Tuesday, January 31, 2012

Advances, in rehab and the real world

My little girls, the four year old twins, recently got new bunk beds.  This was a necessity because my amazonian daughters have grown too tall for their wee little toddler beds.  While feeling a little nostalgic for their tinier toddler days, I was excited for them to be taking this big, grown-up step, and thrilled that a friend of ours was able to help us find a beautiful set of beds for a great price.  The little princesses love their new beds, so that transition went pretty well.

Now my son, the eight year old, has had to get new shoes.  His feet are one and one-half sizes smaller than his almost thirty-three year old dad.  They are so close, hubby even took a picture of their feet next to each other because he knew I wouldn't believe him when he told me Bubby was wearing a regular size 8, not a little kid size 8.  My little man is really growing up fast, which is hard to swallow under normal circumstances, but especially lately when I feel like I'm missing so much of his life.  Thank goodness the children are visiting tomorrow night, and I intend to spend some quality time helping Bub catch up on his homework, something we always used to do together when I was at home.  Hard to believe I used to occasionally resent always being the parent that had to help with the homework, and sometimes made hubby help him do it while I made dinner, and now I want nothing more than to spend time doing spelling with my son.  

In rehab, we're continuing to make painfully slow but promising progress with my legs.  This weekend I was able to contract my left leg, bending it at the knee, as opposed to only being able to extend it previously.  On the right leg, my foot made much more noticeable movements when I tried to flex the ankle downward, with actual visible movement of the ball of my foot downward today.  And we have begun processing an adaptation that will give me greater freedom and hopefully does not end up being an accommodation for my failed recovery:  yesterday I was evaluated for a mechanical wheelchair so that I'll be able to get around for long distances without running out of arm stamina or having to be pushed.  I'm hoping with all my might that I won't need it for very long, but in the short term it will give us the freedom to do things like go shopping together and take the kids to the zoo without having to sacrifice the kids' safety (having a grown-up to hold hands with) or having to leave me at home.  It could take a couple of months to get that sort of power chair approved by insurance, though.  Keeping fingers crossed.

So, this week is full of reminders that time is marching on, not just here in rehab where I measure it by every tiny, incremental improvement, but also out there in the world, where my family are living out their days without mommie and the kids are growing up much too fast.  I need to hurry up and get better.

Friday, January 27, 2012

Forget about the fool....I pity the hoo-hah!

The phrase "a comedy of errors" has all new meaning for me today.  I knew it was not going to get off to a great start because I never had a bowel movement yesterday, and that means I would have to submit to a suppository this morning.  As uncomfortable as that is, I was willing to take that in lieu of the discomfort of another day of being bound up.  I could hardly swallow any breakfast because my stomach felt uncomfortably full of gas pressure already.  So I was almost relieved to be rolled onto my side and bracing myself for the uncomfortable but quick pressure of the nurse inserting the suppository into my bum.  You can imagine my surprised alarm when the uncomfortable quick pressure registered in my va-hoo-hah instead.  

WHOAAAA NELLY!  (I did tell you my brain speaks in all-caps, didn't I?)  I immediately informed my nurse that she had the wrong hole, and she tried to fish the thing back out.  This is an exercise in utter futility, just so you know. Suppositories are designed to melt in the hot wet environment they are intended for, and they don't really know the difference when they wind up in the wrong place.  The mortified nurse went out to consult with the doctor to find out what we should do about this problem.  Already my poor hoo-hah was beginning to burn and complain.  My therapist showed up, and I regretfully informed her that I wasn't ready to begin therapy because I'd just received a suppository in my hoo-hah.  This didn't register with her at first, so I proceeded to explain that we weren't sure how to get it back out or what to do about it.  Then it sunk in what I'd said, and she and I shared a glance that said "How does that happen?!?" which neither of us could answer.  We decided to reschedule my therapy session for tomorrow.  

When the nurse came back she said the doctor wanted us to flush my angry hoo-hah with water.  This was fundamentally objectionable to me as I was raised and educated by my ob/gyn to understand that douching is not a healthy practice for women under normal circumstances, since a woman's genitals are designed to be self-cleaning so long as you don't do things to screw up their natural pH balance and such.  But who knew what kind of damage the suppository could do, so in the end I decided to let them try to flush it out.  If you've never douched before, my hoo-hah doesn't recommend cold water for your first try.  

