So Long, and Thanks For All the Music

On Sunday, my husband's grandmother slipped peacefully from this life into the next.  She was a talented, fun-loving and kind-hearted woman, with a bit of sassiness to her now and then.  Along with her musically gifted daughter (my mother-in-law) she taught me to play the auto-harp, although I never gave those strings the vibrant life that she did.  I think I remember most fondly her crinkly-eyed smile and easy laughter, and the attentive, active way she enjoyed listening to and performing music.  Some people seem to kind of space out when they enjoy music, but she was always right there with you, in the moment, encouraging you to express yourself or being fully engaged in her own expression. 

Because she was the type of lady who didn't want everyone to make a big fuss over her, she had decided to have a simple, small graveside service for her family's farewells.  She didn't want to have a big traffic-stopping procession of cars traveling through town from a church to a cemetery.  Unfortunately, this is a situation in which Spinal Cord Injury (SCI) rears its big ugly head.  The forecast for her Thursday morning service indicates an excessive heat warning, temperatures are likely to be in the nineties by the time her mourners assemble, and while most people will find that swelteringly hot and uncomfortable, for me it would not be a discomfort, it would be a medical crisis.  SCI means I can't properly regulate my body temperature; my blood vessels don't dilate properly, my body doesn't sweat the way it should, all the natural cooling mechanisms, and even the sensors that would sound the alarm bells in my brain, aren't working.  Within minutes I would start to get a headache, feel sick and thirsty, get confused, and soon after take very ill.  By the time my brain got the idea that I might be too hot, however, it would be well into the realm of heat stroke, and it can take hours to cool the body back down, outside of emergency measures like ice baths.  Everything I read says it's not safe for me to try to attend the service, and with all that we've been through this year, I've got to play it safe.  So my husband, who admittedly faces any kind adversity or sadness more stoically when I'm by his side, will have to stand tall and strong for his mother without me, and face his own grief, and that of his children, without my presence to comfort him.  Oh, I'll be close by, probably, in some air conditioned building perhaps, or waiting at home for his return, but when that moment to say goodbye to her comes, I won't be there holding his hand.  It breaks my heart.  He's been here for me through the toughest of times, and when he needs me, I'll be hiding from the sun and the heat.  

But...maybe Grandma has one last thing to teach us.  My husband's grandfather was the love of her life, and preceded her in death by about eight years.  Yet somehow she managed to soldier on, to find joy, to cherish her family, to laugh and sing and play, for years after his loss left that gaping hole in her life.  If she could do that, maybe we all can.  Maybe we can comfort each other even when we're apart, accept that sometimes, we'll have sorrow, and then embrace life with gratitude anyway.  I don't have to faint at her graveside to honor that spirit, nor to say my loving bon voyage to her.  So long, Grandma, and thanks for all the music.

Still Laughing

I was in tears from the pain by the time I got done with therapy, used the commode, and got myself back into bed yesterday.  I cried again when my husband massaged my tightening ankles and the backs of my lower calves trying to help save me from losing flexibility and sensation in my ankle joints, because the skin nerves are so hyper-sensitive that while the muscles and tendons desperately need to be worked over, the skin above them feels like it's being split open and peeled off with every massaging stroke.  After I had calmed down and recovered from the massage a little bit, I cried one more time, sitting in my bed watching my ankles flex and draw out some shapely muscles in my calves and thighs, because I can still remember sitting in a hospital bed six months ago when my legs couldn't do that, when I strained and strained to pull my toes back and got nothing more than a spastic wiggle from a single toe.  I remembered how flaccid and repulsive my unresponsive legs appeared to me back then, and wept over how muscular and toned they are by comparison now.  Still plenty more muscle building to do, they don't exactly look normal yet, but so much better than they were, and for that improvement, that seemed almost unreachable back then, I cried for joy.

