MRIday

It's not Friday. It's MRIday. 

Get it?  I crack myself up.

I did it again, did you get that one too?  I crack myself up, like I cracked my own spine from the inside a few years ago? 

This is the humor you get when I'm on a cocktail of Hydrocodone, Valium, Flexeril, and Baclofen.  You'll have to excuse me.

This morning I spent nearly two hours with my old nemesis, the MRI scanner.  I'm so stinking proud of myself for how I handled it that I could hardly wait to come home and tell everyone about it.  It was that good, really.  

They had Pandora so I could listen to music I specifically liked (thank you Imagine Dragons channel!) and did the best they could to make me comfortable on the super hard table, and did a really excellent job of preparing me for each step of the process and being honest about how long it would take to get all the pictures they need of both my cervical and thoracic spine. 

I was praised for doing well at each stage of the process and given lots of encouragement.  And then, much sooner than I thought, it was all finished, and I hadn't ever panicked or freaked out.  Not truly sooner, it really was almost two hours, but it hadn't felt like two hours.  The pain had been bearable.  The heat had been too warm, but not stifling.  I was very relieved when it was over, but not weeping and gasping.  It was as different from past MRI experiences as it could possibly be.

As usual, I'm hoping to learn nothing from today's images. Nothing at all. Not finding any reason for why I'm in terrible pain is better than almost all the actual answers to why I'm in terrible pain. When they look at my tumor and my spine and my ribs and shoulders and wherever else they go hunting for culprits, I hope they see nothing.  Then we can relax, and say this is probably just nerves regenerating and awakening, and after a few weeks of intense, searing pain, they should eventually calm down and behave.

This afternoon, I'm rewarding myself with a sandwich from IHOP for lunch, and recovering by spending my afternoon in my cozy bed with a little cup of M&M's and my husband providing a neverending refill service on my ice water to help my kidneys process the contrast dye out of my system.  I'm so fortunate to have him to help take care of me.  Here's to a well-earned rainy afternoon nap!

Failing

My son was frustrated about his PE class today.  "They asked us to do like, 17 different things and I was only able to do FOUR of them, Mom," he grumbled.

I gently prodded him with questions to get more of the story.  They apparently attempted a variety of gymnastic-style activities like forward tumbling and cartwheels and backward rolling and hands-free back-flips or some such things.  

I said, "I think only trained gymnasts can do most of those things, I'm not upset that you couldn't do them, but like your teachers, I just want you to give your best effort and try new things."

He was still surly. "Well next time they should pick some things that people can actually do!"

I struggled to keep my voice from breaking, because I've been in his shoes, and long before a "legitimate" reason cut short my physical potential.  I barely managed cartwheels as a little kid, and never got the hang of tumbling, because my neck and head refused to tuck properly.  And I was far too chubby far too early to ever do things like back flips and hands-free cartwheels.  

"Well son, to tell you the truth, it's not a bad thing that they picked a bunch of stuff you don't know how to do.  We need to learn how to fail in life.  It's as important as succeeding, maybe more.  Can you imagine what I'd do if I woke up unable to stand or walk and had never ever failed at anything before?  That would just about be one of the most devastating things that could ever happen to me!"

Bubby watched me, guarded, waiting to see what sort of story or point I was trying to make before committing emotions.  This is touchy ground for both of us; he has seen so much suffering and struggle in the past three years.  

"Luckily," I said, with a little smile, "I've had lots of practice at failing things.  Sure, it was still very very hard, but I was familiar with failing.  I could let go of standing and walking for awhile, and focus on something else, something reachable.  Like putting on my danged socks and shoes with those silly sock tools.  It was so frustrating, taking 30 minutes to put on a sock and shoe!  But it was possible, and doing things like that got me through while I kept failing at big things like standing and walking, until eventually I quit failing."

I could see the tension slipping away from his face, the smile trying to come out.  "So as long as you tried, I don't care if you can't do gymnasticky things.  I like the things you CAN do, like geology and dinosaurs and complaining about how solving for area only takes you 5 seconds."  He giggled and I rubbed his buzzcut head, then rubbed it again because it feels nifty when his hair is short like that, and he laughed some more.  

