Strictly Speaking

Originally drafted March 2nd, 2014. Redrafted, edited, obliterated, and corrected no fewer than 68 times since. 

The side effect I’m about to share with you is something that may be temporary or permanent. We don’t know whether it is an effect of medication, disease progression, or both. Therefore it is important that we all (YOU) remain calm and not jump to conclusions on what this means for my future: short and long-term.

I’ve lost and continue to lose varying degrees of muscle coordination and strength on the left side of my body. So far it has affected my left leg, arm, hand, foot, fingers, and toes.
I lost functionality gradually over the past two months. And though it will be more melodramatic than I wish, I feel the need to document many current limitations:

Legs/Standing: I can no longer climb my interior stairs. (I’ve tried every possible way: one step at a time, both hands on the handrail, seated…) Standing is something to be done very deliberately and very carefully.

Arms: Dressing and undressing was already getting more frustrating, but I try to write off things to changes in daily routines. Then two weeks ago we went to a great concert. Seth and I thought I would be okay being near the handicapped seating; needing to constantly stand so other patrons could pass stressed my body too much, and before long, I was just slinging myself to and from the railing.

Before that, we were only one song in when I realized I couldn’t clap. Unbelievable. It was a real “aha!” moment, in a very bad way. I don’t go around looking for problems. It’s only after they’ve spit in my face day after day, week after week, that I finally realize that a pattern exists.

Hands/Fingers: These are, by far, the worst. Most days I cannot write. I cannot text. I cannot sign my name. I struggle to perform basic functions on my iPad and iPhone. I cannot stack food on my fork to eat my salad. I’m a bit more successful with a spoon/chili when I don’t drop the food before finding my mouth. It’s not simply lack of coordination, either. When I get close to touching a specific point, picking up a small object, or trying to grasp an item, my left-hand and digits shake uncontrollably.

What do I need now?
1. A chairlift so I can get to my shower!! Insurance won’t pay for one so I’m going to open the phone book and start shopping. I need to get one put in ASAP; used ones seem to start around $2,000, so I’ll be in Love Fountain to both bathe and collect funds during upcoming, warmer days. That’s multipurpose!

2. To quit bitching and keep typing like a newbie. A better voice-processor for iPhone 5 doesn’t seem to exist, so I’m trying to just type faster with my right (and only one) thumb. If there was a better (even paid option) for iPhone5 voice processing, I would gladly try it. Please let me know if you have a suggestion by replying to this post!

Either way, with this new disability and painful inter-cranial pressure changes (more on that in another two weeks?), life seems to have become only one struggle/complaint after another. Many things make me very sad or embarrassed. I struggle to sleep more than an hour or two at a time during the day or night, drugs or not. I don’t want to be seen as the person who is sad, tired, and unhappy. I’m working with my doctors to find the right meds so I can feel happy and enjoy the time I’m trying so hard to preserve!

I do just want to thank again everyone who has helped with my fundraiser and Frog List since the beginning. My happiest times are spent with Seth, my mom, and my animals. It’s just wonderful since we moved my mom and the animals to be close to me! That really was and is the most important thing for me, to have my loved ones as close as possible.

My Old Man

Each February I blog when we celebrate the birthday of my first pony, Shadow. ( This post tells you more about our special bond.) This year Shadow is turning 38 years old – or so we thought…

During the move, my mom found the registration document from when I first adopted him. At that time, the veterinarian’s guesstimate as to his age would have been much more accurate. And using that information, well, that means that Shadow may have celebrated his 42nd birthday today!

Happy Birthday, my sweet boy. I’ll bring you something special on Sunday!

Highs & Lows

Success!

The move is complete. My mom and our animals have safely relocated to eastern Maryland. If I pick up the phone and say I need her, she can be by my side in one hour and fifteen minutes flat. That gives me the piece of mind I’ve been missing since I was diagnosed more than two years ago.

The weather completely botched the move schedule and condensed an 8 day plan into 3. It wreaked havoc with our tasks and nerves; unfortunately this means a future WV trip will be needed to complete some little projects. But still – the move complete, and it’s coming off The Froglist!

We Now Return You to Your Original Programming

I still have cancer. No, that’s not news; but I’ve been distracted by planning and executing a very complex move. That said, I owe my friends, readers, and this chronicle itself many updates (or lowlights, as they may be.)

