Monday, January 19, 2015

Not Alone

If I haven't already told you about seeking out social network connections to learn about and cope with your disability and/or serious illness, I need to do it now.  Going through a traumatic medical ordeal can be isolating and overwhelming, but finding a community of others surviving similar circumstances can bring hope, comfort, and even vital information that could help your own healthcare team.  

One especially isolating factor for me has been the sheer rarity of this particular type of cancer.  At less than 1% of all cancer diagnoses, it's easy to feel like there's no one out there who even knows enough about it to give you a fighting chance.  Fortunately, there is a Facebook group for patients and family members with Epithelioid Hemangioendothelioma, and if there's one for such a rare disease as this, there's probably a group or many groups for you, too.  

The group has been absolutely invaluable to so many of its members.  In that community we finally find people sharing similar experiences, fears, and treatments to us.  Perhaps most importantly, in that community we are finally able to compile real data from actual EHE patients to help inexperienced patients and their sometimes equally inexperienced oncologists develop a treatment plan with the best possible chances of success, and actively help researchers who are trying to understand the underlying cause and many different ways this disease presents.

If you have been diagnosed with a serious medical condition, are injured and/or disabled, I strongly encourage you to seek out your own group of similar individuals for support.  You must always be mindful, however.  Be careful to protect your most personal and confidential data, remember that no matter how similar, no two medical situations are ever exactly the same, and don't allow yourself to be completely overwhelmed in the deluge of information you will receive from other patients and supporters.  Read with skepticism and critical thinking, and above all use the information to create meaningful and thorough dialog with your healthcare team - no amount of accurate anecdotal evidence from others can replace the importance of clear, detailed communication with your own doctors.  

Used properly, a patient community can be a precious resource for treatment ideas, understanding, empathy, ties to financial and transportation assistance, and to finally not feel so alone in what you're going through.  I hope you seek that camaraderie in your preferred social venues, be they online, faith-based, etc.

You can find the EHE group at

Thursday, January 15, 2015


My husband and I have long joked that I need to wear a sign like the one in the movie 28 Days, "Confront me if I do not ask for help."  It's an acknowledgement of my stubborn ways and the fact that I sometimes make things harder for myself by being too intent on doing something on my own without help.  

Lately I'm becoming aware of another warning I might need to wear, similar to the defiant threat from the babysitter in Adventures in Babysitting:  "Don't f*** with the babysitter."  Don't mess with me. I do not play around, I mean serious business and I generally do not consider losing an option. 

Forget about all the struggle of the past four years to diagnose, treat, and overcome medical problems of life-changing proportions; this was a character trait from the very beginning I think.  I've never dealt well with being told something was impossible or too hard or not for girls or any other artificial limitations.  I'm the little girl who jumped off 5ft boulders and flapped her arms trying to fly, almost every day. For years. (R. Kelly had nothing on the amount of belief in me.)  

This tenacity has manifested in a variety of ways in my working and private life.  For example, I'm terrific at finding things.  All sorts of lost things.  "The such-and-such file folder is missing; no one can find it."  Oh yes I can. Watch me.  I have a fairly good eye for detail and an uncanny ability to remember where I've last seen something, be it a physical or a digital file.

Sometimes it manifests in direct conflicts with people.  When confronted with the shocking financial betrayal of a colleague, for example, I relentlessly directed my finding skills at tracking down every possible byte of data that could assist in bringing the perpetrator to justice.  (You do NOT want to give me a reason to internet stalk you.)  When my eventual husband's ex-girlfriend attempted to wheedle her way back into his life with emotionally abusive ploys like how depressed she was now that he had moved on to long-distance dating me, I didn't waste much time on useless sympathy.  I attempted to treat her in a cordial and friendly manner, but when she declared that her life was meaningless and included key phrases about being home alone and having available methods to harm herself, you bet your life I did what any trained peer counselor would do: despite being states away, I called her local police to respond to her potential suicide attempt.

So when a local healthcare provider who has never treated me left one practice to start another, and took the entire patient contact database from one site to the next, then used it in a reprehensible email spam campaign to recruit patients for experimental weight loss procedures, I was certainly annoyed by this rather unethical use of my patient data.  I could've just deleted the spam, I suppose, but that's just not my style.  I contacted the new office to determine how they got my data, and when I heard about how he took it from one practice to the next, even patients he'd never seen, I went ahead and contacted his former practice to make them aware of the extent of his data transfer and the nature in which he was employing it currently.  They were shocked to hear of his activities and very glad to be made aware of it.  But even if they hadn't been interested in the breach, my proverbial horns were sharp and ready to address the offending party myself if needed.

If you don't want to dance with the bull, don't wear red to the arena.

Friday, December 5, 2014


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!

Tuesday, November 4, 2014


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.

Sunday, October 12, 2014


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.