it does not get worse, and at least I will be able to do that with the C3-R crosslinking procedure my fundraiser donators helped pay for.

Out of the $8300 donated (thank you so very much, everyone!), $7593.39 was transferred to my bank after GoFundMe subtracted their fees. That leaves me with $2406.61 to be saved to make my $10,000 goal by February. While one of the reasons I have to wait for surgery is to make sure I am healthier medically, it is also so I have some time to save the extra $2406.61 I need to get this surgery done.

I hope to save the money myself in the months leading to the surgery, but the mountain of medical bills I have to pay because of my seven hospital visits will make that goal harder to achieve, and I have to pay for the surgery IN FULL during the pre-surgery appointment on the 4th (one day before surgery!). So my boss, Shahid, has raised the fundraiser goal to $11,000 (to take into account the GoFundMe fees taken out), so that the Fundraiser goal is increased by $2500–the amount of money I still need to save for the trip. I do not expect anyone to donate–I am still overwhelmed and thankful for the generosity I have already received–but at least the goal now reflects the full surgery amount, now that we know the breakdown of costs.

Thank you, to everyone who has donated. I would never have gotten this surgery done without you all–my family, my friends and the sf/fantasy community. I’m excited and can’t wait to literally see what changes February brings!

 


 

The link to the fundraiser campaign is here. Otherwise, if you are new to hearing about Keratoconus, the details of the original fundraiser and why I have so much trouble seeing is below, as written by my boss, Shahid Mahmud: 

Many of you know Lesley Robyn Glover (and I would like to introduce you to her if you don’t). She writes sf/fantasy as Lezli Robyn and works as my Assistant Publisher for Arc Manor. (She can be found here: https://www.facebook.com/lezlirobynglover!)

What many of you who already know her may not realize is that due to a rare eye disorder, which is progressively getting worse, she is now considered legally blind without correction (she cannot read the any number on eye charts).

When Lezli was 23 she was diagnosed with an unusual condition, Keratoconus, which is characterized by a progressive conical protusion of the cornea that results in her eyesight being distorted to the point where she sees multiple images on top of each other, as well as distortions, ghosting and halos.

(Diagram: Click here for extensive information about the condition on the National Keratoconus Foundation‘s website, and why Lezli sees this way.)

As her condition has progressed, her cornea has decreased in thickness and the cone like shapes on her eyes have become more pronounced. Her eyesight has deteriorated over the years to the point that she often can’t recognize people until they are a yard’s distance of her.

Since this is a progressive disease, her condition continues to get worse every year. But there is a new treatment to halt this progression, and maybe even reverse some of it.

(Photo: If you look at her eyes, you can see the cone shape of her corneas.)

Since coming to work for me, I have seen how much more difficult it is becoming for her to cope with her work as well as every-day activities as she deals with the lack of depth perception and significant distortions to the sights we take for granted.

On her return to Australia to see family, Lezli was able to get a full eye exam where they took topographical maps of her eyes, and they did multiple focus and measurement tests of various factors in her eyes to determine she is now legally blind without any form of correction.

And that is where you kind folk come in. It used to be that the only true effective treatment for Keratoconus was to get transplants, which is both risky and extremely expensive. However, in the last five years a new treatment has become available called cross-linking. Now, I confess to not knowing much about it when she first sent me the update, but I have since looked it up and I can see why she was so excited about it.

(Click the link here for comprehensive and detailed explanation of the surgical procedure, by William Trattler, MD, a board-certified ophthalmologist specializing in refractive, corneal and cataract eye surgery.)


Since I pay Lezli Robyn I know what she earns–and it is not enough to be able to easily afford to pay for the treatment without which her eyesight will continue to get worse.  I am also aware of financial and medical difficulties her parents are undergoing and it is almost impossible for them to fund the treatment.

Currently a minimum of $2500 for each eye is required just for the basic procedure (not including specialist tests. medications, etc.) in Australia and it’s not covered by Lezli’s Australian medicare (see Optometry Australia‘s article about it here ). The cost in the US, of course, can be significantly greater (up to $4000 per eye!) so it may actually be cheaper for her to fly to Australia to get the procedure rather than have it done in the US.

So I am asking our friends to join me in raising money for Lezli to be able to get this procedure done as soon as possible–before her eyesight gets worse. Keratoconus does eventually slow down in its progression but there is no specific timeframe, and in Lezli’s case the progression has consistently continued unabated.