I still find things to laugh at, though.  There's always humor lurking if you're looking for it.  Yesterday's levity came from a bottle of hand sanitizer.  At home our bottle likes to enthusiastically splat several inches further out than the expectant hand is prepared for, and the bottle my therapist grabbed for me at the end of our session yesterday is apparently no different.  While I held one palm out to her and grasped my cup of half-full water (not half-empty) in my other hand, she went to squirt me with some gel and it came flying out of the bottle, dropping several blobs on my clothes, and a nice big plopping splash of it in my water.  We both had a good laugh, and she judiciously offered to get me a new cup of water.  So there I was in a blue dress, frantically trying to wipe up slimy wet messy splats off the front of it, and I couldn't help thinking, just like poor Ms. Lewinsky!  But with much less disgust, and a lot more laughing.

Breaking the Silence

It's been about two weeks since the car accident.  I have kept pretty quiet during this time, evaluating my situation and seeking out legal advice.  There have been too many effects from this accident, and too significant, for me to ignore.  I had hoped that by now the effects would have diminished, or cleared up completely, but they haven't.  So I have retained legal counsel to represent my best interests in settling my personal injury claims against the insurance of and the driver who hit me.  

How do you distinguish the way I was before the accident from the way I am now, you might wonder?  It's easy to dismiss the impact if all you see is the general picture.  I was in a wheelchair when it happened, I still require a wheelchair now.  I could walk with a walker, I still can now.  I've continued to make important progress in physical therapy.  So everything's fine, right?

Wrong.  You see, that's just not enough detail to understand what's really been happening.  The number one impact of the accident has been pain.  So much pain.  But I was in pain before, you might argue.  That would be true.  But fortunately the medical profession has decided it's useful to measure pain on a scale, and so we have a handy tool for identifying changes in pain levels.  Before the accident my daily, average pain was at a level of 2-3.  At that level I choose to abstain from narcotic pain medicines and could function optimally in physical therapy.  After the accident, my daily average pain level has not gone below 4 and is most often between 5 and 6.  That's twice as bad.  At that level I need narcotic pain medicine on a daily basis and my ability to achieve goals in physical therapy is dramatically impacted.  In addition, my power chair is still in the repair shop, and without it I'm stuck in a manual wheelchair that doesn't recline at all, and the backrest doesn't come all the way up my back, so it causes me pain the whole time I'm sitting in it and restricts my ability to get out of the house or spend time out of my bed.  In a power chair I can get in and out of the house all by myself; in a manual chair I have to have someone to help leverage the front caster wheels over my front door threshold, requiring a second person to stand behind me and pop a wheelie as I go through the door.

The impact on my therapy performance is a significant problem when you consider that medical insurance will only provide a specific number of physical therapy visits per calendar year.  I had objectives that we were hoping to accomplish before my visits ran out and now, with my performance diminished by pain and the resulting decrease in stamina, some objectives will be out of reach unless I can somehow extend my access to physical therapy.  These aren't just generalizations, either, I'm not just speculating that I'm 'probably' not doing as well as I would have been without the extra pain.  There are measurable differences in my performance at therapy.  Before the accident I could walk with my walker for 168ft without having to stop and sit down to rest, and I was adding anywhere from 20-50ft per week to my previous records to reach that point.  A couple of days after the accident when I returned to therapy the furthest I could push had dropped to 105ft.  Two weeks after the accident, through tremendous effort and a lot of pain, I've still only regained up to 125ft at one time, way behind where I was before the accident even all this time later, and only gaining about ten feet per week.

Of course, there are still highlights.  I never sit back and take it easy, it's not in my nature, and being hurt in a car accident does not lessen my burning desire to get back to a more normal, active life.  So of course I've continued to make progress in therapy, including pushing beyond a handful of practice stairs until I can now climb a full 12-step flight of stairs, rest at the top, and then come back down.  It's a tremendous step forward, but it comes at a great price; accomplishing those stairs raises my pain level to 6 every time, and it takes at least a day afterward to recover from the muscle fatigue in my legs and get my pain back down to a 4 and 5.  I continue to extend the total distance I can walk within a therapy session, which is good, but because of my diminished ability, this is done in shorter segments with longer rests in between; instead of walking 440ft in one or two really long walks, I have just now accomplished walking 440ft in four shorter walks.  

