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.

Just Us

Hope Summit: Part 1

Seth and I are finally home after an active weekend at the Lungevity Hope Summit.

We left home late Friday morning and arrived in Washington, DC about 3 hours later. At the hotel, the front desk agent informed us that our room wasn’t ready for check-in. We grabbed a Georgetown tourist map from the concierge, and headed across the Key Bridge.

We parked our shiny black truck, unpacked my transport chair, and set off for some window shopping and lunch. After scoping out a few spots, we settled on a seafood joint, The Tackle Box. It was okay, but they didn’t make a repeat customer out of Seth or me.

The weather was beautiful, the sidewalks bumpy. We ogled plumbing fixtures at Waterworks, Seth tried on a funky plaid jacket at Levi’s, and we bought him a dress shirt at H&M.

After just a couple of hours we were ready for a break. We headed back to the hotel and checked in. I opened my suitcase and pulled out my nightshirt; for the next two hours we lounged in bed and watched TV.

We met Kim and her husband in the bar just before 7pm. We’ve read each other’s blogs and corresponded via email for months. Now we were finally able to meet. After a quick drink, we headed to the conference space where the welcome reception was being held.

Conference registration and goodie bag distribution was well-coordinated. Seth and I donned our name tags, took some pictures on the “red carpet,” and found seats with Kim and her husband at one of many tables.

The bar was open, and the hors d’oeuvres were tasty. I spent most of the time getting to know whomever sat at my table. With 80+ people attending this optional reception, the place was abuzz.

90 minutes later, around 9pm, I was fading fast, and it was time to bid everyone a good night. We retired to the hotel room just a few floors down.

I was back in my nightshirt in 30 seconds flat. Then I checked on Blossom via the D-Link webcam in our living room. (Gracie wasn’t in the frame.)

Seth and I relaxed, watched some TV, and played an iPhone game until we fell asleep a few hours later. A quiet ending to a busy day.

My Card

A few weeks ago I asked for your help in selecting the title on my blog cards. Craig provided the selected phrase; Shar, Rita, and Steve/Wendy were runners-up! Here’s the finished product:

Cancer v. Toilet

When you’re in treatment for a serious illness you grow accustomed to sharing very personal things with total strangers. And while I once hesitated when someone asked about my bowel movements, I now volunteer the information.

That same desensitizing is what allows me to write this blog. I’m generally a private person. For example, I was never interested in having a Facebook account. When coworkers relentlessly insisted that I join, I created an account for Blossom and let them “friend” her.

Yet, here I am. I’ve decided to share some of the most intimate details of my life with anyone who cares to listen (or read). It was a difficult choice – to make this blog public – but I felt it had to be done. By writing, I’ve decided to sacrifice some privacy with the hope that it will help someone else. Please keep that in mind as I share with you another cancer adventure!

One Friday evening, I found myself writing to a complete stranger. I’ve had a problem for a few months now, and it was time to take drastic measures. First I introduced myself, including my lovely diagnosis. These are excepts from the actual email:

While [LDK378] helps my cancer, it is making me very sick. It’s also creating some embarrassing bathroom issues.

You see, my toilet can’t handle my… movements.

[Seth] has to plunge and ‘power flush’ the toilet with hot water every single time I ‘go’. We’re a close couple, but it’s still so embarrassing for me and laborious for him.

We’ve had plumbers come out several times, and they never find any sort of clog. The plumbing was installed 10 years ago, so it’s not a pipe problem. And we have plenty of water pressure coming from the city. This is truly a toilet problem.

I concluded my letter by asking for help. I hoped that one of the companies with which she worked would be willing to sell me a really good toilet at cost. It was hard to ask for help, especially in such a situation, but we were desperate.

I received a response the next day: Saturday! And not only did my email get read, the woman wanted to help me! She vowed to speak with people “in the industry” to see what could be done.

Less than two weeks later, two gigantic boxes were delivered to my front porch. The outside of the boxes read “American Standard.”

‘No way!’ I thought. I tore open the packing slip like a kid opening a Christmas present. It was an American Standard Champion Pro toilet.

