Tuesday, December 17, 2013


I have a very contentious relationship with my heart.  It likes to do weird, fluttery things once in a while, but never when I have someone listening to hear them.  It likes to skip a beat sometimes, it seems to me, but never when I'm laying down connected to ECG sensors.  It likes to go faster than necessary, periodically, leaving me wondering where the fire is.

When I developed a blood vessel tumor in my spine, my heart liked to beat nice and hard there, a throbbing reminder of the constant pain.  This is your heartbeat.  This is your heartbeat from inside the tumor that wants to cripple and kill you.

Lately, with bladder and kidney infections complicating an enormous 10mm kidney stone that nearly made my whole system septic, I've had some really terrible headaches.  Headaches where my heartbeat pounds away in the center of my frontal cortex.  Where every throbbing, eye-clenching, forehead-cradling beat screams an alarm in my soul.  Thudding, drumbeat pain. Feeling my heartbeat from the inside of my body, this time from inside my brain, just like how I feel it from inside the tumor in my back.


Now you begin to understand the terror in our eyes when these headaches hit and my husband and I look at each other, and do not say what is not allowed to be.  I'm scared and cry, and he holds me, and knows my fear.  I just want to get better. I just want to get past this freak show and move on.  I just want to keep going.

The headaches seem to improve as the infections are treated with antibiotics.  We hope they go away soon.  Maybe then we won't worry.

Thursday, October 17, 2013


When my husband walks past the right side of my bed on his way up the stairs, I like to stick my leg out and stop him, and he leans his buddha belly on my bare foot.  For completely inexplicable reasons, this makes me ecstatically happy.  I'm giggling like a school girl while I press my toes against his soft t-shirt, his warm body filling the arch of my foot.  When we connect in that way it's like I'm grounded, my roots go through his strength and into the earth and I find my peace when I've lost it and become frazzled.  I don't know if it's partly because I'm so happy that I can feel some things with the skin on my feet (even though they aren't 100% normal in nerve perception yet) or if it's just the fact that he used to tickle them all the time and now I like it when he gently cradles my foot against his strong trunk, but whatever it is, I absolutely adore it, and I don't care that it makes him laugh at me, not at all.  In fact making him smile when I do it makes it even better.  "Honey, my foot needs your tummy," is not an uncommon phrase in our lives, and I'm okay with that.


"You can skip this song, honey," I said as the first few piano notes came out of the speakers.  It's my playlist, I like all the songs on it, but some are more mood-specific than others.

"No," he replied, and my mouth fell open.  I can't remember him ever refusing to skip a song before.  In fact, I often have the impression he's not hearing them completely, like the music and our singing in the car is just background noise for his non-stop brain, which is okay by us.  The kids and I sing.  We do it for ourselves, because we like singing; it's okay if he's daydreaming while we do it.

"What do you mean, 'no?' It's a sad song, I don't wanna hear it right now," I countered, sure that he would shrug and comply this time.  Why would it matter to him that much what we listen to?

"I like this song," he said mildly.  "I like to hear you sing it," and I felt myself blush.  Still, after sixteen years of knowing each other, he can bring the hot flush to my cheeks with the simplest of compliments. 

I was stunned.  Of course I have my own favorite songs to sing, the ones I really feel in my heart, and seem the best suited to my vocal range and style.  And the ones that have a nice easy warm-up range, and the ones that really challenge my pitch and control.  I feel like I'm a decent singer, for the most part not unpleasant to listen to, and I love it so much I had to get over my fear of singing in front of others in order to get my "fix" when other people are in my car with me or while I was in the hospital.  I had to learn to let strangers hear me sing, but I mostly sing for myself. 

I guess it's not always background noise for him, though.  Sometimes, he's really listening, enjoying my voice.  I was pleased as punch about it.  "Oh," I said with my shy smile.  "Okay."  So we let it play, Adele's sadly defiant "Someone Like You," and I made it as good as I could make it.  Who wouldn't love a man who loves to hear you sing?


In the next few months, Medicare will become part of my life.  This is one of those milestones I had hoped never to reach.  I wasn't supposed to stay disabled and on Disability benefits long enough to qualify for Medicare.  I was supposed to have completely recovered and gone back to work by now, in that secret inner progress chart of my control-freak life.  I am disappointed, nervous, worried, and hopeful all at once.  How much paperwork will this involve? How much will it complicate my private insurance benefits?  Could this possibly result in my having more or better benefit coverage than I had with just private insurance?  Or could this possibly relegate my private insurance to a secondary role with fewer benefits?  I have a lot of research to do.

Tuesday, October 15, 2013

Everybody Poops (but not like me)

This topic has become so painful, I almost can't write it.  In fact it's been sitting as a draft for weeks.  But when I set out to chronicle this beautiful mess, I said I would tell the truth, and not hide things that are uncomfortable because someone else out there could be feeling like they're the only one.  And because I do not want to be the only one.


Everybody poops, but not like me.

Most people poop so regularly they don't even think about it.  They never ask themselves, did I go yesterday?  How many days has it been since I pooped?  But spinal cord injury has given me what is politely called "bowel motility" problems, which means sometimes I don't poop.  I'm putting the food in, and instead of hopping on the first flight to Colon International (Exit-only) Port, the food is lounging around for an extended stay in the Intestinal Hotel.  Sometimes exercising helps move things along, but not always.  Sometimes I take a stool softener/laxative, and sometimes doing so causes me equal and opposite problems.  Sometimes my medications or diet cause plumbing problems, too.  Sometimes... okay, a lot of times, it is not safe for me to permit even the tiniest flatulence to pass, because doing so might soil my clothing and bed.  You know how it is when you're stuck in a social situation where you absolutely can't fart no matter how badly you need to, and how painful and miserable that built up gas pain is?   I'm like that all the time, Steven Wright used to say.  I'm not like that all the time, but often.  Often is bad enough.