I have an altered sense of numbness in my right foot.  Due to the nature of my spinal cord injury it is very difficult for me to assess if this is a worsening of sensation in that foot or an improvement in sensation in the left foot; I can only tell that they no longer feel the same and one doesn't work as well as the other.  That and other nerve-related symptoms will be discussed with my neurosurgeon when I see him on Monday, and I think it's very possible that he will recommend MRI to evaluate whether the accident has caused any changes in swelling or affected the tumors at all.

Lastly, there is an emotional component to this accident, for which I was not prepared.  I knew I would likely be in pain from it, although I thought the pain would go back to 'normal' by now.  I knew there could possibly be swelling or other nerve damage that might cause problems, and mentally prepared myself for those issues.  But I didn't realize that I would be terrified every time I get in the car from now on, flinching from every minor swerve, gripping my wheelchair arms until my hands turn white and feel numb while frantically watching the vehicles on all sides of me and hoping none of them makes any stupid mistakes.  I didn't know this fear would compel me to stay home more, to pass up on outings I might otherwise have considered, because 'out there' I'm so much more vulnerable than 'in here' at home.  I didn't know I would have nightmares in which I relive the accident, and wake up sweating and afraid.

So yes, I've been down, and I've been kicked while I'm down, but I'm still kicking back, and I'm not going to sit here and let someone ruin everything I've worked for.  I've discussed this blog with my attorney, and with the understanding that nothing I say here is any different from what my medical records will show, have been advised that I can keep writing.  No more silence.

T-boned. Seriously?

Today on my way to physical therapy, the transport van I was riding in was t-boned by a brainless idiot who apparently failed to notice our enormous white vehicle's presence on this sunny day, on a street with no trees or other visual obstructions.  We were traveling between 30-40mph and were knocked completely out of the lane we tried to swerve into in our attempt to avoid the menace blindly plowing into the lane we had previously occupied.  The impact, which occurred on my right side, destroyed the double doors on the side through which I enter and exit the vehicle, broke some kind of brackets on my power chair, smashed out the glass on my left (coating me in broken shards and tiny flakes), bent the headrest, and gave me seat belt burns across my throat because my body slid downward and forward until the shoulder belt arrested my motion at the neck.   I got to see them use the jaws of life to open up the side of the van, where luckily the wheelchair lift ramp still functioned so I could get out of the vehicle.

Setting aside how mind-boggling it is that anyone could manage not to see us and drive straight into the side of our vehicle, I'd just like to ask, WHAT THE CRAP?!  Why on earth did this happen??  How could it be that every time things start to go right something else goes wrong??   Tomorrow my husband will have to take my power chair down to the supplier and hand it over for repairs, which, being funded by automobile insurance, will take who knows how long to sort out.  I'll be stuck back in my manual chair, which is not nearly as comfortable for multiple-hour use and also involves me or my caregiver expending tremendous energy in propelling me around.  I had x-rays done to make sure my spinal fusion rods and pins were holding together properly, and they looked okay, but there's no way to tell if muscle and or nerve damage in my back may yet cause swelling or weakness or other problems that hinder my recovery. 

The friction burns on my throat are starting to blister and ooze.  Time to call the home health nurse.

Looks like I'll be spending the evening wearing a gauze scarf.  And maybe take a hydrocodone.  Say yay.

We Did It!

Life keeps throwing us curve balls, and we keep hitting them outta the park.  When we got home from the oncology appointment today I literally felt like singing that silly little cartoon song.

First, when we arrived at the building, we tried to park in the garage instead of the lot in front of the main entrance.  This, we thought, would be more out of the way considering it takes 15-20 minutes to get me into and out of the car (mostly wheelchair loading time).  We were alarmed to discover that the brackets that hold our ramp and wheelchair onto the trailer hitch on the back of the car scrape the ground on the steep ramps of the parking garage.  We exited that nightmare as slowly and carefully as we could, with me cringing every time I heard the sound of metal grating on pavement.  

