Monday, July 21, 2014

Like No One is Watching

When I get restless my legs shake or my feet twitch.  

Even when I'm happily occupied reading an article on-line or listening to my children read, my legs shake or my feet twitch.

They shake my bed, which rattles my bedside table, which clinks the ice in my cup and makes my cell fall off the table into my lap.  

I don't care.

When my legs shake and my feet twitch I know that I am still alive, still feeling wonderful feelings from this body that has not given up.  

When my legs shake and my feet twitch, that's just my new kind of dancing.

Saturday, July 19, 2014


I was never a runner.  

I mean, I ran around playing tag and hide-and-seek like most any kid, but I wasn't a serious runner.  And as I got older and my metabolism/endocrine processes malfunctioned with increasing severity, I also got bigger and became even less and less of a runner.  It was frustrating, that I ate the same things and in the same quantities (or sometimes less) as my older brother, but he stayed thinner than a fence post and I got thicker and thicker.  I would get a stitch in my side when I ran, and my face would get beet red, and it was hard to breathe.  My breath actually burned in my chest like it does when you breathe very cold air in the winter.  So I never liked to run, never volunteered for any 5K's or marathons.  I did a 24-hour Relay a few times, but I mostly walked my laps.  The Walk for Diabetes that I used to do was perfect because it really was a walk; running was totally optional.

In the big picture, therefore, it was not a great loss to me that I can't run anymore.  I was pretty devastated about losing the walking, of course, but now that I can at least walk a little bit, I'm not too broken up over not being able to run.

Today I feel like I've closed out a week of incredible marathons, though, and I'm damn proud of them.  It began earlier this week when we got notifications that two different parties wanted to schedule showings of our house (which is for sale) at lunch time.  It happened to be a day when my husband was teaching all morning and all afternoon.  This meant that he could take a quick break to pick us up during his lunch, so that the house would be empty for the showings, but he wouldn't be able to leave mid-afternoon to bring us back home.  We had to spend the whole afternoon at his work, which to our great fortune is a fantastic place to get stuck:  the library.  

The library is terrific because there are books for the kids (duh) but also play areas, with shapes and trains and dinosaurs, and huge expanses of safe, low-pile carpet for me to practice walking.  So while Daddy was busy teaching, we played, and read, and my little minions dutifully walked alongside me and pushed my wheelchair while I walked around --completely without canes or walker or holding hands or any other balance aid-- and the chair was right there ready whenever I needed a sit down break.  An entire afternoon sitting up in my wheelchair is a huge strain on my back, but while I knew I would pay with suffering and pain later, I was still pretty happy that I'd managed to last the whole time without serious problems. 

I had another endurance test today: my niece's birthday party was held at a family fun center about forty minutes drive from our house.  It began at 3pm, and was going to last until as long as my niece wanted to stay or until closing, so hubby and I planned in advance that I would probably have to leave before the party was really over.  We would stay until around 6pm, we decided, and then go get dinner before taking our kids to spend the night with their birthday girl cousin and getting me back home to lay down.  I recall checking the time when it was just after 5pm, but the next time I looked it was 7:08pm.  I was shocked!

It's not that I wasn't uncomfortable, because I was definitely feeling the strain in my neck and shoulders and back (and let's be honest, some of the worst pain was in my poor tooshie, it's not as cushioned as it used to be), but there kept being things I wanted to watch the kids do, and I didn't feel bad enough to want to go home and miss out on any of it.  I was using every trick I knew to cope, too: leaning forward periodically to relieve pressure in my seat, turning my head and gently rolling my neck to try to keep it loose, keeping hydrated, etc.  We ended up staying until almost 8pm, and everyone had such a great time it was totally worth it.  

Of course today was all about the birthday girl, who I can NOT believe is 8 years old already!  But even as proud as I am of that special young lady, I had a little pride left to marvel at my body, sticking it out for another hours-long marathon in my chair, attending the sort of priceless family event that I so often missed out on the past two years.  Me and my stiff muscles and my titanium-enhanced spine and my sore butt did our equivalent of a full-on, spartan-iron man-marathon this week, and like any great athlete we finished strong, and proud, and both grateful and amazed at what the human body can do.

Tuesday, July 1, 2014

Attitude adjustment: Gratitude

I don't think there's ever been a doctor's office where all the patients get seen precisely at their appointment times and no one has to wait very long to be seen.  Given this widespread, pervasive tendency, I don't understand why people continue to be astonished and outraged about the time they spend waiting to see doctors.  