Other people have tough poop days too, sometimes.  Usually experienced in the privacy of a bathroom, though.  Other people don't evacuate their bowel problems into a trash bag-lined bucket, and then have to ask someone more able-bodied to dispose of it.  Other people have never had to work through the transition from diaper to independent toileting while they were old enough to remember it.  We mercifully forget what it was like to have our parents wipe our bottoms, unless they are having to wipe our bottoms when we're in our thirties.  That is unforgettable, for both parties, no matter how necessary and appreciated it was.  And it was definitely appreciated.  I have never before or since been in a situation where I felt so much gratitude and such devastating humiliation, all at the same time. At least I've moved beyond that stage.

Still, there's a lingering odor of embarrassment around here.  I've made the leap to total independence during the day, graduated out of the fantastic daily assistance of the loving family member who's been helping me for more than a year.  But it's not safe for me to dispose of my commode waste myself, so it has to be stored for disposal later, when my husband comes home.  I try to manage the odor with Febreeze, but it's still a constant reminder that things are definitely not normal around here yet.  I wonder when they ever will be.

Sunday, August 18, 2013

Just Drive

On Friday, my husband took a personal day to help me cope with losing the companionship (and babyhood) of our two daughters when they began all-day kindergarten this week.  We took the opportunity to get out of the house together, in the day time, which felt bizarre because usually any time we have to ourselves is at night with the kids staying at their grandparents' or cousin's house.  And I took the opportunity to drive everywhere we went, and made a point of not using assistive devices as much as possible: walking to and from my wheelchair without canes, stepping on and off a half-size curb without canes, etc.  But we didn't really venture all that far from home, and all the driving was city-street driving.

I've been thinking a lot about freeway driving, though.  Thinking about my anxieties.  I remember when I was a kid, I always got carsick on our trips to the coast.  The highway to the coast was extremely winding with many steep banked curves and dappled with so many patches of sunlight and shade that it almost had a strobe-light effect.  I suffered every time we went until I turned 16 and starting driving there myself.  Controlling the vehicle myself made a huge difference in whether I got nauseous, and I finally started to be able to have relaxed, enjoyable rides to the beach.

So I got to thinking maybe freeway driving would be like that, too.  Maybe when I'm in control of my fate somewhat, I would have less anxiety.  Today, while we went shopping with the kids, I was mulling that over in the back of my mind.  After hitting the stores, we decided to get dinner at a restaurant a few miles away.  It absolutely made the most sense that we should take the freeway there, and get there in less than 10 minutes.  But I was still thinking it over, so while I was thinking, I took the back roads and got there in about 15 minutes.

It's a difficult situation, trying to evaluate the risk of panic attacks or emotional responses and decide whether I'm ready for that step or not.  My instincts are ready, there've been enough ordinary traffic incidents to give ample evidence that my reflexes are as sharp as ever.  I am totally in control of the variety of quick motions and delicate handling that are needed to respond to sudden traffic changes, obstacles, etc.  

I know my body can handle it, it's the anxiety I'm worried about.  What if a sudden swerve brings on a crying jag like the last time hubby had to swerve?  What if there's a near-miss accident and I start hyperventilating and get all weepy?  What if the highly-weaponized vanguard from the planet Snorfblat invades in the middle of our commute home?  Okay, that last one is pretty unlikely, but no more pointless than all the other worries.  I mean, come on, at this point I'm basically worrying about worrying.

I let the whole thing simmer on the back burner while we ate dinner.  I enjoyed my blueberry pancakes with a sense of tongue-in-cheek humor:  I allow myself just about as much blueberry foods as I want because, after all, they are supposedly a cancer-fighting superfood.  Thanks, cancer!  I love blueberry foods.
Sitting in the parking lot while we all got loaded in the car and buckled up, I thought again of my childhood.  When I was 8, I took riding lessons, and was very excited to show my grandma how great I was doing when she came to visit us.  But while she was watching, for the first time ever, I was thrown from a horse.  I didn't yet know it as a guiding principle for many parts of life, but I did know that you were always supposed to get back on the horse when they throw you.  I was hurting and embarrassed, but I had to get back on and finish that ride.  Tenacity has always been a strong characteristic in me.

In the end, it came down to a pretty simple equation.  If it feels cowardly and is more annoying to stay off the freeway than get on it, then it's time to get back on it.  So when we left the restaurant, somewhere we've been many times before, I took the most natural route home that I always used to take.  Sometimes you have to stop worrying and just drive.  I got on the freeway.  

And it was fine.  It was ordinary and without fanfare.  Nothing unusual happened, and we arrived home safely.  Just another outing completed, just one more little victory in living our lives our way.

Wednesday, August 7, 2013

Summer Highs and Lows

In July, I had another six-month check up with my oncologist.  As usual we did blood work, and scheduled some CT scans.  But unlike the usual, we talked about progressing to only annual imaging if everything still looked the same, and it did.  There have been no signs of growth in the tumors since I completed radiation therapy in March of last year, and my blood continues to be negative for unspecified tumor markers, which would act as an early warning sign if the cancer had spread.  We'll continue to do the blood work every six months to be sure we catch any changes quickly, but it will be nice not to have to go down to the big hospital for imaging for another year.  Because of course, with our luck, we never seem to have a wrinkle-free imaging visit.  This time the scanner broke down, causing long delays, but at least the hospital had another one that was working, so we just had to be relocated to a different medical building.  As scanning hang-ups go, that one was pretty benign.  

Last weekend I got back behind the wheel again, and drove my family to the library, a restaurant, and the grocery store.  I have missed driving, have always preferred to be the driver and loved it from the moment I first got behind the wheel of the '57 Nash Rambler Dad taught us how to drive in.  I still stayed on the side roads, didn't get on the freeway at all.  Even though the car accident that gave me nightmares and still scares the shit out of me when we go places was on a side road, not the freeway, my fear still knows that at freeway speeds, other people's carelessness will be even more damaging to me.  I still get overwhelmed by the fear sometimes, like when my husband had to swerve left to avoid an obstacle in our freeway lane a couple weeks ago, and I was reminded of the desperate swerve left that the medical transport driver made to avoid hitting the street light pole after another car had rammed into the side of us.  I didn't want my children to know how frightened I was, so for the next ten minutes after that I was silent, getting my breathing and my tears back under control.