I ended up missing almost all of my morning therapies, and half of my lunch, since the  second suppository that we DID get in the right place kicked in right in the middle of trying to eat.  Then it was time to get ready for afternoon therapies.  I wasn't about to miss those just because of a little frustration down under, so the aides and therapists and I joked about the situation while we got me into the Hoyer lift to transfer to the wheelchair.  Humor is the best way to handle things like this sometimes, that's for sure.  I told them I didn't want to try a sliding transfer because if I got a wedgie after the morning I'd had, my hoo-hah might never forgive me, and we had a good laugh.  I went to exercise group and made it through the arm exercises okay, then was looking forward to trying some more of the surprisingly successful foot movement exercises we'd managed to squeeze in during the morning.  My right foot had pressed downward visibly!  I was super excited to try it again, but when we got to my room the transporter was waiting to take me to Radiation, so we missed that therapy session too.

We'll make up all my missed therapies tomorrow, though.  Another day, another chance to improve.  And maybe by then my hoo-hah and I will be back on speaking terms. 

Thursday, January 26, 2012

Maddening little victories

Today, while straining with nearly every muscle in my body to try to flex my right ankle, I was able to see movement in the pinky toe of my right foot.  This blows my mind on several levels.  It's a spark of hope, to be able to move any part of my right foot at all, and yet it enrages me to think of the monumental effort it takes to do that tiny little movement, when just a few weeks ago I could roll that ankle around in circles.  And oh yeah, freaking WALK with it.  

I did two slide transfers today, and that feels real good and all, but not as good as it would've felt if I could stand up for a few seconds afterward to correct the wedgie that sliding gives me.  I sit here and try to wiggle my toes, I'm staring at my foot and my whole body tenses up, and my brain is freaking out.  NOTHING'S HAPPENING, it screams at me.  I AM TALKING TO THE FOOT, AND IT'S LIKE IT'S NOT EVEN THERE.  (My brain talks in all-caps when it's on the verge of panicking.)  I find myself begging and berating my own body parts in my mind, not out loud because I don't want the therapists to think I'm completely crazy.  PLEASE MOVE, TWITCH, GIVE ME ANYTHING TO GO ON, PLEEEEASE, I'M TRYING SO HARD, WHY CAN'T YOU JUST MOVE YOU SONUVABITCH, DON'T YOU KNOW I'M TALKING TO YOU, STOP IGNORING ME DAMMIT!  

I know it's important to focus on every small achievement and gain, but I also have to acknowledge that this is really infuriating, and allow myself to deal with that rage sometimes.  My life has changed in ways I never imagined and can never go back to exactly what it was before, and the future is very uncertain.  It's only normal to feel anger and grief about that.

Tuesday, January 24, 2012

You gotta ride with the ups and downs

Today I was supposed to have my first radiation treatment at noon.  My wonderful hubby made kiddie arrangements so he could be here with me for moral support.  The morning got off to a bit of a rocky start, with me again missing out on parts of my therapy sessions due to having to go potty at inconvenient times. All lost therapy time, I should point out, must eventually get made up at other times during the same 7 day period in order to satisfy insurance requirements that all in-patient rehab patients receive the equivalent of 3 hours of therapy a day for 5 out of every 7 days.  Thus all my various bowel delays from the past week will be made up by me having extra therapy sessions on Saturday, which is okay with me because I generally feel that one day of rest, Sunday, is sufficient, whereas two days of no therapy in a row tend to make me feel like I'm losing ground by not having enough activity.  We were still able to accomplish some occupational therapy tasks though, such as practicing putting on my pants, taking off and putting on socks, and putting on a shirt, all of which count towards my weekly skill evaluation, so that's a good thing.

So anyway, this morning was already not going according to plan when the news came in that a machine in Radiation Oncology had malfunctioned and my appointment was moved to 4pm, if they would even be able to see me today at all.  This was a huge disappointment, since hubby would not be able to still be with me that late.  As always though, it's important to make the best of things, so we determined that we'd enjoy our day together, had a tasty lunch from the cafeteria, and got back to focusing on my therapies for the day instead of thinking about the delay in radiation.  And since I wound up having painful diarrhea right after lunch, it was probably actually a blessing that I wasn't in the middle of radiation transport or treatment right then!