The procedure (more detail below) has an almost perfect record of halting this progression and it may even improve her eyesight! (In a minority of cases, the procedure not only halts the progression but it often improves the vision.)

Moreover, after the condition is halted, her cornea’s will also stop changing shape so regularly, so she would be able to get contacts or glasses to help her see better–her current degenerating condition does not allow any prescription glasses/lenses.

At the moment Lezli believes $8000 should cover most, of it, and I thank you for any amount you can donate–even if it is only $5!


A litte more about cross-linking: “Collagen cross-linking is a quite recent medical procedure that employs the use of ultra-violet light and drops to help slow or completely half the condition. Under topic anaesthesia, the top layer of the cornea is loosened and the riboflavin drops (vitamin B2) are dripped into it for 30 minutes. This light causes the riboflavin to fluoresce, which as the effect of strengthening the bonds between the collagen molecules–stiffening the collagen fibers, ultimately strengthening the cornea.”

While it isn’t a cure for Lezli’s condition, it does halt further progression of the condition, and has been shown to strengthen the cornea by around 300%.

“The results over a period of 3 and 5 years of a Dresden clinical study have indicated that in the case of 60 eyes researched, the progression of Keratoconus had been stopped in all cases. In 31 of the eyes there was a reversal and flattening of the cornea and visual acuity was improved. Similar success was found in a later study in which 281 eyes were observed for up to 6 years following the procedure. Only 2 of the patients showed signs of any further progression of the disorder, and they both responded successfully to re-treatment.”

Health: Much Ado About Something

So, I was talking to a good friend yesterday–hello Alvaro!–and he said to me that when looking at my recent Facebook posts it appeared that I had been “ticking along fine”; I gave no indication I had been sick.

In fact to most people, including many friends, I’m sure it has looked like I’ve been ticking along more than fine. But I haven’t been. Not really.

Sure, my heart was ticking, but it had been racing far too fast for over two months–at around 110-130 beats per minute. For a while it had even been irregular, struggling.

However, that is now a non-issue. My heart is still a little fast, but now within normal range. An echocardiogram taken of my heart recently shows I have sustained no damage; all my valves and muscles are in perfect working order. Medically, my heart is perfect, even if it felt broken for a while.

So, what caused so much upheaval in my body? For those who read my Facebook posts, you will know I rarely post about health. But sometimes, the quickest way to update many people when you are too acutely sick to message multiple people individually, is to make an online post to let loved ones know that you might not be online for a bit, but you are fine.

Even if I wasn’t.

That is what I did just before Thanksgiving last year. I had been in St. Louis with the boss, excited to be doing a new convention with him, until my arm started getting inexplicably painful. There seemed to be no cause–just pain. Lots of pain.

I was heading to Santa Fe, and friends, a few days later, to celebrate Thanksgiving, so the boss and I discussed ending my work trip earlier, so that if I needed medical treatment I wouldn’t be stuck in St. Louis, where no one I knew lived. We also weren’t sure if this was just a minor but freakishly painful strain/muscle tear injury to my arm, so why cancel my Thanksgiving plans before we know if it is anything serious? It was decided I should fly to Santa Fe earlier, so I could get the oh-my-god-why-does-this-hurt-so-much pain in my arm checked out where I knew I would have a support system if needed.

If you read a post I made on Facebook in the middle of November, you’ll know that it wasn’t a muscle tear, and it wasn’t minor, but it definitely was freakish. As soon as I arrived in Santa Fe I went straight to the hospital. It was discovered I had a major “flapping clot”–technically a DVT–in the superior vena cava (SVC), the superior of the two great venous trunks that return deoxygenated blood from the systemic circulation to the right atrium of the heart. Effectively the clot was limiting blood flow from the arm and my face (where, by that time, I was also feeling some sensitivity) to my heart, causing extra pressure and pain.

I knew it was serious when the ultrasound technician quite literally said “Oh shit” when he found the clot, and told me not to move my arm at all. I was transferred to a larger hospital, where it was debated whether they should blast the clot apart. If they did, that could mean they might not retrieve the bits fast enough before they hit the heart, which in turn could trigger another kind of blockage and a heart attack. I had already been told that day that if the clot had not been flapping (which also made it more precariously attached), it would have been a full blockage: they would have discovered it on the autopsy table because I would have gone into full arrest. My docs were not willing to play the odds with my heart, so I was told I had to dissolve this clot the long and tedious way: I was put on newer, better blood thinners and told not to use the arm, when possible, while the clot (eventually) dissolved.