The Scans

After three months of Camptosar, I had scans in early January to see if it was working. The PET scan was unofficially stable: there is nothing significant enough that we have to deal with it. I think it’s a nice way to say “yeah, cancer may be growing/spreading in your lungs, but there’s nothing we need to tend to right now.” And it’s absolutely not measurable. (More on that later.)

In contrast, my brain MRI was a virtual shit-show. (My technical terminology, of course.) I have new spots. All are small, less than 1 cm, but the people who read the scans and write the reports didn’t even bother to count them. Dr. Roush told me about one or two old, zapped ones which may have shrunk; he seemed like he was desperately reaching for something positive to say.

Nothing is CyberKnife-able (boo) or surgical (yay), and for the first time I understood that anything we do from here on out is a chemical solution: pill or infusion, trial or FDA approved. Those are the tools that remain.

Trial Tribulations

Armed with crummy news, Seth and I prepared for the drive to Massachusetts General Hospital in Boston. We thought we would meet once again with Dr. Alice Shaw and enroll in the next available drug trial for ALK+ lung cancer. It’s good we called ahead…

There is a drug in trial that is showing promise for ALK+ lung cancer that has metastasized to the brain. Unfortunately, I do not meet the requirements for the trial. Specifically, the patient must show measurable tumor growth in the lungs. Not only are my lungs generally stable, I’ve never had the kind of lung tumors that could be measured in centimeters, for example. The drug company could change the rules and remove or relax this requirement in the future. But for now, there is no trial available to me.

For Now

At the end of January I began a chemo drug called Temodar. It’s used to treat primary brain tumors, which I don’t have, but both Dr. Roush and Dr. Shaw thought it was a logical next step. The key is that it is known to cross the blood-brain-barrier. Common side effects are messed-up blood counts and fatigue. So far my counts are acceptable, but I have experienced some other popular side effects like headache, nausea, and fatigue.

I have a growing list of other issues and concerns which are common with brain lesions and swelling, but I’m not ready to discuss those in detail. My oncologist and neurologist are adjusting the doses on a couple medications to try to mitigate some of my overall unhappiness.

It’s been difficult to stay in touch with my closest friends… to even know what to say. Many days I feel like I’m falling apart; some days I actually am! And I don’t have the energy or desire to lie when they innocently ask, “How are you doing?”

There have been many DIY projects associated with the purchase and move, and realizing all the things I can no longer do has made me feel very inadequate. Most of these are things Seth and I enjoyed doing together too. Now I just watch as he replaces electrical outlets or installs a new faucet (my fine motor skills aren’t very dependable lately). It’s also frustrating to require help to accomplish anything. (In other words, I’m obnoxiously needy!) I know Seth loves me and would do anything to help and include me, but I miss being his equal partner-in-crime during our DIY and other miscellaneous capers!

The H Word

On Monday my oncologist brought up the topic of “hospice” for the first time. Once a patient decides to stop curative treatment, they transition to hospice. As I understand it, insurance officially stops paying for anything meant to cure the person and instead focuses on what’s needed to provide comfort and symptom relief. (It’s not that we ever thought I was curable, but receiving CyberKnife, WBR, and chemo are considered such.)

I’m glad he brought it up. There had to be a first time, and now the door is open to continue the discussion. I’ve been able to deal with a lot by pretending my situation isn’t as serious as it is. And I know beginning hospice doesn’t mean I will die by a certain date. I’ve read a few stories where people flourished and even lived for a few “extra” years once they make the transition to hospice. It makes sense that some people thrive once they are out from under the thumb of constant treatment.

I feel that I should do some homework and interview a few in-home hospice providers. I’ve made a couple calls and left messages in the past, but I chicken out and never answer when they call back. My oncologist casually recommended a close, small place that has 10 “very nice” in-patient hospice rooms. I understand the benefit of having a nurse available 24/7, but I think the comforts of home will probably trump all!

Hopefully this conversation is premature. Hopefully new tumors stop appearing at such an alarming rate. Hopefully I stop becoming more and more symptomatic! I wish I knew my timetable, but there is no way to even guess. The immediate goal is to reduce the negative impact of chemo and other meds so I can spend more quality time with my loved ones. And hopefully Temodar will keep new tumors from sprouting while I’m busy enjoying life.