After I got cleaned up, hubby got to watch them use the mechanical lift to put me in my wheelchair and then he had to take off.  I wheeled myself up and down the hallway again, then because my hips weren't positioned optimally in the chair we decided I needed to transfer back to the bed to reset the position of the sling that is used to lift me.  Trouble was, the sling wasn't in a good position, that's why my hips hadn't landed ideally in the chair, so we decided not to use the lift to get back into bed, we would try a slideboard transfer!  That, in case you didn't know, is a huge milestone, to be able to slide sideways from one surface to another using your arms and legs and good sitting up balance to scoot.  We tried it, and we did it!  I had 3 people helping me, but it still counts, and is a huge step toward my goal of being able to accomplish multiple sliding transfers per day by the end of the week.  Once I can do that, we will be able to get me off of the catheter and bed-pooing routine and into a more civilized pattern of getting on the commode several times a day to take care of business.  Obviously I can't wait to reach that goal!

After we got me back into the bed, I still had about 45 minutes of therapy time left, so we decided to go all out and get back in the wheelchair.  I have to roll back and forth in the bed for them to position the sling back under me, but we got the more ideal positioning of it this time, so when we did the lift and set me down in the wheelchair my hips were more comfortably squared in the seat and bearing my weight evenly.  Then I wheeled myself out to the elevator and down to the therapy gym, where we worked on the balloon-batting balancing exercises again, and we could even see an improvement in my balance from just yesterday to today.  At the end of the session I wheeled myself back to my room, where we used the lift to get back in bed rather than slide again, to conserve energy for the rescheduled radiation appointment I would hopefully still be having at 4pm.  Good thing we didn't spend a bunch of time trying a second slide, too, because less than thirty minutes later Transport arrived to take me at 3:30 instead of 4:00.  I might not have had my sweet hubby at my side, but I did have the company of my very compassionate and supportive nursing student who had been taking care of me throughout the day.  She came to Radiation with me and acted as my caring cheerleader throughout the whole process, and I was really grateful for her company.  

The session went very well, overall.  The table I have to lay on is far from comfortable, but bearable, and the hardest part was just the holding still for 15 minutes, because of course the instant you're told you can't move, five million nerves in your face immediately cry out to be scratched.  A barely existent breeze tickles your nose, there's a twitch on the outside edge of your left eyelid, the scratchy phlegm in your throat begs you to cough.  But it's only 15 minutes, and then it's over.  Totally doable.  Then a nurse gives me a bunch of stuff to read about radiation treatments and reviews the type and timing of the side effects I will likely experience, and then I'm back to my room again just in time to get my glucose checked and eat dinner.  I was so wiped out I fell asleep reading the Radiation info after eating, but overall I'm very satisfied with my day.

Monday, January 23, 2012

Just a typical day in rehab

Today was a good example of a typical day in rehab.  Things don't always go according to plan here, like me having to spend half of my scheduled morning therapy sessions laid out in bed trying to go potty.  But after the lows there are almost always highs, like this afternoon when we used a mechanical lift to get me into my wheelchair.  Then I got to wheel myself up and down the hallway, and even go down to the therapy gym to do some trunk strengthening exercises that help the body to stay balanced while sitting upright.  It was the first time I left my room since transferring into rehab, with the exception of being rolled out of here on a gurney for my radiation consultation the other day.  The freedom, the liberated feeling of moving around under my own steam, even if by wheelchair instead of walking, was fantastic.  Afterward my therapist helped move my legs through a series of exercises to give the muscles the feeling of movement even though I couldn't initiate the motions myself.  It also felt fantastic, finally giving me that sensation of muscular warmth that indicates that a beneficial workout was done.  Plus I launched this blog, so, all in all, a pretty awesome day. :)

What is dignity?

I have debated whether to share these thoughts with all of you in my mind.  This is not a subject most people are comfortable with.  Some of you may wish to stop reading right now, but I've come to the conclusion that to cope I need to write, and if I'm going to bother writing, I owe it to those who love and support me to write honestly and to share it with them.  You won't offend me if you don't read this, and if you do choose to keep reading, I hope you won't be offended either.

There were times over the past few days when I thought I must not have any scrap of dignity left.  As part of the testing for nerve damage caused by my tumors, every part of my body, and I do mean every part, has been poked by needles, revealing that certain critically important muscles and nerves in my bum (among other areas) are not fully functional.  In addition, my legs do not yet work well enough to get out of bed.  As a result, I have gone through humiliating days of having to relieve my bowels in bed, sometimes uncontrollably, and often quite painfully.  This illness, I started to think, is going to rob me of every shred of self-respect I have left.  But I've started to realize that those thoughts are self-pitying poo-poo (haha, see what I did there?), and I'm reconsidering what I thought I knew about my dignity.