To say I was in a state of shock is an understatement. I had been so close to dying.

Again.

Just eight years earlier I had also had a “near thing”. After the high of being a Campbell nominee at the Aussiecon Worldcon, and catching what I thought was severe con-crud followed by weeks of doctor hopping, I had been taken to hospital by ambulance and was eventually diagnosed with Factor V Leiden and Protein C Deficiency–both of which were conditions that thickened the blood. I had presented to the hospital with pneumonia, pleurisy, kidney distress, a urinary tract infection…and over a dozen lung clots! (I had so many clots that the hospital said I “lit up like a Christmas tree” when they did the CT scan with contrast, and they had never known of another case so severe, until my friend Amanda coincidentally ended up in the same hospital several years later with just as many clots and the same FVL diagnosis).

This time around it was just one clot, but it was in a more precarious position. I had already realized the value of life eight years ago as I had literally hacked up blood and spent a year just getting basic lung function back. The smallest things in life truly have so much more value when you realize you could have lost them–lost everything.

But my body would not let me forget how precious life is this time around. For nearly two months my heart and blood pressure were too high, my heartbeat irregular, and I felt constant pain down the arm. If I wasn’t sitting, I was shaking just to walk. I was constantly nauseous without any apparent reason, continuously faint, and I was weaker than a baby….

I was also hot, 24/7; I had constant temperatures. In fact, I was so hot that I had a heat rash most of the time, and when I was on a movie set a month later (Yes, really! A Lou Diamond Phillip’s movie! Squee!) I was watching a pivotal shooting scene being filmed outside wearing just a simple cardigan. It was December winter weather and I still felt SO BLOODY HOT!

Not only that, I had another medical cloud floating over my head. CT scans had discovered enlarged lymph nodes, which probably were contributing to how crummy I felt. There was mention of the terrible C word, and many follow up visits. My insurance denied an MRI, so I had to wait another month (during which I had yet another ambulance trip and hospital stay) before I could get an ultrasound and 3D mammogram on my breasts and underarms. They confirmed the multiple enlarged lymph nodes, but because my body has gone through so much, they assumed (hopefully truly) that the increased pressure in my body was due to the clot decreasing blood flow causing particulates of the blood to ooze out of the vein walls into surrounding tissues in amounts the lymphs had trouble filtering, thus causing them to swell.

Yet the scan results also showed one of those lymph nodes had “thickened walls” and was considered “changed”.

*gulp* To say this was a surreal and stressful time is an understatement. On one hand I was so grateful to be alive, and on the other hand it felt like that life was still not certain. If I had have had nothing else medically wrong with me they said they would have biopsied that lymph, because the way it appeared implied the start of that dreaded C word.

But I did (do?) have a lot of clot strain on my body, and a lot of secondary symptoms, and the lymphs were swollen on both sides of my body, which implies a systematic distress, but not the start of the big C. Cancer usually starts in one side of the lymphatic system, not both, simultaneously.

So my “changed” lymph node has been determined, in a official report, to be “probably benign”.

Probably.

Comforting, eh?

Yeah. Not really. But I can understand why they want to wait for three month follow up scans to conclusively prove it is not cancer, in lieu of a biopsy, before they officially label it as simply “benign”.

Which brings me to this post today–and a follow up. They deemed in January that I was too fragile to be taken off thinners to do a biopsy, when the change in the node(s) could have been caused by the clot itself. I have been advised that no surgery is recommended for as long as the lymph nodes are suspect, and probably not for the rest of the year unless for emergency reasons, so my troublesome nodes have more time to recover.

That means the lovely gofundme fundraiser so many of you lovingly backed, to halt my keratoconus via the amazing cross-linking procedure, is now on hold until the end of the year, when my body will be more equip to heal from a surgical invasion, even as small as the one to my eyes.

The thinners are what’s breaking up that deadly little time bomb in my body, so none of medical team were willing to rock the boat by taking me off them to biopsy a lymph. I am also all for improving my overall health before I put my eyes through a sensitive procedure, so I agree with their assessment. I have never felt so physically miserable as I did these past few months, even while I was so elated to be alive; I owe it to my body to be as careful and gentle with it as possible.