You can learn a lot of important things about life by failing.  Not the least of which is how to get over it.

Hearth

I've had so much to update I haven't known where to begin.  A years-long search has come to an end, opening a beautiful new chapter in our lives.

After an exhausting marathon of visiting houses we previewed online, involving lots of stair climbing and walking around homes not suited to my manual wheelchair, we finally found the one right closest-to-perfect-as-it-gets house for us.  And it was in our budget. And it was very new and well-kept and didn't need any painting or much repair.  And the owners fixed what we asked them to fix and were generous and cooperative with their negotiations.  So, with more ease and less expenditure than I would have dreamed possible, we bought a house. 

Looming over us still, though, was the shadow of the past: the townhome we still desperately needed to sell.  The center of our family that had become burden and cage instead of comfort and home.  Then the fickle hand of fate, that has so often thrown salt water in our faces, took this one exquisite chance to blow us a kiss instead - while we were busily closing and preparing to move to our new house, a buyer surfaced who made an offer on ours.  It wasn't the offer we were hoping for, considering we were already listing the house at a loss, but it was the offer we could live with, and we took it.  

We sweated bullets while the house went through inspections and appraisal.  It was in need of a lot of TLC, but again we were graced with good fortune: the buyer didn't ask for every little thing on the report to be fixed, just a handful of very affordable ones.  In a couple of weeks, after some repairs and painting, we will be free of that property without going completely broke.

That's not to say that we were able to swing this entire transition without any of fate's stinging influence, though.  We got our familiar slap in the face on moving day, when fate revealed that the mover who gave me my quote, for which I had requested full-service packing and moving, had deliberately low-balled me (and other customers) by providing a quote for just moving instead, and not pointing out the difference to me on the estimate.  I confirmed several times by phone and email that I was scheduled for a full-service pack/move on the specified day, and was assured that I was.  But on moving day we discovered that estimator had been fired and that I was only scheduled for a regular move with no packing.

It ended up taking an additional three days and double the original estimate price to complete our move, but at last it's done and we've begun to unpack and really enjoy our new home.  It's spacious and everything essential is on one level, so I have plenty of room to walk short and long distances, can enjoy regular bathrooms, and sit in my recliner before the comfort of our cozy gas fireplace.  I know this winter will mean many evenings gathered around that warm hearth.  As soon as I get a new shower chair to fit the shape and size of the master shower, I'll be able to enjoy long hot showers that I've missed for years while trapped on the sponge-bathing bathroom-less ground floor of the townhome.  We bought a lawn mower and trimmer, and yesterday I sat outside in my wheelchair enjoying the sights and smells of watching my husband mow our beautiful front and back yards for the first time.

We're about two blocks from the kids' new schools, so in the mornings and afternoons, weather permitting, I am able to take my power chair out and walk them to school.  Our neighborhood is fabulously accessible, with nice sidewalks and curb ramps everywhere.  Life isn't without mobility challenges, though, but now they are mostly about my own limitations and over-exuberance.  I spent so much time walking the first week we were here, I started to get blisters on my feet and bad swelling in them.  I had to learn to back off a little, to still give myself permission to lay down and elevate my feet now and then, and give my back a rest from constantly trying to do and see and be involved in it all.  I'm still working on finding the happy medium between exertion/doing/pushing the limits and resting/relieving/acknowledging my limits.  

We didn't buy a wonderful new, more accessible house so I could kill myself trying to live like I'm not disabled!  We bought it so I could live a better, more active life despite being disabled.  And that is what I will do.

A Chilling Challenge

When news about the ALS Ice Bucket Challenge started circulating, I knew it would eventually find its way to me.  In 2013 I wrote about my personal connection to this disease, so I am certainly prepared to put my money where my grief is.  But the point of the Challenge is to raise awareness beyond just the people who were personally affected by ALS.  To seek out new individuals whose hearts will be touched by the terrible facts about ALS and its slow march to death, or by the light-hearted bravery of a friend willing to get drenched, and who in turn will open their wallets to in some way help researchers get ahead of this disease.  