Fattening the Frog

Jessica’s secure fundraising site is accessible here.

While coming to terms with my diagnosis, I realized there are experiences, moments – even things – that I want for myself. And these are consistent, no matter if my timeline is to be measured in one year or ten.

I felt a lot of pressure to track these things via a “bucket list.” But my imagination kept teasing me with this very literal vision of a stainless steel bucket far too cold and anonymous to contain hopes, dreams, and otherwise fun things.

I needed something that was more… Jessica. It had to have an animal-association, be a bit humorous, and have a touch of whimsy amidst such a serious topic. And thus, The Frog List was born! It contains all of the things I want to do before I CROAK!

It was a soft launch: I simply added a page to my existing blog. But soon two very cool supporters assembled a fundraiser page which would draw attention to my list and the resources needed to make it come true.

The fundraising is managed and secured via YouCaring.com. It is a fee-free service which connects people like me and the folks who have the means to help, no matter how small or large the donation.

Knowing my needs and wanting to be as practical as possible, we took a guess at time and donation goals. I extend the time deadline from month-to-month, and I’m not quite halfway to my $10,000 goal. I feel it is a lofty, but not unobtainable goal, given the experiences of other YouCaring users in my situation.

Some donations are monetary. Others are donations of actual experiences or items on the list. Either way, it’s important to me that I keep the site updated so the generous donors (and potential ones too!) know exactly how The Frog List has made my life easier and more enjoyable.

To date, the following items and experiences have been donated: a special lightweight wheelchair, NASCAR race tickets (and Hot Passes), Cirque du Soleil tickets (and meet and greet), and George Strait concert tickets (in progress!).

I would like to give an idea of where the cash donations have been spent too. Some of the larger expenses have been: flights/hotel/car rental for the NASCAR race; gas for trips to see my mom in WV; and making sure everyone who wants money at least gets a minimum payment. My Rite Aid prescription bill alone rivals most car payments!

While visiting friends and family for Thanksgiving, a friend gave me some really good advice. “Don’t be shy to extend the date or the fundraising goal as things change.” Her youngest daughter was born with some huge medical hurdles, but luckily she’s a thriving happy little girl today. 

My friend’s words of wisdom revisit me often these days. We are nearing completion of the most critical item on my Frog List: Move my mom closer to me. We found the new farm, and the move is about two weeks away! We must sell the existing property ASAP, but having my mom close to me will outweigh the stress of an extra mortgage.

I’m so excited it’s finally happening. I have lived through two years and two months of bad news, treatments, and hospitalization with her too far away and me too unwell to make the frequent trips I once did.

Through all the planning, I just realized that I’m going to need different accommodations at the new farm than I have had in WV (the existing farm).

Most waking hours, in order to be physically comfortable, I need to lie down or at least recline. (In fact, I often measure how well I’m doing by how many hours I was able to spend out of bed on a given day.) At home, I have a daybed in my living room. I replaced my loveseat with it about six months after my original diagnosis.
Having a bed downstairs also allows me to avoid my arch enemy, stairs, on most occasions.

At the farm in WV, I have been spending more and more of each visit isolated in the guest bedroom because there is no place for me to lie/recline comfortably in the living room.

Therefore, I want to buy a sectional sofa (maybe with a recliner) for the new farm. I want to have a place I can be comfortable and interact with everyone during waking hours. 

I definitely think this warrants an addition to the Frog List. I wouldn’t spend money on anything fancy; it seems that a basic sectional starts around $1000. (It just has to be very comfy!)

This started me thinking: How do I decide what I should add to the Frog List? I came up with two criterion: 1) Will it make my daily life easier or more comfortable? 2) Am I the primary benefactor? I am happiest when the ones I love are, too; but when asking for such generosity it’s important I remain focused on the goal at hand. (By the way, asking for help is very hard.)

Right now that’s the only ad hoc (and somewhat immediate) item I want to add. Yes, I can use all the help I can get with mountains of medical and living expenses; and I’ll be reaching out to a few key folks when it’s time to say “I do.”

But I hope to order my “comfy place” before the end of February. Thank you for everything you’ve done to date, and in the future, to help me fatten the frog!

Jessica’s secure fundraising site is accessible here: http://www.youcaring.com/medical-fundraiser/jessica-s-frog-list/84760

The Mane Event

Seth and I decided to go very light on gift-giving last year. And after an unexpected August engagement, I had received the only physical “gift” I might hope for from Seth.