Summertime is great for going to the park and having fun outings to local museums and art exhibits and science exhibits.  But it also highlights my malfunctioning temperature controls, as there are many activities I have to pass on because I can't be out in the full sun or in temperatures higher than around 72 degrees Fahrenheit.  In such situations, my body fails to sweat, and instead my internal temperature goes higher and higher until it's a serious medical risk.  Once, after 15 minutes in a warm car whose air conditioning really couldn't keep up with the heat, my body temperature rose to 102.  You can just imagine how much higher it would go in longer time intervals, outdoors in the sun when it's over 90.  I hate limiting my family's activities because of my climate issues, but at the same time, my husband and I also don't like to always just leave me at home and have them go do those activities without me.  After all, I already spent so much time in virtual exile, hospitalized and only seeing my children a couple times a week.  We try to find the balance where they still get to do a lot of fun stuff, but sometimes also just hang with me, either at home or somewhere else with great air conditioning.

So, we still have our ups and downs.  But all things considered, I'm doing as well as can possibly be expected, actually much better than a lot of people (including doctors) thought I would.  I might not get to say I'm cancer-free, and at this point there really aren't any treatment options, but at least this cancer is letting me live, maybe for a good long while, and it's making sure I'll appreciate my life as much as possible.  This year for the first time all three of my precious children will be gone all day for school.  I can't wait to experience this milestone with them, to be here for their homework and play with flash cards and hear about their day at school and all the other wonderful things moms get to do.  Every day that I'm not missing that stuff is a victorious day.

Saturday, June 29, 2013

If Life is a Highway, I Want to Drive It

August 26, 2011.  The day the weakness first took over my legs.  I was working half days then, recovering from my first spine surgery, so I drove myself home from work after lunch, worrying about how wobbly my legs felt and how I'd had to lean on the hallway counters at work to keep from falling.  By early evening I could no longer walk, and my husband had to help me stumble and drag my feet to the car to go in for emergency MRIs.  That mid-day commute was the last time I drove a car.

Until today.

After dinner we went out to one of those do-it-yourself frozen yogurt sundae bars because we had a coupon, and after that, I started thinking.  I started thinking how hubby and I had talked about practicing driving in a big empty parking lot, but we should wait until the kids weren't with us.  I started thinking how the kids are almost never not with us.  I started thinking how confident I was in my legs, in my ability to stop on reflex, in my ability to turn my head and check behind me when in reverse.  I started thinking we should just go for it and have hubby drive to a big parking lot so I could practice even though the kids were with us.  So we did.

It.  Was.  Awesome.  I thought I would be rusty, that my weird, partially numb feet would be too heavy on the accelerator and too timid on the break.  I thought I wouldn't be able to come to the smooth stops and gentle starts I'd always prided myself on.  But instead it was like I'd never stopped driving.  It was as natural as coming home.  

I drove in circles through the parking lot, following the directional arrows as appropriate, and letting my hubby randomly command me to suddenly "STOP!" so that we would know I could react quickly.  I was in complete control of my legs and feet, and of my arms as well, and there was no throbbing or sharp pains in my back to indicate that I shouldn't continue.  I was able to fully turn to look over my shoulder as needed when changing lanes or reversing out of a parking spot.  I was ready for light town driving.

Never mind that it took us extra time to drive home because I'm not ready for freeways and took the back roads, or that half those back roads turned out to be under construction that I didn't know about (and there were no detour signs) so I had to take an even longer, further back road route to get us there.  The point is, I drove my family home from that big empty mall parking lot, and it felt amazing.  I can't wait to do it again.  And undeniably, one of the greatest benefits of doing light town driving is feeling like I have some control over my fate, like my own reactions can help keep me safe from the mistakes of other drivers out there, of whom I have been so afraid ever since my car accident last year.  Maybe now, with my own hands on the wheel, I can finally start to let go of those fears.

Note:  despite common sense dictating that I should refrain from driving until I was sure that I was ready, there have been no official restrictions applied to my driver's license, which is still current, so I believe I have not violated any laws by driving.

Monday, June 24, 2013

Let's Get Physical

My husband and I went in for our annual physicals last week.  We went together, because I need his help to get on the exam table, and he needs my brain to remember all the myriad details and issues he wants to discuss with our doctor.  It turns out, though, that together is not always the best way to have an appointment, if you want a really in-depth and detailed interaction with your physician.  Our doctor, and his nurses, tended to lose track of what they had done on whom. 

So my husband had his pulse and blood pressure checked, and I did not.  My husband - with my prompting - had a very productive discussion with our doctor about various skin conditions, treatments, and concerns that he had about his health, and assurances that he would get exactly the type of lab test I knew he needed to confirm whether his insulin levels are too high.  I got.... a PAP smear.  With a pelvic and breast exam.  I forgot to talk about how bothersome my carpal tunnel symptoms are getting to be in my right hand.  I didn't get to discuss whether there are any options I can pursue for relief from my erratic, heavy periods and the almost uncontrollable rage my PMS brings me.  I didn't even realize I hadn't had my vitals taken until after we'd left the parking lot already, and we didn't turn around and go back. 

This bit me in the ass some hours later, when the on-call physician who received my lab results called me that evening.  She was extremely concerned because my serum potassium levels were too high and wanted to know if I'd been having a racing or skipping heartbeat.   Hmmm.  Guess we should have checked my heartbeat at the office.  I reassured her that I felt fine, and she prescribed an oral medication to lower my potassium over the weekend, with instructions that I return for more blood work on Monday.