I'm a bit of a stickler about conserving water, though, so instead of wasting a bucket full in a drought year, I'm just going to cut straight to the money.  

This carefully folded currency has been tucked away in my Guatemalan change purse for more than two years, perpetually waiting for some "special occasion" purchase I never could quite commit to making.  

Tomorrow President Grant will travel via ATM to my checking account, where within 24 hours I will finally give him a worthy purpose by electronically donating him to the ALS Association.  

And I nominate you, beloved readers around the world, each and every one of you: within 24 hours please make some contribution to this fundraiser.  

You can give in many ways, by donating what you can afford, by using your social networks to reach out to more people to raise awareness, by partaking in the actual Ice Bucket Challenge and getting doused and nominating three friends.  Choose what you can do, but do something.  

ALS is like a train wreck happening in slow motion; you know there is great suffering and death at the end of the line, but you are powerless to get off the train.  If enough of us contribute, that will someday change.

Casualties of War

So fades from this world another light.
Another flame burned out long before it should.
Darker are we that remain in this absence.
More terrible our useless wrath against the curse we can not defeat.
It is cellular annihilation, in the face of which our only defiance is to LIVE. 
Live ferociously, shine unapologetically.
Every breath, fierce;
every heartbeat, thunder.
But in this rebellion there is no solace.

Last night a brave little girl who should not have known what suffering is quietly released her spirit from struggling with cancer too relentless to overcome.  The only thing greater than my anguish is my anger, as ineffective as that is.  This child, my niece's daughter, was about the same age as my son.  She had a glowing smile and feisty attitude.  When the cancer in her brain returned, and doctors told her there was little they could do, she said, "Well I'm just going to fight that!"  

And oh how she fought.  Through dangerous, lengthy surgeries and sickening treatments and debilitating pain and weakness.  She battled despite the hopelessness of the odds and in the face of frightening and chaotic changes in her home life and family structure that would have challenged the patience of any healthy child.  Such herculean efforts should have been rewarded with victory, right?  The glorious remission, the sought-after No Evidence of Disease we all pursue so valiantly.  Such is ever the language of cancer: a lexicon of warriors and battles and elusive conquest.  With a culture of heroism and war even adults struggle to live up to, it's no wonder we experience such outrage when children are drafted in as soldiers against cancer.

This morning I saw a new side of the cancer front: volunteers.  Like nurses and doctors performing triage amid the hail of gunfire and boom of cannons, my six year old daughters saw Mommie's gaping wounded heart and volunteered their own kind of first aid.  Here are the sympathy cards they made for me.  

 My great-niece and I with flowers, looking happy.

Me weeping fountains of tears at my great-niece's grave.

I'm touched and comforted by their kindness, but brokenhearted that they ever had to participate in this damned war.  That any of us do.

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.

Marathon

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.

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. 

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?

Ink

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. 

Semi-Finals

Thanks to the tireless efforts of our family, friends, and lots of good people who simply heard our story and felt inspired to do a lot of clicking, my husband and I have made it to the Semi-Finals judging stage of the National Mobility Equipment Dealers Association's contest to win a Wheelchair Accessible Vehicle.  

Our supporters have put up with a nearly endless litany of polite but entreating reminders all but begging for their daily votes, and never once complained about being sick of us asking for so much help.  They logged in every day, answered puzzling and sometimes tricky questions that helped everyone learn a little something extra about mobility issues, and cast those all-important votes that got us into the second round, where our fates are now in the hands of a panel of review judges.  

A huge thank you to everyone who pointed and clicked us into the top 10%, we are forever grateful for your outpouring of support.  We will update you again when the winners are announced!

Design Disconnects

I ran into another of those charming design flaws, today, that make life for wheelchair users so interesting.  And by interesting, I mean uncomfortable.  This was the ledge I had to navigate to get my chair from the ramp to the sidewalk and back again:

Awesome curbing is awesome! Not.