And I have recently had further reason to be more careful. (Yes, there is more–I don’t do things by halves!) At the start of the month (or was it the end of last month?) I collapsed. I had some warning of strangeness about to happen and then woke up on the floor. I called the boss officially to “call in sick”, and to make sure I was talking to someone while I was organizing aid to get to the hospital. He said that I was talking slower and I slurred my words a little. I didn’t know that, but I did have this strong impression that I just could not get the words out that I wanted to say.

I was taken to the local hospital, where I thought “Oh, I have just overworked myself. I am still so weak. They will check the clot hasn’t gone anywhere bad and I will go home to rest.”

No. The docs–the ones with the actual expertise–had not been in consensus with me. Words such as “arrhythmic event” “epileptic fit” and “stroke” were soon being added to medical jargon also uttered. My slurring and slowed speech, as minimal as it was, was a red flag to them. I was transferred (my third ambulance trip in as many months!) to Riverside, in Columbus Ohio, where I spent the next four nights in the Neuro Unit/Ward/Hospital wing being–quite literally–tested hourly for signs of neurological trauma.

As you can image, getting my eyes done was as far from my mind as possible by this stage, although my eye condition hilariously (and inconveniently) meant that it was impossible for the nurses and doctors to do eye coordination tests on me to discover indicators for neurological damage. I literally see doubles, having Keratoconus, and so I will never be able to touch your finger if you hold it in front of me. (As a friend recently said to me when I recently fell down a set of stairs, “You walked down the wrong set of stairs”, because I mistook one of the doubles for the real thing and literally misstepped.)

So what was the verdict? Not seizures. Also, I was told the event was probably (there is that word again!) not triggered by an arrhythmic attack either, although I am to wear a monitor for a month to study the rhythms of my heart, since it has been under strain since November. No, the verdict appears to be a stroke. Not from a hemorrhage in the brain, but either that pesky SVC clot had broken off, to block a pathway to my brain (TIA), preventing oxygen flow to my blood/nerves/tissues for a select amount of time, or there had been another ticking time bomb (clot) floating around my body before the new blood thinners had taken effect.

Either way, my inner monologue was something like “Oh-my-god-I-had-a-stroke-I-am-too-young!”, in a somewhat panicked realization. It felt so surreal to be in this position where the breaking up of a clot (or two) meant that I had a second near death experience within months. But physical exercises confirm that I have left side weakness (some nerve damage?) and decreased sensitivity. Although it is minor–I am such a lucky girl, for being so incredibly unlucky–the strain on my body has been hard to keep up with.

I sleep continuously, when not working. And I feel like I’m working continuously. to catch up.

I have yet to have my follow up with my neurologist, and I am looking forward to clarifying exactly what happened now that I’m a lot more conscious. Hourly wakings at the hospital for nearly five days straight took a toll on my ability to stay alert and cognizant of the finer details.

But I am alive, and that is what is most important.

I have also been assured that on my new thinners I should not get any more clots, which helps me avoid the whole “near death” experience yet another time. I still have to get the follow up results of the lymph scans, but it is nice to know I won’t have little ticking time bombs within me causing more dangerous blockages. I can, and will, get so healthy it will make you sick. *grins*

I have already made such great progress on my path to a healed body over the last few months, losing a lot of weight to get fitter (now you know why my FB post about being able to exercise was such an important milestone for me), but I’m still experiencing the symptoms of how close I was to losing it all. So if I hug you a little too hard, or am too vocal in my feelings, it is because I know how important it is to let my loved ones know how special they are to me.

I am sure I have a long life ahead of me, but most people go through life never knowing how precious their life is–to me, and to others. While I felt so worn down, so fragile in the days following each diagnosis, the life I saw around me was so vibrant and beautiful, I wanted to be a part of it, no matter what it cost me to get out of the bloody bed.

So I’m now going to write more words in the form of my first novel (yay to more firsts!), love my family more fiercely, and treasure the amazing people in my life that got me through the most difficult three months in my life: my boss, who has gone above and beyond to accommodate my absences and limitations this has caused me at work; the various medical teams, whose actions put my life on a more even keel; my friends in Santa Fe, whom wrapped me up in love and delicious food and a multitude of geeky gifts at Christmas; the special people across the interwebs and country borders, who stayed with me constantly online whenever I needed a mental shoulder to lean on (you know who you are! <3).

Thank you for showing me what it means to live these past few months. I will treasure the life you have all given me.

