Tuesday, November 10, 2009


I thought because of the previous surgeries I'd weathered I was the 'comeback kid;' able to handle anything that came my way. God Laughs.

A spinal tumor had been slow growing for years. But there's not much room in that little 'ole chord, ya know? Complicating this fact were doctors telling me 1) I may never walk again, and 2) the surgery would be a beast. (No kidden'), and they recommended I wait as long as I could. Shit. The onus is on me to make that call. I'm a pretty tough cookie and a stoic person, so I hold off until it's pretty obvious I can't put it off much longer. I shouldn't have waited so long.

Wonderful Excy, now in charge of all things medical like insurance and finding surgeons for us to interview so that all I have to do is make the final decision, recover, and work towards a 'new normal,' finds the perfect surgeon after we try MD Anderson and UAMS. Unfortunately he's in MD at Johns Hopkins. So we sell a nice new truck. At least our Burnside relatives are nearby and we can stay with them. The day before I leave I spend interviewing people for a brochure I'm writing for a college on the side freelance, and a friend's husband is found dead in his hotel room in China. She's Chinese-Indonesian and lost, so we spend the afternoon tracking down officials who can return his body, and I spend the next day's plane trip writing the obituary and wishing I could stay home to be helpful.

At John Hopkins (JH), the imminent surgeon thinks we just might get lucky and take care of this tumor by embolizing it.* The procedure worked in that the tendrils of the tumor wrapped around the spinal cord died off, but surgery was still required to pluck it out like a cherry from inside the spinal cord. When I came out of the procedure I kept asking Excy why I was in such pain and he would explain all over again that I had surgery as well. Looking back, it was pretty funny. ICU was no joke, however. The first night no nurses were to be found on the floor. Zero. Zip. Nada. My room mate was Asian, spoke no
English, and appeared to be alone. She began banging her head against the guard rails of her bed she was in such pain. Excy finally tracked them down in a break room, backs turned against the monitors. He told them my room mate was trying to kill herself. They were annoyed at being interrupted and told him 'visiting' hours were over long ago.

I'll tell you something about Excy. He doesn't emote. He doesn't get angry. He is never, ever rude. His answer to my hospitalizations, at least after the surgeries, is to simply ignore anyone who tries to get him to leave my side. He can weigh such a charm offensive (and fetches ice and sodas from other floors for the nurses) that they fall in love with him and end up finding him cots and extra pillows. It helps that he's a tall good-looking cowboy. So no one usually tries to kick him out very hard. But when he runs up against a Nurse Ratched -- and they are out there -- they never win the round. (Fortunately there are far more wonderful, hardworking nurses than bad ones out there. But law of averages abounds. Just sayen'...)

The next day I was being moved to another floor in a gurney and the nurse rammed the bed into a wall. Holy mother of god. I still remember the pain. Then --she did it again! No apologies. The floor nurses wondered why I couldn't stop moaning. It took a lot of morphine that day. At least on that floor I didn't feel they were trying to kill me. I don't like nurses in the room, seldom use my call button until it's time for meds, and want to be left alone, in short, not a needy patient. But this was odd. Finally Excy's cousin by marriage, the head of gynecology then, began popping by, which made the nurses nervous, and they seemed to shape up. We couldn't fly home so went to Court and Sally's new house on Burnside and I stayed in their comfortable upstairs guest bed all through Christmas and New Years. I have spent too many holidays away from family in hospitals.

We had driven to MD, so Excy drove home and a good friend came up to accompany me home on a flight. Careful arrangements were made for a nonstop flight that should have taken 3 hours total. Propped up in a wheelchair, C. gave me a lot of pain pills and off we went. Weather was horrible across the country and after 9 hours we ended up in TX. At 10 p.m. we had the option of either getting a hotel room for the night or pressing on to AR. I was dissolving into tears I felt so horrible, and C. drew herself up, looked me in the eye, and said she was giving me a fist-full of pills and we WERE going home that night. Thank god for C. She did a yeoman's job -- getting travel arrangements changed when the weather and delays bounced us around the country, and taking care of luggage and a hurting friend in a wheelchair. She's a tiger when she has to be.

Four weeks after we got home the pain was getting worse. Nerve damage from the surgery developed into RSD (reflex sympathetic dystrophy), which affected my entire right leg and lower back. I couldn't put any weight on my right foot, it was so big I could only wear a Birkenstock sandal, and I couldn't sit, sleep, or stand longer than 5 minutes without pain. Trips to town to the dr. had to be accomplished riding in the backseat and pulling over to the side of the road so I could walk about. Thank god we lived in the country, because I could go outside and scream at the top of my lungs until I grew tired and weak and Excy would carry me inside. For the first time in my life I understood suicide. I knew if this was what the future held, I couldn't deal.