This is a frequent occurrence, and one which is fairly discomfiting, but honestly not as annoying as that old standard of retail areas everywhere:  brick/cobblestone sidewalks.  Those definitely take the cake, as you may recall I've grumbled about considerably in the past.  These are all just signs that ADA is still an inconvenient afterthought for most people employed in designing new public spaces, to say nothing of properly retrofitting older sites.  Until we start getting the considered, respectful attention we deserve on the engineering level of things, we are going to continue to face sub-standard ramps, walkways, and access points at every turn.

No Man is An Island

But as it turns out, a man who brings an island was just what this woman needed.  

Mobility issues in the micro-environment of the home can really push you to craft creative solutions.  In my household, because of the effects of pain levels and exhaustion on my ability to get around safely, we tend to think of my mobility as an energy resource bar.  The bar starts out mostly full in the morning, and decreases throughout the day depending on the duration and type of my activities.  So we try to conserve energy as much as possible.  If I want to be able to cook dinner in the kitchen at 5pm, I can't be spending the whole day sitting upright in the rocking chair or doing a lot of walking trips, because those tasks cause pain and muscle exertion that drain my energy bar faster.  When the bar gets to zero, I have to take pain medicine and rest my legs and back by laying down.

To combat wasted energy trips retrieving items that I constantly or frequently need to have nearby, we've taken to accumulating a lot of my stuff on the chair I keep next to my bed.  It started out as a balance guide because I couldn't stand up and finish dressing (pulling up pants, fastening them, etc) without grabbing onto something like the nice, tall back of a chair.  It also provides a place for me to lean forward slightly and rest my head on my forearm when my vasovagal syncope threatens to endanger my toiletting routine.  As I progressed with therapy, it became less and less necessary as a balance aid, but was a convenient place to fold a few clothing items so I could dress myself without asking anyone to bring me garments.  

And so it has grown, over time, collecting this or that which I found I needed and didn't want to ask for help with or spend energy fetching.  But a chair full of stuff is heavy and awkward to move, so whenever I needed to get past the chair to travel to the front door, I either had to carefully inch it away from my bed closer to the kitchen wall and squeeze by it, or walk all the way around through the living room, dining room, and kitchen to reach the front entry.  This was not only difficult for me, but even difficult for able-bodied persons to work around.

This not-very-precisely scaled floor plan

shows the mobility challenges 

of the first floor of our house.

Sometimes, you have to think outside the box to find the solution to your problems, and that means seeing ordinary things in extraordinary ways, in uses for which they were not originally designed.  While shopping at our local Costco this weekend, something caught my husband's eye and he immediately saw it as the elegant solution to our problem, despite this having nothing to do with the item's advertised purpose.  He spotted a portable kitchen island, and in under an hour after he opened the box, it had been assembled and stocked to become the perfect bedside resource cart.  

 You never want to be more than a couple steps away from your favorite tie-dye shirt.

It has shelves that hold my folded clothing and purses, a basket rack that keeps all my medications, contact lens supplies, medical testing kits, lotions, perfumes, deodorant, hair care, therapy weights and stretch bands, and is topped with a solid wood counter surface.  The wheels move easily on the carpet, and the counter is still high enough for me to pull it close to my commode and gently lean on it if necessary.  However, if I feel a full faint coming on, I will lean sideways onto the bed, so that I don't pass out on the island counter and potentially injure myself when the wheels allow it to roll away from me.  For me, vasovagal syncope has very clear warning signs that should give me plenty of time to make that adjustment, as I've had the problem long enough to be very familiar with the signals.

Once again, creativity and repurposing solved a messy, irritating mobility problem in a neat, organized, and extremely satisfying way.  If you find yourself not as able as you once were, looking around your houseful of challenges and feeling a little lost in them, remember to step back and re-imagine what you have to work with.  When you view your surroundings in a new way, hopefully you, too, will find your own quirky solutions perfectly adapted to your needs.

When Reinventing the Wheel is a Good Thing

The Israeli company SoftWheel has given a fresh design makeover to the age-old human mobility innovation: the wheel.  In what I would call an elegantly simple solution to an ancient, common problem, they have created an inner spoke suspension system for wheelchair tires, and in 2015 they will also be rolling out a similar design for bike tires.  The shock-absorbing system allows the wheelchair user (and later on, cyclists) considerably greater comfort and mobility in navigating stairs and curbs without ramps.