The oral medication for lowering your potassium is a chemical compound called sodium polystyrene sulfonate.  This is derived from plastic, is used in hardening cement, and tastes just like it.  It's like filling your mouth with dental cement paste, and swallowing it.  If you can swallow it.  I gagged, repeatedly, while choking down my three or four swallow dose.  It hits your stomach like a rock, and makes you uncomfortable throughout its entire journey to your colon.  Where you can only pray it will exit without ripping anything.

Thank goodness I was also prescribed Cipro antibiotic for my UTI, which happens to cause diarrhea to counter-act the constipating concrete.  (How's that for a sentence you never thought you'd have to say.)

On the second day we had the brilliant idea to contact the pharmacy and see if the powder could be mixed with something else instead of or in addition to water to help me get it down, and found that it could, so long as I received the entire prescribed dose.  So that night we mixed it with cranberry juice, and I shot it all down in three or four consecutive swallows instead of pausing to allow gagging in between each mouthful.  That still made me cry a little bit but it went considerably better than the night before. 

Come Monday morning I had to go back to the lab for more blood work.  I was hoping that would result in me not having to take the potassium-reducer any longer.  Unfortunately, those results aren't available yet.  I have to drink the concrete another night and check with the doctor in the morning.  And my INR is too high (I knew this when I saw the way the blood jumped up outta my arm after the needle was withdrawn this morning) so I have to skip my coumadin tomorrow (I already took it today).  I'm ingredient checking just about everything I eat for signs of potassium, presence of vitamin K (screws with coumadin) and levels of fat (makes me overproduce bile).  If I ever seem flaky or spaced out or clueless it might be because I have to devote an encyclopedic amount of brain memory to my medication names, their doses, side effects, schedules, and food interactions.  In addition to everything else I have to remember about my medical history.  Sigh. 

But you know what I thought the other night, while I was crying from gagging on the cement slurry?  I thought about how tons of cancer patients undergo chemotherapy and feel nauseous and awful all the time.  I thought about how they would love to have only one awful tasting pukey drug a day to endure.  And how all of us, them and me, will choke anything down that they tell us will save us because that's what you do when you want to live.  Whatever it takes.

Saturday, June 8, 2013

Get in the Game

I just discovered and started reading about another cancer fighter's journey, an esophageal cancer patient named Doug.  His situation is close to my heart because my cousin was a victim of that type of cancer.  I'm not saying that everything this man does is the right treatment for me or anyone else (because really, medicine should never be that generic, it should be uniquely tailored to each person).  Although if you're interested, you could certainly seek out a customized course from the experts Doug visited.  But in any case what he's doing is working for him, which is great.   

Looking beyond the supplements and the routines, he says a lot about attitude that I do totally agree with and have felt from the very beginning of my cancer diagnosis:  that we, as cancer patients, have to "get in the game" and be participants in our own treatment.  We can't be passive about this.  He writes, "Your body produces 500,000 [this figure is reportedly supposed to read 500 million] new cells per day. Supporting this production will allow you to have billions more good ones in a matter of days to fight the millions of bad ones. Unless the bad cells are led by Gerard Butler, this small of an army doesn’t stand a chance. You will feel empowered and purposeful, I promise you."  And it's absolutely true:  when you take an active role in your treatment, do the research, ask the questions, discuss your plan and then work on it every day, you stop feeling helpless and your hope gives you power.

Therapy Shout Out

I don't know if any of my physical/occupational therapists are still reading this blog, but if they are, this post is for them.  Others might find it interesting, in that polite, oh-that's-nice kind of way, but only PTs and OTs  and other patients know that this stuff is bigger in some ways than hundreds of feet walking and going up stairs.

When I wash my hair in the kitchen, I stand up and lean over the sink for the wetting/rinsing.  I do sit in a chair for the scrubbing part, though.  I can do all the lathering and rinsing myself, but sometimes I let hubby help me so it hurts less or goes faster.

When I walk to the wheelchair, parked at the front door for an outing, I don't use canes.  When I walk to the car door and get in, I don't use canes unless the parking lot is uneven.  I don't sit and turn into the car anymore.  I stand on my right leg while I step my left foot into the car and then sit down and pull my right foot up into the car.

When I get dressed, I put on my pants standing up.  I stand on one foot to put the other one in the pants.  I have a chair beside me that I can grab for balance while doing this, but I usually don't need to grab it.  I don't use a reacher or a sock tool.  I raise one foot and rest it on my other knee to put my socks and shoes on. 

Most of the time I don't even weep for joy when I do these common tasks anymore.  But sometimes I do.  I never forget the hours I spent with patient, caring women and men who waited for my frustrated tears to subside when my brain told my legs and feet to do these things but nothing happened, but pushed me to keep trying, and who shared my victory elation back when using a sock tool or a leg lifter to do these tasks was still an amazing feat.  These triumphs in personal independence are yours to share with me.  Thank you.

I think it might be time to make a few visits to my previous therapists and show them exactly how far they helped me come.  I'll talk to the hubby about it.

It's almost time for a six month check-up with my oncologist.  I am anxious to see him because my tumors have been worrying me lately.  When the pain in my back throbs with my heartbeat, I am afraid because I know that my tumor is a mess of blood vessel tissue gone awry, and I hope it's not growing.  At night I often have nightmares about people shoving me hard in the back or leaning heavily into the tumor area with their forearms or elbows, dreams that I think are spawned by real pain I'm feeling in my sleep.  I've come so very, very far, and I'm as terrified as ever of losing it again. 

Sunday, May 12, 2013

Silver Linings

I know this isn't my first post about silver linings, but I just got done watching the movie Silver Linings Playbook with my husband, and there are a few things that need to be said.

When you watch the interviews and extras after the movie, it becomes clear that part of the reason the movie was so powerful and connectingly real is because the people who made the film had a driving need to tell an honest, raw story about struggling with mental illness.  It had to have the gritty truth about the yelling and the delusions and the heartache of family members who just don't know how to help, but it also had to have the hope too.  The promise that with hard work and perseverance we can stop hiding the truth of our weakness from ourselves and start working on getting better.  