After 3 months I found a pain doctor who switched meds, and things improved, but I spent a total of 18 months basically house-bound when I wasn't at PT or the therapy pool. I was on a walker but gradually at the end of the year graduated to a cane. On good days I walk without one when I don't mind weaving around, though I need an arm to step off curbs and stuff like that. I drive with hand controls. Oxycontin, or OxyIR, is taken every day, sometimes twice a day, along with other meds, but they keep me relatively active. When we remodeled the house Excy made it an ADA house and I have a therapy pool and a Pilates table. I have had acupuncture now since '92. All these things help a lot.

I was proud of how I was walking and thought I was doing a pretty good job when one day I was walking across the Kroger parking lot and a woman came up to me (being disabled, you seem to join this 'club,' whether you want to or not), and she said "Hon, I've been watchen' yu for weeks now, an I just wanna know, how did yu larn ta walk so well on that artificial leg of yorn?" Oops. Guess I wasn't walking as well as I thought after all. I'm a little like a cowpoke sidekick -- but - I'm not in a wheelchair, so I guess I'm doing something right. I had to go on disability from Winrock. I miss my career, but freelance and being home has forced me to go into a more creative bent. I wish I felt well enough to do more though.

Since then I have had some rough surgeries but so far nothing has equaled that year. It seems surreal now. Words can't really touch it. I found my journal from that year awhile back, and on some pages I had written: I'm in pain I'm in pain...over and over again, which freaked me out. Made me think of that character losing it in The Shining.....
Next installment: 2001

* I wish they would just stop saying this and getting my hopes up. I have never been able to have the nifty laser, stereotactic and whatever the hell less invasive surgery there is out there....


tattytiara said...

Woah. Glad you've got an Excy to take such good care of you hon.

PaperbackWriter said...

Hun, you are a hero in the greatest way after suffering through that year.
Many times I just have to remember the bad to to feel good about a long run of better days.

Keep it up and enjoy your normal and forget ppl that just don't get it.

e said...

I'm glad you've got someone who can help deal and create an ADA house for you; you are so fortunate...

I hope that and other things restore some stability in your life and keep you as well and happy as you can be.

strokeofliving said...

I remember my "journey" from being terrified at home to the hospital to a wheelchair to a walker to cane to an AFO to nothing but hobbling. And you're not alone sister; I too am a member of the 'club.' Little old ladies always approach me in the mall or the super market asking me what happened to me and if I have Lupus. ALL THE TIME. One woman saw me in the mall and told me that I had courage to be walking around alone in public. Because she wouldn't have 'the nerve.'

Well wasn't it nervy of her to approach me [a stranger] with such drivel in the first place? And honestly how much 'nerve' does it take for me to live my life?

I'm glad that you found your journal to keep the memory of your ordeal fresh enough to induce your current literary style. Okay now I'm ready for 2001,

I'm like a crack addict hun?

Anonymous said...

You're stron and smart, and a talented writer too. Keep optimistic!

Eva Gallant said...

Wow, what an ordeal! Glad you've made it so far!


Hello mon cherie, a kiss on you!
Come back, keep following me ;)

"I'd like my work to let the person who wears it be whatever she is" - Haider Ackermann
@ MaisonChaplin.blogspot.com

Deborah said...

You are lucky to be so brave and too never have given up. Thank you sharing this with us. It will help people realize that they can go through much more than you ever think possible.


that is an incredible story and makes me grateful for my health but scared that i don't have any insurance

Charisse and Holly said...

It is really sobering to read this. I complain about mild menstrual cramps, or a headache that takes 1 Excedrin to conquer. The closest I've ever come to real pain was kidney stones. That SUCKED! But still, comparitively...that was like popping a zit. Come over for a visit. Holly at lifelaughlatte

e said...

I'm a a lifelong member of the club you and another commenter mention. I forgot to say that in my previous posting. I also use a wheelchair now which gives me mobility that I otherwise would not have. The worst thing I've encountered since using the chair is the perceptions of others regarding both it and me.

Like yours, my life has taken many turns, but it is far from over because I now have a set of wheels. Part of what I've learned is that we all find ways to adapt and go on, no matter what.

You, dear Whye, are a sterling example of humour, intelligence, wit and compassion. Thanks for your visit.

Sara said...

Good grief. It sounds like '97 was a pretty piss-poor year for you. It also sounds like you came through it like a champ.

And you even managed to toss in vocab words like 'onus' and 'stoic.'

You're an impressive lady.

kys said...

I'm glad you had/have your husband's support through all this. This is making me thankful for my Fibro. It could be worse.