I grabbed my phone and iPad. A picture of the boxes and the text “TOILET!!” went to Seth as I quickly looked up the specs on my new toilet. On the American Standard website I read, “Using just 1.28 gallons, this trade-exclusive High Efficiency Toilet produces a faster, more powerful flush that can move a 70% larger mass than the industry norm.” SCORE!

Seth and I installed it on Saturday. We had never replaced a toilet, but the integrated tools made it fast and easy. In less than an hour I was staring at the most beautiful toilet I’ve ever seen.

Yes, beautiful. I didn’t know such a thing existed. The tank is curved, not rectangular like most. And there is trim where the bowl meets the floor.

The flush is quick, über-powerful, and quieter than my old toilet. The best part, though, is that it handles whatever I throw at it. No more plunging for Seth. No more embarrassment for me.

I hope whoever made this possible reads this post and knows how appreciative we are. Whether you have an issue or just need to replace your old toilet, I highly recommend the Champion series by American Standard. You won’t be disappointed!

Just Write

When I began writing this blog, I posted two, sometimes three times a week. Once I realized people were reading, I decided to hold myself to a schedule and write one post every 3-4 days.

At some point last year, that changed to one post every 5 days. And lately it seems more like one post every week. Am I getting lazy? Or do I simply have less to say?

Sometimes I’ll go through a spell where there just isn’t much to write about. Or I’m not in the mood to share. But the challenge this week is that I have a few irons in the fire, but nothing feels quite ready to publish. I’ve drafted two posts, and there is a third that has been sitting in my “Notes” app for weeks.

There’s a flow in blogging, much as in life; a time and a place for each topic. All I can figure is that if I’m not motivated to put the finishing touches on a piece, it must not be the right time to publish it.

I wonder if any of my blogging peers feel the same way. Do you dance with your posts as I do? Or do you stay true to chronology and post things as they come to mind? Each style has its merits.

I like to think of my blog as a collection of short stories about my adventures with life; rather than a strict, chronological journal or diary.

I really appreciate all the encouragement I’ve received with regards to my writing. On the days I’m feeling really down, I’ll re-read some of your comments. It helps me remember that, while I can no longer contribute to society in the way I want, I can still have an impact on someone.

Thanks for this opportunity. A blog is nothing without someone to read it.

Crossing the Line

April 4th was Day 1 of my 7th cycle of LDK378.

For two weeks I’ve been taking 300mg / day: an off-protocol dose approved by Novartis. Both Dr. R and Dr. Shaw hoped that by reducing the dose I could avoid or experience less nasty side effects. It seemed to help – but only for a few days.

Although I’m not a medical professional, I do have a theory as to what is going on inside my body. I believe the drug needs to accumulate to a certain level before I experience the most severe side effects. And I’ve thought of a way to help others visual my hypothesis.

The Setup
In this demonstration we will use a regular drinking glass, water, a wax crayon, and a liquid measuring cup. LDK378 will be represented by water, and my body is the glass. I choose this analogy because a drug will leave my body over time just as water will leave a glass over time. How quickly a drug leaves the body depends on its elimination half-life; water leaves a glass via evaporation. Both processes rely on complex variables which we will ignore for the purpose of this demonstration. (My sandbox, my rules!)

The Demonstration
Let’s get started. (Please follow along in your mind.) Take the empty glass and, using a wax crayon, draw a horizontal line about 1″ down from the top of the glass.

This line represents maximum toxicity: cramping episodes, abdominal pain and a general unwell feeling throughout the day. As we near the line, I become sicker. Once we are at and over the line, the maximum effects do not change.

On the first day of our demonstration we pour 1 1/4 cups of water into the glass. That represents one dose. The water is far from the line on the glass, and I feel relatively okay. During the next 24 hours, some water evaporates from the glass.

On the second day we pour another 1 1/4 cups of water into the glass. We are just below the line now, and while I’m painful, I haven’t had any bad cramping episodes. Water continues to evaporate, slowly.

On Day 3 we pour another 1 1/4 cups of water into the glass. It goes above the line; this is the first day I am very sick.

Daily dosing continues until I get to the point where I need a break. We stop pouring water.

My first and second days off I am still very sick. The third day off I am moderately sick. But by my fourth day off, I’m starting to feel a little better. The water has evaporated below the line.

A few more days pass, and the doctor decides it’s time to try a dose reduction. The glass is nearly empty as we begin again.