Like many of my friends, I appreciate the intrinsic satisfaction gift-giving brings. Receiving gifts is nice too; it’s a chance to have some fun with friends, see how well they know you, etc.

In the past I’ve known people who will spend the entire year judging or otherwise measuring their relationships based on how much ‘thought’ (read: money) was spent on their gift. There are different kinds of relationships and people in the world – and I suspect these are some of the shallowest. But that’s okay. They make me giggle, and I have the time to judge. (Hahaha, I’m FAR from flawless!)

All this rambling is to tell you about one gift I received this year. As Seth would say, “It broke me.”

I have a huge heart for animals. But beyond that, I think I’m pretty average, maybe a little tougher than usual. Hallmark cards and movies about separated lovers don’t make me cry. I’ve never been moved to sponsor a fly-covered malnourished child shown on TV commercials. (I can’t watch the animal abuse commercials, though!)

I’m sensitive, but for most of my life, I’ve successfully kept it secret. I’ve decided to open up a lot since my diagnosis, but the open demonstration – exposure – of feelings is still a struggle.

For all of those reasons, even my mom was surprised when she handed me my gift. I opened the tiny box and had a complete break down.

She found an artisan who weaves jewelry from horse tail hair. Back in August, my mom clipped a (surprisingly thick!) chunk of Shadow’s tail hair and mailed it in. The resulting gift was a beautiful bracelet delicately woven from Shadow’s tail hair and sized just for me.

I bawled tears of joy. Then I cried some more. It is so special and thoughtful. I have yet to wear it; although the weave is very sturdy, and it seems perfect. There are no short hairs poking out like when I would braid my own hair.

I’m not sure I’ve ever received such a unique and thoughtful gift. Just like the pony it came from, I will cherish it forever!

Andrea Sloan

This week the battle for Compassionate Use in cancer trials laid to rest one of its bravest: Andrea “Andi” Sloan.

Andrea, a 37-year-old attorney and horsewoman, was diagnosed with ovarian cancer seven years ago. For much of that time she participated in the more traditional therapies: surgeries, chemotherapies, radiation, and even a stem cell transplant. Then in 2013, she created global awareness when she formed Andi’s Army, a group on a mission to allow she and others access to trial cancer drugs, not because the data could benefit a manufacturer’s launch of a drug, but instead because it could help improve or extend a patient’s life. This is commonly known as “Compassionate Use.” Andi’s Army released this very eloquent statement. Andi may be gone, but her mission will live on.

Statement from Andi’s Army on the passing of Andrea Sloan

“Dear Lord, let me live each day so that when I am gone it can be said, ‘She was a woman of determined faith, happily resigned to fate, who drank Joy for breakfast as if it were coffee.’”

– Andrea Sloan

On January 1, 2014, our dear friend Andrea Sloan passed away due to complications from pneumonia. In the midst of our grief, we remember her with gratitude. She taught us about courage, hope and the resilience of the human spirit during her valiant seven-year battle with ovarian cancer. Andrea entrusted her legacy of compassion for all creatures to us. She was determined to bring meaningful reform to our nation’s regulatory system through changes to compassionate use policies for terminally-ill patients. Andi’s Army is committed to seeing her dream realized, and we will in due time. Andrea’s joy for life was contagious. Please join us in honoring her memory by sharing and appreciating joy in your daily lives. As the American rock star Tom Petty said, “I won’t say goodbye my friend for you and I will meet again.”

In lieu of flowers, donations can be made to the Texas Advocacy Project or to the “Moon Shots Program” at MD Anderson Cancer Center in memory of Andrea Sloan. Memorial service plans for Andrea are pending and will be announced when available.

News coverage about Andrea.

Pack Your Pony!

On the Friday after Christmas, Seth and I closed on a very special property where my mom and our small family of animals will live much closer to us. I’m over the moon!

Having my mom and lifelong best friend so far away has been one of the most difficult things about being sick. We have an integral bond not completely definable in terms of friendship, love, and endearment. (It will make good book fodder should anyone ever talk me into writing my memoirs.) Needless to say, it’s a key ingredient in the special sauce that is my intrinsic happiness.