It was a concept that resonated with me powerfully because I have lived that struggle.  And make no mistake, it is a war.  A war which we can't even begin to start fighting until we have the strength to even realize we're on a battlefield, and that the stakes can be life or death serious.  So much of mental illness begins with denial and rationalization and while we have that, we can't have healing.  The filmmakers and Mr. Kennedy and Mehmet Oz pointed out that until we have dialog about mental illness we will never have acceptance, understanding, and fair treatment.  Too many people suffer in shame, feeling alone, when what they need most to survive and overcome is to connect with someone.  To make that connection, we have to admit that we need it, and that's very hard to do.  It starts with doing away with secrets and being honest.

I never finished college.  After a stellar high school career of extra curricular activities, a 4.14 GPA and Advanced Placement courses under my belt, I dropped out of college in my sophomore year with a failing GPA, a lost scholarship, and a huge weight of self disappointment.  My husband likes to explain, if people ask, that I dropped out of school when I got sick with mono, and that's the kinder way to tell it, but it's not the honest way.  The truth is I was already plummeting over that cliff with my foot on the gas pedal, and getting mono was just the last thing, like taking off of my seat belt on the way down.  Getting knocked on my ass by an illness that sucked the strength out of me allowed me to give in and acknowledge that I was overwhelmed by depression and didn't know how to get back up again.

I came home from college after reaching out to a suicide hotline in my dorm room all alone.  I didn't want to kill myself, I told them, and that was the truth, but I was having visions of myself dying in a variety of ways, throughout the day, every day, and I was afraid.  How many times can you watch a movie in your head where you die, either by your own hand or by some tragic accident, before you someday discover you're actually living out the movie?  Er, dying out the movie I guess.  Either way I didn't want to wait and find out.   I needed help.  I was given a choice between having myself committed or trusting myself to stay "on the outside" but get the treatment I needed.  I chose to talk to my parents and go home for treatment.

In 28 Days, Sandra Bullock's character is made to wear a sign that says something like, "Confront me if I do not ask for help."  Boy, there's another movie that I could identify with.  Asking for help is so damned hard, and I needed it badly.  But I took the first step, admitting it (how could I not, with my world falling apart around me?), and that was the beginning of getting better.  Like anything else I've faced, I learned about it in order to fight it.  So I came to realize that I had been depressed a lot longer than just those couple of college years.  All those growing up years in family counseling had not just been for my other family members, because I was not the only happy exception to the dysfunction that I had painted myself to be in my head.  (I don't need counseling because I'm so happy and successful!  I mean come on, have you seen my report card?  Plus I smile a lot and have plenty of friends, so I'm fine, but I'll sit here and listen if it helps the others.)  Right.  We were in there because we all needed it.

I did even more therapy when I got home from giving up on school.  Group therapy, and individual therapy.  And I took the medications that made you feel listless and sleepy and killed your sex drive but also helped keep you from snapping at people over the tiniest (nonexistent) provocations and elevated your brain chemicals enough to try to take control of your thoughts and stop thinking the ones about death.  I wrote a lot, and I listened to a lot of music, and I studied the patterns that revealed where my depression had been hiding and covering itself up and I learned how to change them.

When I was ready, I stopped the therapy.  I stopped the medications.  And I moved on.  I had embarked on a new adventure with a new love, in a new town, with a new job.  I would say I am a successfully recovered  mental illness patient, not because I have always been happy since then, because I have certainly had down times.  But I have recognized the early warning signs, and turned it around every time it tried to come back.  And I know now that it doesn't have to be a secret I don't like to talk about. 

I talked to my husband tonight about how personally I related to Silver Linings Playbook.  This was not news to him, of course.  I may not have told everyone else my mental history, but I have no secrets from him.  Hell, he was the biggest strand in the lifeline that pulled me up from the bottom of that cliff.  He has a way of spinning things so they don't get too darkly serious, so he jokingly asked if I related to the movie because I'd taken dance classes.  I told him no, not dancing, but there was this one time I took a modeling class with a friend, where we strutted around on a wooden floor in a dance studio, beside a mirrored wall, wearing high heels.  It was exactly the kind of risque, adventurous situation my friend was so good at getting me into, where I was terrified and thrilled all at the same time.  Twenty years have gone by and I have never told her this, but I will say it now:  those adventures we had, where I had to come out of my shell, even if only for an hour or two, I have carried with me my entire life, and I remember them when I need the courage to be something more than just a wallflower, when I need to use my voice or stand out.  Like now, writing this.  Thanks S.G.G.  I love you.

This turned out to be more than just a few things about silver linings, but the point is this:  mental illness should not be something that we hide from or cover up.  And it is definitely something that can be beaten.  Like everything else in this blog, I hope people read this and realize they aren't alone, and see the beautiful possibilities they have.  Whatever it is you face, you have within you so much potential, so much promise, if you just grab it and refuse to let go.  Your silver linings are waiting.

Saturday, May 11, 2013

Still Got It

Today, before the crowds that usually come with Mother's Day, we went out to breakfast at a restaurant we've been meaning to try for a while.  I have to very carefully watch what I eat ever since I had my gallbladder out.  I have a tendency to get very, very ill if I eat too much of foods too rich in fat.  So I had a half-size portion of biscuits and gravy with a couple of eggs and breakfast potatoes, and didn't finish it.  But it was delicious.  The kids got nice and hyper off their choices of french toast or chocolate chip pancakes, and today is a beautiful cool, sunny day, so I decided we should all go to the park after breakfast and work off a bit of those yummy calories.  And by work, I mean play.

We brought my manual wheelchair and my canes into the park.  I knew I wanted to take advantage of the wide open flat spaces to do a little bit of walking.  But first I let breakfast settle a bit while I sat in the shade to watch the kids, wrapped in a warm fleece blanket.  Ever since the nerve loss in my skin I get cold or hot very easily, so I was quite chilly in the shade.  I'd go sit in the sun to warm up but my diabetes medication makes me very sensitive to the sun, and burn very quickly.  Always so many complications to manage!  But we manage them just fine.