On Day 1 we pour the new dose, 1 cup, into the glass. We do the same on Days 2 and 3. Because we are using a smaller dose – and the water continues to evaporate at the same rate – we don’t reach the line on the glass until Day 4. That means it took an additional day before I was extremely ill. Daily dosing continues, and I’m miserable.

I take another break; the doctor lowers my dose again. This time we repeat with a dose of 3/4 cup. The pattern continues, and it takes more time until the water reaches the line.

Finally we try a very small dose, a 1/2 cup of water, each day. On this lowest dose, it takes the most days until we reach the line. Evaporation appears to have the biggest impact, even though its rate is unchanged.

The key takeaway is this: Once the line has been reached and for as long as it is exceeded, the side effects are just as bad on the lowest dose as they were on the highest.

The only way to avoid toxicity is to have a dose equal to the amount of daily evaporation so the water never reaches the line on the glass. In terms of LDK378, I would need to take a dose that would be eliminated from my body within 24 hours.

Next Steps
My recent CT scan showed a tiny bit of improvement at the 450 mg daily dose. Now I am down to 300 mg. The doctor and I agreed that I will continue taking the medication, but that I am allowed to take some days off when I deem it necessary. Most recently, I broke after 5 straight days of the most extreme side effects. After 3+ days off I felt right as rain!

My next scan is on May 13th. We will then know if the schedule I can tolerate has had any impact on my cancer. If it hasn’t, I have to make some sort of decision. Do I stay on a medicine that works and return to a high dose with no days off? Or do I pursue a new treatment? Only time (and scans) will tell…

Label Me!

This May I am attending Lungevity’s annual Hope Summit just outside of Washington, DC. A friend and I decided to make calling cards we can give to the people we meet. (Selfishly, I’m also trying to drive traffic to my blog.)

One of my goals in networking is to put myself out there as someone who is willing to speak publicly about what it’s like to be slapped with a lung cancer diagnosis at age 30. I think I have something to offer to the community at large who thinks of lung cancer as something that happens to 70-year-olds who smoke a pack a day. Chris Draft, founder of The Chris Draft Family Foundation, agrees: “Lung cancer needs a face.” I also want to help other patients, if they will have me!

With that in mind, let’s get back to the cards. I will share my name, blog URL, email address, and Twitter handle. But the card looks naked without a title. I need to describe who I am in just two or three words.

My first draft said “Lung Cancer Fighter.” This is what I use on my LinkedIn profile. It’s an easy default, but it doesn’t sit well with me.

I’ve mentioned before how I don’t like using the terms “fighter” or “battle” to describe my attempt to live with a terminal diagnosis. There may be a battle against lung cancer, but that is for research and funding to find treatments and cures. My disease is not something I can beat. It’s not fair to call a patient a fighter, indicating that their ultimate success is dependent on how hard they try to get well. To call me a fighter is to call me an eventual failure!

Regarding the term “survivor”: I think that should be reserved for people who go through a challenging experience and emerge on the other side. I may have survived some things in my life, but cancer is not one of them.

So now I’m in a pickle. If I’m not a fighter or a survivor, what am I?

Medically, I’m a patient, subject, and lab rat (one of my favorites). Of course I’m also a blogger/writer and (hopefully) a speaker. Maybe I’m a “cancer sherpa” or something else unique.

I would like your help! What should the business card say to describe me to a stranger in just a few words. Anything goes – make me laugh!

Once I’ve selected a title, I’ll post an electronic proof of the card. Thanks for your help!

Stress Test

It was 12pm on Tuesday.  Lying in bed, I felt a sense of relief wash over me.  I accomplished the one thing I had to do – take Gracie to the vet – and now I could relax.

This week I had appointments on Monday, Tuesday, Thursday, and Friday.  Pondering my schedule late Sunday night, I became very anxious.  “Can I handle being out every day?”  “What if I’m away from home and have a bad LDK episode?”  “What if I’m too sick to leave the house?”  “What if, what if, what if?”

Logically, though, I knew I should be able to handle the obligations.  And I sure as hell wasn’t going to let anyone (or anybun) down.