Take yesterday, for example.  My appointment with my oncologist was scheduled for 3pm, and I showed up about an hour early because I thought it was odd that they hadn't given me a separate lab appointment prior to my consult appointment, like they usually do.  Good thing, too, because they did actually want to do a blood draw and so I was able to have it done prior to 3pm without any trouble.  But the doctor's office was already far behind in appointments for the day, so I ended up not seeing my oncologist until close to 5pm anyway.  Even though we had our kids with us, making a long wait potentially more troublesome, I still didn't feel too upset about having to wait so much.  I'm not always that patient and forgiving, but for some reason yesterday I just couldn't seem to get my feathers ruffled.

Plenty of other people did, though.  One man even started loudly objecting and describing his frustrations with this wait and another long wait he and his wife had last week in colorful, PG-13 language that I would prefer not be spoken in front of my kids.  Apparently there was a miscommunication about his wife's appointment time, since he thought it was at 2pm and the computer system showed she wasn't scheduled until 3:40pm.  The check-in desk receptionists, who don't schedule appointments and are only responsible for checking people in and making sure the right people (lab techs and doctor's nurses) know that each patient has arrived, were helpless to resolve the waiting issue or appointment discrepancy and yet bore the brunt of this man's anger, and offered to have the doctor come out and explain the delay.  Of course, that would have only made the delay take longer, since the doctor can't get through patients if he's in the lobby apologizing.  The man declined to have them do that, but continued to grumble in the waiting area, and a couple other people grumbled their agreement with him.

I felt like an interjection of peaceful reality was in order, so despite my usual fear of public speaking, I actually spoke up to the complainers.  "I'm just glad I'm still here to be waiting," I said loud enough to be heard.  People looked at me kinda funny.  "No seriously, I'm literally glad to still be alive and able to come to these appointments."  And that pretty much shut down all the complaints about waiting.  Not that I'm saying they didn't have a right to be frustrated, but come on, the rest of the waiting room and the receptionists are not the people they should be dumping their rage on.  There's worse things than spending a couple hours at the doctor's well-cooled office with the free ice-cold water on a 100-degree day.  A little perspective goes a long way.

In any case, I did eventually get to see my oncologist and overall the visit was mostly good news.  There are still no signs of metastasis in my lungs or liver.  An enlarged lymph node near my heart that was previously noted has only increased in size by .01 (I think that's in millimeters) in each direction, length and width, so that's considered stable and also my oncologist says that node is barely big enough to count as "enlarged" in any case.  There was a new observation of increased density of soft tissue around my tumor site with evidence of some fluid build up, but it was the radiologist's opinion that this could be explained as the ongoing formation of scar tissue around the surgery/tumor site and fluid accumulation as my body's response to the discomfort of the scar tissue.  It's something we'll keep an eye on and they recommended I continue my arm/shoulder stretches and weighted exercises that I do to maintain good mobility and blood flow to that area.  Oh and there was one area of my lung that is slightly collapsed, but that's apparently common and could be related to this chest cough I've had lately, and the fact that I get sleep apnea if I lay down flat, and the best thing to do about that collapse/area of weakness is to breathe deeply and cough vigorously, and I'm definitely doing plenty of coughing every day!
My oncologist was very interested to hear about the Facebook group of Epithelioid Hemangioendothelioma patients I found, and about the researcher who is working with the group.  My doctor said that, unlike I had assumed, he actually does still have frozen tissue samples of my tumors from my back surgeries, and gave me his email address so I can put him in touch with the researcher and find out if he would benefit from receiving some of my samples for his research.  My doctor was also very interested in the fact that others in the EHE group also have this tumor in the spine like me (which appears to be the least common incidence of EHE, with most tumors being in the liver and lungs).  Perhaps even more exciting to him was that all of us who join the group complete a comprehensive survey that takes our information about surgeries, treatments, medications, etc. and that doctors are supposed to have a way to request the raw data (minus identifying names/locations) to add to their knowledge of how this tumor is being treated around the world and what is working or not working for other doctors.  So hopefully a lot of good knowledge sharing comes from that and maybe it will help find better treatment options.  

Everything was good in my blood work, no signs of whatever tumor markers they keep checking for that would indicate additional growth elsewhere in my body.  So basically everything is stable and I will see him again in six months, per usual.  He was super impressed when he watched me walk up and down his hallway and turn around and walk back with no canes or anything, too.  So other than it taking about two hours longer than it should have to see him, it was a pretty good day.  I even got complimented by someone else in the waiting room about how well-behaved my kids were despite the long wait.  I was totally proud of them, myself. 