My hubby and I watched the kids play and climb on the playground equipment for a while, and then watched them run around through the cute little buildings of the miniature town inside the park.  Then I felt like it was time to walk.  When I'm trapped in the house or only have the carport to move around in, I can only walk short distances, a few feet at a time.  So today at the park I wanted to find out if I still had what it takes to put some serious distance on these legs.  For safety, I had my husband walk behind me with the wheelchair while I walked with my canes, in case I needed to quickly sit down to prevent a knee from buckling.  

It felt great to stretch my legs and walk.  I'm so tired of being cooped up in my corner of the living room, with hardly anywhere to move because the furniture I need to have near my bed i.e. commode effectively traps me at the side of my bed with no easy, safe access to the other parts of the living room.  So today I wanted to walk far.  I walked a long section of sidewalk, turned right, walked up a very slight upward incline, turned around, walked back down, and walked the whole long sidewalk back to where we started, before I finally sat down.  As we got to the end I was quite tired, and breathing slightly heavier than normal, but thrilled because I knew I had walked pretty far.  

Hubby congratulated me on a good walk and I laughed a little and said, "Now walk it again and count, please!"  So while I rested in the wheelchair and caught my breath, he paced the path we had just taken, and came back to me.

"Guess!" he said, grinning.  

"Hmmm... 150?"  He shook his head with his thumb up in the air, urging me to guess higher.  My eyebrows perked up.  "200?"  Again his thumb waggled upward.  "250??" I asked, fairly surprised.  

His thumb jerked up again.  I couldn't believe it.  "Whoa... a lot more, or a little more?"

His grin got bigger.  "A bit more."

"275?" I asked, not really expecting it to be that much.

"Close.  280 feet, babe.  Way to go!"

If I wasn't sitting down you could have knocked me over.  I don't recall walking that far without stopping to rest even when I was in therapy several times a week.  That was the kind of number I saw when you added up several shorter walking stints with rests in between them.  I had been so afraid that being penned in and not going to therapy for regular exercise to push my muscles to their limits would have resulted in a huge backslide in my capabilities.  But clearly it has not.  What few exercises and stretches I manage at my beside are obviously helping maintain my legs.  

A year ago this month I took my first six steps in the parallel bars at the rehab hospital.  They were the first steps I had taken in five months of recovering from what cancer did to my spinal cord.   This weekend we are celebrating that I am home with my children, that I can walk at the park with them, that I am so lucky to love and hug them every day.  It is a happy Mother's Day, indeed.

Thursday, May 9, 2013

Guest Author: Caring For a Mesothelioma Survivor

Please welcome guest author Cameron Von St. James, who joins us today with this uplifting article about his role as a caregiver, his wife's triumph over mesothelioma, and making the most of life's challenges.


My Experience in Being a Caregiver Changed My Life

On November 21st of 2005, my wife Heather and I were given the shock of our lives when our doctor told us that Heather had malignant pleural mesothelioma.  She had not been feeling well for a while and we had just assumed it was because she was recovering from having our daughter, Lily just a few months earlier.  But when things did not improve, that is when we went to the doctor and were given this frightening news.  When we were told about the mesothelioma, I realized how serious this type of cancer was and I immediately adopted the role as Heather’s caregiver.

Through my experience of being a caregiver, I learned I was able to carry another person's burdens.  A caregiver must be strong, efficient, and capable, while also putting his own feelings and worries to the side.  I had a few times where everything felt like chaos and I gave into worry and just collapsed and cried.  I quickly pulled myself together because Heather had enough problems to worry about without me breaking down on her.  We were so blessed to have so many great family members and members of the community who offered wonderful support to us during the time Heather was fighting for her life.

Of the three choices for treatment given to us by our doctor, we chose to take Heather to see an experienced medical professional in Boston who worked regularly with mesothelioma patients.  When our doctor explained mesothelioma to us, I could see the terror and concern in Heather’s eyes.  I told the doctor, “Get us to Boston!”  We did not have any time to waste in getting Heather started on her rounds of treatment to defeat mesothelioma.

Several years have passed since we learned of Heather's mesothelioma diagnosis. I will never forget how difficult it was to make it through those years.  Heather is now in full remission and has remained cancer free to this day.  I owe so much to the many people who stepped up to help us out in our time of need.

If I had to give one piece of advice to other caregivers in a similar position, it would be to accept every offer of help that comes your way, and don’t be too proud or afraid to ask for it.  This will likely be the most difficult challenge you’ll ever face, so there is no reason for you to face it alone.  Use the resources available to you and do your best to stay strong.

Two years later, I was able to go back to school to study Information Technology.  My time as a caregiver gave me the strength and the courage to pursue this dream.  I graduated with honors and even gave the graduation speech.  I told my fellow graduates about all the lessons I had learned while caring for my wife.  I told them what my wife had showed me – that within each of us is an incredible strength that can allow us to accomplish unbelievable things.  I hope that by sharing our story, we can help inspire others in their own battles with cancer today. 

Thank you for sharing your story with us, Cameron.  We fervently hope that you and your family continue to thrive and inspire cancer warriors for many years to come!   

You can read more of their journey at their blogs:  Cameron and Heather

Tuesday, May 7, 2013

Big, and Strong

I just read Why I Don't Diet - An Ode to My Father by Tiffany at More Cabaret.  She describes the destructive pursuit of thinness that diminished her father from the almost legendary giant he once was.  I think about this a lot.  I, too, have allowed myself to be taught that my form is not healthy, not small enough, takes up too much space.  And it is true that some aspects of my body were unhealthy, such as my high triglycerides, but my blood pressure has always been good and I had always been strong.  My health problems were not universally size related and would not all be fixed by simply getting smaller.

Despite understanding that I was not automatically unhealthy because of my size, I still rejected it as an acceptable way to look.  I loved being tall and had no wish to be petite, but I wished to be lean, sinuous, even willowy.  Without understanding what it would have cost, I would have traded my strength for slender elegance.  Luckily, I wasn't offered that deal.  I am far from elegant, but that's okay with me now.