What is dignity, really? Is it dignified to always use a toilet and bath tissue and never face anything more challenging than making sure you don't run out of the latter?  Is it undignified to do what must be done, and accept help from others, no matter how ugly things get?  What about my roommate with the colostomy, an intestinal opening created in her side to bypass the colon, so that her digested food constantly exits her body through a surgically-created valve and empties into a problematic bag system that constantly leaks and needs regular emptying... and yet she stoically greets each day with a positive attitude and cheerfully chats with her nurses and aides while they constantly try to manage her unstable intestinal situation.  There is no doubt in my mind that she still has her dignity, despite the inglorious medical issues she suffers through.  If she still has hers, maybe I still have mine too.  Maybe keeping my dignity means not letting this shit get me down.  It's staying focused on the goals, working towards getting out of bed every time I have to "go" instead of dwelling on the depressing method I'm currently stuck with.  Maybe there's dignity in letting people help me, letting them see me cry sometimes, and letting them comfort me when they do.  Maybe I'm not defined by how I potty or who wipes my butt.  Maybe all this is only undignified if I let it be, and maybe from now on I won't let it.

Today is Sunday and there wasn't any therapy scheduled.  But I did my arm exercises anyway.  I'm gonna need their strength to drag my useless butt out of bed and onto a toilet by my goal of the end of this week. 

Some people who read this note on Facebook thought I was amazing, and encouraged me to develop this blog in order to share my writing with others going through the same thing but perhaps not able to express what they were feeling and experiencing.  I appreciate that encouragement, it got me to start this blog, but I'm not so sure that I'm amazing. If someone reads this blog, and thinks "Yes! That's what I wish I could say to my family or my doctor or my friends," or "Holy cow! I had no idea so-and-so that I know with cancer or a spinal cord injury or both was going through things like that," then that would be pretty amazing. Here's what I have to say about the truly amazing people in my life:

This hospital is full of amazing people. A lot of them are patients, but a lot more of them are caregivers. People who have the compassion and humor to do things like wipe an adult's bottom without ever making it seem like a burden or a disgusting chore. This would be unbearable without them. And without you all, who constantly uplift me with your comments and Likes. To my friends and relatives who make meals for my family and babysit my children and constantly send me encouraging words and thoughts and prayers:  Thank you!

No, I am not freaking "okay"

It took a week of anxious waiting to get my pathology results back.  A nurse had to follow-up with questions and translate the answers back to me before my surgeon's explanation that the tumors were cancer finally sunk in with me.  I began to meet with oncologists who specialized in radiation and chemotherapy to discuss potential treatment plans.  I was still in the neurosurgery ICU, my legs still not working, my doctors juggling the delicate task of balancing my need to stop bleeding and start healing from surgery with the need to prevent my blood from forming dangerous clots.  One morning they came in and told me I would be having another MRI, to give radiation a good baseline set of post-surgery images to plan their treatment from.  The instant they told me this I began to feel nauseous.  I cancelled my lunch tray, knowing I would not do well with all that anxiety if I had a stomach full of food.  The following is an account of my MRI experience, showing just how claustrophobic and anxious I have become.

They give me zofran (for nausea) and 10mg of Valium before I leave my room.  I have skipped lunch in order to not have a stomach full of food when they take me down to the MRI.  When we reach the prep room where I'm transferred to the scanning table, I am already crying, half from the anxiety about the upcoming claustrophobic nightmare, half from bitter anger at myself for letting my own mind put me in this state every damn time.  They put my head in the hard little cradle and try to put a wedge under my knees to prevent the painful, picture-interrupting spasms that randomly plague my legs and feet. 

I am relieved to hear that I will not be required to wear the panic-inducing face mask used in cervical scans, as this one is just thoracic.  Until I get in front of the machine and the tech tells me he gets better pictures with the mask on.  I politely inform him that it's out of the question, and he decides we can see how good the pictures look and then if necessary convince me to put the horrid mask on.  I am not told how many minutes this will take, although I ask ("As short as we can possibly make it," they dodge).  A little last minute positioning, earplugs put in, and we get started.  