Saturday, June 28, 2014

Drawer Doughnuts and Lukewarm Lemonade

Yesterday I had my annual CT scans to check for growth or metastasis.  We were told to show up thirty minutes before my scheduled imaging appointment, but I knew I'd have to spend an hour drinking something funky for the contrast, so we made sure to get there a full hour early.  While we sat in the waiting room, hubby and I joked about what a hard time I have guzzling down the contrast drinks they mix for you.  I've never been a guzzling kind of drinker, more of a sipper, so being sat down with a one-hour window to polish off over forty ounces of weird-tasting liquid is a real challenge for me.  I complained about the strange flavor of the kiwi-strawberry soda they gave me last year, not looking forward to drinking it again.

When they called me up to the registration window to sign my consent forms, I noticed the young woman working next to the one assisting me surreptitiously opening her desk drawer and reaching her hand inside.  A moment later, a doughnut, or possibly a muffin, zoomed up to her mouth and then just as quickly disappeared into the drawer again.  I had to stifle a chuckle.  I don't know if she was hiding it because she felt guilty eating something sweet or because she wasn't supposed to eat while working the window, but either way, she was not nearly as sneaky as she thought she was.

Soon enough it was my turn to head back for scanning preparations, and I immediately regretted complaining about the strange soda.  It kinda felt like the last laugh was on me when I reached the IV prep room and was presented with two giant styrofoam cups of tepid lemonade.  If there was anything worse than cold, strange kiwi-strawberry soda, it would be this, a lukewarm drink of anything.  I don't drink anything at room temperature.  Ice cold, or piping hot, and nothing in between.  I refrained from whining about it though, especially since the tech was able to get a nice IV going on the first try, and that was way more important than whether my drink was palatable.  

For the next thirty to forty minutes I sipped that drink and tried to read the local business journal, although the comings and goings of promising executives at promising companies in the metro area don't hold nearly the interest now that they did when I was working myself.  I'm proud to say I actually made it a little way into the second cup, which is to say, I did better than usual but totally failed to drink as much as they wanted me to drink.  Luckily that seems to always be enough to get good pictures anyway.

A short trip down the hall and I was laying down on the scanning table and trying to get "comfortable" there.  I can't actually do it, not true comfort, when laying flat like that, and then having to stretch my arms up past my head just compounds the pain in my shoulders and upper back, but it's just CT so at least it's not for very long.  MRI images take far longer in those awkward positions.  First we were doing my thoracic spine and abdomen, and after a few pictures, they announced the contrast would start flowing in my IV and I felt the familiar rush of fire in my veins.  So far so good.

Then they repositioned me a bit for the neck images, and my shoulders were relieved when I got to lower my arms and keep them straight down my sides, hands clasped together to keep my elbows tucked in nice and close.  The table slid me back into the giant doughnut scanner, and took some neck pictures.  They announced that they would now administer my second dose of contrast, and that's when things got a little crazy.  

I heard a popping sound, and immediately felt something cool on my arm.  "I think the IV is leaking, it's running down my arm!" I called out, trying not to panic.  Panic comes so readily in these situations, because even though it's the friendly CT doughnut and not the MRI coffin, there is still a sense of confinement on that scanning table, because you can't escape it without help (or at least, I can't), and are not supposed to move even.  A tech came over to the table, and looked at my arm where the IV was placed.  "Everything looks all right, we'll just get these contrast images and be all done," he said, and I didn't believe him but said, "Okay."  

They said they were starting the contrast again, and I felt it gush all over my side, soaking into my shirt and dripping down my side to the table.  Nothing I could do about it now, I just held my breath when the mechanical voice said "Don't breathe or swallow" and waited for it to be over.  Finally it was done, and the table slid me back out of the doughnut.  "I don't think I got any contrast on that last set, it went all over my shirt," I said, noting there had been so rush of heat the second time, but they assured me that some had gone in, they had great pictures, very clear, so at least they wouldn't have to be re-taken and the radiologist would have the best possible clarity to work with.  My shirt was soaked though, with sticky contrast fluid mixed with just a hint of blood.  

On one side of the scanning room is an area that can be curtained off for privacy, and I was quite pleased with my balance as I stood within that shelter and the tech helped me change out of my wet shirt into a hospital gown.  She said I could wear it home, which was nice because of course I hadn't brought an extra shirt with me.  The hospital gown was too small and in any case they only cover the front, but hey, beggars can't be choosers, or modest, I guess.  I balled up my wet shirt, walked over to my wheelchair, and we wheeled back out to the waiting room.  

"Change of plans, I need to go straight home without stopping for a nice lunch," I told hubby with a tight-lipped fake smile.  He took in the situation and hopped up without hesitation. 

"Whatever it takes, hon."  That's my man, all right.  The strong one, the flexible, adaptable one, the one who always, without fail, wears tie-dye shirts when he takes me to the hospital because he knows the bright colors make me feel happy and less afraid.  We drove home much the same as we drove out there: blaring music from my phone through the car speakers, with me singing along.  That's another of my essential coping mechanisms.

