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.