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.

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!

A Matched Pair

I think, in most partnerships, there is one person who is smarter than the other.

I don’t mean the person with the most redeeming qualities; hopefully most relationships are relatively balanced in that respect. But if you challenged each with a combination of traditional knowledge and ‘street smart’ tasks, who would fare better?

Sometimes it’s easy to determine which of the pair holds the bigger bag of IQ points. Others aren’t so transparent; you only know which way the scale tips after befriending the couple.

But what I’ve realized is that in my relationship with Seth, I don’t know who is smarter. And neither does he.

Of course, I think Seth is many other things “more” than I am. He’s nicer than I. He’s more thoughtful than I. He’s funnier than I. These qualities stand out because I admire, am humbled by, and rely upon them.

Sometimes we take on certain roles, though not always in the same vein. Who would have thought that I would negotiate the price when we bought a new vehicle? And who would guess that he is better at giving the bunnies medicine when needed? But it all evens out, every time.

I am a complete, balanced, and better person with Seth. He challenges me when I’m feeling sharp then comforts me when I’m having a foggy day. He will affectionately elbow me to play around or hold me when I feel so sick.

For better or worse – and those days seem endless right now – I can be myself. He will love and respect me just for that.

Some people say that Seth seems like the perfect man. I only know he is perfect for me.

How Engaging!

In the morning of Sunday, August 25th, Seth asked me to marry him.

I said “yes.” 😊

WBR: Week One

I lied on the hard table this morning, looked up at my reflection in the radiation delivery device (not the technical name), and thought, “I can’t believe I come here willingly.”

My daily appointments are at 8:20am Monday through Friday. After not working for over a year, it’s a little odd to go somewhere on a set, daily schedule.

On the positive side, it’s nice to have a little extra time in the morning with Seth. I suppose that’s one measure of how much you adore someone. You can view driving to and from radiation treatment as ‘quality time’!

Another positive thing? The treatment is quick. Four days out of the week, treatment takes only ten minutes. The other day there is a nurse and doctor visit afterwards.

And that’s where the pros end. I take a steroid and Zofran prior to treatment each day to help prevent nausea and vomiting. And while my body has threatened a few times, I’ve avoided losing any lunch over the first three days.

The place where I receive treatment is a mere 15 minute drive from my house. So if everyone is on schedule, we’re home by 9am. At that point, I’m emotionally spent and tired from barely (or not) sleeping the night before.

Seth goes to work, and I take a stab at my first nap of the day. In total, I’ll probably end up taking two 2-hour naps.

As the morning wears on, I sidestep some small bouts of nausea and hide my eyes in bed to combat short stints of photosensitivity. (I haven’t found that listed anywhere as a side effect. Who knows…)

The afternoon moves along with nap #2 and a small snack of fruit if I’m in the mood. It’s around this time that I really start feeling the effects of the day’s treatment.

By the time Seth gets home, I feel like a mess. I’m exhausted and emotionally spent. The correct word is “fatigued,” but it barely seems to cover the feeling. I know it’s only moderate right now. The worst is yet to come, according to the literature and experiences of my cancer pals. But who knows – maybe I’ll be the exception.

As usual, I expend the energy I have while Seth is home. And so far I’ve been able to eat dinner, albeit with some reservations. These first three days I’ve been out of bed for part of the evening, which I consider a real success and a marker between “moderate” and “severe” fatigue.

Eventually Seth says ‘goodnight,’ and the long night begins. It often feels like a countdown until the next treatment. I try to sleep but end up tossing and turning for hours. That makes me feel crappier; I look at the clock and try to find a way to get comfortable once again. The countdown continues and silently, I cry.

Tonight I (dumbly) did the math. 3 treatments down, 12 to go. I’m only 20% complete. It’s going to be a long August.

A Wheel Mystery

No one wants to use a wheelchair. It’s a tool to help a person do something or go somewhere they otherwise couldn’t.

And it’s the view of it as a tool that has allowed me to change my perspective and expectation both of the machine itself and my need for one.

In the spring of 2012, Seth and I recognized that I needed a set of wheels so there would be no retail store or mall that was off-limits. Big box stores often have electric or manual wheelchairs to borrow; otherwise, it’s every man for himself.

We purchased an affordable, lightweight folding transport chair which fits in its own duffel bag. Compared to no chair, it’s been great. We’ve used it quite successfully in the mall and to trek through the airport instead of waiting on slowly dispatched, private airport employees.

But with tiny wheels and a mostly fabric frame, the transport chair is to a wheelchair what a travel umbrella is to a golf umbrella. You may recall this post from March where Seth and I had to borrow a full-sized wheelchair to make it through the streets of Boston in one piece. The transport chair is great for indoor corridors, but that’s about it. It bulks at parking lots, sidewalk ramps, and even the errant power cord.