I am still learning, through my husband's eyes, to recognize that this largeness I occupy can be beautiful and attractive.  It has always been such a struggle to accept that someone can find me sexy, without adding that little "because he already loves me" at the end of the thought.  But I work on it, because I don't want my daughters to think I'm not beautiful, to think that I myself don't think I'm beautiful.  

Perhaps what I've gone through these past couple of years have made this a little easier for me.  Of course there were times I bitterly complained that if I were only smaller, it wouldn't take so much help to move me, so much equipment to help me rehabilitate my body.  There's nothing like being lifted in a crane to point out to you that no two nurses, male or female, can pick you up.  

But with my size came my strength.  Every once in a while I realize, somewhat startled, that if I was not the size I was at the beginning of this cancer/spinal cord injury mess, what would be left of me now?  My legs wasted considerably when I was in the hospital, it was amazing how fast the muscle fled from beneath my skin.  My thighs were thinner, my calves much thinner.  And yet they didn't look any more appealing to me.  Without my strength, my muscles, they didn't look sexier because they were skinny.  They looked puny, old, and alien, like they didn't belong to my great big body that had always been strong.  

The tale of Tiffany's father is a sad one, but the fact that his daughter has not embraced his tragic thinking is an inspiring, reaffirming high note in this story.  I want to reject the notion that I should be less as confidently as she does.

Wednesday, May 1, 2013

Very Important Lessons

Today's Very Important Lessons:

1.  Not everything should be blogged.  Written, sure, but not shared.  Make every effort to recognize this before you click Publish.  I have, which is why you are reading this post, and not the one I wrote thirty minutes ago.

2.  Pepto Bismol is not safe to take with Warfarin.  It is a Class 2 interaction.  Bad ju-ju.  Me:  "Will it raise or lower my INR?"  Pharmacist:  "It could make you bleed a lot, a lot more easily."  Definite no-no.  After checking for interactions, pharmacy recommended I take OTC Zantac for my heartburn.

3.  Zantac is not Xanax.  Make very certain your husband understands this before he goes to the store for you.  Luckily for him, one is readily available on store shelves, and one is not.

4.  Yes, it absolutely CAN and WILL go from Sunny 86F to Thunderstorm 54F to Snow 27F in less than a 30hr period.   




Wednesday, April 24, 2013

Notches on the Wall

There is a tendency, when people are ill or going through some kind of struggle, for everyone to become more protective of them.  Our loved ones want to save us from pain, or from great effort, or from worry, and try to create a bubble, a buffer between us and the ugly things in life.

This is both unnecessary and harmful.  The fact that we are facing troubles of our own doesn't make us immune to the worries and trials of others.  It's not just another burden to endure.  Suffering is a universal reality, a cosmic price tag for the pleasure of dwelling in a living shell that is aware of its surroundings and has keen physical and emotional perceptions.  That we respond to the suffering of others is what defines our souls, and separates us from the rocks and the trees and the plankton, which are made up of almost entirely the same molecules as us. 

Sharing the difficulties of others is not only what makes us human, but it makes us stronger.  It takes us outside of ourselves, diverts the focus from our own issues and reminds us that we are not alone, that other people struggle beside us on their own difficult climb to overcome whatever faces them.  That when we pull together, everything that all of us are dealing with gets a little easier to handle.   None of us is without tribulation; we are all etching our notches on the wall to mark the passage through difficulty of one kind or another. 

And sharing in the bad news and problems of others helps us feel normal again.  It is not normal to live in a vacuum, devoid of all negativity.  It's not normal to have nothing but hope and optimism, all day, every day.  Without their opposites these things have no real meaning anymore.  In order to have a really great day, you have to know what a bad day was.  My husband even says that he enjoys when people still come to him for help, because helping people is what's normal for him, and he doesn't like when they don't ask him for help just because they think he's already doing so much for me at home that he shouldn't be bothered to help anyone else.  No matter how wrapped up we are in each other and our own crisis, we can always sympathize with someone else, and want to help them, too.

We know you don't think we're weak, that we can't handle the truth.  You just want to protect us, you wish we didn't have to know, that all the bad things could be kept away.  You can wish this, but you must not make it be true.  We are not depending on you for protection.  We need you to shoulder the load with us, not for us.  Sheltered inaction leads to apathy and atrophy, the twin icons of emotional and physical weakness.  To be strong, we must know and do.  Honor us with the truth, and we will carry on, as all of us must do.

Saturday, April 20, 2013

The Club

Have you ever joined a group that nobody wants to be in?  Usually it's involuntary, your joining, because you get assigned by some unwanted label, like "unemployed" or "single" or things like that.  That's what a cancer diagnosis does for you.  It makes you a card-carrying member of the club no one wants to join.  And what a strange club it is.

If the Cancer Club had a balloon parade like Macy's, breast cancer would be the enormous pink ribbon balloon, and every other kind of cancer would be represented by the people walking below it holding ropes, waving at the crowd in vain because no one really sees them, they are just holding onto the breast cancer strings.  It's hard not to feel that way about it when breast cancer awareness is such a powerful media machine, and everyone's talking about it and funding it and walking for it and running for it and companies are profiting off the lapel pins and the bumper stickers and the key chains and the rubber bracelets.  

I respect the walkers and the runners and the survivors.  They are real people with real cancer affecting their lives or their relatives and they need research and early detection and cures.  But I don't have a lot of patience for the people on the phone calling to ask me for money for breast cancer research.  I'm sorry, I tell them, but I can't give you money for breast cancer research.  I have my own cancer to fight, but no one's ever heard of it because it's not on the news and there's no fundraiser marathon and not really much research and this is usually about the time when the polite telemarketer hopes I'm feeling well and wishes me luck with my cancer fight and ends the call.  I feel kind of bad about ranting to these folks, because it's not their job to provide me with a telethon for my kind of cancer and cause copious research to manifest on my behalf, but I wish they could.