Next we drove back to the main entrance, and determined there was no other option than to basically block one section of the narrow horseshoe driveway in front of the building while we got me unloaded.  Only, when my husband tried to unload the wheelchair, the bolt holding the clamp that keeps the power controls and steering joystick attached to the armrest had come apart, and the power controls were just dangling by their cord.  Hubby swore under his breath, picked up all the little bolt and washer and lever type pieces he could see, and somehow managed to drive the thing down the ramp and bring it around next to the car so I could get in.  He had to hold the power console while I got out and sat in the chair, then I held it in my lap and struggled to steer myself inside while he packed up the ramp, and carried in my walker for me.  We got checked in for my appointment and did the blood draw for the lab work portion, and then hubby whipped out some pliers and got to work.  It was nearly impossible to hold the many tiny pieces together while trying to attach it to the chair arm, but he finally got it when I helped hold them in place while he turned them.  We called the chair company and left a message for repair help to make sure everything's in place securely anyway, but it appears that we fixed it pretty good.  One hurdle cleared!

A few minutes later, it became clear to me that I would need to use the restroom before we got back home.  We still hadn't seen the doctor yet, and had ten minutes until my appointment time with him, so I asked the receptionist if there was an accessible bathroom we could use where my husband would be able to come in with me.  She recommended coming around back to the patient restrooms instead of trying to use the more public, multiple-stall restrooms in the building's common area, so we followed her back there.  I have been wanting to work on public toilet transfers in therapy, but we haven't gotten to it yet with all the walking and stairs I've been doing, but I was pretty confident my husband and I could figure out how to accomplish it safely.  It took some delicate driving to get the power chair in the door and get the door to close, then hubby had to move the garbage bin, but then we were able to get me in good position to stand up with the walker, take a step or two towards the toilet, turn around, drop my drawers and do my business.  Just in time, too.  I was worried the toilet would be kind of low to stand up from, but with one hand on the wall rail and one hand grasping my husband's for leverage, my knees had no trouble getting me up off that throne.  Drawers back up, walk forward, sit back down in the wheelchair, and we were ready to re-do the dance with the garbage bin so I could get my chair up to the sink.  Once we were all washed up, hubby folded up the walker and held the door open while I came out, just as the nurse was looking for me to take me into my appointment.  Second hurdle cleared!

We got to enjoy the impressed amazement on Dr. Chemotherapy's face when he heard about all that I've been able to do so far in physical therapy, and he confirmed the assessment of Dr. Radiation regarding my April MRI.  No growth, no shrinking, although he feels that we are still within the window that we may yet eventually see positive changes as a result of the radiation.  Then, the best news of the day:  Dr. Chemo sees no reason to begin chemo at this time.  He shares my concerns about how it will weaken and sicken me, and said that I was already doing the most important work that could be done for me right now:  getting myself up to "fighting" strength.  My cancer has a very low cell turnover rate, 5% on the scale they use to measure such things, compared to really aggressive, fast-growing tumors that could be rated above 90%, so he feels safe in continuing to monitor my progress and not do anything to slow me down at this point.  

So, we'll see him again in August.  The results of today's blood work should take about a week, and they will call me with any information about that when it comes in.  They will do blood work again in August, mainly to monitor my liver function.  Which reminds me, I asked Dr. Chemo about the stage of my cancer, because people sometimes ask me that.  Apparently staging is determined by whether or not your cancer has metastasized, so mine is unstaged because we have not determined whether that has happened or not.  He explained that we could do expensive imaging to go looking for other tumors in my body, starting with my liver since that is the most common location for this uncommon cancer, but knowing that wouldn't change our treatment plans.  We wouldn't rush off to start systemic chemotherapy just because we find cancer in my liver, because it would still be complicated by my potential blood clot issues (they are redoing those blood tests today) and we would still be waiting for me to get stronger before we attacked my body in that fashion.  So there's really not any point in trying to figure out whether my cancer has metastasized, but we will keep monitoring things like liver function to keep an eye out for signs of potential trouble.  I also get my blood oxygen saturation checked every time my home health nurse visits or I visit the doctor, since lungs are the other most common place these tumors like to hang out.  So far, all seems to be well there, too.

We made it back home without any more snags, and were feeling pretty damned pleased with ourselves.  We won't have to head back to the oncologist's for another three months, and by that time I might not even need a wheelchair to see him.  Maybe my husband's favorite part of the whole outing:  Dr. Chemo agreeing with him that we should try to get out and see a movie.  Hubby's had his eye on The Avengers.  Perhaps we'll give that a shot next weekend, we'll see!