The tight machine crushes my arms against my body, and immediately the soundwaves bombarding me begin to elevate my body temperature.  This is "normal," which I guess is supposed to mean it shouldn't terrify me and make me feel that I am steadily roasting in a tiny coffin.  Within minutes I am silently begging for it to be over, but I hold on as long as I can possibly stand it.  An unknown amount of time that is at least 30 minutes goes by, as much as I can guess by the elapsed time later, and when I can't stand it anymore I start asking them to let me out.  

The pinching of the walls against my arms has made my hands go numb, and I am terrified that too many minutes this way will cause permanent nerve damage of the kind I already have so much of in my body.  I feel like I'm on fire. I MUST get out.  In the silences between each set of picture-taking noises I plead with them to let me out. No one answers.  I call out that I'm much too hot, that I can't feel my hands, that I can't take it anymore, raising my voice louder and louder.  I suddenly realize they have forgotten to give me the panic button, and that probably no one can hear me at all.  That is when I start screaming, and trying desperately to move my stupid legs which are the only things they can see sticking out of the machine, and I am still screaming when they come in to administer the contrast dye and realize that something's wrong. 

To his credit, the tech apologizes profusely for forgetting to give me the panic button and repeats at least half a dozen times that the rise in body temperature is normal, and holds my hand until I can feel it again.  I am sobbing and trying to get my lungs to just inhale and exhale in some kind of pattern that will keep me conscious.  They have summoned my nurse to drug me up more so I can make it through the 13 minute, 11 second contrast dye session.  Atavan, or something like that.  The tech wants to know if I'm going to be okay.  I tell him no, I am not okay, but we have to finish and he swears it's only 15 minutes...  I get calmed down and they give me the contrast so we can start again. My legs are getting spastic, my baclofen (anti-spasm med) has apparently warn off.  So despite the Atavan and my resolve to make it through to the end (I count seconds for almost every one of those 14 minutes) the spasms in my legs probably ruined half the contrast pictures anyway.  But apologetic techman assures me the first round of pictures (despite my freaked out hollering) look really clear and are of great quality.  

When it's over I'm drained and ashamed. I hate that I have this weakness, this total inability to cope with what is going to be a very frequent procedure in my fight with cancer.  I am low enough to want to ask one of them, any of the staff milling around transferring me from the scan table to my bed, taking in the next patient, telling someone to get Transport down here to take me back to my room, to please hug me, I just really need a hug, but I say nothing, except to ask for some Kleenex.  "These are not the hugs you're looking for," Obi-Wan says in my head, and he's right. My hugs -hubby and the kids- will come see me tomorrow.

The Long Road

After the spinal fusion surgery, I spent weeks in rehab.  At first my shoulders were in terrible pain, so that after pushing myself to complete my daily exercises I would often be in tears.  Oxycodone was required to make it through my therapy sessions.  Progress was slow at first, hampered by setbacks like pulmonary embolisms and days when my legs regressed in weakness.  But eventually we started to see a steady upswing, and I began to be able to walk further and further with my walker, and even to practice small stairs, and we began to plan for me to go home, with a few important adaptations like converting the front doorsteps into a system of ramps so I could use the wheelchair, and eventually my walker, to get into the house instead of attempting the dangerous and physically almost impossible stairs.  I busted my tail off in therapy, and finally got a release date right before Christmas.  After missing Thanksgiving and my son's 8th birthday, we were overjoyed that I'd be home for this important family holiday.  My mom was even coming back to town to help me transition home, so Christmas was going to be extra special this year.

After we got home, physical and occupational therapists began visiting on schedule. We got presents wrapped for Christmas and planned our holiday dinner.  I was thrilled to be able to help prepare the meal (sitting down, of course).  Christmas day came and the meal, partly made by us and partly by the wonderful members of hubby's family who shared it with us, was a fantastic feast, and we all had a great time.  After Christmas, though, I began to notice increasing weakness in my legs again.