The last three-four months in pictures. Me living life:

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My heartfelt thanks to the SF/fantasy field

Fundraiser goal met

Screenshot_2015-03-27-13-36-09_mh1427434705549I am feeling so very overwhelmed, happy, and so very thankful. Gofundme donators have now raised the entire $8000 needed for a new and 100% successful cross-linking surgery on my eyes to halt the progression of my Keratoconus !!! I would love to thank my family and friends and the many authors, editors, publishers, artists and readers/fans of the sf/fantasy field for amazingly generous donations made to the surprise fundraiser my boss, Shahid Mahmud (who deserves the most thanks!), created to help me raise the money. Not in my wildest dreams would I have believed I could have had this surgery within the next five years, because it’s not a cheep procedure, and now I can have the procedure done within monthsas soon as I can organise it with the surgeon!

(Here is a link to the fundraiser: https://www.gofundme.com/lezlirobyn.)

cornea-shape-keratoconusI am most moved by the huge swell of support from the sf and fantasy field. While I know my family would donate if they have the means, because I am their loved one, so many other people donated and shared the link (282 times since last check!) just out of the kindness of their heart, or because I was part of the sf/fantasy community. In particular, Robert J. Sawyer‘s sharing of my fundraiser meant a lot of his fans and friends donated, and Marianne Plumridge‘s regular re-sharing kept it in the forefront of people’s minds. Then George R. R. Martin wrote a blog in support of the fundraiser, which meant numerous of his fans and one of the showrunners of the hit Game of Thrones TV show, David Benioff, donated a significant amount towards the total I need. Then File 770 added it to their blog reel here (item 4) and here (item 2), Joe Lansdale shared the email GRRM forwarded him about it online, and SF Site also posted about it, which was reblogged at Parallel State. So many artists, publishers and authors, from Joe Haldeman in the US and Juliet Marillier in Australia, were sharing it on their FB pages…then agent Eleanor Woods and her son, Justin, mailed a generous check after they heard about it via email. (And this is only a fraction of the 162 donators, and does not include the luminaries of the field who wanted their donations to stay anonymous.)

specialist-lenses-06-1200x600I have so many people to thank. I am especially thankful to the readers who donatedthe people who, like me, might not have too much to spare, but still donated anyway. Even one of the first fans of my writing, a voracious reader, donated and left such a lovely message on my fundraiser (I’m looking at you, Jo Van Ekeren) that it moved me to tears.

14886f5a2103c7407c263d4b712257e5In fact, I have been brought to tears several times over the amazing outpouring of generosity of the donations and the lovely messages written by those who have shared the fundraiser all over the web. And, let me tell you, it’s quite the bittersweet experience for me when I cry. My tears fill in the thinned parts of my corneas that the Keratoconus has eroded over the years, creating a more even, rounded, surface. So even if it was sadness that had caused my tears, for that split second my vision sharpens I experience a moment of wonder and surprise as I see how beautiful and vibrant the world really is, until gravity or the blink of an eye causes the tears to fall to my cheeks.

So, I thank you for the tears; I thank you for your generosity. I have always maintained that the sf/fantasy community operates a lot like a family. It might be a sometimes dysfunctional and controversial family at times, but it is a field notorious for paying it forward to the younger generation. Well, you guys have paid it forward this month to give me sight, in a field I like to think is full of vision for the future, and I can’t show my appreciation enough. Thank you all, from the bottom of my heart.

Here are what some lovely people said about the fundraiser:

My Aussie friend Lezli Robyn is a talented young writer and editor. She’s a Campbell Award nominee, one of Mike Resnick’s “writer babies” and sometime collaborator with Mike, and the assistant and right-hand-woman to Shahid Mahmud, owner and publisher of Arc Manor Press, the parent company behind GALAXY’S EDGE and a growing line of SF and fantasy classics. Many of you will have met her at the Kansas City worldcon or various regional conventions, manning the Arc Manor table in the huckster’s room, always with a smile on her face.

But now her eyes are failing her, and she needs help if she’s not to lose her sight.

Shahid, her boss and one of the good guys in his own right, has stepped forward to prevent that and established a Go Fund Me to get Lezli the procedure she needs to save her sight. You can find it at https://www.gofundme.com/LezliRobyn All the details are there.

Go. Read. Give.