With that knowledge, the search for a new wheelchair began. We needed something lightweight that Seth can easily load in and out of the cars. (I don’t want “unloading the chair” to ever deter us from doing something fun.) But it still needs large wheels that will handle whatever (reasonable) terrain we throw at it. I would like to be able to stroll the Boardwalk this summer, for example, and that’s not happening unless I have a “real” wheelchair.

Seth searched high and low and finally found the perfect chair: the Ergo Flight Ultralight Weight Wheelchair by Karman Healthcare. Here’s their spiel:

In today’s market, people are tired of the heavy wheelchairs that were meant to promote mobility to disabled or mobility impaired individuals. Where mobility and ease of transportation were meant to be the primary importance of manufacturing a wheelchair, somehow manufactures got lost on what was most important to the people using the chairs. Karman proudly announces the product that will redefine ultralight weight at the most competitive price. We did this by mixing a competitive metal (Aircraft Grade T6 Alu) with the most efficient geometry possible in designing a wheelchair. What we get is a functional wheelchair that slashes price on any Titanium wheelchair driving economy directly to the homes of individuals that wish to have the ultimate mobility wheelchair possible.

And as durable medical equipment goes, it’s not THAT expensive. The MSRP is $1,437, but it can be ordered from an online dealer for $749.

Now, $749 is a lot of money for any patient to pay for a wheelchair. And that’s why I’m thankful to have excellent insurance. Well, almost.

You see, my Aetna point-of-service insurance has been top-notch 95% of the time. I haven’t struggled to get a single procedure or hospital stay covered. (This is also a great testament to my oncologist’s office.)

Of course I try to be a savvy patient and am very careful to keep everything in network. Sure, I must pay several thousand dollars each year until I hit the maximum out-of-pocket contribution. That’s just the way health insurance works.

But I never struggled with Aetna until I tried to buy a goddamn wheelchair.

You see, insurance companies think you should get the $50 wheelchair from Walgreens. Or the one that the hospital might provide you after you fall and break your hip. Insurance companies think wheelchairs are steel traps used to push someone from the bed to the commode.

And quite frankly, a 32-year-old woman shouldn’t need a wheelchair. She shouldn’t need something that’s easy to take in and out of a tiny car so she can go to the park for the day.

Certainly there are young adults who have wheelchairs, but aren’t most capable of pushing themselves along? Those are wonderful, admirable, strong people who wear their wheelchairs like badges of honor. They play wheelchair tennis and wheelchair basketball, and do more in a wheelchair than I ever did with cancer-free lungs! Those are the young adults who earn nice, special wheelchairs.

But I’m not that. And luckily I don’t need to be pushed from the bed to the bathroom, either.

I need a wheelchair because I can’t walk very far. And because I need good back support if I’m to be out of bed all day.

I need a better wheelchair so I don’t feel embarrassed when mine nearly collapses while going up a little incline… Or so I don’t have to stand up while Seth pushes it over a the tiniest bump in the road.

My hope is that Seth and I will both take pride in my new vehicle and its ability to take me anywhere I want to go (Boardwalk included!).

So what’s the hold up?
We can’t figure out how to get Aetna to pay for even part of a wheelchair. Yes, we have a prescription from my doctor and the correct medical codes for an ultralight wheelchair with great back support. But there are no Aetna-participating medical providers who stock this manufacturer. And if I can’t use an in-network provider, I will have to pay everything out-of-pocket.

Seth and I are trying, with all our might, to put a local Aetna provider in touch with the manufacturer who lists said company in their “dealer locator.” We visited in person to provide the prescription and copies of my insurance and ID. And since then I’ve phoned every 3 days for two weeks. Unfortunately, I’m only told that the owner needs to deal with it, and he seems to be on vacation or out sick every time I call.

I realize it will take someone special at this local company who really wants to go out of their way to help me. They would order special order the chair (which they should be able to do since Karman Healthcare lists them as a dealer) and then bill Aetna on my behalf. Unfortunately no one there will yet acknowledge that they are a dealer. (sigh) Finally, Aetna would agree to pay x% of the wheelchair, and I would pay the balance to the local company.

At this point, I’m not even concerned about what that x% might be. I would just like something to be covered. Is it “the principle” of the matter? Nope – it’s the cash! I’ve threatened (myself?) many times to just break down and buy the damn thing online. But no, stay strong, just call back in another 3 days… Maybe I’ll only wait 2…

Laid Back ‘n Low Key

Seth and I had a very nice, low-key weekend.

On Saturday we slept late, watched two NASCAR races, took a nap, and kept cool in the air conditioning. For dinner, we hit a hibachi with a BOGO coupon I found while going through the mail earlier in the day. Good food at a good price – can’t beat it.