Sometimes I browse cancer blogs and articles, searching for someone with the same cancer as me, but I don't find anyone.  I want to find that camaraderie, like the sisterhood of the breast cancer warriors; I'm searching for the support group full of wheelchairs where the biggest accomplishment of the night is when someone is able to STAND UP for their "Hi, my name is _____ and I have spine cancer" introduction.  I find touching and inspiring stories, to be sure, but rarely anything that makes me feel less alone with this rare disease.  I don't even have the same lingo as my fellow club members.  I have not been assigned a Stage.  I don't have any real prognosis, not the slightest idea how long I can expect to live with this obscure tumor.  It could be decades.  It could be less than five years.  It might never metastasize, or it might spread.  It's anyone's guess. At what point do you get to call yourself a survivor, that term that everyone associates with "winning" the fight against cancer, if you're going to have your cancer for the rest of your life?  It's not going anywhere.  We're just watching it... indefinitely.

Don't get me wrong, I'm not ungrateful for the position that I'm in.  I understand that not knowing my prognosis is better than having a short one.  I don't envy the warriors suffering through chemo treatments.  I'm thankful not to be enduring that along with everything else.  I know that I'm not the only person with a rare illness that hasn't been researched enough, that there are others out there in the same boat as me wondering when they're finally gonna get a lifeline tossed their way.  And I usually focus on the positives, on the hope, on the things I can do instead of the things I can't.  But it would be dishonest not to show that there's this other side of things as well.  That sometimes I still pout, and like a rebellious teenager sent to her room I rage that this is unfair, and ask why me, and melodramatically lament that no one understands me. 

I'm allowed to have these moments, it says so on my membership card.

Thursday, April 18, 2013

Old Demons

Nothing like a many-legged bug slowly circling you on your living room walls to remind you how disabled you are.  Never mind that bugs like that gave you panic attacks even when you could run to a different room to hide or grab a wad of paper towels and smash it to death yourself.  It's so much more terrifying when it crawls over the ceiling above your bed and you know there's nothing you can do about it.  To have your daughters become increasingly frightened by it because you're frightened but the panic is too strong for you to keep them from seeing it.  To have to call your husband to come back home from errands to save you from this terror because you can't take care of yourself.

When the panic fades, all you have left is shamed relief and tears.

Tuesday, April 9, 2013

Fight Songs and Win Songs

Music has always affected me profoundly, touched my very soul; it can make me shiver, can make me cry, can make me stronger.  I owe a debt of gratitude to the musicians and composers who have contributed so much to my life, most especially to my recovery and continuing survival in this cancer/disability battle.

To Bear McCreary, whose "Kara Remembers" is my courage hymn, that I listen to every time I head to the hospital for another MRI, where my fear demons await:  thank you.

To John Murphy, whose adaptation of "Adagio in D Minor" for the movie Sunshine is my personal physical therapy anthem, the song that expresses every ounce of struggle and triumph in my journey from wheelchair to walking:  thank you.

To John Mock, whose "Stone Table Dance" comforts and soothes me on the way home from difficult doctor appointments:  thank you.

To AWOLNATION, whose "Sail" has become not only my rock mantra for feeling strong and capable, but has also become the favorite headbanger tune for my three children:  thank you.  (Yes, they do scream "SAIL!" in relatively good tone and yes, they do get the timing right!)

To Christina Grimmie, whose cover of "Safe and Sound" gives me chills and has become the song my five year old daughters and I most love to sing together:  thank you.

There could be hundreds more to add to this list, but none of us has that much time, and my daughters are asking me to stop writing and sing with them.  If you do have a minute though, tell me what music motivates or touches you.

Monday, April 8, 2013

Nerve Problems

I used to have really, really ticklish feet.  My husband has perhaps never been so delighted as the day my endocrinologist told him that yes, tickling was a good way to check sensation in my feet, as long as while he was tickling them he also checked for sores.  (This is a reality of life with diabetes - you may not realize when your feet begin to get numb and sores go unhealed unless you check often.)  For a while, the damage in my spine caused my feet to stop being ticklish, because I could barely tell they were being touched at all.  What a tragedy for my dear husband!

But with much of my nerve damage recovering over the past year, I once again have ticklish feet.  (Hooray, he says!)  This doesn't mean that everything is hunky dory, though.  There are still some interesting misfires in my nervous system.  For example:

When my feet are massaged with lotion, the stimulation causes muscle spasms in my face, especially in the area of my forehead right above my eyebrows and around my eye sockets including upper cheeks.

While sitting in a partially reclined but mostly upright position, with my right hand relaxed at my side and propped up on a pillow, I will often experience unbearable nerve pain or itchiness or both radiating from deep inside my right breast and culminating with terrible aching in my right nipple.  This feels something like how I imagine wearing a nipple clamp might feel.  (No, I don't actually know.  Yet.  Maybe.  Probably not ever.)

While sitting upright with good straight posture, I experience itchiness in the parts of  my back that are covered in scar tissue from the spine surgeries and there is no relieving it with scratching, because this skin, while apparently capable of sending false itch signals to my brain, is not capable of perceiving touch i.e. scratching.  In fact it might be that the scar tissue is not sending the itch signals at all, it may be that nearby nerves are sending pain or pressure signals to my brain that are being incorrectly translated and categorized as itchiness in my scar area.  It's so maddening it can make me cry, and generally the only cure is laying down to relieve the downward compressing pressure within my spine.

My feet, especially my toes, and sometimes my lower calves, continue to be hypersensitive to touch.  Sometimes I can stand for them to be gently massaged or lightly touched.  Other times the lightest bump from the hand of someone walking past the foot of my bed is excruciating, like dropping a hammer on my bare toes.  

Not exactly as much fun as a barrel of monkeys, but at least these nerve problems don't throw poop and banana peels.  I mean, at the end of the day, having nerve problems at least means that I have nerves which feel something, and I'll take that any day.