I kept trying to tell myself it was just another normal fluctuation, the kind of occasional regression we had seen before and that in a couple of days I would wake up feeling stronger and able to do all my recovered activities again.  But it kept getting worse instead of better, and as we entered the New Year's holiday weekend, things were starting to get pretty difficult.  I went from being able to walk about 10 feet on Friday (pathetic compared to the 55ft I had managed only a week before) to not being able to even stand up, much less walk, by Sunday afternoon.  We had to bring my bathtub transfer bench downstairs and use it as a bridge I could slide along to get from the couch to the commode and back again, as standing and walking became completely impossible.  When my therapists returned after the holiday on Tuesday, they were shocked at how far I had regressed, and immediately recommended that I return to the hospital to consult with my surgeon, and that going in through the ER was the best course of action.  Since we had no way of getting me to the car, or into it if we could get me there, we went ahead and called for an ambulance, and came back to the hospital to find out why I had so quickly lost all that I'd worked so many weeks to achieve.  I was in tears, frustrated beyond measure that I had given up all those weeks with my family to get better and then lost it all again in a matter of days.  

Since we came to the ER in the morning, I didn't have any pain medications that day.  After enduring hours of pain and discomfort in the ER I was finally given morphine, and CT scans were done.  MRI was wanted too, but the table was malfunctioning, so I had to wait until almost five in the morning to be taken down to that hellish ordeal.  You see, over the past year I had become quite claustrophobic without realizing it, and each time I had an MRI - which involves squeezing my over-sized body into a tiny tube that reminds me of being inside a coffin - my anxiety and fears became increasingly worse.  It's probably a swelling problem again, I thought.  Here we go with another cycle of Decadron probably, and maybe I'll need some more therapy to get stronger again, perhaps.  That's the worst that could happen, surely.  

After the MRI, my surgeon came to see me.  There was a soft tissue mass compressing my spinal cord, he said, and he needed to operate immediately to decompress the cord by removing the mass and find out what it was.  Sounded kinda scary, but I was still thinking things like scar tissue, fluid pockets from the healing of the previous surgeries, swelling, nothing all that alarming.  I was not prepared to wake up from surgery and be told that he found tumors, that he wasn't able to completely remove them, and that we would need to wait for pathology results to find out if they were malignant or not.  And I wasn't prepared to wake up from surgery and feel absolutely no improvement in my legs, I could still scarcely move them at all, and began to fear how much, if any, of their control I would eventually get back.

A Beautiful Dream

A couple of nights before my November surgery, I had the following dream:

I was awake after my surgery on Tuesday, very alert and not in pain so it could have been many hours post-op or the next day, since the room was bright and sunny.  I was laying on my right side facing my doctors and nurses, who were asking me to get ready to stand up and try a few steps.  Someone checked the bandage on my incision, where I felt some rigidity in my body but no real pain or discomfort, and then I swung my legs off the edge of the bed and sat up easily. 

My walker was to my left, and I glanced at it, but the surgeon shook his head and indicated I should attempt to stand and walk on my own without it.  I set my bare feet on the floor, and immediately noticed it felt cold and that all the tingling was gone from my feet and toes, which I happily reported aloud to the team watching me.  Then I stood up, and began taking my first steps. My balance wavered just a tiny bit and my leg and upper body muscles remembered immediately how to work together to straighten and correct it, and then I was slowly walking, each step more sure than the one before it.  Everyone was pleased and looked like this is exactly what they had expected me to be able to do. I walked the hallway with my beaming husband beside me, a nurse on my other side, until I returned to my room, and the dream ended.

Some of you may not know this, but ever since I was very little, maybe about 3 years old, I have sometimes had dreams that later came true.  I never can tell if a dream is "that kind" of dream when I'm having it, the realization unfolds later when the dream events begin happening around me and I recognize them.  Sometimes I remember enough of the dream to know what will happen, others I remember the dream late and recognize them after they are done.  My favorite was the dream that told me where my big brother was going to steal and hide my favorite blankie from me, and my joy and victory at knowing exactly where to go get it made him so mad!  Sometimes the dreams are years in advance of the events, like when I dreamt in kindergarten of myself sitting at a group table with two of my friends, only I didn't recognize them, and we didn't seem to be doing the same activities I usually did at that group table each day.   It took twelve years and joining the Peer Counselor program to send me back to that classroom and sit at that table with friends I met when I was older, helping our little kid partners, before the dream finally made sense.  Needless to say I hoped this dream was one of those special ones, and that it wouldn't take years in coming true! :)