We got an earlier start on Sunday (much to Seth’s dismay). I wore an aquamarine tank top and light pink shorts and felt decidedly cute even on a hot, sweaty day. We drove to the not-so-nearby Ruby’s Diner where I thoroughly enjoyed the cinnamon roll French toast combo.

Once our bellies were full, we headed off to The Home Depot. It’s one of our favorite date spots, and we probably spent an hour or more just browsing all the aisles, end caps, and sale areas. Monetary damage: less than $100.

Afterwards we picked up some bunny litter and looked at shoes at DSW and Famous Footwear. The entire time we darted to and fro topless in my MINI Cooper Convertible. The humidity made it borderline uncomfortable, but the fun factor trumped all.

Once home, we resumed light domestic duties of laundry, yard work, and DVR clean-up. Seth also (re)installed the fabulous American Standard toilet. The one donated just happened to be defective, but I’m pleased to have the same model installed once again!

The relaxing weekend was capped off with Seth changing the sheets on my bed (a task I can no longer manage). Delightful!

I’m very lucky to share these typical highlights of a great Seth and Jessica “laid-back weekend.” Very relaxing and so much fun to be had between two best friends.

The Plate Project

I recently realized that, as an adult, I’ve invested a lot of time looking for the perfect set of dinnerware I’ll never buy.

Yes, I’ve shopped for new dishes many times. Plates and bowls come in so many beautiful shapes, colors, materials, and designs. But I’ve only purchased them once. Thinking back, I always had something that did the job. There was never a practical reason to spend money on new dishes.

“Dragonfly” by Retroneu

When I moved into my first apartment, I bought a Retroneu 16-piece place setting for four; it was standard quality: four each of dinner plates, salad plates, bowls, and mugs. They had a pretty watercolor design; four main colors rotated through the set so they all coordinated but didn’t match. They had solid brushed color on the outside of the bowls, a large dragonfly on each dinner plate, and two flowers on each salad plate. I bought them on a bright, sunny day when my mom and I were shopping in Lancaster, PA. Strange how the brain can recall such details.

It’s worth noting that the dishes weren’t what I would typically select. I’ve never been a pastel, watercolor kind of gal. But they called to me, I guess. I used the dishes in my apartments and even in my first house. Over time, a plate broke and a mug was lost. Each time I thought to replace the set my practical side kept me from doing so. I was fond of them, too.

In 2003 I went through a huge life overhaul and made the shift from a house to an apartment. It was a defining moment – a fresh start in many ways. And it was the perfect occasion for new dinnerware!

There were so many styles to choose from; the search would take a couple of weeks. I needed something to use in the interim. My dragonfly set continued to dwindle during the move, and I no longer had enough pieces to get by.

Seth was transitioning to new dishes, and he offered me his old stoneware plates. I graciously accepted the beige, brown floral, (and honestly not so pretty) plates.

Now I’m sure the set was stylish when his mom purchased them in the early 1980s. They became Seth’s when he went to college in 1988. And now they would tide me over while I selected the perfect plates.

It’s funny, though, that when you don’t have an urgent need, things fall by the wayside. I became frustrated with my plate search: everything I liked either didn’t fit my budget or had tiny cereal/soup bowls. I wasn’t going to compromise. I’d rather eat on free ugly plates than pay for something I almost liked. I abandoned Project Plate as more important matters arose.

Seth rounded out his new set when I adopted the old. He had selected Corelle (vitrelle) dinnerware: all white with a slight texture around the rim. I didn’t care for the material. They seemed like a cheap excuse for plates: lightweight and clinky sounding when stacked. But Seth liked them, and that’s all that mattered.

Years passed. The tan and brown 80s plates stayed with me for 3 years of apartment living. I thought of renewing Project Plate when I bought my new house in 2010. I had to purchase other home goods, though, and decided to deal with dinnerware at another time.

Then in late 2012, Seth sold his house and moved in with me. We decided to donate the old dishes to Goodwill. The white Corelle plates were now front and center.

I guess plates, like people, can grow on you. Since they’re rather new and non-offensive, there is no reason to replace them. Plus, they do have some merits. They are lightweight (great for achy days), nearly indestructible, and microwave/dishwasher friendly. It’s also easy to find one-off pieces; we have customized the set for our needs: lots of plates and big bowls.

So while I may still ogle them in stores, I am officially retiring Project Plate. Once, I saw dinnerware as an opportunity to have a fun reflection of my style in everyday life. But now I view them as a tool, a means to an end.

It takes a little magic out of my world, to be honest. It reminds me of a more innocent time before my own practicality tightened its grip. But maybe not all hope for pleasing materialism is lost. Perhaps by retiring this objective I am making room for one anew.

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