  


For someone with a spine like mine, there may never be a day when I can use technology like this to wheel myself down stairs or unramped curbs, but it will definitely increase the mobility of wheelchair users who do not have delicate spine issues.  And until architects get over their obsession with brick and cobblestone sidewalks, this design might allow a little bit more comfort in shopping centers and other public venues.  

In fact, SoftWheel's inventor was inspired to solve this problem when an injury forced him into a chair for several weeks and he discovered how agonizing it was to roll over the grooved stone paving slabs commonly used in sidewalks where he lives.   Such textured paving methods are apparently all the rage with the engineers of public spaces all over the world, and while I would love to see a complete paradigm shift in the architecture that itself is the problem, innovation like this is certainly a good interim step.  It's very encouraging to see great thinkers start turning their attentions to mobility issues of any kind.  

Hungry for Appreciation

I love cooking.  Always have.  But it's not easy for me to do anymore, and probably never will be as easy as it used to be.  Lately I've been trying to do more home cooking anyway, because it's much more cost-effective and healthier for my family.  My husband and I have a pretty well-organized dance for getting my food prep needs set up and making my cooking procedures as painless and simple as possible.  Even with all that readiness, it still takes an hour or more of serious physical effort for me to make a meal though.

So you can imagine how I felt after that effort, trying to sit down and enjoy my food, with a non-stop stream of complaints flowing from the sweet mouths of my three babes.  They didn't like the way the sauce was mixed with the pasta.  They didn't like the sausage to be in the pasta, either.  Didn't I know they don't like onions and sweet peppers?  I sat there and listened to one thing after another, the three of them taking turns at it, until I snapped.  I ordered them all to be silent for the rest of the meal, and reiterated that they would eat every bite of the reasonable amounts we had served them.  

For the rest of the meal I stewed over it.  They were so ungrateful for what we have.  Of course I felt unappreciated and annoyed by their lack of respect to me and the effort I put into cooking.  But I wanted them to learn something bigger, something more important than just being thankful to Mom for taking the time to prepare something better than fast food.  That's when I had the idea about the report.

I assigned my kids to do a report on childhood and world hunger.  It started the next night.  In every step of the process I tried to incorporate skills they practice in school, and always their work on the project waited until after their regular homework was done.  I printed off fact sheets I found online, and had them use their highlighters to find the essential information.  Then the three of them chose what they thought were the 10 most important facts. 

The next night, my oldest combined the 10 facts into a written report, which I said had to be at least 20 sentences long.  Tonight, he presented his report to the family, and his younger sisters were charged with the task of writing down 5 things they learned.  Here, using their nicknames to preserve their privacy, are the results of their efforts.  I've transcribed it just the way they wrote it, imperfect and wonderful. 

Bandit learned:  Being malnourished is bad for you.  870 million are chronically hungry.  11 million kids get free or reduced price breakfast.  In the US, 16 million go hungry.  5 million kids die because of hunger.

Little Bit learned:  5 million people die because of the effects of hunger.  Some people get free lunch to help fight hunger.  Hunger causes sadness, anger, and trouble learning.  The world already makes enough food for everyone.   People go hungry because they can't afford to buy food or they can't grow it.

And big brother Bubby with their source material:  

World Hunger

This is about world hunger.  In this report there are 10 facts.  Please take it serously. Going hungry is the cause of mallnutrithshon and other health problems.  Effects of mallnutrition can be fatel, 5 millon kids die because of the effects.  870 millon people are cronicly hungry.  Cronicly hungry means the almost never eat [enough food].  It the US 16 millon kids go hungry.  Kids who ar mallnurished are likle [likely] to be sad, angry, have truble making friend and learning will be hard.  11 millon kids get free or reduced price school breakfast, 21 millon kids get free or reduced price lunch and 3 millon get free food in the summer too.  85% of low income famlies wish they could make health meals but only 50% do, do to the fact healthy food is expencive.  The world produces enough food for everyone but the main problem is people are too poor or their land is to small to grow food.  Now you know how bad world hunger really is.