I hate second guessing myself.  You see, I’ve always thrived in stressful situations.  But now I can barely handle calling my bank to dispute a fee.  My heart accelerates, my hands shake, and I feel short of breath.  When I realize what’s happening, I get even more upset that my body won’t cope like it should!

It’s ridiculous.  I disgust myself, to be honest.  Sure I’ve pumped a lot of chemicals and other biological meddlers into my body.  I expect there to be physical side effects.

But the revelation that my mind has been impacted, in any way, is absolutely heartbreaking.

The Wheelchair Caper

Decreased lung capacity/efficiency make some things difficult for lung cancer patients. Some people find that they just can’t run a marathon anymore. Others find themselves attached to an oxygen concentrator 24/7. But I assume there are a lot of people who, like me, are in between those two extremes.

Last September I reached the point where my lack of mobility upset me each time I left the house. I could browse small stores; but a medium-sized store was challenging, and the mall or a stroll around the block was out of the question. I finally acquiesced to Seth’s suggestion that we buy a portable wheelchair.

It’s actually a “transport chair.” It has small 8″ wheels, weighs about 20 pounds, and folds up into a large black duffel bag. With my wheels we have been able to storm the mall and march on big box stores once more!

Naturally, it was the first thing we packed for our trip to Boston. I knew Boston’s side streets would be brick or cobblestone-laden. But it wasn’t until we wheeled up Charles Street that first night that we realized what we were in for… We resigned to walking in the street!

Returning to our hotel later that evening, Seth had a brilliant idea: we could borrow a wheelchair from the hospital! We tried to do this legitimately, of course. The next morning we asked the concierge if they knew how to borrow a wheelchair for the duration of our visit. Unfortunately they didn’t know of any place open on a Sunday. It was time for Plan B.

Seth donned his jacket and headed towards the hospital, just one or two blocks away. He planned to walk into the lobby, get a wheelchair, and wheel it through the parking garage and out to our hotel on the other side. Before he reached the lobby, however, he encountered a forest of chairs at a closer, unattended entrance. Score! But there was a problem…

My phone dinged with a text message: “EVERY one has the big IV pole attached.”

I replied, “Crap. I think they just attach with 2 thumbscrews. Maybe we can detach in the hotel room.”

Less than ten minutes later Seth came strolling into our room with a standard-issue, navy blue wheelchair. We examined the hardware used to attach the IV pole and oxygen tank holder to the back of the wheelchair. “Oh we can handle this,” I said.

Seth set out for the parking garage; my mom got him a Leatherman for Christmas 2011, and the nifty tool with pliers lives in his truck’s center console. He returned and made quick work of the first few bolts.

But then we hit a stubborn lock nut. When he tried to unscrew it, both ends spun. We needed a second set of pliers.

Remembering the close proximity of the drugstore, I exclaimed “CVS will have them!”

And he was off again. This time I could see him as he left through the hotel’s back door, crossed the parking lot, and entered CVS. He returned just a few minutes later with a shiny pair of blue-handled, slip-joint pliers.

Seth went to work on the stubborn bolts. “Uh oh,” I said, “We have another problem.”

Evidently we aren’t the first people who have borrowed a wheelchair from MGH. In addition to mounting IV poles and tank holders on all wheelchairs, they installed a sliding lock bar to prevent the chair from collapsing. Most wheelchairs have a scissor mechanism underneath which allows them to fold for storage and travel. This bar prevented the wheelchair from being collapsed (and subsequently shoved into someone’s trunk).

But we didn’t want to steal the wheelchair – just borrow it until my appointment. Of course, while borrowing we would need to fold it in case we traveled by cab or trolley.

It took only a few more moments to free the IV pole. I leaned it in the tiny closet, and Seth went to work on the sliding bar. Less than 40 minutes after wheeling it into the room, we had a fully functioning wheelchair and were ready to conquer Boston!

It worked like a charm, too. I didn’t have to worry about being launched out of the chair if we hit a big gap in the bricks (as I nearly was that first night), and it was easier for Seth to push over the uneven pavers, too.

On Tuesday morning we reassembled the chair before heading to MGH for my appointment. Once inside from the sleet we switched to one of the many dry chairs and bid a fond farewell to the wheelchair who lived a wild three days strolling half-naked through the streets of Boston!