It’s a terrific cause for a terrific person.George R. R. Martin

Many of my friends will know Lezli Robyn as a lovely person and a highly original writer. I’m sharing this in hopes that some of you will donate to the campaign to fund her very important eye surgery. Every dollar helps!Juliet Marillier

And in response to the inpouring of donations:

Wow! GAME OF THRONES showrunner David Benioff just donated $500meaning the fundraiser for Lezli Robyn‘s eye procedure is now three-quarters of the way to its $8,000 goal after just three days! Lezli is legally blind and needs this procedure. Many thanks to all my friends who have already donated!Robert J. Sawyer

And lastly, to echo my friend’s sentiments, I’ll leave you with this lovely comment:

I know that SF and Fantasy fandom/professional creative industry has its ups and downs, feuds, indifference, effortless nerdy geekdom, sometimes strained, sometimes so much fun…but I do love it when we come together to support one of our own, heedless of personal peccadilloes. Thank you one and all, on behalf of my friend.Marianne Plumridge

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Get Soulmates, by Mike Resnick and Lezli Robyn, for FREE!!!

SOULMATES, by Mike Resnick &amp; Lezli Robyn, published by Phoenix Pick. Cover by Juan Miguel Aguilera. (United States, October 2016)
SOULMATES, by Mike Resnick & Lezli Robyn, published by Phoenix Pick. Cover by Juan Miguel Aguilera. (United States, December 2016)

It is my pleasure to announce that SOULMATES, by Mike Resnick and myself, is part of a special sale!

From between the 20th of April until the 20th of May, if you purchase the Amazon ebook of SOULMATES for $6.99, you will be reimbursed with a $10 coupon by publisher, Phoenix Pick, to be used on ANY ebook within their online catalogue or put it towards a paperback bundle purchase (when buying it directly from the publisher’s website)!

To find out details about how you can claim your $10 coupon, click on this link or copy and paste the below link into your browser:

http://www.phoenixpick.com/Books/Soulmates.htm

We are starting to get some amazing reviews on Amazon, and if you feel so inclined to buy our book, consider leaving us a review once you’ve finished reading it. It helps raise exposure for SOULMATES, which helps us poor starving authors make even more sales.  *grin*

For more information on the book, including back cover detail, table of contents and reviews, click on my SOULMATES page from my Publications submenu!

Below are pictures of some of the amazing artwork our stories/novelettes have garnered over the years (you can find many more images on my Covers & Illustrations page), the awards we have won, and the book’s first sighting at Worldcon in Kansas last year (2016!). (Yes, that is Robert Silverberg talking to the publisher, Shahid Mahmud in that photo!)

 

 

For those who want to buy SOULMATES–I hope you enjoy it. It means you get a couple extra books for free! What is not to love about this deal?

Readercon: Books, books, songs, and even more books!

IMG_0048Last weekend I went to my  first Readercon, where the Dealers Room was actually labeled The Bookshop, because it only contained–you guessed it–books. (Including two I am in by Baen: Mission: Tomorrow, and Galactic Games!) I absolutely loved seeing so many books in the one large room. 🙂

It was an absolute pleasure to catch up with Neil Clarke, publisher/editor of Clarkesworld, where I sold my first ever short story, and to have dinner with editor/writer, Alex Shvartsman, who is editing the latest Phoenix Pick anthology Humanity 2.0.

2016-07-09 13.01.51.jpgI am proud to say I kept writing throughout the weekend, even managing to complete a 1500 word scene while working our table on Sunday! I was also incredibly chuffed that by the end of the con there was only one copy of our first Arc Double book left, which pairs two novellas by Joe Haldeman and Gregory Benford. (This book series is my first idea for Phoenix Pick to come to fruition, so I want it to sell well!)

While I was too busy 90% of the time to attend any of the panels, I did drop into the I’m Sorry, I Haven’t A Clue panel at just the right time on Saturday night to see the panelists (including GOH Catherynne Valente) sing the lyrics of one song to the melody of a very different type of song, to most hilarious effect. And yes, I recorded it for your viewing pleasure. Enjoy! The last song is a real pearler! 😉

Panelists (from left to right):

  • Max Gladstone: Lyrics of Beyoncé’s SINGLE LADIES, sung to the theme of NEVERENDING STORY.
  • Catherynne Valente: Lyrics of Amy Winehouse’s REHAB, sung to the theme of INDIANA JONES.
  • Heath Miller: Lyrics to Taylor Swift’s SHAKE IT OFF, to the tune of Les Misérables’ DO YOU HEAR THE PEOPLE SING!
  • Martin Cahill: Lyrics to Johnny Cash’s HURT to the tune of R.E.M.’s SHINY HAPPY PEOPLE.
  • Maria DahvanaHeadley: Lyrics to Adele’s HELLO to the tune of The Rocky Horror Picture Show’s SWEET TRANSVESTITE.