Going nowhere fast

Weeks went by, and the Decadron cycle continued.  Most days, when I was on it, I could walk with the walker, sometimes even manage the stairs.  When I was titrating off of it, I would get weaker and weaker, until I couldn't do the stairs or even hardly walk again.  By the end of October it seemed like the cycle was unchanging and little improvement was being made in physical therapy, so I pressed my neurosurgeon to make a decision:  would more surgery help, and could he do it?  The answer was yes and no.  So he gave me a referral to another surgeon with access to better medical equipment for operating room imaging, and we were delighted to get an appointment with the well-respected new surgeon within a week's time.  This wonderful man was certain that my spine needed to be stabilized to prevent further injury to the cord, recommended spinal fusion with titanium hardware, and felt confident that he could perform this surgery successfully.  We were impressed with his confidence and expertise, and felt great optimism that this surgery would at least stabilize my situation, if not make great improvements in my leg strength and mobility.  Best of all, he was available to do the surgery in just a few days, and afterward I would be able to participate in weeks of thorough, intensive in-patient physical therapy to rebuild my body.  We began to prepare.

September 2011 - Still hopeful...

Here's the update I gave my family and co-workers in September.  I kept having to go back on the Decadron steroid, because each time we weaned off of it, it would seem that the swelling around my spine returned because my legs would get weaker and quit working again.  That cycle of constantly taking Decadron, which raises your blood sugar, would eventually push my system to its limits and tip me over the "pre-diabetic" cliff into full diabetes.

"I'm apparently going to be stuck at home a while longer while my nerves heal to fully restore all the feeling in my feet. The doc says this will just take time. Nerves regenerate verrry slowly compared to other kinds of tissue.  In fact the nerves in my abdomen that were damaged during the Aug. 5 surgery (more than a month ago) have just begun to repair enough to restore feeling to the skin of my stomach (so I can now begin to feel all the black and purple bruises my daily anti-coagulant injections give me LOL). Yesterday's scans showed no change in the fractured vertebra so it has not compressed any further; this stability is a good thing, but it still has more healing and strengthening to do. I will have repeat scans in 4 more weeks, and the surgeon still feels that more surgery in this area of my back would be extremely difficult and risky, and only looked at as a last resort.  In the meantime I will continue to work hard at physical therapy to rebuild the strength and stamina of my legs as much as I can, and maybe that stimulation is also beneficial to my feet."

Um, my legs feel weird...

A couple weeks after the seemingly successful August surgery, things started to get a little strange.  I would be walking along in a straight line, and when I went to turn another direction, I would feel....wobbly, like I almost lost my balance while turning.  Then, over a period of about 48 hours, it seemed like my legs gradually transformed into rubber.  It started with some tingling in my toes, and worked its way up, until I could scarcely feel anything from the hip down.  Walking was nearly impossible, my husband basically had to half drag me to the car to get me to the emergency MRI my neurosurgeon's assistant had scheduled.  The images would reveal that the remaining bone in my T3 had collapsed, crushing the balloon full of cement, and that debris from this fracture, along with swelling from the injury, were compressing my spinal cord, causing the terrifying new weakness and numbness in my legs.  After the scan I was admitted to the hospital and introduced to the diabetes-inducing miracle inflammation fixer: the steroid Decadron.  Within another 48 hours on that drug the feeling began to return to my legs, I was given a walker and set up with physical and occupational therapy visits at home, and after a week in the hospital, was released to go home and relearn walking and stair-climbing.  This is just a temporary set-back, we told ourselves. 

I was so confident in my quick recovery that I got a little too cocky and wound up causing myself all kinds of unnecessary pain and inconvenience when I tried to go inside the house from the car without hubby's help.  My knees sometimes would bend and give out from under me when they shouldn't, and when one of them did that on the stairs going into the house, I fell and broke my arm. Talk about feeling foolish, and what a hassle!  Four weeks with my arm in a partial cast meant I had to get a special adaptation for my walker that would let me lean my forearm into a platform instead of trying to put weight through my wrist joint.  I certainly learned an important lesson about not trying to be too independent after that fiasco.  But still, as my arm healed and I got better at using the walker, we were convinced that in another few weeks or so, my strength would return and all would go back to normal.  

We couldn't have been more wrong. 

Bubby, the best son ever

One night in August, recovering from my surgery, I had occasion to be totally humbled and yet full of pride all at the same time.  Here's what I wrote that evening:

All full of my great recovery so far, tonight I tried to take the girls to go potty before bedtime. The slight angle of bending forward required was too painful for me. Full of chagrin, because only my own pride kept me from having anyone here to assist me tonight, I had no one to ask to help me but my 7 yr old son. Without complaint and with utter cheerfulness, he took his half-naked 3yr old sister to the bathroom and helped her go potty, then sang the ABC's with her as they washed their hands together afterward. I put her pull-ups on her, and kissed them all good night, and squeezed him so hard and told him I could not explain how grateful I was for his help and how proud I am of him. I am brought to tears by his simple kindness, his ability to have so much goodness in him. So proud and lucky to be his mama.