I couldn't be more pleased with the lessons our family learned this week.  I even forgave that it wasn't actually 20 sentences.  I think all of us are a lot more appreciative for the plentiful food we have, and the simple joy of sharing our good food together as a family.

And as a bonus, tonight I spent an hour preparing boneless skinless chicken thighs, with stuffing and peas.  My wonderful children were generous with praise, they even said it was the BEST. CHICKEN. EVER.  I totally agree.  With everything that this disease has tried to take from us, every meal we share together is the best ever.

Ain't No Mountain

Today, for the first time after two years of not being capable, hubby and I shared our anniversary date at our local fondue house.  We used to always have our anniversary dates there, but with the restaurant being located in a basement and all the physical challenges of the past few years, we just didn't get there.  We have been married 12 years tomorrow, and this is also the anniversary of the month I began to stand without help and took my first steps.  Today we overcame a hurdle that felt like it represented everything we've faced in our marriage so far, and emerged strong, united, and unstoppable on the other side.  Appropriately, it was a mobility hurdle.

It took us close to twenty minutes to find handicap accessible parking within a reasonable manual-chair-pushing range of our reservation, and when we found it, it was right on the street and required either stepping up onto the curb or wheeling down to the corner of the block to use the intersection curb ramps.  If we had owned an adapted vehicle, we could have extended a ramp from inside the car to the curb to avoid that issue.  This was followed by a two-block journey over every wheelchair warrior's favorite uneven pavement surface: bricks.  When we reached the restaurant, they were having some difficulties with their chair lift.  It got us down to the seating area, but it appeared to be incapable of making the return trip after our meal.  

The apologetic staff offered to let us exit through their back door, which would have put us even further from where we parked, but I had a different idea in mind.  I counted roughly twenty stairs up to the street level.  They were too wide to use the arm rails on both sides, but had a nice gentle rise of only about five or six inches.  I told my husband I'd like to give it a try, that I thought I could do it, so my muscle-bound hero folded up my manual chair and carried it up the stairs, while I went to the right-hand railing.  A kind staff member stayed just next to my left side to offer support if needed, and I began my climb.  I knew as soon as I'd passed the first two stairs that I was going to make it all the way to the top.  The last few steps were noticeably tougher than the first half had been, but overall it was not the Mt. Everest-style experience that stair climbing has typically been for me the past couple years.  The staff applauded when we reached the top, and my husband and I cheered and high-fived ourselves.  

Back home, resting in my hospital bed, new possibilities dance before my sleepy eyes.  I don't know how often I can pull off a stunt like what we did today, but I suspect it is more often than what I was previously giving my legs credit for.  I'm rather looking forward to finding out.  That reminds me, it's been a long time since I did a real distance-push walk, where we keep track of how far I can go and really strive to reach the limit of my legs' endurance.  Perhaps it's time to do that again.

Accessibility Woes

Last night, in a fit of wild hopefulness, I decided to take a quick peek at the local real estate market to get an idea of how many ranch floorplans are for sale, and what their prices are lately.  We're not actually ready to start seriously shopping for a new home yet, there's still things that have to be done to ours and strategy that has to be planned with our realtor before we re-list our townhome for sale, but I wanted to just give myself an exciting little taste of what's available.

What I got instead was a bad taste in my mouth.  First of all, unlike when we were searching for homes in 2012 and 2013, I couldn't find any real estate website that would effectively and accurately let me limit my search to only ranch-style, single-story homes, so I had to sift through lots of results that were completely impossible for me to live in.  Secondly, from what I could identify in the search results, there are even fewer single-story homes available than we had to choose from previously.  Accessibility has never been a great priority of builders, this isn't exactly news to me, but I find it increasingly frustrating that there are so few homes available to match my dream of having everything I need on the ground floor with me.