At home I was glad to get out of that silly gown and get back into comfy pajamas and lay down.  We still needed to figure out lunch, and I was super hungry from fasting prior to the images, but the pain in my back and neck and shoulders demanded that I just lay there a few minutes and rest first.

Souvenirs from my 2014 scans: hospital gown and armband.
That was when the text message hit both our cell phones at once, and I knew there were only two senders that hit us together like that:  our carrier's automated text acknowledging receipt of my monthly payment, and the showing service that schedules visits of our house, which is for sale.  I groaned.  
Yep, someone wanted to see our house that very afternoon, less than two hours notice.  I wanted so badly to rest, to relax my tensed up shoulders and maybe take a nap, but I want to get out of this 2-story house even more, so despite my considerable grumbling (and swearing) I sat back up, got dressed again, and headed back outside into the sweltering humidity.  Thank goodness we'd just had the A/C in the car repaired.  

I was driving in the general direction of several restaurants, trying to decide where we should get lunch, when hubby pointed out that we were right by the theater, and it was the middle of a week-day, so there wouldn't be any big crowds making my wheelchair movie experience awkward and difficult.  What the heck, I figured, why not take advantage of the opportunity to see dinosaur Transformers on the big screen?  When life gives you lemons, or lukewarm lemonade, you gotta make the kick-ass-robots-and-huge-explosions best of it, right?

Friday, June 6, 2014


Take a moment and watch this staggering piece of journalism, about an artist who tattoos nipples onto breast reconstructions.

This is so beautiful I cried.  I cried that thousands of women all over the world need these tattoos and they shouldn't have to need them, and that thousands should need them but don't because they don't survive.  I cried that he does them so perfectly, so professionally, and that he gets what he is giving them, he understands the gravity, the significance.  I cried because a personal friend with breast cancer was the one to share this story with me.

I've thought about tattoos quite a bit.  My first tattoos were unceremoniously applied as targeting measures for my radiation treatment.  I had imagined, were I ever brave enough to get one, that my first tattoo would be rather more whimsical and enchanting than those sinister blue dots, barely bigger than the point of a needle.  I thought perhaps I'd like to get a "real" tattoo to cover them up, as part of my mental healing, but they are awkwardly located.  One is on the cleavage side of the top of my right breast, the other on the base of my throat.  It's hard to imagine anything I would want to put in those particular places that wouldn't be a hundred times worse than my tiny blue unnoticeable (to everyone but me) dots.

Then there's my back.  Surely that's an expansive, available canvas, and a lot of it is numb so it's not like I would feel much pain getting something to cover up the large, pink centipede of flesh draped down my spine.  But there is always the risk of more surgery, and what would that do to whatever I try to cover it with?  I'd be left with a big mess.  So no tat there, either.  

Pink centipede.  Or weird unzipped flesh zipper. You decide.

Until now, very few have even seen that scar on my back, because I don't like to see it, or show it.  I hate the way it looks and what it means.  I hate to touch it, hate the way the center of it sinks in, unimpeded by muscle and bone that should get in the way but aren't there.  Hate how once, when I gingerly touched it during the months after surgery, I felt, through the thin, jelly like new scar tissue, the alien hardness of the spinal process protruding from the vertebra directly above my fusion.  Below that point, the spinal process, that ridge of bone that protrudes from the back of each vertebra in a smoothly overlapping armor to protect the spine, had been removed from the fused sections to allow for the surgical placement of the hardware and bone grafting materials.  So in addition to being visually alarming and ugly, the scar is also grotesque in a tactile way; it will never feel like a sinuous, seamless unit of muscle and bone again.  But most of all I hate that scar because it tells the story of having cancer, and my life turned upside down, a story that is carved into me with a scalpel like the clay tablets of ancient times. 

And before you get all silver linings on me, yes, I know it really doesn't look that ugly and yes, I know I could choose to see it as a symbol of my survival instead of a symbol of catastrophe.  But let's remember that it's my body that's been mutilated by this disease, it's my future at risk, and I'm allowed to sometimes view it for the ugliness it is.  Cancer patients are too often expected to stay positive and look on the bright side, and deny our rage and distaste for the changes in our bodies.  It sometimes feels like instead of being supported, we must support everyone else by keeping up our brave front and trying not to appear too sickly or upset.  Acknowledging the flaws as flawed doesn't mean we're wallowing, or giving up, or whining.  We can't be expected to wear the rose-colored glasses all the time, just because everyone else needs the reassurance that we're cheerful and upbeat.