Thinking we had it all figured out

After the x-rays didn't show much, we went on to have MRI, and that's when the real problem became apparent:  a mass that turned out to be a benign blood vessel tumor (hemangioma) had taken over my T3 so thoroughly that it lost structural integrity and collapsed.  In early August I had surgery to remove the tumor, along with the destroyed sections of bone, and insert a balloon of cement to help strengthen T3.  Months of intense back pain and troubling neurological problems in my arms and shoulders were immediately improved, and we all felt a great sense of relief, and hope that we could now put all this behind us.  Surely I would quickly recover from surgery and soon be able to return to work, right?

June 2011 - Still trying to figure out the problem

Here are some highlights from a doctor's visit last June, before we fully understood what was going on with my back problems.

1.  My 7 yr old son, let's call him Bubby, had to be left in charge of his 3 yr old sisters in a mostly secluded Lab waiting area while I had X-rays taken.  He did a fantastic job of keeping them happy and all 3 of them behaved.  I was very proud.

2.  One of my daughters (nicknamed Bandit for her toy-thieving), while the twins accompanied me to the restroom because I felt they were too young to leave in the main, really public waiting area alone, said:  "Nice bottom, Mom."  I said, "Thank you, Bandit" because what else could I say? It was all I could do to keep a straight face.

3.  Our older twin is usually the socialite that makes all the introductions, but one minute younger and slightly smaller Little Bit likes to get hers in now and then too, and both of them like to talk about their family members as "friends" which I think they feel is more grown-up.  On this day Little Bit introduced me to the other family that joined us in the Lab waiting area shortly before we finished up there:  "And this is my Mom that is a [Mrs C]-friend!"  She remembered her daddy's name, too.

4.  To my relief, my X-rays did not reveal any glaringly obvious disc compressions or vertebral fusions.  Obviously they will still have to be read by a specialist, but that was some comfort to both the on-call doctor and me.  Of great concern to us both was the extra line of bone-like material running almost the entire length of my spine on my left side.  No one who looked at it had any idea what it was, and everyone is greatly interested in what the ortho surgeon will think of it when I see him on Thursday.  The on-call doctor's only guess was that it was a calcified artery, although my excellent history of good blood pressure and reasonable cholesterol didn't immediately support that theory.  So it remains to be seen what the column of bone-like substance next to my spine is, but it seems very probable to me that it could be related to the tremendous pain and reduced mobility of that area.

Note: It would eventually be concluded, much later on, that the mysterious "extra" bone line was actually the overlapping image of my sternum, superimposed over the image of my spine in the frontal x-ray.  Since no one had tried to count my vertebrae in these x-rays, it was not at all apparent at this time that my third thoracic vertebra, called T3, was completely collapsed, and now occupied no more space than what a normal disc gap would look like on x-ray.


This blog is the result of my own need to journalize my experiences in order to cope with them, and the hope that perhaps my ability to voice these things will help others who struggle to express the same feelings, or help their families better understand what their loved ones are enduring.  And maybe just bring a little hope to people who are struggling to find the bright side in dark situations.

It all started with a little bit of back pain, back in the early spring of 2010.  The pain felt like a muscle spasm, a tightness and aching in the center of my shoulder blades that seemed to radiate out to my left shoulder.  As the pain got worse, other symptoms appeared such as electrical tingles in my shoulder, burning/itching/stinging sensations in my underarm area, and increasing difficulty with lifting.  It began to be too painful to lay down flat, and after weeks of restless struggling to sleep laying down in bed in constant pain, I finally gave up and started sleeping upright on the couch recliner.  I was seeing my general practitioner for pain management and inflammation meds, plus seeing my chiropractor and massage therapist monthly and then every couple of weeks to try to manage what we all thought was a severe muscle spasm that probably pinched a nerve in my back.  

When it became clear that all our combined efforts were barely making it possible for me to tolerate the pain but not relieving the underlying causes of it, I went back to my general practitioner to ask what else we could do to identify and truly correct my problem, and it was decided that x-rays would be the way to start.  Thus began our journey of frightening discoveries.