And while I am too scientifically stubborn to believe my medical progress is directly correlated with stress or support of one relationship, I know many of my friends and even casual acquaintances reading this who do. It doesn’t seem like a productive ‘argument’ to have, so I’ll agree “stranger things have happened” and leave it at that. What I do know is that I will be a much happier bunny once my mom and I are more available to each other than we presently are.

Knowing this better than anyone, Seth has done his part to move heaven and earth – again.

I grew up on a small, rural farm which my mom literally built with her own hands, and sadly we lost it due to a combination of the economic downturn and unrelated domestic events. Seth and I had been work friends and dating for only a short period of time; I was bowled over when he offered to invest in a new farm, essentially providing enough capital that would allow us to keep our family (animals) intact and not homeless.

We had to find a place on a very small budget, and time was of the essence. We found a tract of land with a half-finished house in West Virginia. The distance would be a challenge (going from a 2 hour to 7+ hour drive), but what we could afford wouldn’t be anywhere near Philadelphia. I promised my mom I would visit once a month, and that’s exactly what I did for two+ years, while I was healthy and airplane flights were competitive.

Unfortunately things went to hell in 2011. My mystery illness turned cancer diagnosis made independent travel nearly impossible, and the 7+ hour drives became more frequent.

Previously Seth and I would drive out for a week-long visit just two or three times a year. Now he is schlepping me there every six weeks or so. (And not once has he complained.) Seemingly overnight the farm’s distance went from unhappy to unbearable. I was in and out of the hospital, while my mom had no one we could trust to tend to the animals, not to mention help her with a very long, stressful drive, so she could visit me.

We listed the farm as ‘for sale by owner.’ A year passed with little activity. We broke down and decided to list with a Realtor in early 2013. To date, we’ve had some interest (showings) but no offers. I have listed the property information at the end of this post and appreciate you sharing the listing with anyone who will read and share.

Seth and I knew we had to sell the existing farm in West Virginia before buying a new one. To carry an extra mortgage for an undetermined length of time would be foolish, stressful, and insane! And that doesn’t even explain that I would need to use every penny I’ve ever amassed for a new downpayment. What kind of crazy person would do such a thing?!

Me, apparently! There are few events that will make two balanced, logical and otherwise risk-adverse people take a chance like that. And frankly, I hope you never figure out where your limits are. Mine was a grand mal seizure and the discovery and growth of a dozen+ small brain tumors. Seth having to check for life signs after my seizure may have been his breaking point.

Very quickly our priorities clarified, and we made the conscious decision to move my mom immediately, no matter what that meant.

Fast forward five months, and here were are! The house needs some basic pieces (appliances, a floor refinish), and the barn and fence need patching before we can safely move everyone to their new home. Paint and other cosmetics will be projects along the way and aren’t considered critical to the move (or in the budget!)

Even though she will have to manage everything at a distance, my mom hopes to move by the end of January. I think an end-of-February goal is more feasible. She has been tasked as the general contractor on all things ‘new farm,’ and my brother (a marketing pro) will continue to focus his attention on attracting a buyer for the farm in West Virginia. Please help us spread the word about this beautiful property for sale!

* Via our custom, mobile-friendly site: http://propertyforsalewestvirginia.com/

* Via realtor.com: http://www.realtor.com/realestateandhomes-detail/2468-Dudley-Hill-Rd_Middlebourne_WV_26149__M37821-07279

* Contact our Realtor, Harry Cain, at (304) 455-2550 or harry_cain21 (at) hotmail (dot) com

I’ll do my best to keep you updated as the big move nears! Please know that moving our furry and feathery family is a delicate process! My fundraiser stays open to help me pay all expenses on my Frog List, including the cost of moving one very handsome, roan pony! 😃

Here’s to the Happiest New Year yet!

67 Miles

A few weeks ago I made a conscious decision to keep something from my blog readers. I haven’t felt guilty about it; I don’t feel like I “owe” my readers anything but my gratitude, which you certainly have.

Still, secrets and half-truths are a real pain in the ass. My favorite Judge Judy saying is, “If you tell the truth, you don’t have to have a good memory.” And when I began keeping this one, I thought my silence would be needed only for ten days. That was November 3rd.

It’s now five weeks later, and I find that keeping one secret has really stalled me from sharing other things, too. So without further ado…

Seth and I found a small farm where my mom and our animals can live. It seems to meet most of our needs, and it’s less than an hour and a half from our home. Can you imagine?!