If money were no object, I would just buy a plot of vacant land and hire an architect to design the perfect accessible house with the 4 bedrooms we need so that someday our twins can stop sharing a room, with a basement for tornado warnings but laundry on the main floor.  It would have plenty of kitchen cabinet space and a master bathroom with a tub I can put a shower chair in, plus grab bars.  There would be at least one full garage spot, where we would park the wheelchair accessible vehicle of my dreams, and we would all live happily ever after.

But of course, for anyone with disabilities, money is usually quite an object.  I'm scared to even find out what it would cost to actually hire an architect, much less proceed from there to actual construction.  We don't have the knack for winning lottery jackpots, apparently, and short of that I don't see any custom building in our future.  Maybe someday more housing developments will consider the needs of people with disabilities.  I used to work in the construction industry and I know that the ADA has (forcefully) helped bring about more accessibility awareness and availability in multi-family homes and apartment/condo construction, but I've yet to really see it be a consideration in single-family developments.  We've been a marginalized group that architects have groaned about accommodating for too long, and from the teeth-rattling cobblestone/brick sidewalks in shopping centers to the universally inaccessible obsession with 1.5 story, 2 story, and various split-level home styles, modern construction needs a complete overhaul that embraces and celebrates the United States' largest minority group:  persons with disabilities.

This is not a beautiful sidewalk. 

It is the most painful kind of sidewalk 

I've ever wheeled over.

National Mobility Awareness Month

It's shameless self-promotion time.  Well, promoting my husband, but if he's my better half then that would mean this is still self-promotion.  

It's National Mobility Awareness Month, and to help promote a better understanding of mobility issues and solutions, the National Mobility Equipment Dealers Association is having a contest to celebrate Local Heroes and awarding mobility-adapted vehicles as grand prizes!  I nominated my personal hero, my husband, and if you follow the link below you can read why he's my Local Hero, why I want to help lessen his load, and cast your daily vote to help make him a grand prize winner!

http://www.mobilityawarenessmonth.com/entrant/chris-carleton-olathe-ks/

Don't forget, you can vote once every 24 hours, so please return to his page and vote each day.  Only the top 10% of entries by votes will get reviewed by the judging panel for a grand prize.

Cooking with SCI

Today's episode of The Mobility-Challenged Gourmet features restaurant-quality Cheese Quesadillas with sour cream and fire-roasted tomato and corn salsa.  Delicious!  

For this tasty item I utilized a variety of mobility skills and tricks.  It required some bending to get the griddle from the under-oven drawer, as well as some brief standing sessions gathering ingredients from the fridge.  It's important during this stage to remember your energy efficiency priorities:  make as few trips as possible, but never carry more than you can safely hold and still maintain your balance.  Since the cheese and the tortilla packages were both fairly flat, I carried them together, then went back for the salsa and sour cream.

Next, I brought a fairly comfy office chair into the kitchen.  I assembled and grilled the quesadillas sitting down - always remember safety when cooking!  In front of a hot stove is not the place to be standing around and lose your balance, as there is nothing safe on that stove top for you to grab onto to steady yourself.  Sometimes I stand for a moment to get the proper leverage to flip the tortilla or check the color it's getting, but always with the chair right behind me so that I can just sit if there's a problem, without having to grab or touch anything with my hands.

Presentation tip:  a pizza cutting wheel will give you those beautifully clean quesadilla cuts without tearing up your tortilla or smearing cheese all over a knife.  Nothing really sticks to the pizza wheel, and often all it needs after cutting quesadillas is a wipe down with a damp paper towel - saves on clean-up energy!  Here's how the toasty tortillas looked before I dressed them in my favorite condiments:

Speaking of clean-up, that is certainly an aspect of cooking that can't be ignored.  Now, I have a husband in my life who has generously offered to clean up the kitchen after any cooking attempts I feel well enough to accomplish, but if you're on your own you will want to budget your time and energy to allow for clean-up as well as cooking.  Consider your total cleaning needs when you are planning your meal, and how best to achieve them.  You might need to rest after eating, and return to the kitchen later in the day with refreshed energy to clean, and in some cases planning pain management in advance will help you get through both your cooking and your clean-up more comfortably.