Sail to Success Workshop Cruise

Norwegian Sky

Did you know I’m going on my first ever cruise on December the 4th-9th this year? At the moment I’m in the middle of deadlines (in the Day Job and as a writer), so I’ve only been sticking my head up out of the water to create this website, work or play at conventions…or rupture eardrums while battling a month-long case of pneumonia (wee!). But I added a page to my website about the cruise (which launches from Miami), and wanted to let my writer friends know, because not only could they bunk with another student to save on costs, bring several guests with them, or simply hang out with meeeeeee on the beautiful beaches of the Bahamas, there is this totally awesome workshop faculty they can learn how to get published and have one-on-one meals with:

Cruise Authors

I already love my job—I mean, I create books. What’s not to love?—but to be able to help run a writing workshop on the Norwegian Sky cruise ship is the icing on the cake. This will be its fifth year running(!!!), and is limited to only 22 students, so it makes for a much more interactive learning environment. Combine that with the chance to make story sales (to Galaxy’s Edge), and being able to network in exotic location.. now wonder it’s called Sail to Success!

I have to get my head out of the clouds and get to some real work, but click here to find out more or learn how to sign yourself up!

Cruise logo

The first Arc Double is here!

Arc Double copyright page
ARC DOUBLE book design by Lezli Robyn

In my role as Assistant Publisher for Arc Manor (which publishes Phoenix Pick books and the Galaxy’s Edge magazine) I have the pleasure of bringing words to life in the form of new books. Well, here is my first project as Concept Designer: Arc Doubles!

This book series brings back a popular format by Ace Books, where two pieces of fiction are paired together, but flipped so that each novella starts on a different side of the book, with its own cover.

Our first book in the series pairs The Mars Girl by Joe Haldeman, and As Big as the Ritz by Gregory Benford. While widely different in style and plot, both novellas tell the story of human who seeks out adventure on a new planet, uncovers a great secret, and ultimately has to make a decision that will irrevocably change the course of their lives (and humanity), forever!

This book was a delight to put together. You can buy the kindle ebook here, the nook ebook here, with links to the paperback edition on both websites! Attached is a photo so you can see how cool the cover is for both versions. Enjoy!

Arc Double: AS BIG AS THE RITZ by Gregory Benford &amp; THE MARS GIRL by Joe Haldeman
Arc Double: THE MARS GIRL by Joe Haldeman & AS BIG AS THE RITZ by Gregory Benford

New website and cover reveal!

Welcome to my first ever blog, on my brand new website!

I am launching my website today, with absolutely stunning artwork by Robert Rogalski! Feel free to click through all the pages and leave comments, when/where inclined. You can see my covers and illustrations, my upcoming convention appearances and books, and there are panel videos to watch and audio files of my stories to listen to!

Aside from setting up my website, I have had a very busy couple of weeks since attending Balticon. I am in the process of getting three of my own books ready to go to press at Phoenix Pick and Hadley Rille Books (with another two to publish soon after!). The first book to be published is Soulmates, which is a collection of short stories and novelettes written with Mike Resnick. Here is the gorgeous cover by Juan Miguel Aguilera:

SOULMATES, by Mike Resnick &amp; Lezli Robyn, published by Phoenix Pick. Cover by Juan Miguel Aguilera. (United States, October 2016)
SOULMATES, by Mike Resnick & Lezli Robyn, published by Phoenix Pick. Cover by Juan Miguel Aguilera. (United States, October 2016)

The book is titled after our novelette of the same name, which originally sold to Asimov’s, was sold another dozen times to countries around the world, and was nominated for three SF awards (winning one of them!).

Despite that, we think that the book’s opening piece, “Benchwarmer”, is the better of the two (it also won its own award!). We hope we’re on the right track when our copyeditor says the story made her cry. <grin>

The book is slated to have a pre-launch at MidAmeriConII, in August! I will update with more details once I know. It’s time for tea, chocolate, and more words!