We made an offer, and it’s been accepted on contingencies. The time issue is that it is a bank-owned foreclosure; so paperwork that should take days is taking weeks.

Yes, weeks! For five weeks, we have been holding our breath (insert lung cancer jab here) and hoping that the building and septic inspections don’t turn up anything devastating that we can’t afford to fix. (Like most foreclosures, the bank plans to sell “as-is”.) Perhaps this would be as good a time as any to begin building my contractor contact list for the Delaware/Maryland Bay Area!

I’m not a superstitious person, so I can’t say that I was afraid of “jinxing” the deal by blogging about it. But I was trying not to get my hopes up until we got through inspections. After all, if we have to install a new $20,000 septic system, the deal is off. But now my hopes are up, and both my mom and I will be devastated if this falls through. (sigh)

We are waiting for the bank (owner) to approve a quote and make repairs needed after they un-winterized the house. Then one Saturday or Sunday very soon we will head down to Maryland to meet the inspectors. The bank originally wanted to close before the end of the year, but with their self-imposed delays, I doubt it will happen until early next year.

Now that I’ve spilled my guts and shared all my deep, dark fears that we’ve found the perfect place that could have hidden, expensive problems, allow me to say… I’M SO FREAKING EXCITED!

Less than an hour and a half south there sits an empty farmhouse and some assorted outbuildings on four acres of land.

It’s just about perfectly square and was fenced for animals which hopefully now have happy homes elsewhere. The two acres around the house is mowed, but the rest of the property, mostly in shrubby pasture, hasn’t seen a deck mower in a few seasons. Looking at the aerial map I can almost imagine the horses grazing out in the back pasture.

The house was built 95 years ago and is small compared to some others of its era. Inside it needs a lot of cosmetic help, but it’s always what you can’t see that concerns me.

You can tell it was loved once; even recently you can see where new pavers were laid for a back patio that never saw its first summer barbecue. There is granite, probably rescued from remnants, atop the old, painted beadboard cabinets. And someone started to drywall a room upstairs, presumably for a master bathroom. This place feels right.

Of course, if this all works out (it just has to!), the pressure is really on to sell the existing farm in West Virginia. Yes, we know that will be stressful. But having my mom close to me couldn’t be more important!

Year Two

I awoke November 14 and knew I had completed a milestone most never would: I had survived with rare, terminal (stage 4) lung cancer for two years. If you factor in my June diagnosis of a dozen brain metastases, the typical survival rates shrink exponentially.

I enjoyed celebrating my cancerversary. I suppose I could have seen it as the day my life crumbled. And in some ways, that would be accurate. I lost a lot when I gained my diagnosis.

But the fact I’m still alive is like giving cancer the middle finger, even though I’m not normally the vicious “let’s battle cancer!” torch carrier. My fight is quieter and feels much more personal, even if the accounting of my progress and feelings is quite public.

So this Thanksgiving I’m thankful for my loved ones – human, furry, and feathered – and for the chance to spend another year learning to love them even more. 

Patrick Leer

Earlier this week, lung cancer extinguished a bright star. Patrick Leer is the first cancer friend I’ve lost. It’s heartbreaking in so many ways; some were anticipated, others were not.

Patrick was diagnosed in January 2012, just a few months after me. He was stage 1 and had surgery in March 2012. After 14 months cancer-free, his doctors discovered new lung tumors and brain mets in May 2013. He had WBR for his brain and was suffering through chemotherapy to treat his lungs when he started going downhill. I know he was hospitalized with an infection but had come home shortly before he died.

I knew Patrick through his blog, our emails, and short Twitter direct messages. He was a kind man whose primary passion was to love and care for his wife, crippled by MS only four years into the 28 they would spend together. He loved her so much and spoke of the time they spent together only as a privilege and never a burden.

Patrick blogged at http://lung-cancer-survivor.blogspot.com. I’ve found myself going back, seeing if I could piece together his last few weeks, but I can’t. Maybe his daughter will finish his story someday.

Lung cancer only exists to kill, and after two years in this unfortunate club, it has taken one of my friends. The rest of us can only hold hands a little tighter and hug our loved ones a little longer. And when we tell you “I love you,” please know that we mean it so much it hurts.