Sunday, August 24, 2014

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.

Saturday, August 2, 2014

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.

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.