I hope you've enjoyed these tips for disabled cooking, and that you will always find ways to safely push your horizons and experience the things you love to do in the way that's best-suited to your abilities.  Happy cooking, and better yet, happy eating!

Prepping and Waiting

I'm not very good at waiting.  This will come as no shock to those of you who know me personally, but for those who don't I must confess to not always being the model of patience and tranquility.  Hubby and I like to claim that he has my share of patience, by way of excusing my lack and explaining his abundance.  Right now I am stuck waiting for surgery to finally be rid of this extra large kidney stone.  

Last week we saw the large stone specializing urologist, and were scheduled for extraction on Jan. 30, which seems so very far away.  Especially since the ureter stent they placed to help drain the kidney affected by the stone causes a lot of bladder irritation and pain on evacuating.  I've finished my course of aggressive antibiotics, so there's only the phenazopyridine to fight the discomfort.  I'm diligently fighting off a cold, constantly hacking and coughing and blowing my nose so it can't settle into my chest.  There's not much else I can do to try to be ready for surgery.  

But there's plenty to help me pass the time in between.  Like seeing my endocrinologist last week, and being thrilled to confirm that my blood sugars have been in great control, my A1c value decreased from the high sixes to 6.3, and getting permission to drop from four glucose checks a day to two.  It's fantastic to get some good news for a change.

A trend we will hopefully continue Monday, when I see my oncologist for those all important blood tests, that will, I'm sure, continue to show NO signs of any dangerous changes to my tumor or the rest of my system.  The lab will also be running some tests ordered by my endocrinologist to keep an eye on my somewhat questionable thyroid hormone levels.  Let's hope that turns out to be a non-issue.

Meanwhile the kids are all doing excellent in school, all A's and B's, so we took them out to celebrate their report cards last night, and to spend some of their gift money on the toys of their choice.  The weather took a break from sub-zero wind chills to make that a pleasant afternoon, and I never forget to be grateful that I can still go and do those types of things with my family.  If I'm going to spend a couple more weeks waiting for surgery, at least they will be good weeks.

New Year's Resoluteness

It's been a hectic end to 2013, what with this whole kidney business threatening to keep me hospitalized in late December and almost ruin yet another special day with my neverending medical crises.  Fortunately, I got out in time for Christmas, and also had New Year's at home.  

Now we are kicking off 2014 with our game faces on.  Monday is my pre-surgical consult with a urologist specializing in very large stones, followed later that day by my pre-surgical anesthesia consult, so that everything will be in order for whatever date they set my kidney stone removal to be.  Wednesday brings routine Endocrinology check-ups for both hubby and me, and the week after that is my six month Oncology follow-up with those all important lab draws to check for non-specific tumor markers and other traces of potential problems in my blood.  Next up we'll need to schedule the entire family's eye exams that we're more than a year late for, and then see about finally getting us all in to visit the dentist again, two things that were allowed to lapse in the face of more urgent issues and lack of time and energy to get them done.

People are always making lots of resolutions this time of year, usually about their health - eating right, exercising more, losing the magic number of pounds they think will make them happy inside their skin.  After seeing the way my oversized body has weathered the shitstorm of problems thrown at it the past three years, I'm inclined to not make any resolutions about my size anymore.  Clearly my shape is not going to change much, and if it continues to survive every hurdle it faces, this body suits me just fine.  

Nope, my resolutions have less to do with body changes and more to do with horizons and possibilities.  I would like to again be able to handle car travel and hotel stays, enabling much-needed trips to California to visit my hometown and family.  I'd like to cautiously invest a little money in small improvements to this house, so that we can once again attempt to sell it and relocate to a single-story, handicap-friendly home.  I'd like to see my family visit more of the fun and educational attractions our city has to offer, more often, even if outings with my big power chair are physically exhausting and tedious to plan.  The memories are worth it.  

I hope you set your sights on interesting horizons in 2014, and that the coming year brings your goals and dreams within reach.  Never settle for less than your best, and always strive to surround yourself with people who uplift you, not tear you down.  And may we all find ourselves healthy, satisfied, and still full of hope once again when this year is done.